Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers

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Design and layout by Jean-Claude Fattier Printed in Switzerland Photograph credits (cover images starting from top-right, in anti-clockwise direction): 1. © WHO PAHO Carlos Gaggero 2. © WHO/SEARO/Anuradha Sarup 3. © WHO/SEARO/Hayley Goldbach 4. ©WHO/PAHO/Victor Ariscain 5. © WHO/TDR/Andy Craggs 6. © WHO/Chris de Bode 7. © WH /Fid Thompson 8. © WHO/SEARO/Anuradha Sarup Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers ISBN 978-92-4-151445-3 iii A WHO guide for health-care planners, implementers and managers Contents Abbreviations and acronyms ------------------------------------------------------------------------------ v Acknowledgements ----------------------------------------------------------------------------------------- vi Foreword ----------------------------------------------------------------------------------------------- vii Introduction ------------------------------------------------------------------------------------------------- 1 Chapter 1. What is paediatric palliative care ----------------------------------------------------------- 5 Chapter 2. Access to palliative care and symptom relief ------------------------------------------ 15 Chapter 3. Palliative care and symptom relief as part of comprehensive paediatric care - 21 Chapter 4. Essential package of paediatric palliative care and symptom relief (ep pED) - 25 Chapter 5. Implementing PPC and symptom relief -------------------------------------------------- 35 Chapter 6. Ensuring access to essential medicines -------------------------------------------------- 47 Chapter 7. Integration of palliative care and symptom relief can strengthen health care systems and promote UHC ---------------------------------------------- 51 Chapter 8. Research and quality improvement in paediatric palliative care ------------------ 55 References ------------------------------------------------------------------------------------------------60 Annexes Annex 1 Adopted and opened for signature, ratification and accession by United Nations General Assembly resolution 44/25 of 20 November 1989 --------------------------------------------------------- 67 Annex 2 Seventieth World Health Assembly resolution WHA70.12 on Cancer prevention and control in the context of an integrated approach (excerpts) ------------------------------------------------------- 69 Annex 3 Child-friendly health care: a manual for health workers (excerpts) ------------------------------------- 70 Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course ------------------------------ 73 Annex 5 Sample curricula in paediatric palliative care -----------------------------------------------------------------78 Annex 6 Links --------------------------------------------------------------------------------------------------------------- 83 Annex 7 Glossary ---------------------------------------------------------------------------------------------------------- 86

vA WHO guide for health-care planners, implementers and managers Abbreviations and acronyms AIDS acquired immunodeficiency virus APCA African Palliative Care Association CFHI Child Friendly Healthcare Initiative CHC community health centre CHW community health worker EAPC European Association for Palliative Care EP Ped Essential Package of Palliative Care for Paediatrics and Symptom Relief GP general practitioner HIC high-income country HIV human immunodeficiency virus ICPCN International Children’s Palliative Care Network IDT interdisciplinary [palliative care] team INCB International Narcotics Control Board LMIC low- and middle-income country MoH Ministry of Health NCD noncommunicable disease NGO nongovernmental organization PHC primary health care PPC paediatric palliative care SDG Sustainable Development Goal SSRI selective serotonin reuptake inhibitor UHC universal health coverage UN United Nations WHA World Health Assembly WHO World Health Organization Integrating palliative care and symptom relief into paediatrics vi Acknowledgements Development of this guide was coordinated by Eric Krakauer with overall supervision by Marie-Charlotte Bouësseau and Edward Kelley from the WHO Department of Service Delivery and Safety. WHO is grateful to the principal writing team consisted of Jim Cleary (University of Wisconsin, USA), Stephen Connor (Worldwide Hospice Palliative Care Alliance), Julia Downing (International Children’s Palliative Care Network/Makerere University, Uganda), Stefan Friedrichsdorf (Children’s Hospitals and Clinics of Minnesota, USA), Rut Kiman (Hospital National “Prof. A. Posadas”, Argentina), Eric Krakauer (WHO), Ella Kumirova (Dmitri Rogachen National Center of Pediatric Hematology, Oncology and Immunology, Russian Federation), Joan Marston (Palliative Care in Humanitarian Aid Situations & Emergencies (PALCHASE)), Michelle Meiring (Paedspal and the University of Cape Town, Republic of South Africa), Sadath Sayeed (Boston Children’s Hospital and Harvard Medical School, USA), Meaghann Weaver (Hand In Hand/Pediatric Palliative Care). WHO acknowledges the valuable contributions provided by Emily B. Esmaili (Duke University, USA), Nancy Hutton (Johns Hopkins University School of Medicine, USA), Bui Thanh Huyen (University of Medicine & Pharmacy at Ho Chi Minh City, Vietnam), Hatoko Sasaki (National Center for Child and Development, Japan), Noyuri Yamaji (St. Luke’s International University Graduate School of Nursing, Japan); as well as the helpful comments of Natalia Arias, Justin Baker, Juan Pablo Beca, Mercedes Bernadá, Silvina Bevilacqua, Carlos Centeno, Megan Doherty, Hernan Garcia, Eduardo Garralda, Catherine Habashy, Nago Humbert, Jenny Hunt, Erica Kaye, Suresh Kumar, Emmanuel Luyurika, Alexandra Mancini, Regina Okhuysen-Cawley, Roberta Ortiz, Rojim J Sorrosa, Rodolfo Verna, Joanne Wolfe. An additional contributor from WHO was Cherian Varghese. This publication was kindly financed by the True Colours Trust. vii A WHO guide for health-care planners, implementers and managers Foreword The World Health Assembly has resolved that providing access to palliative care for children is “an ethical responsibility of health systems” and that integration of palliative care into public health-care systems is essential for achievement of the Sustainable Development Goal on universal health coverage (WHA 67.19). Yet access to paediatric palliative care and symptom relief is very rare in a number of countries. As a result, millions of the world’s vulnerable children suffer unnecessarily each year. A wide range of childhood health problems can generate the need for palliative care and symptom relief including not only advanced noncommunicable disease and HIV/AIDS, but also severe prematurity, birth trauma, congenital anomalies, severe non-progressive disabilities such as paraplegia and quadriplegia, drug-resistant tuberculosis and injuries. Paediatric palliative care requires special knowledge and skills, and it is essential that all providers of primary health care for children and paediatric specialty care possess these competencies. This document is part of a series of WHO publications on palliative care. Their objective is not to provide clinical guidelines, but rather practical guidance on integrating palliative care and symptom relief into health care systems. The current publication is intended to assist anyone involved with planning, implementing, managing or assuring the quality of health care for children to integrate palliative care and symptom relief such that the quality of life of children and their families will be improved, health-care systems will be strengthened and cost-effective models of service provision will be implemented. With this guide, WHO reiterates its commitment to answering the needs and expectations of all people, especially the most vulnerable. Dr Naoko Yamamoto Assistant Director-General UHC and Health Systems World Health Organization Geneva, Switzerland

1A WHO guide for health-care planners, implementers and managers Introduction People younger than 20 years comprise 35% of the global population and 40% of the global population of least-developed nations (1). The number of children – neonates, infants, children, and adolescents up to 19 years of age – who need pediatric palliative care (PPC) each year may be as high as 21 million (2). Another study found that almost 2.5 million children die each year with serious health- related suffering and that more than 98% of these children are in low- and middle-income countries (LMICs) (3). While estimates differ, there is no doubt that there is an enormous need for prevention and relief of suffering among children – for PPC. In response to the large-scale unnecessary suffering of children, the 2014 World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course emphasizes that access to palliative care for children is an “ethical responsibility of health systems” (Annex 4) (4). Remarkably, however, PPC has not been seen as a priority around the world. A 2011 study found no PPC services in 65.6% of countries (5). Where services do exist in LMICs, they typically are available in only one or a few institutions and are not integrated into health care systems. A review of PPC in sub-Saharan African countries found that less than 1% of children needing palliative care in Kenya had access to it and less than 5% in South Africa and Zimbabwe (6). This guide is part of a series of World Health Organization (WHO) guidance documents on palliative care (7). It describes the medical and moral necessity of making palliative care and pain relief accessible to all children in need, and their families. It offers an expanded conception of PPC based on the needs of children in LMICs as well as in high-income countries (HICs). It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) and provides practical guidance on integrating PPC and pain relief into health care systems such that the quality of life of children and their families is improved, health care systems are strengthened and cost-effective models of service provision are implemented, all of which contribute to the goal of universal health coverage (UHC). This document is not a clinical manual, and it does not provide clinical guidelines. Rather, its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations (UN) organizations working with children, Ministry of Health (MoH) officials, public health leaders, hospital managers, nongovernmental organizations (NGOs), general and specialist paediatricians, surgeons, anaesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in LMICs.

3A WHO guide for health-care planners, implementers and managers

5A WHO guide for health-care planners, implementers and managers What is paediatric palliative care? Part 1. Defining palliative care WHO defines palliative care as the prevention and relief of suffering of adult and paediatric patients and their families facing the problems associated with life-threatening illness (8). These problems include the physical, psychological, social and spiritual suffering of patients, and psychological, social and spiritual suffering of family members. Palliative care (9): n entails early identification and impeccable assessment and treatment of these problems; n enhances quality of life, promotes dignity and comfort, and may also positively influence the course of illness; n provides accompaniment for the patient and family throughout the course of illness; n should be integrated with and complement prevention, early diagnosis and treatment of serious, complex or life-limiting health problems; n is applicable early in the course of illness in conjunction with other therapies that are intended to prolong life; n provides an alternative to disease-modifying and life-sustaining treatment of questionable value near the end of life; n is applicable to those living with long-term physical, psychological, social or spiritual sequelae of serious, complex or life-limiting illnesses or of their treatment; n accompanies bereaved family members after the patient’s death; n seeks to mitigate the pathogenic effects of poverty on patients and families and to protect them from suffering financial hardship due to illness or disability; n does not intentionally hasten death, but provides whatever treatment is necessary to achieve an adequate level of comfort for the patient in the context of the patient’s values; n should be applied by health care workers of various kinds, including primary care providers, generalists and specialists in many disciplines and with various levels of palliative care training and skill, from basic to intermediate to specialist; n encourages active involvement by communities and community members; n should be accessible at all levels of health care systems and in patients’ homes; and n improves continuity of care, strengthens health systems and promotes UHC. The specific types and severity of suffering vary according to geopolitical situation, socioeconomic conditions and culture. Children and their families in LMICs often endure unhealthy social conditions. They also typically have less access to disease prevention, diagnosis and treatment, to social supports and to specialists and specialized services of many kinds than children in HICs. For example, many children have Integrating palliative care and symptom relief into paediatrics 6 limited or no access to cancer chemotherapy, radiation therapy or oncologic surgery, to effective treatment for multidrug-resistant tuberculosis or to neonatal or paediatric intensive care. Palliative care should never be considered a substitute for disease prevention and treatment or for critical care, and palliative care workers have a responsibility to advocate for them wherever they are not yet accessible (9,10,11). But palliative care also should be universally accessible (4). Many countries also lack rehabilitation medicine specialists and services and long-term care facilities to care for children with non-life-threatening but serious disabilities such as paraplegia or quadriplegia or those due to brain injuries or congenital anomalies. In addition, mental health services and social, welfare programmes may be of limited capacity, difficult to access or unavailable. Palliative care can help to address these needs (Table 1). Further, the types of suffering typically associated with life-threatening illness – pain, other physical symptoms, psychological symptoms – also occur acutely or in association with non-life-threatening conditions. But in low-resource settings, prevention and relief of acute suffering and of suffering due to non-life-threatening conditions often are inadequate or unavailable. For example, in countries where pain medicine does not yet exist as a specialty and where few doctors prescribe opioid pain medicines, prevention and relief of pain from trauma or burns or surgery typically are inadequate. Thus, in these settings, clinicians trained in palliative care could fill this therapeutic void either by training colleagues in symptom control, by providing direct symptom relief, or both. Planning and implementing palliative care services should based on assessment of the types and extent of inadequately prevented or relieved physical, psychological, social or spiritual suffering. This attention to local needs is necessary for palliative care services to be people-centred: tailored to local need and to the needs of individual patients and families (3,12). Table 1. Type of suffering and palliative care need Patient population HICs palliative care need LMICs palliative care need Advanced chronic NCDs High High HIV/AIDS Moderate Very high Drug-resistant tuberculosis Very low High in some regions Critical illness High High Neonates with severe prematurity, birth trauma or congenital anomaly High Very high Severe non-progressive disabilities such as paraplegia and quadriplegia Moderate High Severe social distress such as extreme poverty or stigmatization Low High Acute symptoms related to illness, injuries, surgery Not applicable High Health emergencies and crises Very low High in some areas 7A WHO guide for health-care planners, implementers and managers Part 2. How does palliative care differ between children and adults? Children are not just little adults. While the definition and principles of palliative care in Part 1 of this chapter apply to the entire lifespan, PPC requires attention to physical, developmental, psychosocial, ethical, spiritual and relational phenomena that are unique to children (Table 2). Salient differences between adults and children for PPC include the following. n Passage through the different development stages Children change continually as they grow from neonates to adolescents. Children undergo marked physical change, learn to talk, mature in their ability to understand illness and become more independent and self-reliant. Because children proceed at different speeds through the many developmental milestones, palliative care providers should become adept at assessing the unique developmental stage and needs of each child and at responding appropriately. Children who have grown up with chronic illness, interacting with clinicians and hospitals, tend to have a more mature understanding of illness, death and dying than children of their age who have been healthy most of their lives. n Communication needs Good communication with patients and their families requires sensitivity to the child’s developmental stage and to the language, culture and illness understanding of both the patient and family and to their degree of trust in the health care system. To the greatest extent possible, PPC elicits a child’s report of her/his symptoms using, for example, validated paediatric pain scales. PPC also honours each child’s values as much as possible and seeks their uncoerced direction, alongside that of the family, about treatments and goals of care. Patients who have not yet reached maturity or the legal age of consent sometimes may disagree with their parents or family caregivers about these issues. n Dependence on adults Children’s dependence on others ranges from the total dependence of a neonate to the high degree of independence of some adolescents who may sometimes want to be seen as a child when seriously ill. n Impact on families While a child’s serious or life-threatening illness profoundly impacts any family, the impact may be greatest in LMICs. Even where treatment is provided free of charge or mostly covered by insurance, the illness can result in financial hardship or catastrophe for the family. Co-payments for treatment, or gratuities may in themselves strain or exceed a family’s financial capabilities. In addition, families must pay for travel to the clinic or hospital not only for the patient, but also for a family caregiver. If the patient remains in the hospital, the family caregiver – often a parent or older child – must pay for meals and often also a place to sleep. That parent or older child is then unable to work and care for the household. This may result in siblings being taken out of school either for lack of school fees or because they must work or care for younger siblings. To pay these expenses, families must often sell their possessions, including farm animals, land, tools or machines needed to earn a living, or even their homes. Too often, a child’s illness results in the family’s financial impoverishment as well (13–15). PPC must assess these risks and respond to them with social supports (Chapter 4). Even when the family’s financial situation is stable, the emotional impact of a child’s serious or life- threatening illness is usually profound. The emotional distress of parents whose child is experiencing serious or life-threatening illness typically is much greater than for a family member of an adult with a similarly serious condition. Parents often seek any treatment that might help their child, even Integrating palliative care and symptom relief into paediatrics 8 if it takes them far from home and far exceeds their financial resources. Thus, PPC entails taking time to explore parents’ understanding of their child’s diagnosis and prognosis and to gently correct misunderstandings. Parents have reported that they might have made different decisions if they had understood earlier what they understood after their child had died. In addition, each family has unique psychosocial characteristics. A child with a life-threatening disease may strain or challenge existing relationships within the family. Role reversal, overly enmeshed relationships, and alliances and conflicts between family members may occur. A dysfunctional family may significantly impair the child’s quality of life. PPC includes assessment of family function and efforts to resolve conflict or dysfunction. n Types of health conditions The wide range of childhood illnesses increases the difficulty of providing PPC services that meet each child’s needs. Further, many paediatric genetic or congenital conditions are rare and not seen in adults, the symptoms may differ in each child and there may be no clear diagnosis or prognosis (16). n Paediatric formulations and dosing of essential medicines It is easier to provide the correct weight-based dose for a young child of a liquid formulation of a medicine, and it is easier for a child to swallow. Where no liquid or paediatric formulation of an essential medicine such as oral morphine is accessible, pills may be cut in halves or quarters or crushed and mixed with food or dissolved in liquid. However, it is difficult to provide an accurate dose in this manner. Further, the pharmacokinetics of medicines are often different in children than in adults, but there may be little or no evidence on the safety and effectiveness of some palliative medicines in children. When there is no alternative to a given medicine to relieve a child’s symptom, particular judiciousness and vigilance are needed on the part of the clinician (17). n Degree of difficulty of clinical decision-making Decision-making about using, withholding or withdrawing disease-modifying or life-sustaining treatments of questionable benefit for a child can be especially difficult for a variety of reasons. Parents often have more difficulty understanding or accepting the poor prognosis of a child than of an aged family member. Clinicians, too, may find it most difficult to weigh the relative benefits and burdens of an intervention when the patient is a child. In addition, modes of decision-making for ill children unable to speak for themselves often vary by culture, by family and sometimes even within families. Whenever possible, gentle but diligent efforts should be made to understand the child’s perspective. n Clinical environment PPC wards and clinics should be made as child-friendly and comforting as possible. The comfort of paediatric patients can be promoted by enabling at least one family member to be present and comfortable (to have adequate food and a comfortable place to sleep near the patient at an affordable cost). The child’s comfort also can be enhanced with distracting pictures or soothing colors on the wall, comforting and clean textures on the bedding, gentle sounds such as soft music or lullabies, or calming toys. 9A WHO guide for health-care planners, implementers and managers Table 2. PPC: differences from adult palliative care n Prognosis, life expectancy and functional outcome often less clear. n More frequent need to integrate palliative care with intensive disease-modifying or life-sustaining treatments due to unclear prognosis. n Care often requires a dual focus on growth/development and potential for death. n Greater emotional burden for family members and clinicians because serious and life-threatening illnesses are not commonly considered normal conditions for children. n Patients undergo continual developmental change: physical, hormonal, cognitive, expressive and emotional. n Patients have changing information needs, recreational and educational needs, and modes of coping with stress. Thus, child life specialists, play therapists and behavioural specialists can greatly enhance palliative care for children. n Patients may have congenital anomalies of uncertain type or rare genetic conditions. n Some genetic conditions may affect multiple children in a family and create a sense of guilt in parents. n Expertise needed both to discern a child’s emotional and cognitive development and to communicate in a manner appropriate for the child’s emotional and cognitive development: to provide the most appropriate amount and kind of information about the illness and to elicit the child’s preferences for care. Sources: Adapted from Levine et al. 2013 (18) and Weaver et al. 2016 (19). Part 3. Who requires PPC? Children with a wide range of health conditions require PPC (Tables 3 and 4). Thus, PPC should be integrated into all sectors and all levels of child health care, and it should be integrated with many types of potentially curative and life-sustaining treatments (Chapter 5) (20,21). In addition, clear plans should be put in place to make sure palliative care continues without interruption when children with long-term palliative care needs become adults. In LMICs, efforts to integrate palliative care into health care systems should always be accompanied by efforts to maximize accessibility of prevention, early diagnosis and treatment of serious and life-threatening illnesses (21,22). However, this accessibility is very limited for many children in LMICs (5,23–25). In addition, as many as 80% of malignancies and many cases of organ failure are diagnosed very late in their course when curative treatment is not available in the country or does not exist (26–28). Therefore, the need for PPC is greatest in LMICs, yet few PPC services exist in these countries (Chapter 2). Integrating palliative care and symptom relief into paediatrics 10 Table 3. Populations that need PPC Population Examples Children with acute life-threatening conditions from which recovery may or may not be possible Any critical illness or injury, severe malnutrition Children with chronic life-threatening conditions that may be cured or controlled for a long period but that may also cause death Malignancies, multidrug-resistant tuberculosis, HIV/AIDS Children with progressive life-threatening conditions for which no curative treatment is available Spinal muscular atrophy, Duchenne’s muscular dystrophy Children with severe neurologic conditions that are not progressive but may cause deterioration and death Static encephalopathy, spastic quadriplegia, spina bifida Neonates who are severely premature or have severe congenital anomalies Severe prematurity, anencephaly, congenital diaphragmatic hernia, trisomy 13 or 18 Family members of a fetus or child who dies unexpectedly Fetal demise, hypoxic-ischaemic encephalopathy, overwhelming sepsis in a previously healthy child, trauma from motor vehicle accident, burns, … Sources: Downing et al. 2016 (29); Wood et al. 2010 (30). Table 4. Conditions that commonly generate a need for PPC Condition Examples of palliative care needs Malignancies (paediatric types differ from those in adults) n Leukaemias: haemorrhage due to coagulopathies, painful procedures such as bone marrow biopsies n Brain tumour: headache, cognitive and neurologic deficits n Sarcomas: severe pain, loss of a limb Conditions discovered or occurring in the perinatal period (31–33) n Congenital anomalies: symptomatic dysfunction of a vital organ such as the heart, bowel or brain; stigmatized superficial anomalies n Prematurity: respiratory distress, intraventricular haemorrhage, brain ischaemia and permanent neurodevelopmental disability n Birth asphyxia: hypoxic-ischaemic brain injury and permanent neurodevelopmental disability Injuries n Head trauma: poor cognitive and motor skills n Burns: acute and sometimes also chronic pain, stigmatized disfigurement n Exposure to violence, conflict or natural hazard: mood disorders such as anxiety, depression, post-traumatic stress disorder Serious infections n HIV/AIDS: symptomatic opportunistic infections, stigmatization, adverse effects of medicines n Drug-resistant tuberculosis: cough, constitutional symptoms (fever, sweats, weight loss), adverse effects of medicines, social isolation, stigmatization n Meningitis: permanent neurodevelopmental disability n Rheumatic fever: symptomatic heart failure Genetic conditions n Neurologic conditions: progressive neurological deficits and disability n Sickle cell disease and anaemia: pain crises, bone necrosis n Connective tissue disorders: chronic pain 11 A WHO guide for health-care planners, implementers and managers Protein energy malnutrition n Pain, dyspnea n Vomiting or diarrhoea related to re-feeding Being a patient n Painful procedures n Postoperative pain n Not having an opportunity to have questions answered and fears assuaged Sources: Adapted from Knaul et al. 2017 (3) and Krakauer et al. 2018 (22). Part 4. “Palliative care plus”: preventing and relieving the suffering of children without a life-threatening illness Attentively identifying, preventing and managing a child’s pain is a moral and ethical imperative, regardless of the patient’s age (even neonates experience pain), ability to communicate or cognitive capacity, or health condition (22,34). Where acute and procedural pain control and services for children with severe disabilities or congenital anomalies are readily available, as they often are in HICs, palliative care can focus entirely on children with life-threatening illnesses. However, where these services are not easily accessible, as is often the case in LMICs, clinicians trained in palliative care should provide them, or teach others to provide them, in addition to caring for children with life-threatening illnesses. Acute and procedural pain Acute pain from traumatic injuries is often inadequately treated in children or not treated at all. The result is not only unnecessary suffering from the pain itself, but also greater emotional distress on the part of the child and family, greater difficulty in treating the patient due to pain-related fear and agitation, and a higher risk of chronic emotional sequelae such as post-traumatic stress disorder (35). Procedural pain is a common yet preventable cause of suffering in children. For quick and minimally invasive procedures such as phlebotomy, simple non-pharmacologic techniques can be used before, during and after the procedures to minimize pain and its associated fear and distress. Distraction or relaxation techniques prior to and during painful procedures can help patients and caregivers maintain a sense of control and decrease the perceived intensity of symptoms. Topical analgesia also can be used, if available. For more complex procedures, such as burn dressing changes, systemic analgesia medication should be used. Intra-operative and postoperative pain usually require an opioid. Examples of painful procedures: n phlebotomy n injections n lumbar puncture n bone marrow aspirate n thoracentesis n dressing changes. Integrating palliative care and symptom relief into paediatrics 12 Children who suffer without a clearly life-threatening condition There is a large burden of suffering among children with severe physical disabilities in both HICs and LMICs. Although the range of diagnoses is large and diverse, there are common types of suffering experienced by children with disabilities that can be relieved through palliative care approaches (36). Whether the disability is due to a traumatic injury, congenital anomaly or genetic condition, pain and social isolation and stigmatization are common. Other chronic physical or psychological symptoms may be present depending on the specific condition. In addition, whenever a child (or adult) is permanently unable to feed or wash herself, walk or use the toilet independently, this may cause physical, financial and emotional burdens for the family, especially a rural poor family. Palliative care providers may be the only source of relief for these types of distress. Box 1. Child Friendly Healthcare Initiative (CFHI) CFHI is based on the United Nations Convention on the Rights of the Child (UNCRC) (Annexes 1 and 3) and was developed by Child Advocacy International (CAI) with the technical support of WHO, the Royal College of Nursing (United Kingdom) and the Royal College of Paediatrics and Child Health (United Kingdom) in collaboration with the United Nations Children’s Fund (UNICEF). The main aim of CFHI is to develop a system of care focused on the physical, psychological and emotional well-being of children attending health care facilities, particularly as inpatients. A set of globally applicable standards were proposed to ensure that practices in hospitals and health centres everywhere respected children’s rights, not only relating to survival and avoidance of morbidity, but also in relation to their protection from unnecessary suffering and their informed participation in treatment (37). 13 A WHO guide for health-care planners, implementers and managers

15 A WHO guide for health-care planners, implementers and managers Access to palliative care and symptom relief Access to PPC lags far behind that of adult services. Development of PPC is hampered by a number of factors including geography, lack of education, lack of public awareness, stigma and lack of consensus on the diseases and conditions appropriate for PPC. There is resistance to admitting that children need palliative care because it is emotionally difficult to admit that children suffer and die. Further, many myths persist about caring for seriously ill children, including a belief that children are not aware of their condition and do not experience pain in the same way as adults. Estimates of the need for PPC are hampered by a lack of registries and reliable data collection from most countries. Need is unevenly distributed globally with almost half the need in sub-Saharan Africa and 98% of the need in LMICs. Children needing palliative care are not concentrated in any one area in a country and are difficult to serve after leaving institutions. Clinicians trained in PPC are few and far between, and children suffering from pain or other symptoms in an area without a trained clinician are likely to have inadequate relief or none at all. Estimating the global need for PPC Several estimates of the global need for PPC have been undertaken in recent years (2,3,38). One estimate identified 11 categories of conditions that generate a need for PPC at the end of life only and the percentage of the need due to each condition (Figure 1). Figure 1. Conditions that generate a need for palliative care at the end of life by disease group Cirrhosis of the liver 1.06% Congenital anomalies* 25.06% Neonatal conditions* 14.64% Protein energy malnutrtion 14.12% Meningitis 12.62% HIV/AIDS 10.23% Kidney diseases 2.25% Neurologicial conditions* 2.31% Cancer 5.69% Endocrine, blood, immune disorders 5.85% Cardiovascular disease 6.18% *see excluded conditions (Appendix 6) N = 1,170.011 Source: Reprinted with permission from Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 16 The total number of children in need of PPC globally each year may be as high as 21 million, and of these, 8 million may have problems that require specialist PPC (2). Local need for PPC can be estimated with assistance from key informants and the affected people. Direct stakeholders should be involved both in estimating the need and in the planning process for service implementation. A working group on PPC sanctioned by a ministry of health could examine local and international data and key informant information to estimate the probable range of need, from the lowest to the highest. Local mortality and disease prevalence data can be used, but these data are often unreliable or unavailable in LMICs. Mapping levels of palliative care development In addition to understanding the need for children’s palliative care, it is also important to assess the capacity to provide PPC globally. Mapping of levels of PPC development was undertaken by the International Children’s Palliative Care Network (ICPCN) using a five-level schema (Figure 2) (29). Figure 2. Levels of PPC development in 2015 Source: Reprinted with permission from Downing et al. 2016 (29). 1. Evidence (from figure 2) of broad palliative care provision for children. Approaching full integration within health care services as well as a national policy to support children’s palliative care. 2. Evidence of broad palliative care provision for children with training available and focused plans for development of services and integration into health care services. 3. Evidence of localized palliative care provision for children and availability of training. 4. Evidence of capacity building activities for the provision of children’s palliative care. 5. No known provision of children’s palliative care. 1 2 3 4 5 17 A WHO guide for health-care planners, implementers and managers Measurement of need for, and capacity to deliver, PPC are necessary elements in planning PPC in a country or region. This is usually done by knowledgeable individuals (including a national palliative care association if there is one) and can be done sequentially. In most LMICs, there are few PPC programmes, and these few may be known to key informants. The primary information needed is the capacity of these institutions to deliver PPC including: n number of patients who received care in one year n diagnoses n length of service by diagnosis and overall n average daily census. Surveys can be used to collect these data with follow-up of non-respondents. Once the need for PPC has been estimated and capacity assessed, it is then possible to conduct a gap analysis (38). Gap analysis is essential for health care planning purposes as it shows the size of the unmet need for PPC. Disparity in access to palliative care Currently, 98% of the need for PPC is in LMICs, and nearly 50% of the need is in the African region (Figures 3 and 4). Yet few clinicians in LMICs have any training in PPC. Figure 3. Distribution of children in need of palliative care by WHO region N = 1,170.011 AFR 49% EUR 3% SEAR 24% EMR 12% WPR 7% AMR 8% AFR: African Region; AMR: Region of the Americas; SEAR: South-East Asia Region; EUR: European Region; EMR: Eastern Mediterranean Region; WPR: Western Pacific Region Source: Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 18 Figure 4. Distribution of children in need of palliative care at the end of life by World Bank country income group N = 1,170.011 Low middle income 48.5% High income 2.1% Low income 35% Upper middle income 14.4% Source: Connor et al. 2014 (38). Programmes in PPC An accurate estimate of the number of PPC programmes worldwide is not available at present. However, a number of centres of excellence have been identified that can serve as models for development: n Members of ICPCN: http://www.icpcn.org/members-directory/ n All 196 members of the United Kingdom association Together for Short Lives: https://www2. togetherforshortlives.org.uk/portal/public/volunteer/List.aspx n Members of the United States National Hospice and Palliative Care Organization that have paediatric palliative care services: https://www.nhpco.org/find-hospice 19 A WHO guide for health-care planners, implementers and managers

21 A WHO guide for health-care planners, implementers and managers Palliative care and symptom relief as part of comprehensive paediatric care Generalist PPC Most children suffering from problems associated with serious or life-threatening health conditions do not need a PPC specialist. Most PPC can be provided very well by generalist clinicians with basic- or intermediate- level training in palliative care, just as most infections can be competently treated by generalist clinicians and do not require intervention by an infectious disease specialist. Thus, health systems should require that general paediatricians, general practitioners, family doctors and paediatric nurse practitioners have at least basic training in PPC, and health system policies should make PPC one of the official responsibilities of these clinicians (Annex 5). All palliative care training programmes in LMICs, whether basic, intermediate or specialist, should address the special problems and needs of paediatric patients and their families at least until there are adequate numbers of paediatric clinicians trained in palliative care. Thus, any clinician trained in palliative care should be able to provide at least basic palliative care to children. There are many similarities between general paediatrics and PPC that should facilitate integration of palliative care training into paediatrics training and practice. These include: n emphasis on continuity of care and development of a trusting therapeutic relationship; n integrated bio-psycho-social care; n attention both to the patient and to the family; and n special attention to patients’ and family members’ anxieties about both illness and treatment. The emotional discomfort of contemplating the death of children can be a barrier to integration of PPC into general paediatrics. For the sake of patients and families, this barrier must be recognized and overcome. Most patients in need of palliative care, whether adults or children, are at home. Generalist clinicians with palliative care training are essential to making palliative home care possible. First-level (district) hospitals should establish a palliative care and pain control clinic staffed by clinicians with basic or intermediate- level palliative care training. Their roles would include (see also Chapter 5): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; n inpatient care for patients whose symptoms cannot be adequately controlled outside the hospital but who do not require higher-level care; n referral of patients with severe or refractory symptoms to higher-level hospitals; and n training and supervision of clinicians providing palliative care at community health centres (CHCs). In settings where clinicians at the community level are not permitted to prescribe opioids for outpatients, physicians at the district level should take on this role for any patients in the district who require opioid therapy for pain or terminal dyspnea. Clinicians who provide palliative care at community CHCs – which may include doctors, clinical officers, assistant doctors, nurse practitioners or nurses with advanced palliative care training – should have basic training in palliative care (Annex 5). Integrating palliative care and symptom relief into paediatrics 22 Their roles should include (Chapter 5) (22,39): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; ideally, at least one clinician at a CHC should be able to prescribe oral morphine for outpatients; n training and supervision of community health workers (CHWs) who visit patients at home as often as daily to recognize uncontrolled symptoms or social or spiritual distress and report it to the CHC; and n if possible, to provide inpatient hospice or end-of-life care for a maximum of one or two patients at a time whose symptoms are well controlled but whose families are unable to care for them at home. PPC provision by physician-specialists in disciplines other than palliative care Specialist doctors who frequently care for children with serious or life-threatening conditions, such as oncologists, cardiologists, intensivists and neonatologists, should be required to receive intermediate-level training in PPC (Chapter 5, Part 3). Health system policies should require that these physicians have PPC as one of their official responsibilities. Specialist physicians trained in this way, usually based at second- level (provincial) or third-level (regional referral) hospitals, will be able to respond adequately to most of the suffering of children that cannot be adequately relieved at the district or community level by generalist clinicians. In addition, these physicians will be capable of integrating palliative care with the curative and disease-modifying treatment for children that they usually practise. Training in palliative care also will prepare them to recognize when curative or life-sustaining treatment are likely to be more harmful than beneficial and to advise patients and families on the relative benefits and burdens of potential interventions. Health system policies also should require that second- and third-level hospitals have a palliative care interdisciplinary team (IDT) and that specialist physicians with intermediate-level training in palliative care be affiliated with the IDT. Basic palliative care training for generalist clinicians should include curriculum on when and how to refer patients to the IDTs at higher-level hospitals. Specialist PPC Some children have refractory or complex symptoms that even physicians with intermediate-level PPC training may be unable to relieve. These patients require intervention by palliative care specialist physicians who lead palliative care IDTs. However, there are as yet few palliative care specialists in LMICs, even fewer PPC specialist physicians and no PPC specialist training programmes. Palliative care specialist training programmes should be created as soon as possible in LMICs, and ministries of health should recognize palliative medicine as an official medical specialty to enable these programmes to develop and their graduates to practise. Palliative care specialist training programmes should include training in PPC for all trainees, and they should aim to develop a PPC specialist training track as soon as possible. National health care policies should require major children’s hospitals to establish PPC services directed by PPC specialist physicians within a specified period of time. PPC specialist physicians and IDTs are especially important in paediatric cancer centres. The majority of distressing symptoms in children with advanced cancer, such as pain, dyspnea and nausea/vomiting, are treated inadequately or not at all, even in HICs (40–44). Further, new targeted cancer therapies and immunotherapies sometimes exacerbate symptoms, generate new ones or create complex clinical dilemmas for which palliative care expertise may be crucial. Similarly, hospitals that offer extra-corporeal membrane oxygenation (ECMO) or other invasive life-sustaining treatments should also offer palliative care provided by palliative care specialist physicians and IDTs to minimize the discomfort of critical care, to offer an alternative to life-sustaining treatment of questionable benefit and to ensure the comfort of children for whom life-sustaining treatment will be withdrawn. 23 A WHO guide for health-care planners, implementers and managers

25 A WHO guide for health-care planners, implementers and managers Essential Package of Paediatric Palliative Care and Symptom Relief The Essential Package of Paediatric Palliative Care and Symptom Relief is the minimum palliative care and symptom relief that should be accessible by any child in any setting. The EP Ped is based on the essential package of palliative care described by Krakauer et al. (22) and Knaul et al. (3), and adapted for children based on the expert opinions of the members of the WHO working group on PPC. It consists of a set of safe, effective, inexpensive, off-patent and widely available medicines, simple and inexpensive equipment, and basic social supports, which together can prevent and relieve suffering of all types – physical, psychological, social and spiritual (Table 5). It also includes the human resources needed to apply them appropriately, effectively and safely and to accompany patients and families throughout the course of the illness. Medicines The list of medicines in the EP Ped is based on the WHO Model List of Essential Medicines for Children (45) and adapted for this document. Medicines were selected based on the following criteria: n they are necessary to prevent or relieve the specific symptoms or types of suffering most common in children with serious, complex or life-threatening health problems; n the safe prescription or administration requires a level of professional competency achievable by doctors, clinical officers, assistant doctors or nurse anaesthetists with basic training in palliative care; and n within its class of medicines, they offer the best balance between accessibility on the world market, clinical effectiveness, safety, ease of use and low cost. Morphine and other opioids Morphine, in oral fast-acting and injectable preparations, is the most clinically important of the essential palliative care medicines (45). It must be accessible in the proper form and dose by any patient with terminal dyspnea or with moderate or severe pain that is either acute, chronic and associated with malignancy, or chronic in a patient with a terminal prognosis. Opioids should not be first-line treatment for chronic pain outside of cancer, palliative and end-of-life care, except under special circumstances and with strict monitoring (46). Morphine, in both injectable and oral fast-acting formulations, should be accessible by prescription at every referral, provincial and district hospital, and oral fast-acting morphine should be accessible by prescription at CHCs unless there is a serious and unavoidable risk of diversion of controlled medicines from CHCs. All doctors who ever care for patients with moderate or severe pain of the types described, or for patients with terminal dyspnea, should be adequately trained and legally empowered to prescribe oral and injectable morphine for inpatients and outpatients in any dose necessary to provide adequate relief as determined by the patients. Doctors inexperienced at prescribing morphine can be trained adequately with the curriculum in basic PPC described in this document or with similar curricula (Annex 5). Doctors also should be enabled to prescribe an adequate supply of morphine so that obtaining refills is feasible for families without requiring unreasonably frequent, expensive or arduous travel. Whenever clinically possible, oral morphine rather than the injectable form should be prescribed. All doctors should be trained to assess and treat opioid side-effects and to avoid injudicious use of morphine for mild pain or chronic non-malignant pain. In some countries, it may be possible for specially trained nurses to provide opioid therapy safely and effectively. Integrating palliative care and symptom relief into paediatrics 26 Table 5. EP Ped: interventions, medicines, equipment, human resources and social supports Interventions Inputs Social supports Medicinesa Equipment Human resourcesb Prevention and relief of pain or other physical suffering,d acute or chronic Amitriptyline, oral Bisacodyl (senna), oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine, or dimenhydrinate), oral and injectable Fluconazole, oral Fluoxetine (sertraline or citalopram), oral (>8 years old) Furosemide, oral and injectable Haloperidol, oral and injectable Hyoscine butylbromide, oral and injectable Ibuprofen (naproxen, diclofenac, or meloxicam), oral (>3 months old) Lactulose (sorbitol or polyethylene glycol), oral Loperamide, oral Metaclopramide, oral and injectable (>1 month old) Metronidazole, oral, to be crushed for topical use Morphine, oral immediate release and injectable Naloxone, injectable Omeprazole, oral Ondansetron, oral and injectablef (>1 month old) Oxygen Paracetamol, oral Petroleum jelly Pressure-reducing mattresses Nasogastric drainage and feeding tubes Urinary catheters Opioid lock boxes Flashlights with rechargeable batteries (if no access to electricity) Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) CHWs (if available) 27 A WHO guide for health-care planners, implementers and managers Prevention and relief of psychological suffering,e acute or chronic Amitriptyline, oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine or dimenhydrinate), oral and injectable Fluoxetine (sertraline or citalopram), oral Haloperidol, oral and injectable Lactulose (sorbitol or polyethylene glycol), oral Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) Social workers, psychologists, or grief counsellors CHWs (if available) Prevention and relief of social suffering, acute or chronic Income and in- kind supportc Social workers CHWs and/or volunteers (if available) Prevention and relief of spiritual suffering Local spiritual counsellors a Based on WHO 2017 (45). Acceptable alternative medicines are in parentheses: ( ) b Doctors may be paediatricians, general practitioners, family practitioners, surgeons, anaesthesiologists, intensivists, neonatologists, infectious disease specialists, palliative care specialists, clinical officers, or others. Nurses may include nurse-anaesthetists. c Only for patients living in extreme poverty and for one caregiver per patient. Includes cash transfers to cover housing, children’s school tuition, transportation to health care facilities or funeral costs; food packages; and other in-kind support (blankets, sleeping mats, shoes, soap, toothbrushes, toothpaste). d Other physical suffering includes breathlessness, weakness, nausea, vomiting, diarrhoea, constipation, pruritus, bleeding, wounds and fever. e Psychological suffering includes anxiety, depressed mood, confusion or delirium, dementia and complicated grief. f Only in hospitals that provide cancer chemotherapy or radiotherapy. Sources: Knaul et al. 2017 (3); Krakauer et al. 2018 (22). Integrating palliative care and symptom relief into paediatrics 28 Balance: maximizing access to opioids for medical use/minimizing risk of diversion and illicit use Although ensuring access to morphine for anyone in need is imperative, it also is necessary to take reasonable precautions to prevent diversion and non-medical use. Model guidelines for this purpose are available (47). All hospitals, health centres and pharmacies should store morphine and other controlled medicines in a sturdy, locked and well-anchored box or cupboard at all times, keep records of the remaining supply and record the amount dispensed for a patient and the amount wasted or returned by a patient’s family. All personnel at these sites who handle controlled medicines such as opioids should be trained in safe storage and recordkeeping and in local regulations on controlled medicines. Doctors should be trained to assess for and minimize risk of opioid dependence and opioid diversion for non-medical uses. In keeping with the principle of balancing maximum accessibility of opioids for medical uses with minimum risk of opioid diversion, additional precautions might be necessary in areas with high rates of crime or violence. For example, it might not be possible to make morphine safely accessible at the community level in areas with high crime rates. In these places, accessibility must be ensured at higher levels in ways that do not unduly increase the travel burden for patients’ families. Where home or clinic supplies of morphine are frequently stolen, or patients and their families are put at risk by carrying or storing morphine, patients needing morphine might require admission to a hospital. Non-opioid medicines Among the other essential palliative medicines are oral and injectable haloperidol and oral fluoxetine or another selective serotonin reuptake inhibitor (SSRI). Although these medicines are considered psychiatric or psychotropic medicines, they have multiple essential uses in palliative care and are safe and easy to prescribe. For example, haloperidol is the first-line medicine in many cases for relief of nausea, vomiting, agitation, delirium and anxiety. An SSRI, such as fluoxetine, is the first-line pharmacotherapy for depressed mood or persistent anxiety in children older than eight years. Any doctor should be prepared and permitted to prescribe these medicines – not solely psychiatrists or neurologists. Patients with more severe psychiatric illnesses, such as psychotic or bipolar disorders, should be referred for specialist psychiatric care whenever possible. Petroleum jelly is essential for dressing non-healable wounds. Wet-to-dry dressings typically cause pain or bleeding when changed and can be avoided by applying petroleum jelly to dressings. Metronidazole powder, made by crushing metronidazole pills, is essential to reduce or eliminate the odor of any wound infected with anaerobic bacteria. The powder can be sprinkled on the wound or mixed with petroleum jelly or hydrogel dressings. Equipment Equipment in the EP Ped meets the following criteria. It is: n necessary for the relief of at least one type of physical or psychological suffering; n inexpensive, and n simple to use with basic training. The equipment includes nasogastric tubes (for vomiting refractory to medicines and for administration of medicines or fluids); urinary catheters (to manage bladder dysfunction or outlet obstruction); foam, water or air pressure-reducing mattresses (to prevent and relieve pressure ulcers and pain); locked safe-boxes for opioids (to be secured to a wall or immovable object); flashlights with rechargeable batteries (when no adequate light source is available for nocturnal home care); and baby and adult diapers or cotton and plastic bags to make diapers (to reduce risk of skin ulceration and infection and caregiver risk and burden). In countries where plastic bags are prohibited as part of laudable environmental protection initiatives, 29 A WHO guide for health-care planners, implementers and managers specialized medical use should be permitted. The EP Ped does not include materials needed for palliative care that should be standard equipment for any health centre or hospital such as gauze and tape for dressing wounds, nonsterile examination gloves, syringes and angiocatheters. Human resources and training The necessary human resources depend primarily on the level and type of the health service delivery site and on the competency in PPC of staff members rather than their professional designations. Any medical doctor, clinical officer or assistant doctor trained in basic palliative care using a curriculum such as that included in this document should be capable of preventing or relieving most pain and other physical suffering (Annex 5). They should be able to competently prescribe opioids such as morphine to treat pain for inpatients and outpatients. They also should be able to diagnose and provide pharmacotherapy as needed for uncomplicated anxiety disorders, depression or delirium. Not only doctors, nurses, psychologists and social workers, but also CHWs can be trained to provide simple, culturally appropriate psychotherapy for depression and bereavement support (48–51). Nurse-anaesthetists trained in basic palliative care and nurse practitioners with advanced palliative care training also may be able to provide these services in some settings. Nurses at CHCs can have a crucial role in supervising CHWs who provide palliative care, in providing palliative care that does not entail prescribing medicines and in triaging patients who may require attention from a doctor. Midwives can have a crucial role in providing palliative care for critically ill neonates and emotional support for the parents. Their ability to prescribe medicines depends on their level of training and on local licensing laws. However, they can be trained to recognize moderate or severe distress in neonates and to transport patients in need of palliative care to the nearest health centre or other facility capable of providing it. Clinicians trained in basic PPC occasionally may encounter physical or psychological suffering for which they feel incapable of providing adequate treatment, and referral for specialized PPC may not be possible in some settings. Examples may include pain refractory to high-dose morphine, depression refractory to maximum dose SSRI or psychotic disorders. However, if referral for appropriate specialist care is not possible, then a clinician with palliative care training should use whatever resources are available, including a palliative care hotline or other type of telemedicine, to provide the best possible care under the circumstances rather than refuse to treat. CHWs can have a crucial role in palliative care and symptom control by visiting patients and families frequently at home and by helping them to navigate the local health care system. With as little as three to six hours of training in palliative care, existing CHWs not only can provide important emotional support, but also recognize uncontrolled symptoms, identify unfulfilled basic needs for food, shelter or clothing or improper use of medications, and report their findings to a nurse-supervisor at a health centre (Annex 5). In this way, they can accompany patients in need of palliative care and their families and help to assure their comfort by serving as the eyes and ears of their clinicians. Based on reports by CHWs, it may be possible to arrange an appropriate response to an uncontrolled symptom such as a change in prescription or a home visit by a nurse that does not require the patient to return to the hospital or health centre. Visits by CHWs also can help to reduce the often heavy emotional, physical and financial burden of family caregivers. Capable family caregivers should be trained, equipped and encouraged by clinicians to provide basic nursing care such as wound and mouth care and medicine administration. But care should be taken to assess for unmet social needs of family caregivers who typically are women, often also have work and other child-care responsibilities, and often live in poverty. Clinicians should routinely ask patients with serious or life-limiting health problems or their families if they desire spiritual counselling. Every effort should be made to facilitate access to spiritual counselling by local volunteers that is appropriate to the beliefs and needs of the patient and family. Integrating palliative care and symptom relief into paediatrics 30 Social support Social support for patients and family caregivers living in extreme poverty is needed to ensure that their most basic needs are met such as food, housing and transport to medical care, and to promote dignity. This support should include, as appropriate, basic food packages, cash payments for housing or school fees, transportation vouchers for visits to clinics or hospitals for the patient and a caregiver, and in-kind support such as blankets, sleeping mats, shoes, soap, toothbrushes and toothpaste. These social supports help to ensure that patients can access and benefit from medical care and should be accessible by any patient, not only those in need of palliative care or symptom control. One additional social support that should be accessible for families living in extreme poverty is locally adequate funeral costs. Culturally appropriate burial can be a major financial burden for families, and inability to provide a funeral can become a chronic emotional burden. Augmenting the EP Ped The EP Ped includes only the minimum set of basic medicines, equipment, social supports and human resources that should be accessible by all patients and families in need. It should not be considered sufficient to meet all palliative care or symptom relief needs. Depending on the budget of humanitarian response organizations and the type of health emergency or crisis, the EP Ped may be augmented in various ways. Medicines and other treatments: n paediatric (liquid) formulations of paracetamol, ibuprofen, morphine and diazepam; n topical lidocaine or other local anaesthetic ointment: for preventing pain from procedures; n fentanyl, injectable: for preventing pain from brief procedures or dressing changes and for intravenous analgesia in patients with renal failure; n fentanyl transdermal patches: for patients with moderate or severe cancer pain or pain near the end of life who are unable to take oral medicines or who have renal failure; n slow-acting oral morphine: for patients with moderate or severe cancer pain or pain near the end of life who can take oral medicines; n midazolam, injectable: for moderate sedation prior to painful procedures and for palliative sedation for intractable distress of a dying patient; n hydrogel, topical: for dressing healable wounds; and n access to palliative cancer treatments (radiotherapy, chemotherapy): for patients with incurable cancers. Equipment: n wheelchairs and canes: to improve mobility and reduce burden for family caregivers. Human resources: n palliative care specialist physician: for patients with particularly complex symptom control problems; n child life specialist: to help children cope with illness, disability or loss of family members; and n physical therapist: for injured patients and patients with disabilities. 31 A WHO guide for health-care planners, implementers and managers Interventions for specific patient populations Dying patients In some cases, it is difficult to discern when a child is dying. For patients who may still benefit from disease- modifying or life-sustaining treatment, every effort should be made to obtain this treatment in combination with palliative care. When life-sustaining treatment is deemed more harmful than beneficial for a patient, or when it is no longer desired by the patient and family, it is essential that the patient not be abandoned but rather receive comfort-oriented treatment to prevent and relieve suffering and maximize quality of life. Failure to provide this service is medically and ethically indefensible. The child should be placed in as quiet and private a location as possible and provision made for the family to be present. The prognostic understanding of the patient or family should be gently explored and corrected as needed and as culturally appropriate. Bad news should be conveyed in a manner appropriate for patient’s developmental stage and for the patient’s and family’s culture and history. It should be made clear that there is never an intention to hasten death but that every effort can be made to ensure comfort at all times. Intensive efforts must be made to relieve pain and other symptoms. Comfort-oriented care sometimes requires an intensity and ingenuity that rivals critical care. In addition, patients and family members should have access to psychological first aid, defined by WHO as a “humane, supportive response to a fellow human being who is suffering and who may need support. It entails basic, non-intrusive pragmatic care with a focus on listening but not forcing talk, assessing needs and concerns, ensuring that basic needs are met, encouraging social support from significant others and protecting from further harm” (52). Any doctor should be prepared and permitted to provide non-specialized psychological care that includes psychological first aid and prescription of psychotropic medicines for priority, uncomplicated mental health conditions. Comprehensive WHO guidelines on training non-specialized providers (e.g. doctors, nurses) in the assessment, management and referral of priority mental health conditions are available and should be included in palliative care training curricula (Annex 5) (53). For bereaved adults and children who do not have a mental disorder, it is recommended to follow general principles of care such as communication, mobilizing and providing social support and attention to overall well-being, to offer psychological first aid and encourage and facilitate participation in culturally appropriate mourning practices (52,53). Bereavement support groups led by adequately trained personnel may be helpful (54). Some interventions can be provided safely and effectively by CHWs with basic training (51). Volunteer spiritual supporters should be sought to provide culturally appropriate spiritual support if requested by the patient or family. Protein energy malnutrition Efforts to rescue severely malnourished children should be combined with palliative care to maximize their comfort and to provide psychosocial support for the family. Treatment of adverse effects of re-feeding, such as vomiting and diarrhoea, may not only provide comfort, but also improve survival. The pain or dyspnea of dying children should be relieved and their parents emotionally supported. Neonates Neonates and babies have the highest death rate in the paediatric population. All preverbal children are vulnerable because of their inability to communicate their suffering. However, critically ill neonates are particularly vulnerable because, in many places, neonatal intensive care units offer only life-sustaining treatment and no palliative care. The two are not mutually exclusive: critical care and palliative care can and should be integrated to maximize the comfort of patients who may survive, and that of their parents. In HICs, palliative care is recommended for neonates born at extremely low birth weight (less than 0.5 Integrating palliative care and symptom relief into paediatrics 32 kilograms) and those born before 23 weeks of gestation. In settings where state-of-the-art neonatal intensive care is not accessible, babies born after longer gestation or at higher birth weight may not survive and should receive palliative care. In any setting, palliative care: n should be provided for children born with a life-limiting abnormality or malformation; n should be initiated immediately for family support when a life-limiting abnormality or malformation is discovered during pregnancy or at birth and in case of a stillbirth (psychological, social and spiritual support); n should be integrated with intensive illness-modifying or life-sustaining treatments for critically ill neonates; n should be the only type of care when intensive illness-modifying or life-sustaining treatments will be more burdensome than beneficial and therefore will be withheld or withdrawn; n should assist with decision-making about benefits and burdens of intensive illness-modifying or life- sustaining treatments for critically ill neonates; and n should make bereavement support accessible as needed after a stillbirth or the death of any neonate or child. When a life-limiting fetal anomaly is diagnosed during pregnancy, or when a stillbirth occurs, a midwife or traditional birth attendant can play an important role in providing palliative care. They can provide emotional support and advise the parents on: n spending time with their dying baby, or holding a stillborn baby; n making photographs or handprints and footprints that can become cherished memories and assist the bereavement process; and n organizing baptisms, wakes or other rituals. Obstetrical, neonatal and palliative care policies and procedures should guide the palliative care roles of midwives and traditional birth attendants. They should receive basic training in PPC and be welcomed as members of palliative care teams. 33 A WHO guide for health-care planners, implementers and managers

35 A WHO guide for health-care planners, implementers and managers Implementing PPC and symptom relief Part 1. Integrating PPC into health care systems and structures WHO recommends a public health strategy for integrating palliative care into health care systems in a cost-effective manner to reach all in need (4,55). Inclusion of palliative care in national health care policies is crucial. Without policies that mandate palliative care services, it is unlikely that PPC will become widely accessible or sustainable. In general, the first steps towards integration of PPC into health care systems should be: n a national palliative care policy that requires access for all – specifically including children – to palliative care and to pain control with opioid pain medicines; n a national palliative care strategic plan to create this access within a certain time period; and n inclusion of PPC in any national policies or strategic plans on cancer, noncommunicable diseases (NCDs), paediatrics, HIV/AIDS, drug-resistant tuberculosis or primary health care (PHC). Once such policies and strategic plans are in place, efforts can focus on ensuring accessibility of all essential medicines and equipment, including oral fast-acting and injectable morphine, and on training (Chapter 6). During these efforts, PPC training programmes should be developed. However, if policies do not precede training, most trainees may be unable to practise PPC and may not be paid for doing so. Training can be initiated at a basic level either for primary care physicians or physicians whose specialties entail caring frequently for children with serious or life-threatening health problems. Physicians who complete basic palliative care training should be empowered to prescribe oral fast-acting and injectable morphine for inpatients and outpatients. As soon as possible after implementing basic palliative care training for physicians, other palliative care training programmes should be established: n intermediate-level training should be implemented for physicians whose specialties entail caring frequently for children with serious or life-threatening health problems; n basic palliative care training for practising nurses; and n integration of basic training in palliative care, including PPC, into undergraduate medical, nursing and pharmacy training. Next, or simultaneous with essential medicine procurement and training, PPC services should be integrated into existing service delivery. This can begin at any level of the health care system. However, it may be easiest to implement PPC where the need is most obvious to most staff members: in cancer centres. Initial services can be an inpatient ward, a consultation service or an outpatient clinic. National policies should require PPC services at all cancer centres and, within a period of time, at all levels of the health care system: n second- and third-level hospitals (provincial, regional and specialty hospitals); n first-level (district) hospitals; n CHCs; and n home care. A basic plan for integrating palliative care in general and PPC in particular into health care systems is described in Table 6. This plan can be used for palliative care policies. In LMICs, serious or life-threatening health conditions typically are diagnosed at second- and third-level hospitals, and treatment usually is Integrating palliative care and symptom relief into paediatrics 36 initiated there. Thus, palliative care services should be accessible in these institutions to provide initial symptom control, to maintain symptom control during treatment and to prepare a plan to keep the patient comfortable after discharge to a lower-level facility or to home. When treatment at a second- and third- level hospital is not needed or not appropriate and when the patient’s symptoms are not complex or refractory to treatment, palliative care can be initiated and home care plans made at a first-level hospital. In most cases, home care services based at the patient’s local CHC should be able to provide follow-up care after the patient’s symptoms have been controlled and a palliative care plan made at higher level. In rare cases of severe refractory suffering, a patient may require end-of-life inpatient care at a first-, second- or third-level hospital. Examples include non-viable premature neonates with respiratory failure or patients with severe, refractory pain due to end-stage cancer. In cases where the patient’s symptoms can be well-controlled but where the family lacks the ability to care adequately for the patient at home, the CHC should offer inpatient end-of-life care to a maximum of one or two patients at a time. In most cases, however, the patient should be able to remain at home with follow-up surveillance by a CHW and follow-up care as needed in the home, at the CHC or at the palliative care outpatient clinic of the district (first-level) hospital. It is crucial the national health care policies specify the types of palliative care services that must be implemented at each level of health care systems and also specify the training that each type of palliative care provider should have at each level. Table 6. Palliative care interventions, delivery platforms and providers Intervention Delivery platform Mobile outreach/ home care CHC First-level (district) hospitals Second- and third- level (provincial, regional, specialty) hospitals Ongoing care for patients with well- controlled symptoms related to serious or life-limiting health problems n CHWs provide surveillance and emotional support as often as daily n Visits as needed by nurse, doctor or social worker from the CHC with basic training in palliative care n Nurse and possibly also a doctor or social worker with basic training in palliative care provide outpatient care and possibly home visits as needed n Inpatient hospice care in some cases if the family is unable to provide adequate care at home n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient hospice care if the family is unable to provide adequate care at home and if no inpatient care is available at CHCs n Outpatient palliative care clinic 37 A WHO guide for health-care planners, implementers and managers Initial control of mod- erate or severe symp- toms related to serious, complex or life-limiting health problems Control of refractory suffering n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient palliative care n Outpatient palliative care clinic n Palliative care team consisting of full- or part-time doctors with intermediate training in palliative care n Ideally, a palliative care specialist physician should lead the team at major cancer centres and general hospitals n Inpatient palliative care ward n Outpatient palliative care clinic Source: Adapted from Krakauer et al. 2018 (22). The recommended transfer patterns for patients in need of palliative care are outlined in Figure 5. In general, patients whose health conditions already have been diagnosed and who need palliative care are referred only to the next higher or lower level as appropriate. However, there are several exceptions to this rule: n Patients at second- or third-level hospitals whose symptoms have been well controlled and who wish to return home for palliative home care should be transferred directly to home and the case information transmitted to the local CHC in charge of home care. n Patients who are at home or who are seen at a CHC and found to have severe, complex or refractory suffering that cannot be adequately relieved in the community may be transferred directly to a first- level hospital. However, if the patient already is known at a second- or third-level hospital, then the patient may be transferred directly to that hospital. In all instances, case information should be transmitted to the receiving hospital. n In settings where an inpatient hospice exists, patients may be transferred there from any level of the health care system, and case information should be transmitted. n In settings where a sub-acute care facility or nursing home is available, patients with uncomplicated health problems and well-controlled symptoms may be transferred there from any level of the health care system, and case information should be transmitted. It is crucial that palliative care providers at each level of the health care system be able to communicate easily and reliably with providers at any other level at all times. For example: n a CHW must be able to reach a nurse or supervisor at the CHC quickly at any time to report a problem with a patient; n a provider at a CHC must be able to reach a supervisor at the district level quickly at any time for advice on a complicated case; and Integrating palliative care and symptom relief into paediatrics 38 n a provider at a third-level hospital must be able to reach the appropriate person at a CHC to provide information about a patient who will be sent home for home palliative care. Typically, this communication will be by mobile phone. Texting usually is inadequate to convey important clinical information. For LMICs with inadequate established referral systems, a standardized palliative care handover form that records the patient’s clinical and social history, including disease-modifying and palliative treatments, key family members and caregivers, and any agreed-upon goals of care, is very conducive to optimum care. Budgets for palliative care should include funding for telecommunications and printing of such forms as well as for transportation for CHC staff members to visit patients at home as needed. It also is crucial that palliative care training of all levels be integrated into the health care education system in each country or region for all types of palliative care providers, including physicians, clinical officers, assistant doctors, nurse practitioners, midwives, nurses, pharmacists and social workers. Typically, this training should be offered by a university that has a medical school, nursing school, pharmacy school and social worker school, but sometimes the training may be offered in separate schools for different professions. Creation of a department of palliative care or palliative care training centres at universities are encouraged (Figure 5). Figure 5. Referral patterns for patients in need of palliative care CHC, community health centre; CHW, community health worker; CO, clinical officer; IDT, interdisciplinary team; PC, palliative care; PPC, paediatric palliative care a Temporary inpatient care that provides a respite from caregiving for the family. University-based palliative care department or centre Training: all levels for all members of IDTs except CHWs Research: needs assessment, outcomes research, quality assurance Technical assistance for policy writing, clinical service implementation Advocacy First-level (district) hospital Small palliative care IDT: n generalist physician(s) n nurses n social worker(s) Small inpatient unit, outpatient clinic CHC PPC provided by: n generalist physician, CO or assistant doctor with basic PPC training or nurse with advanced PC training that includes PPC n nurses with basic PC training n social worker Outpatient clinic, inpatient hospice care in special cases Second-level (provincial)/third-level (regional) hospital Palliative care IDT: n palliative care specialist physician(s) (physicians with intermediate-level palliative care training until specialists available) n nurses n social workers and/or psychologists n spiritual supporters Inpatient ward, inpatient consultation, outpatient clinic Home care CHW or volunteer supervised by nurse at CHC Nurse based at CHC as needed Sometimes doctor, CO or assistant doctor based at CHC, as needed Inpatient hospice (in some countries) IDT: n part- or full-time palliative care specialist physician (physicians with intermediate level palliative care training until specialists available) n nurses with at least basic PC training n social worker and/or psychologist Terminal inpatient care when home care not desirable or possible; also respite carea acute care facility/nursing home (in some countries) n Nurses with at least basic PC training n Supervision by generalist or PC specialist physician n Simple inpatient care for patients with minimal or no symptoms when home care not desirable or possible n Respite carea 39 A WHO guide for health-care planners, implementers and managers Part 2. Models of palliative care delivery Within the general plan for integrating palliative care into health care systems described in Part 1 of this chapter, various models will be necessary to fit the structure of the health care system in a given country and the strategic plans of the country’s MOH, and to assure that all patients in need of palliative care will have access to it (Table 7). For example: n in some settings, a home care model that entails mobile palliative care teams based at district or community levels and frequent telephone check-ins with the patient or family by telephone may supplant a model that relies on CHWs; and n in some hospitals, a strong and active palliative care consultation service that works closely with link nurses in each ward with basic palliative care training may obviate the need for an inpatient palliative care ward (Textbox 2). Table 7. Models of palliative care delivery Location Services Home care By staff members of a CHC with or without CHWs: n Family members, friends or community volunteers provide most care with support from CHWs or volunteers who visit frequently and report to a nurse at the CHC n A nurse (and sometimes also a doctor) from the CHC visits as needed and/or at regular intervals n A visiting nurse may be able to deliver medicines in some settings n A nurse with advanced training or a doctor may be able to prescribe an opioid dur- ing a home visit By a mobile team: n A team typically consisting at least of a doctor and nurse visits at regular intervals and when called by the patient or family. n In some settings, team members may be able to prescribe and/or deliver medicines including opioids Outpatient clinic Palliative care clinics may be based at CHCs or at hospitals of any level The clinic at a CHC would handle only simple palliative care problems, while the most complex problems should be addressed at the clinic of a third-level hospital where the most highly trained palliative care clinicians should work Clinics at all hospitals should have clinicians able to prescribe morphine for outpatients, and all hospitals pharmacies should stock oral fast-acting and injectable morphine Inpatient care – hospital Consultation model: Physicians trained in palliative care provide advice to the patient’s responsible physician who then decides how to implement the advice Inpatient unit model: A room or ward devoted entirely to palliative care and staffed only by physicians and nurses trained in palliative care Inpatient care – hospice A house, hospital or hospital ward devoted entirely to end-of-life care and staffed by an IDT that includes physicians and nurses trained in palliative care Day care A location staffed by a nurse and CHWs or volunteers where patients receiving palliative care who are able to walk or travel by wheelchair can spend the day under supervision to enable family members to work or have respite time Integrating palliative care and symptom relief into paediatrics 40 Box 2. Inpatient palliative care services at Mulago National Referral Hospital, Uganda At Mulago National Referral Hospital in Uganda, a palliative care link nurse programme was established. Nurses throughout the hospital, in both adult and paediatric units, were trained to provide basic palliative care and to refer patients with complex needs to the hospital’s specialist palliative care team. As a result, the number of patients receiving palliative care increased dramatically. The majority (86%) required only basic palliative care from a link nurse, and 14% were referred for specialist palliative care. This programme demonstrated integration of palliative care into generalist services, ensured that generalist palliative care provision was accessible to all in need throughout the hospital and reached a far greater number of patients than could be seen by the specialist team alone. It also ensured that those receiving specialist care were those with the greatest complexity of need (56). Part 3. Training in palliative care and symptom relief The 2014 World Health Assembly resolution WHA67.19 on palliative care urges each Member State to integrate into its health care education system three levels of palliative care training (Annex 4) (4): 1. Basic training and continuing education in palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers. 2. Intermediate training in palliative care should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine. 3. Specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs. Basic training in palliative care of approximately 35 hours should be included in all curricula of medical schools and nursing schools (Annex 5). The training may be offered either as a discrete course in the last year of medical or nursing school or integrated into other courses throughout the curriculum. For example, training on pain can be integrated into a course on the nervous system, and training on patient–clinician communication can be integrated into courses on psychiatry or medical ethics. The training should include both classroom and bedside teaching. Basic palliative care training also should be provided for all primary care clinicians unless their responsibilities preclude contact with patients in need of palliative care. Intermediate-level palliative care training, lasting approximately 70 hours, should be integrated into specialist training curricula in all fields that entail treating patients with serious or life-threatening illnesses. In addition to paediatrics, oncology, infectious diseases, geriatrics and internal medicine, these include haematology, critical care, family medicine, tuberculosis, hepatology, neurology, cardiology, pulmonology, nephrology, neonatology, traumatology, anaesthesiology and surgery. The training should consist of both classroom teaching and hands-on, supervised clinical experiences. Specialists in these fields, who work mainly in hospitals, should be prepared to provide direct palliative care to their patients. In addition, the physicians who work full- or part-time on hospital-based palliative care teams should have at least intermediate-level palliative care training. 41 A WHO guide for health-care planners, implementers and managers As soon as possible, palliative care IDTs at second- and third-level hospitals should be led by palliative care specialist physicians. Thus, LMICs should work to develop palliative care specialist training programmes that can supply palliative care specialist physicians for their country or region. Specialist training programmes should last at least one year but will vary according to each country’s postgraduate medical training regulations. Although it is best if clinicians providing PPC are fully trained in paediatrics and provide care only for children, generalist clinicians such as general practitioners, family doctors and primary care nurses can and should be trained and competent to provide PPC whenever paediatric specialists are not needed or not available. Basic and intermediate-level palliative care training aims not at specialization but rather at essential competencies (57). General domains of competency in palliative care include: n principles of palliative care n communication n optimizing comfort and quality of life n care planning and collaborative practice n loss, grief and bereavement n professional and ethical practice in the context of palliative care n professional resilience. Essential competencies in PPC are described in Table 8. Generalists providing PPC should be able to obtain advice by telephone at any time from a paediatrician with intermediate-level palliative care training or a palliative care specialist physician. Such task shifting and task sharing is especially crucial in rural areas. Table 8. Essential competencies in PPC Key competency Key components Paediatric symptom assessment (pain and non-pain) Use age-specific methods to assess symptoms such as pain, nausea, dyspnea, anxiety, depression, etc. Appropriate medication selection, dosing and administration Implement age and weight-based dosing with attentiveness to paediatric metabolism and excretion Use non-opioid, opioid and adjuvant therapies aligned with WHO principles; include appropriate use of scheduled along with as-needed doses for breakthrough pain Create/disseminate pharmacologic and non-pharmacologic treatment plan to include emergency plan; place emergency medications in the home with training for caregivers Refer to higher level for more specialized palliative care when needed Psychosocial assessment and intervention (patient and family) Identify and address the child’s and family’s illness understanding, fears and concerns, including those of siblings Assure child and family they will not be abandoned Identify child’s and family’s coping and communication styles and adjust care plan accordingly Communicate with child in a developmentally appropriate fashion Gently explore previous experiences with death, dying, other traumatic life events or special issues such as substance abuse or suicidal ideation, and adjust care plan to minimize further psychosocial stress Use play therapy such as music, storybooks, art for expression, reflection and distraction. Recognize impact of child’s illness on larger community (faith groups, school, etc.) – offer to family to help communicate with school or community agencies Assess family’s resources for bereavement support; make bereavement follow-up plan as needed Integrating palliative care and symptom relief into paediatrics 42 Disease trajectory recognition Consider how manifestations and trajectory of disease may differ from adults and between children of different ages Provide developmentally appropriate anticipatory guidance regarding physical changes and symptom burden to decrease child’s fear of the unknown Developmentally informed and context- appropriate communication Explore child and family emotions and behaviours Use play, art or storytelling to explore child’s experience Truth-tell in a manner appropriate to patient’s development, clinical situation and context Recognize that children grieve, worry about their family members and fear burdening their family members Decision-making and advance care planning Include the patient in decision-making as appropriate for the patient’s values, culture and developmental stage Adjust care plan according to culture, coping and communication styles Honour relevant ethical principles, cultural norms and legal guidelines as appropriate Identify key decision-makers and provide information as necessary Spiritual concerns as part of care Consider referral to an appropriate spiritual care provider Offer to assist in explaining child’s illness to spiritual provider, with permission Allow time for reflection on life meaning and purpose Goals of care Determine whether the goal of care is cure, maintenance of current level of health, comfort, or mixed When the goals of care preclude intensive life-sustaining treatment, write orders to protect the patient from cardiopulmonary resuscitation or other interventions inconsistent with the goal of care Develop care plan with the patient and/or family that integrates awareness of patient symptoms and disease trajectory with desires and goals of patient and family Provide guidance on best location of care (home, hospital, hospice) to achieve agreed- upon goals of care Support tangible needs Offer and arrange as much assistance as may be needed and as possible such as: n medical equipment (wheelchair, cane, suction, commode, hospital bed for the home) n social supports (food packages, cash transfers for rent or school tuition, transportation vouchers, in-kind support) n community services (visits from CHWs, nurses, mobile palliative care teams) Source: Himelstein et al. 2004 (58). 43 A WHO guide for health-care planners, implementers and managers Various curricula in PPC are available and may be adapted for use in any country (Table 9). Care should be taken when adapting a curriculum from an HIC to ensure it is as relevant as possible to the local clinical and cultural situation. For example, it should discuss only medicines in the EP Ped and those that are accessible or may soon become accessible in the country. Table 9. Paediatric palliative care (PPC) curricula Education in Palliative and End-of-life Care (EPEC – Pediatrics) Developed for the United States and HICs. The curriculum consists of 19 online distance-learning modules and 5 in-person face-to-face conference sessions. http://bioethics.northwestern.edu/programs/epec/curricula/pediatrics.html International Children’s Palliative Care Network (ICPCN) e-learning programme Developed in South Africa, intended for both professionals and lay people who participate in palliative care for children. A clinical site where children’s palliative care is being practised is required so that the learner can undertake the clinical assessment which forms part of the course. http://www.icpcn.org/icpcns-elearning-programme/ End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) Developed for the United States and HICs. Adapted from the ELNEC-Core curriculum to meet the needs of children and their families. The 10 modules include perinatal and neonatal content. http://www.aacnnursing.org/ELNEC/About Harvard Medical School Center for Palliative Care, Global Program, Pediatric Palliative Care Curriculum for Low- resource Settings Developed for Viet Nam and LMICs. Can be downloaded and adapted to local clinical and cultural situations. http://www.massgeneral.org/palliativecare/education/international_program.aspx Given that most care for children with serious or life-threatening health conditions is provided by family members and at home, basic, patient-specific training should be provided to family caregivers. The training should be provided by a nurse from the local CHC or from a mobile palliative care team. It may include medicine administration, wound care, safe feeding, infection control, avoiding burn-out, and when and how to request help. Materials for training family caregivers also are available (Table 10). Table 10. Training materials for family caregivers Institute of Palliative Medicine (Calicut, Kerala, India) Palliative care: a workbook for carers Developed for India and other LMICs. http://www.instituteofpalliativemedicine.org/downloads/Palliative%20Care%20Workbook%20for%20Car- ers.pdf Home-based Palliative Care Training and Support Package for Young Children in Southern Africa Developed in South Africa, a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in Southern Africa. Contact: snaicker@hsrc.ac.za

45 A WHO guide for health-care planners, implementers and managers

47 A WHO guide for health-care planners, implementers and managers Ensuring access to essential medicines Strong opioids such as morphine are essential for the treatment of pain caused by cancer, HIV/AIDS and other serious illnesses and due to traumatic injuries, burns and surgery. Yet despite being included on the WHO Model List of Essential Medicines for both adults and children, morphine has not been accessible at all times in adequate amounts, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford (45,59). Of the world’s population, 75% lacks access to morphine or another strong opioid when clinically indicated to treat pain. WHO estimates that 5.5 million terminal cancer patients and 1 million end-stage HIV/AIDS patients worldwide suffer each year without adequate treatment for moderate to severe pain. International drug regulatory bodies, such as the International Narcotics Control Board (INCB), have acknowledged that their emphasis historically has been on restricting opioid misuse and abuse, rather than on ensuring the medical availability of opioids (60). Yet the United Nation’s Single Convention on Narcotic Drugs, which virtually all nations have signed, states that nations must both minimize the risk of abuse and diversion of opioids and ensure their availability for medical and scientific purposes (61). This dual obligation of governments is called the principle of balance, a principle that has been affirmed by WHO (62,63), the United Nations Commission on Narcotic Drugs and the United Nations General Assembly. Governments should ensure that all physicians involved in patient care are both legally permitted and institutionally authorized to prescribe and administer strong opioids such as morphine according to the medical needs of patients. Governments also should ensure that a sufficient supply of morphine is available to meet all medical needs. While misuse of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor interfere in their legitimate medical use for patient care. To fulfil the requirements of the Single Convention and of acceptable medical practice, every effort should be made to identify the barriers to opioid availability within each country. Typically, these barriers include: n overly restrictive regulations on opioid prescribing and dispensing; n inadequate education of doctors, nurses and pharmacists in pain control and the appropriate use of opioids; and n lack of understanding of the appropriate use of opioids among drug regulators who often focused only on the reducing the risk of misuse and abuse and not at all on making these medicines available. Examples of overly restrictive regulations include (64): n a requirement that physicians purchase special opioid prescription pads; n a requirement that all opioid prescriptions for outpatients be signed not only by the prescribing physician, but also by a supervisor or an anaesthesiologist; n permitting only specifically designated physicians to prescribe opioids; n permitting only specialist physicians to prescribe opioids and not general practitioners or family doctors; n restricting opioids to inpatients or to patients receiving hospice services; n limits on opioid dose; n limits on opioid prescriptions and dispensing to less than a 30-day supply when risk of diversion is minimal; and n restricting family practitioners and general practitioners from prescribing them. Integrating palliative care and symptom relief into paediatrics 48 All health systems establish a system to monitor the flow of opioids from import or manufacture to use by the patient (65). In the inpatient setting, there should be verification of opioids taken by the patient. In the outpatient setting, there should be verification of opioids handed over by a pharmacist or clinician to the patient or to a family member on behalf of the patient, minus any amount returned to the pharmacy or clinician by the patient or family. Such a system should not interfere with access to opioids for medical uses but rather ensure continued availability of these medicines. So-called stock-outs and other supply chain failures result in patients suffering both from opioid withdrawal symptoms and from pain and can increase the risk of illicit opioid use and suicide too (66). The Single Convention requires all countries to report annual opioid consumption to the INCB. Together with other health statistics, this reporting is crucial for estimating a country’s expected opioid need the following year and for the INCB to officially allocate the amount needed (67). The INCB has defined various methods for countries to calculate their expected need. Increases in allocation from one year to the next can be requested based on, for example, expected improvements in health care services or on revised estimates of disease prevalence. The INCB uses the pooled estimates from all countries to ensure that the appropriate quantity of opioids is available globally. 49 A WHO guide for health-care planners, implementers and managers

51 A WHO guide for health-care planners, implementers and managers Integration of palliative care and symptom relief can strengthen health care systems and promote UHC Improved quality of life Palliative care has been associated with improved patient outcomes, with financial risk protection for patients and their families and with reduced costs for health care systems (3). Improved patient outcomes include better control of pain and other symptoms, decreased spiritual distress, enhanced quality of life, improved patient and family satisfaction, and reduced number of physician office visits, emergency department visits, hospitalizations and days in the intensive care unit at the end of life (68,69). These improvements tend to be greatest when palliative care is initiated early in the course of illness (69). In some cases, provision of palliative care has been associated with prolonged survival (70). Less data are available on outcomes of palliative care for children than for adults. However, PPC has been associated with improvements in health- related quality of life, emotional well-being and family satisfaction (40,43,71). Thus, evidence indicates that integration of palliative care enables health care systems to better achieve their mission of improving the well-being of those they serve. Improved treatment outcomes Palliative care should not be considered only as an alternative to curative or life-sustaining treatments of dubious benefit, but also as an essential complement to curative or disease-modifying treatments for serious or life-threatening health conditions. Adherence to curative or disease-modifying treatments can be difficult when symptoms of the disease or adverse effects of the treatment are not prevented or adequately relieved. Thus, palliative care may improve adherence particularly to toxic treatments such as those for drug-resistant tuberculosis and many cancers (72). Among the global poor, poverty and other social problems also commonly make adherence difficult. In LMICs, treatment abandonment – the failure to start or complete medically indicated curative therapy – is a major cause of therapeutic failure in potentially curable childhood cancers (73). Specific reasons for treatment abandonment have been found to include financial difficulties as well as distress caused by side-effects and by poor relationships with health care workers (74). PPC could ameliorate all of these problems. Social supports such as those described in Chapter 4 also have been shown to reduce treatment abandonment and improve a patient’s ability to adhere to treatment (74–76). Thus, palliative care not only can improve patients’ comfort, but also strengthen the ability of health care systems to effectively treat their serious and life-threatening conditions. Lower costs for health care systems and financial risk protection for families In many countries, patients and their families bear most of the burden of caring for patients with serious or life-threatening health problems. In addition to the often extreme emotional stress, families of medically ill children often experience profound social and economic burdens, including isolation, loss of income and catastrophic health care spending. Family caregivers, who usually are women or children, may be unable to work, go to school or participate in social activities because of the demands of caregiving. When patients go to the hospital in low-income settings, a family caregiver often must leave income-generating activities, school or caregiving for other children to accompany the patient. This puts patients’ families at risk of financial ruin and caregivers at risk of exhaustion and health problems of their own (22,77,78). Integrating palliative care and symptom relief into paediatrics 52 Multiple studies from HICs indicate that palliative care can reduce costs for patients and families, as well as for health systems (79–83). Palliative care networks that include community-based care and home care, as described in Chapter 4 can enable patients to remain at home and comfortable rather than return to a hospital for symptom relief. They also may reduce demand for expensive disease-modifying treatments of dubious benefit near the end of life by providing a compassionate alternative and supportive counselling, and they can reduce the length of stay for patients already in the hospital by making symptom control accessible in the community. Families thereby are spared the costs of unnecessary admissions to the hospital, including transportation for the patient and caregiver to the hospital, hospital co-payments and lodging costs for the family caregiver. Because the family caregiver can remain at home and may be able to work at least part-time, there also may be less loss of income. Caregivers who are children may also be able to remain in school (84–89). Palliative care integration also can reduce costs for health care systems. As populations age, and as the prevalence of chronic NCDs rises, an increasing percentage of the health care budget is being spent on hospital inpatient care near the end of life that increasingly includes aggressive disease-modifying treatments or life-sustaining treatments of doubtful medical benefit (86,90). Palliative care integrated into health care systems at all levels and including home care can reduce health care costs by decreasing unnecessary or non-beneficial resource utilization (86). Rather than spending the last days, weeks or months of life in hospitals, patients can receive care at home or in the community that is less expensive and yields better outcomes. In addition, overcrowding in second- and third-level hospitals can be reduced. Thus, palliative care can help health care systems produce better results at lower cost (22). An additional benefit for health care systems and for public health can accrue from cost-effective palliative home care. CHWs, nurses from CHCs and mobile palliative care team members who visit patients at home can do more than palliative care. Home visits provide an opportunity for many other primary prevention and screening interventions, including: n teaching about smoking cessation, indoor air quality, diet and exercise; n encouraging prenatal care, childhood vaccinations, cervical cancer screening and HIV prevention and testing; and n tuberculosis and cancer case-finding. Thus, creating or enhancing home care capacity for palliative care also can strengthen capacity for disease prevention and early diagnosis. In addition, the communication links between each level of health care systems that are necessary for palliative care can be used to reduce loss to follow-up. Staff members of hospital-based services, such as cancer chemotherapy or specialist clinics, can inform CHCs of impending appointments, and CHWs can then remind patients and uncover any impediments to the patient’s ability to keep the appointment in time for CHC staff to find a solution. Promotion of UHC In 2015, United Nations General Assembly resolution 70/1 established the Sustainable Development Goals (SDGs) (91). SDG 3 aims to ensure healthy lives and promote well-being for all at all ages, and SDG 3.8 is about achieving UHC, including financial risk protection, access to quality essential health care services and access to safe, effective, quality and affordable essential medicines and vaccines for all. Palliative care exists to attend to, accompany and ensure the well-being of those with serious or life-threatening health problems whose health care needs exceed disease treatment. Thus, palliative care is essential to the achievement of SDG 3 and UHC. WHO specifically mentions palliative care in its definition of UHC: “The UHC means that all individuals and communities receive the health services they need without suffering financial hardship. It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation and palliative care” (92). 53 A WHO guide for health-care planners, implementers and managers

55 A WHO guide for health-care planners, implementers and managers Research and quality improvement in paediatric palliative care To develop high-quality, cost-effective palliative care services for children, research and quality improvement initiatives are much needed (93–95). The 2014 World Health Assembly resolution WHA67.19 on palliative care asserts the importance of evidence-based palliative care (Annex 4) (4). Likewise, WHO has called for research on evidence gaps identified during development of the WHO Guidelines on the pharmacological treatment of persisting pain in children with medical illnesses (96,97). Currently, however, there is a dearth of evidence on PPC, especially from LMICs where the vast majority of patients in need are located. There are a variety of significant barriers to research in palliative care in general, especially in LMICs (29,94,98–100). These include: n difficulty in identifying useful and researchable outcome measures; n lack of research funding; n absence of national and institutional research strategies; n lack of a research infrastructure and culture in LMICs, including adequate and timely research ethics approval processes; and n lack of research skills and overwhelming patient load in LMICs. While all efforts are needed to reduce or eliminate all barriers, this chapter focuses on research priorities for PPC. A wide range of national and global priorities for research in PPC have been proposed, including studies of (95, 101–104): n palliative care needs of children in specific locations (situation analyses); n relative effectiveness of interventions for pain and other symptoms (95); n clinical outcomes such as quality of life; n effectiveness of training on palliative care-related knowledge and attitudes; n existence and degree of implementation of palliative care policy; n optimum models of care; n trust in health care providers; n ethical issues; and n cost and cost-effectiveness of palliative care. Palliative care needs assessment or situation analysis To design palliative care services that provide optimum benefit for a specific population, the most common and most severe types of suffering must be known. When no such data exist on the target population, palliative care situation analyses should assess all categories of suffering: physical; psychological; social; and spiritual. The target population may be small or large. It may be just one community, clinic population or hospital (105–107), or it may be an entire region or country (108,109). The situation analysis may use multiple detailed surveys (109), or it may use only one short survey. Ideally, data on types of suffering should be collected directly from patients rather than from family members or clinicians. However, because very young children are unable to participate in surveys, data must be obtained either from family members Integrating palliative care and symptom relief into paediatrics 56 or using validated tools for assessing symptoms in preverbal or linguistically impaired children (110,111). Older children who are in severe discomfort or near the end of life often are unable to participate in long surveys. Thus, there is a benefit to using very concise surveys that nevertheless address all types of suffering. One example is the Palliative Outcomes Scale that exists in several forms for various populations and has been validated in several languages (112,113). This instrument can yield useful information both for researchers and for clinicians. It is brief enough to be incorporated into routine hospital or clinic forms for recording patient history and physical examination, and these forms, whether electronic or hardcopy, can be used both for palliative care situation analysis and quality assurance assuming appropriate research ethics regulations are followed (105). Design of optimum palliative care services for a population also depends on understanding of common cultural and religious conceptions of illness, treatment and death, and of common attitudes towards health care providers and the health care system (114–119). In addition, children’s attitudes towards illness, treatment and death change along with their physical, emotional, psychological and spiritual development, and all people’s attitudes are influenced by personal experience (120). Thus, research is needed on trends in what children with serious or life-threatening illnesses and their families experience in specific geopolitical, cultural, religious and economic contexts. Attitudes of health care providers at all levels towards palliative care also warrants investigation. For example, irrational fear of prescribing opioids is common and commonly results in poor care and outcomes (121). If such opiophobia is discovered, it can be addressed through education. Optimum PPC treatments There is a need for research to assess the effectiveness of palliative care treatments in general, and the need for such studies in children is even greater. Studies of the safety and relative effectiveness of palliative medicines in children are difficult for many reasons, including the relatively small number of potential research subjects, the inability of children to provide informed consent and the necessary ethical guidelines to protect vulnerable subjects in addition to the barriers to palliative care research cited above. However, WHO has proposed detailed and ranked priorities for research on medical management of persisting pain in children (Table 11). 57 A WHO guide for health-care planners, implementers and managers Table 11. WHO priorities for research on pharmacologic treatment of persisting pain in children with medical illnesses First group of priorities n Assessment of two-step treatment strategy. n Research on alternative strong opioids to morphine (comparative trials of opioids in terms of effectiveness, side-effects and feasibility of use). n Research on intermediate potency opioid analgesics (e.g. tramadol). n Long-term safety data concerning first-step medicines (ibuprofen/paracetamol). Second group of priorities (neuropathic pain) n Antidepressants, specifically tricyclic antidepressants and selective serotonin reuptake inhibitors and newer antidepressants of the class of serotonin and norepinephrine reuptake inhibitors for persisting neuropathic pain in children. Gabapentin for persisting neuropathic pain in children. n Ketamine as an adjuvant to opioids for refractory neuropathic pain in paediatric patients with longterm medical illness. Third group of priorities n Randomized controlled trials (RCTs) on alternative routes to the oral route of opioid administration (including RCTs comparing subcutaneous and intravenous routes). Fourth group of priorities n Update Cochrane reviews on opioid switching including paediatric data, if available. n Randomized controlled trials on opioid switching and research on dose conversion in different age groups. n Randomized controlled trials on short-acting opioids for breakthrough pain in children. Other areas for research and development n Research and psychometric validation of observational behaviour measurement tools for persisting pain settings (neonates, infants, preverbal and cognitively impaired children). n Prospective clinical trials to investigate opioid rotation protocols and their efficacy in preventing side- effects or opioid tolerance and dose escalation. n Development of divisible, dispersible, oral solid-dosage forms of paracetamol and ibuprofen. n Research into appropriate formulations for the extemporaneous preparation of oral liquid morphine. Dissemination of available evidence on the preparation of stable extemporaneous formulations. n Child-appropriate oral solid dosage forms of opioid analgesics. n Research on equianalgesic dosages in conversion of opioid analgesics for different age groups. Source: WHO 2012 (97). Ongoing data collection on PPC integration, accessibility, quality and outcomes The degree of integration of PPC into a health care system, and its accessibility, may be assessed with a few output measures such as those developed by WHO for its periodic survey of NCD country capacity around the world (122). Such a study might explore: n whether government funding is provided for PPC; n whether there is a national policy that includes PPC and whether a national policy on paediatrics includes palliative care; Integrating palliative care and symptom relief into paediatrics 58 n whether such policies are operational, under development or not in effect; n whether oral morphine is available in over 50% of the inpatient and outpatient paediatric care facilities of the public health sector; n whether palliative care is accessible by over 50% of paediatric patients in the public health system; and n whether palliative home care is accessible by over 50% of paediatric patients in the public health system. To periodically assess the quality and outcomes of PPC, the same instruments used for palliative care situation analyses can often be used. Where feasible, however, WHO endorses health technology assessments (HTA) to systematically evaluate the properties, effects and/or impacts of health interventions (Figure 6) (123). HTA covers both the direct, intended consequences of interventions and their indirect, unintended consequences. The approach is used to inform policy and decision-making in health care, especially on how best to allocate limited funds to health interventions. The assessment is conducted by interdisciplinary groups using explicit analytical frameworks, drawing on clinical, epidemiological, health economic and other information and methodologies. It may be applied to interventions, such as including home care in public health insurance coverage, rolling out broad public health programmes such as palliative care, priority setting in health care, identifying health interventions that produce the greatest health gain and offer value for money, and formulating clinical guidelines. Figure 6. Health technology assessment: a tool to inform decision-makers in support of UHC Source: WHO 2018 (124). All providers of PPC, whatever the care setting, should be committed to continuous improvement of the quality of their services. Data collected from quality indicators are a primary source of information for improving services. A basic framework for indicators that can be used to assess the key domains of national or regional programmes is described in Table 12. These indicators are adapted from a previous WHO guide for planning managers (7). Fragile states HTA, define Essential services Emergency kits Disaster planning Low-income countries with low coverage HTA, define Primary health care packages Middle-income countries with low coverage HTA, define Guaranteed packages of care Strong health system HTA, define Marginal analysis for additions to packages H ea lt h s ys te m s Continuum of HTA activities 59 A WHO guide for health-care planners, implementers and managers Table 12. Sample indicators for assessing enhanced access to palliative care in PHC Type of indicator Indicator Unit of measure Policy Existence of a current national paediatrics strategy or plan that includes palliative care plan/programme Yes/No Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) included in universal health coverage Yes/No Laws and regulations in place for safe and effective opioid prescribing in line with international drug conventions at the district level? At the community level? Yes/No Yes/No Education Proportion of medical schools that include paediatric palliative care education in undergraduate curricula Ratio of medical schools with paediatric palliative care education at undergraduate level to total medical schools Proportion of nursing schools that include paediatric palliative care education in undergraduate curricula Ratio of nursing schools with paediatric palliative care education at undergraduate level to total nursing schools Proportion of medical technical schools (for training clinical officers, assistant doctors, nurse practitioners, or feldshers) that include paediatric palliative care education in undergraduate curricula Ratio of medical technical schools with paediatric palliative care education to total medical technical schools Service provision Inclusion of paediatric palliative care on the official list of services provided at the primary care level Yes/No Number of communities that provide paediatric palliative care services Ratio of number of communities that provide palliative care services to number of communities Essential medicines Consumption of strong opioids per cancer death Average milligrams of oral morphine equivalents per number of deaths All WHO essential medicines for palliative care included on the national list of essential medicines Yes/No Proportion of districts where oral morphine is available in primary health care Ratio of districts with oral morphine available in primary care to total districts Outcomes Percentage of paediatric patients who had access to palliative care at the time of death Percentage of deceased patients that had access to paediatric palliative care. 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BMC Palliat Care. 2011;10:12 (http://www.biomedcentral.com/1472-684X/10/12, accessed 17 March 2018). 108. Shawawra M, Amal Dweib Khleif AD. Palliative care situation in Palestinian Authority. J Pediatr Hematol Oncol. 2011;33:S64–S67. 109. Ministry of Health of Viet Nam. Palliative care in Vietnam: findings from a rapid situation analysis in five provinces. Hanoi: Government of Viet Nam; 2006 (http://www.fhi.org/NR/rdonlyres/ eipvd7xpozuuv2fahngvco7hd56bagz5kesspc4gpfdkjo5ljfkxwib2bavaegcfwvv7icesvoltnp/ RSAReportEng.pdf, accessed 17 March 2018). 110. Krechel SW, Bildner J. CRIES: A new neonatal postoperative pain measurement score: initial testing and reliability. Paediatr Anaesth. 1995;5:53–61. Integrating palliative care and symptom relief into paediatrics 66 111. Merkal S, Voepel-Lewis T, Shayevitz JR, Malviya S. The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatr Nurs. 1997;23(3):293–7. 112. Eisenchlas JH, Harding R, Daud ML, Pérez M, De Simone GG, Higginson IJ. Use of the Palliative Outcome Scale in Argentina: a cross-cultural adaptation and validation study. J Pain Symptom Manage. 2008;35:188–202. 113. Harding R, Sherr L, Albertyn R. The status of paediatric palliative care in sub-Saharan Africa: an appraisal. London: The Diana Princess of Wales Memorial Fund; 2010. 114. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc. 2002;50(1):182–90. 115. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274(10):820–5. 116. Fox K. Cultural issues in pediatric care. In: Behrman RE, Kliegman R, Jenson HB, editors. Nelson textbook of pediatrics, 16th edition. Philadelphia: Saunders, 1999. 117. Kagawa-Singer M. Diverse cultural beliefs and practices about death and dying in the elderly. In: Wieland D, editor. Cultural diversity and geriatric care. New York: Haworth Press, 1994. 118. Klessig J. The effect of values and culture on life-support decisions. West J Med. 1992;157:316–22. 119. Koenig BA, Gates-Williams J. Understanding cultural differences in caring for dying patients. West J Med. 1995;163:244–9. 120. Anghelescu DL, Oakes L, Hinds PS. Palliative care and pediatrics. Anesthesiol Clin. 2006; 121. 24:145–61. 122. Larue F, Colleau S, Fontaine A, Brasseur L. Oncologists and primary care physicians’ attitudes toward pain control and morphine prescribing in France. Cancer. 1995;76(11):2375–82. 123. Sharkey L, Loring B, Cowan M, Riley L, Krakauer EL. National palliative care capacities around the world: results from the World Health Organization Noncommunicable Disease Country Capacity Survey. Palliat Med. 2017. doi: 10.1177/0269216317716060. [Epub ahead of print] 124. Economist Intelligence Unit. Global access to healthcare: building sustainable health systems. London: The Economist; 2017. 125. Health technology assessment: a tool to inform decision makers in support of UHC. Geneva: World Health Organization; 2018 (http://www.who.int/health-technology-assessment/about/en/, accessed 5 April 2018). 67 A WHO guide for health-care planners, implementers and managers Annexes Annex 1 Convention on the Rights of the Child (excerpts) Adopted and opened for signature, ratification and accession by United Nations General Assembly resolution 44/25 of 20 November 1989 Entry into force 2 September 1990 http://www.ohchr.org/Documents/ProfessionalInterest/crc.pdf PART I Article 3 1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration. 2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures. 3. States Parties shall ensure that the institutions, services and facilities responsible for the care or pro- tection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervi- sion. Article 23 1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community. 2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child. 3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. 4. States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning Integrating palliative care and symptom relief into paediatrics 68 methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries. Article 24 1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures: (a) To diminish infant and child mortality; (b) To ensure the provision of necessary medical assistance and health care to all children with emphasis on the development of primary health care; (c) To combat disease and malnutrition, including within the framework of primary health care, through, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking-water, taking into consideration the dangers and risks of environmental pollution; (d) To ensure appropriate pre-natal and post-natal health care for mothers; (e) To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breastfeeding, hygiene and environmental sanitation and the prevention of accidents; (f) To develop preventive health care, guidance for parents and family planning education and services. 3. States Parties shall take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children. 4. States Parties undertake to promote and encourage international co-operation with a view to achieving progressively the full realization of the right recognized in the present article. In this regard, particular account shall be taken of the needs of developing countries. Article 27 1. States Parties recognize the right of every child to a standard of living adequate for the child’s physical, mental, spiritual, moral and social development. 2. The parent(s) or others responsible for the child have the primary responsibility to secure, within their abilities and financial capacities, the conditions of living necessary for the child’s development. 3. States Parties, in accordance with national conditions and within their means, shall take appropriate measures to assist parents and others responsible for the child to implement this right and shall in case of need provide material assistance and support programmes, particularly with regard to nutrition, clothing and housing. 4. States Parties shall take all appropriate measures to secure the recovery of maintenance for the child from the parents or other persons having financial responsibility for the child, both within the State Party and from abroad. In particular, where the person having financial responsibility for the child lives in a State different from that of the child, States Parties shall promote the accession to international agreements or the conclusion of such agreements, as well as the making of other appropriate arrangements. 69 A WHO guide for health-care planners, implementers and managers Annex 2 Seventieth World Health Assembly resolution WHA70.12 Cancer prevention and control in the context of an integrated approach (excerpts) http://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R12-en.pdf 31 May 2017 The Seventieth World Health Assembly, Having considered the report aware that early diagnosis and prompt and appropriate treatment, including pain relief and palliative care, can reduce mortality and improve the outcomes and quality of life of cancer patients; on cancer prevention and control in the context of an integrated approach; … 1. URGES Member States, taking into account their context and institutional and legal frameworks, as well as national priorities: … (10) to develop and implement evidence-based protocols for cancer management, in children and adults, including palliative care; (15) to provide pain relief and palliative care in line with resolution WHA67.19 (2014) on the strengthen- ing of palliative care as a component of comprehensive care throughout the life course; (17) to promote early detection of patients’ needs and access to rehabilitation, including in relation to work, psychosocial and palliative care services; (19) to continue fostering partnerships between government and civil society, building on the contribution of health-related nongovernmental organizations and patient organizations, to support, as appropri- ate, the provision of services for the prevention and control, treatment and care of cancer, including palliative care; Integrating palliative care and symptom relief into paediatrics 70 Annex 3 Child-friendly healthcare: a manual for health workers (excerpts) Child Friendly Healthcare Initiative (CFHI) http://www.cfhiuk.org/publications/cfhi_manual/cfhi_manual.pdf Preface This is an assessment and implementation manual about “Child Friendly Healthcare” (CFH) written for health workers who plan, organise, provide or give care to children and their families. The manual defines CFH by translating the articles of the United Nations Convention on the Rights of the Child (UNCRC) into simple CFH “Standards” that are applicable to everyday healthcare practices. It provides a method and process for assessing these and a simple structure for making any wanted or needed improvements so that children and their families everywhere can receive the “best possible” healthcare, regardless of circumstance. The Child Friendly Healthcare Initiative (CFHI), a child health quality improvement program, was developed by Childhealth Advocacy International (CAI), Charity No: 1071486, in collaboration with The United Nations Children’s Fund (UNICEF), The Child and Adolescent Department of Health and Development of the World Health Organisation (WHO), the Royal College of Paediatrics and Child Health (RCPCH), UK and the Royal College of Nursing (RCN), UK. What is the “best possible” healthcare? The practice of CFH Standards at their best possible level of practice. The best possible: n Considers the child’s “best interests” n Covers the preventive, investigative, curative and palliative aspects of health care taking into account the most up-to-date evidence-base for each care given n Is affordable and effective n Is appropriate, taking into account the resources (human and material) and technology available and the needs of other children sharing these n Is child centred STANDARD 7: Recognising and relieving pain and discomfort ‘Health care providers, organisations and individual health workers, share a responsibility to advocate for children and to reduce the fear, anxiety and suffering of children and their families by ensuring that they recognise, assess and relieve the physical and psychological pain and discomfort of children.’ Supporting criteria 1. A separate pain and other symptom management/palliative care service/s with lead health professionals and/or multi-disciplinary team/s. 71 A WHO guide for health-care planners, implementers and managers 2. Systems of care, guidelines and job aides (for example tools to assess and relieve pain) to help with symptom recognition, symptom assessment and restraint for procedures. 3. Written guidelines, evidence based wherever possible, used by everyone to help with symptom relief, that include advice on the relief of different types of pain and other distressing symptoms (both physical and psychological), and on how to use non-pharmacological and pharmacological pain relieving strategies in the different ages groups: 4. Material resources including: n A safe, secure supply of free or affordable essential drugs for symptom relief that includes opiates and non-opiates; n Distraction toys and other resources to aid non-pharmacological pain and other symptom management. 5. The use of individual pain (and other symptom) plans made with the children and their parent/carer. 6. Psychosocial support for children, families and health workers. Discussion The pilot project found large numbers of children in the participating countries suffering from uncontrolled pain and other distressing symptoms, both physical and psychological. Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. In countries where opiates are available, there may be a reluctance to use them due to these misguided beliefs and also a lack of understanding about how to use them. Whilst it is upsetting for health workers when they are unable to help a distressed child, the effects on the child and their family are much worse and can only be imagined, especially if the child has a chronic illness, a terminal illness or any other life- limiting condition. It is ethically wrong and a failure of a health professional’s duty for a child to suffer from uncontrolled pain or other distressing symptoms. This is particularly the case for a child who has a permanent disability that is associated with chronic symptoms or one who cannot be cured of their illness and may be near the end of their life. Relieving pain and distressing symptoms is not always about cure, but is about making the experience of living “now” more bearable (that is improving the quality of remaining life). Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. Integrating palliative care and symptom relief into paediatrics 72 Effective relief from pain and other distressing symptoms from birth to adulthood could be better if health workers: n were more aware of the suffering and discomfort that all children may experience (including newborn babies) due to pain and other distressing symptoms; n always anticipating a child’s pain and other distressing symptoms; n gave a higher priority to relieving each individual child’s pain and other distressing symptoms; n made greater use of pain and symptom relieving drugs, both non opiates and opiates; n understood and used simple non-pharmaceutical methods that can help (supportive, cognitive, behavioural and physical); n knew about and anticipated all the things that can make the experience of pain or other symptom worse. To “make it better” best practice is for health workers to have core (during initial training) and regular education/training opportunities on the recognition, assessment and treatment of pain and other distressing symptoms. Best possible practice is also facilitated by having, whenever possible, separate skilled health professionals who lead and guide the treatment of pain and other symptoms. Having a multidisciplinary team dedicated to symptom relief and other aspects of palliative care, and using standardised guidelines for managing pain and other distressing symptoms, are known to be effective ways of improving care and sharing good practice. The child’s normal health worker working together with the child and their carers (who know the child best) can often reduce pain and other distressing symptoms by: n planning each individual child’s care as each child responds differently to pain and other distressing symptoms. n anticipating pain and taking effective measures and/or giving drugs before the symptoms occur, for example before a procedure or operation. Children with recurrent distressing symptoms should not wait for these to re-occur before receiving relief. n using pain/symptom assessment tools to help them recognise and assess a child’s symptoms and guide the care they need. n giving drugs in a way that does not cause more pain and distress. Drugs are often still given in a way that is painful for the child, for example by intramuscular injection. The same drugs are frequently available and equally effective as an intravenous or oral preparation, often at a lower cost. n advocating for the child’s needs to be met, if they are unable to meet these needs themselves. Before using drugs, or where they are unavailable there is much that can be done to relieve suffering and make an unpleasant experience more bearable, such as: n being honest with the child and preparing them for what might be a painful experience can help them to cope. Anxiety and mistrust of health workers will make the experience worse; n using appropriate play, stimulation and distraction to help in the management of pain and other symptoms; n using heat, cold, touch and other comfort measures as these can sometimes help the distress of pain and other symptoms; n giving psychological support, simple kindness and involving parents and other familiar carers where possible. 73 A WHO guide for health-care planners, implementers and managers Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 Strengthening of palliative care as a component of comprehensive care throughout the life course 24 May 2014 The Sixty-seventh World Health Assembly, Having considered the report on strengthening of palliative care as a component of integrated treatment throughout the life course;1 Recalling resolution WHA58.22 on cancer prevention and control, especially as it relates to palliative care; Taking into account the United Nations Economic and Social Council’s Commission on Narcotic Drugs’ resolutions 53/4 and 54/6 respectively on promoting adequate availability of internationally controlled licit drugs for medical and scientific purposes while preventing their diversion and abuse, and promoting adequate availability of internationally controlled narcotic drugs and psychotropic substances for medical and scientific purposes while preventing their diversion and abuse; Acknowledging the special report of the International Narcotics Control Board on the availability of internationally controlled drugs: ensuring adequate access for medical and scientific purposes,2 and the WHO guidance on ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines;3 Also taking into account resolution 2005/25 of the United Nations Economic and Social Council on treatment of pain using opioid analgesics; Bearing in mind that palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual; Recognizing that palliative care, when indicated, is fundamental to improving the quality of life, well-being, comfort and human dignity for individuals, being an effective person-centred health service that values patients’ need to receive adequate, personally and culturally sensitive information on their health status, and their central role in making decisions about the treatment received; Affirming that access to palliative care and to essential medicines for medical and scientific purposes manufactured from controlled substances, including opioid analgesics such as morphine, in line with the three United Nations international drug control conventions,4 contributes to the realization of the right to the enjoyment of the highest attainable standard of health and well-being; Acknowledging that palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care; 1 Document 67/31. 2 Document E/INCB/2010/1/Supp.1. 3 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. 4 United Nations Single Convention on Narcotic Drugs, 1961, as amended by the 1972 Protocol; United Nations Convention on Psychotropic Sub- stances, 1971; United Nations Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances, 1988. Integrating palliative care and symptom relief into paediatrics 74 Recognizing that more than 40 million people currently require palliative care every year, foreseeing the increased need for palliative care with ageing populations and the rise of noncommunicable and other chronic diseases worldwide, considering the importance of palliative care for children, and, in respect of this, acknowledging that Member States should have estimates of the quantities of the internationally controlled medicines needed, including medicines in paediatric formulations; Realizing the urgent need to include palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care; Noting that the availability and appropriate use of internationally controlled medicines for medical and scientific purposes, particularly for the relief of pain and suffering, remains insufficient in many countries, and highlighting the need for Member States, with the support of the WHO Secretariat, the United Nations Office on Drugs and Crime and the International Narcotics Control Board, to ensure that efforts to prevent the diversion of narcotic drugs and psychotropic substances under international control pursuant to the United Nations international drug control conventions do not result in inappropriate regulatory barriers to medical access to such medicines; Taking into account that the avoidable suffering of treatable symptoms is perpetuated by the lack of knowledge of palliative care, and highlighting the need for continuing education and adequate training for all hospital- and community-based health care providers and other caregivers, including nongovernmental organization workers and family members; Recognizing the existence of diverse cost-effective and efficient palliative care models, acknowledging that palliative care uses an interdisciplinary approach to address the needs of patients and their families, and noting that the delivery of quality palliative care is most likely to be realized where strong networks exist between professional palliative care providers, support care providers (including spiritual support and counselling, as needed), volunteers and affected families, as well as between the community and providers of care for acute illness and the elderly; Recognizing the need for palliative care across disease groups (noncommunicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups; Welcoming the inclusion of palliative care in the definition of universal health coverage and emphasizing the need for health services to provide integrated palliative care in an equitable manner in order to address the needs of patients in the context of universal health coverage; Recognizing the need for adequate funding mechanisms for palliative care programmes, including for medicines and medical products, especially in developing countries; Welcoming the inclusion of palliative care actions and indicators in the WHO comprehensive global monitoring framework for the prevention and control of noncommunicable diseases and in the global action plan for the prevention and control of noncommunicable diseases 2013–2020; Noting with appreciation the inclusion of medicines needed for pain and symptom control in palliative care settings in the 18th WHO Model List of Essential Medicines and the 4th WHO Model List of Essential Medicines for Children, and commending the efforts of WHO collaborating centres on pain and palliative care to improve access to palliative care; Noting with appreciation the efforts of nongovernmental organizations and civil society in continuing to highlight the importance of palliative care, including adequate availability and appropriate use of internationally controlled substances for medical and scientific purposes, as set out in the United Nations international drug control conventions; 75 A WHO guide for health-care planners, implementers and managers Recognizing the limited availability of palliative care services in much of the world and the great avoidable suffering for millions of patients and their families, and emphasizing the need to create or strengthen, as appropriate, health systems that include palliative care as an integral component of the treatment of people within the continuum of care, 1. URGES Member States:5 to develop, strengthen and implement, where appropriate, palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost- effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes; to ensure adequate domestic funding and allocation of human resources, as appropriate, for palliative care initiatives, including development and implementation of palliative care policies, education and training, and quality improvement initiatives, and supporting the availability and appropriate use of essential medicines, including controlled medicines for symptom management; to provide basic support, including through multisectoral partnerships, to families, community volunteers and other individuals acting as caregivers, under the supervision of trained professionals, as appropriate; to aim to include palliative care as an integral component of the ongoing education and training offered to care providers, in accordance with their roles and responsibilities, according to the following principles: (a) basic training and continuing education on palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers; (b) intermediate training should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine; (c)  specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs; to assess domestic palliative care needs, including pain management medication requirements, and promote collaborative action to ensure adequate supply of essential medicines in palliative care, avoiding shortages; to review and, where appropriate, revise national and local legislation and policies for controlled medicines, with reference to WHO policy guidance,6 on improving access to and rational use of pain management medicines, in line with the United Nations international drug control conventions; 5 And, where applicable, regional economic integration organizations. 6 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. Integrating palliative care and symptom relief into paediatrics 76 to update, as appropriate, national essential medicines lists in the light of the recent addition of sections on pain and palliative care medicines to the WHO Model List of Essential Medicines and the WHO Model List of Essential Medicines for Children; to foster partnerships between governments and civil society, including patients’ organizations, to support, as appropriate, the provision of services for patients requiring palliative care; to implement and monitor palliative care actions included in WHO’s global action plan for the prevention and control of noncommunicable diseases 2013–2020; 2. REQUESTS the Director-General: to ensure that palliative care is an integral component of all relevant global disease control and health system plans, including those relating to noncommunicable diseases and universal health coverage, as well as being included in country and regional cooperation plans; to update or develop, as appropriate, evidence-based guidelines and tools on palliation, including pain management options, in adults and children, including the development of WHO guidelines for the pharmacological treatment of pain, and ensure their adequate dissemination; to develop and strengthen, where appropriate, evidence-based guidelines on the integration of palliative care into national health systems, across disease groups and levels of care, that adequately address ethical issues related to the provision of comprehensive palliative care, such as equitable access, person-centred and respectful care, and community involvement, and to inform education in pain and symptom management and psychosocial support; to continue, through WHO’s Access to Controlled Medicines Programme, to support Member States in reviewing and improving national legislation and policies with the objective of ensuring balance between the prevention of misuse, diversion and trafficking of controlled substances and appropriate access to controlled medicines, in line with the United Nations international drug control conventions; to explore ways to increase the availability and accessibility of medicines used in palliative care through consultation with Member States and relevant networks and civil society, as well as other international stakeholders, as appropriate; to work with the International Narcotics Control Board, the United Nations Office on Drugs and Crime, health ministries and other relevant authorities in order to promote the availability and balanced control of controlled medicines for pain and symptom management; to further cooperate with the International Narcotics Control Board to support Member States in establishing accurate estimates in order to enable the availability of medicines for pain relief and palliative care, including through better implementation of the guidance on estimating requirements for substances under international control;7 7 International Narcotics Control Board, World Health Organization. Guide on estimating requirements for substances under international control. New York: United Nations; 2012. 77 A WHO guide for health-care planners, implementers and managers to collaborate with UNICEF and other relevant partners in the promotion and implementation of palliative care for children; to monitor the global situation of palliative care, evaluating the progress made in different initiatives and programmes in collaboration with Member States and international partners; to work with Member States to encourage adequate funding and improved cooperation for palliative care programmes and research initiatives, in particular in resource-poor countries, in line with the Programme budget 2014–2015, which addresses palliative care; to encourage research on models of palliative care that are effective in low- and middle-income countries, taking into consideration good practices; to report back to the Sixty-ninth World Health Assembly in 2016 on progress in the implementation of this resolution. Integrating palliative care and symptom relief into paediatrics 78 Annex 5 Sample curricula in paediatric palliative care Sample A: Basic curriculum for training doctors, clinical officers, assistant doctors nurse practitioners Day 1 1.1 Paediatric palliative care basic training course: goals and agenda Slide presentation 1.2 Epidemiology of serious and life-threatening health problems among children in the country Slide presentation 1.3 Paediatric palliative care: definition, principles, accessibility, and moral imperative Slide presentation/large group discussion 1.4 Ethical issues and patient–doctor communication in paediatric palliative care Slide presentation/large group discussion 1.5 Palliative care assessment in children Slide presentation 1.6 Growth and development of children in need of palliative care Slide presentation 1.7 Helping children cope in medical settings Slide presentation/large group discussion Day 2 2.1 Pain assessment and treatment in children Slide presentation 2.2 Non-pharmacologic approaches to pain relief in children Slide presentation 2.3 Preparing children for medical procedures Slide presentation 2.4 Paediatric pain cases Small group discussion Day 3 3.1 Dyspnea assessment and treatment Slide presentation/case discussion 3.2 Nausea/vomiting assessment and treatment Slide presentation 79 A WHO guide for health-care planners, implementers and managers 3.3 Constipation/diarrhoea assessment and treatment Slide presentation 3.4 Psychological distress in seriously ill children: depression, anxiety, insomnia Slide presentation 3.5 Altered mental status: delirium in children Slide presentation Day 4 4.1 Talking with parents and children about serious illness Presentation/large group discussion 4.2 Loss, grief and bereavement Slide presentation/large group discussion 4.3 Psychosocial suffering and support Slide presentation/large group discussion 4.4 Role play: Psychosocial support Small group role play 4.5 Health care worker resilience and self-care Short lecture and large group discussion 4.6 Memorial ceremony Group activity Day 5 5.1 Optimum use of life-sustaining treatment Slide presentation/large group discussion 5.2 Complex medical and ethical issues in caring for a dying child Large group case discussion 5.3 Current state of paediatric palliative care in the country Slide presentation 5.4 Palliative care strategic planning: What can you do in your home institution? Group work and discussion Final examination Source: Global Program of Harvard Medical School Center for Palliative Care and Massachusetts General Hospital, 2017. Sample B: Basic curriculum for training nurses Integrating palliative care and symptom relief into paediatrics 80 Day 1 1.1 What is palliative care? Definition and principles Lecture/discussion 1.2 Palliative care situation in the country Lecture/discussion 1.3 The palliative care team Lecture/discussion 1.4 Roles of nurses in palliative care Lecture/discussion 1.5 Nursing ethics in palliative care Lecture/discussion 1.6 Palliative care assessment and approach to the patient Lecture/discussion/role play Day 2 2.1 Principles of pain management Lecture/discussion 2.2 Side-effects of pain medicines Lecture/discussion 2.3 Instructing patients and family caregivers on correct use of morphine Lecture/discussion 2.4 Subcutaneous injection and infusion procedures Lecture/demonstration 2.5 Pain control cases Small group discussion Day 3 3.1 Dyspnea: assessment and management Lecture/discussion 3.2 Dyspnea case Small group discussion 3.3 Wounds, oedema and skin problems: assessment and management Lecture/discussion/demonstration 3.4 Nausea/vomiting: assessment and management Lecture/discussion 81 A WHO guide for health-care planners, implementers and managers 3.5 Constipation/diarrohea: assessment and management Lecture/discussion 3.6 Other symptoms: loss of appetite, cachexia, fever Lecture/discussion 3.6 GI symptom cases Small group discussion Day 4 4.1 Psychological/psychiatric problems: assessment and management Lecture/discussion 4.2 Agitated patient case Large group discussion 4.3 Patient–nurse relationship, communication, and breaking bad news Lecture/discussion 4.4 Discussing diagnosis and prognosis with patient or family Small group role play 4.5 Loss, grief, bereavement Lecture/discussion 4.6 Emotional support for dying patients and their families Lecture/discussion/role play 4.7 Health care worker self-care Lecture/discussion/group activity Day 5 5.1 Barriers to pain relief in the country Lecture/discussion 5.2 Implementing palliative care nursing in participants’ home institutions Lecture/group work/discussion Final examination Sources: University of Medicine & Pharmacy at Ho Chi Minh City, Viet Nam, and Global Program of Harvard Medical School Center for Palliative Care at Massachusetts General Hospital, 2017. Integrating palliative care and symptom relief into paediatrics 82 Sample C: Basic curriculum for training community health workers (CHWs) 4 Hours: 8 sessions of 30 minutes 1. What is palliative care? Brief presentation/sharing of experiences with incurable illness in family/friends 2. Community health workers’ responsibilities to the patient Brief presentation/discussion 3. Knowing about the patient’s medical, psychosocial and spiritual status Presentation/discussion 4. Knowing how to communicate to the patient in a supportive ways Presentation/discussion 5. Know how to recognize uncontrolled symptom. Presentation/Q&A 6. Know when and how to report to supervisor and seek help Presentation/Q&A 7. Resilience and self-care Brief presentation/discussion 8. Grief and bereavement support Brief presentation/discussion Source: Adapted from: Institute of Palliative Medicine. Palliative Care: A Workbook for Carers. Calicut, Kerala, India: WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care, 2017. 83 A WHO guide for health-care planners, implementers and managers Annex 6 Links A really practical handbook of children’s palliative care: for doctors and nurses anywhere in the world http://www.icpcn.org/a-really-practical-handbook-of-childrens-palliative-care/ African Palliative Care Association (APCA) https://www.africanpalliativecare.org/ Asia Pacific Hospice Palliative Care Network http://aphn.org/ Center to Advance Palliative Care. Pediatric palliative care field guide: a catalogue of resources, tools and training to promote PPC innovation, development, and growth https://www.capc.org/topics/pediatric-palliative-care/ Children’s Project on Palliative/Hospice Services (ChiPPS), a program of the National Hospice and Pallia- tive Care Organization of the United States https://www.nhpco.org/chipps-e-journal End-of-life Nursing Education Consortium (ELNEC) https://elnec.academy.reliaslearning.com/ European Association for Palliative Care (EAPC) http://www.eapcnet.eu/ European Association of Palliative Care (EAPC) Primary Care Reference Group http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCReferenceGroups/PrimaryCare.aspx ICPCN e-learning programme http://www.icpcn.org/icpcns-elearning-programme/ Integrating palliative care and symptom relief into paediatrics 84 International Association for Hospice and Palliative Care https://hospicecare.com/home/ International Children’s Palliative Care Network http://www.icpcn.org/ Latin American Palliative Care Association http://www.cuidadospaliativos.org/ NHPCO Standards of practice for pediatric palliative care and hospice https://www.nhpco.org/childrenspediatricschipps/pediatrics-professional-resources Pain and Policy Studies Group http://www.painpolicy.wisc.edu/ Palliative care for infants, children and young people, the facts: a document for health care professionals and policy makers. Prepared by the EAPC Task Force on palliative Care for Children http://www.eapcnet.eu/LinkClick.aspx?fileticket=DeiV2yhtOZA%3D Palliative Care Guidelines Plus http://book.pallcare.info/ Pediatric palliative care: recommendations for treatment of symptoms in the Netherlands https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4634793/ Together for Short Lives: Basic Symptom Control in Paediatric Palliative Care http://www.togetherforshortlives.org.uk/professionals/resources When children die: improving palliative and end-of-life care for children and their families https://www.nap.edu/catalog/10390/when-children-die-improving-palliative-and-end-of-life-care 85 A WHO guide for health-care planners, implementers and managers WHO Guidelines on the pharmaceutical treatment of persisting pain in children with medical illness http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ World Health Organization - Palliative Care Programme http://www.who.int/palliativecare/en/ - Guidelines on persisting pain in children http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ - Planning and implementing palliative care services: a guide for programme managers http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/ - Global atlas of palliative care at the end of life http://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/ World Hospice Palliative Care Alliance http://www.thewhpca.org/ World Organization of National Colleges, Academies and Academic Associations of General Practitioners/ Family Physicians (WONCA) http://www.globalfamilydoctor.com/ Integrating palliative care and symptom relief into paediatrics 86 Annex 7 Glossary Bereavement support Psychological or spiritual counselling or other emotional support for persons grieving after the death of a loved one. Capacity-building A process by which individuals, institutions and societies develop abilities, individually and collectively, to perform functions, solve problems and set and achieve their goals. Children Persons up to their 18th birthday/the age of 18 years (United Nations). Civil society Structures independent from governments such as nongovernmental organizations (NGOs) and human rights groups, independent activists and human rights defenders, religious congregations, charities, univer- sities, trade unions, legal associations, families and clans. Community health workers (CHWs) Persons who assist with health care in their own communities, are selected by the communities, should be answerable to the communities for their activities, should be supported by the health system but not necessarily a part of its organization, and have shorter training than professional workers. Health A state of complete physical, mental and social well-being and not merely the absence of disease or in- firmity. (Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 Member States [Official Records of the World Health Organization, No. 2, p. 100] and entered into force on 7 April 1948. The Definition has not been amended since 1948.) Health systems strengthening The process of identifying and implementing the changes in policy and practice in a country’s health system so that the country can respond better to its health and health system challenges. Any array of initiatives and strategies that improves one or more of the functions of the health system and that leads to better health through improvements in access, coverage, quality or efficiency. Hospice An organization or institution devoted entirely to providing inpatient or outpatient palliative care for pa- tients near the end of life. 87 A WHO guide for health-care planners, implementers and managers Integrated health services Health services that are managed and delivered in a way that ensures people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, at the different levels and sites of care within the health system, and according to their needs throughout their life course. Intersectoral action The inclusion of several sectors, in addition to health, when designing and implementing public policies that seek to improve health care and quality of life. Noncommunicable disease (NCD) A disease or medical condition that is non-infectious and non-transmissible among people, such as heart disease, stroke, cancer, diabetes and chronic lung disease. Nongovernmental organization (NGO) An organized entity that is functionally independent of, and does not represent, a government or state. People-centred health services Health services that are designed to incorporate the perspectives of individuals, families and communities. They are based on the conviction that individuals, families and communities are participants in – as well as beneficiaries of – trusted health systems that respond to their needs and preferences in humane and holistic ways. People-centred care requires that people have the education and support they need to make decisions and participate in their own care. It is organized around the health needs and expectations of people rather than diseases. Primary health care (PHC) Essential health care based on practical, scientifically sound and socially acceptable methods and technol- ogy. It is the central function and main focus of the country’s health system, is essential for the overall social and economic development of the community, and is the first level of contact with the national health system and brings health care as close as possible to where people live and work. It should be universally accessible to individuals and families in the community, and should be affordable for the community and country at every stage of their development Serious health-related suffering (SHS) Suffering is health-related when it is associated with illness or injury of any kind. Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social or emotional functioning. Palliative care should be focused on relieving the SHS that is associated with life-limiting or life-threatening conditions or the end of life. Social determinants of health The conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, and they are the main cause of health inequities – the unfair and avoidable differences in health status seen within and between countries.  Universal health coverage (UHC) Health coverage that provides people with the health services they need while protecting them from World Health Organization 20, Avenue Appia 1211 Geneva 27 Switzerland http://www.who.int/servicedeliverysafety/en ISBN 978-92-4-151445-3

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Design and layout by Jean-Claude Fattier Printed in Switzerland Photograph credits (cover images starting from top-right, in anti-clockwise direction): 1. © WHO PAHO Carlos Gaggero; 2. © WHO/SEARO/Anuradha Sarup; 3. © WHO/SEARO/Hayley Goldbach; 4. ©WHO/PAHO/Victor Ariscain; 5. © WHO/TDR/ Andy Craggs; 6. © WHO/Chris de Bode; 7. © WH /Fid Thompson; 8. © WHO/SEARO/Anuradha Sarup. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers ISBN 978-92-4-151445-3 iii A WHO guide for planners, implementers and managers Contents Foreword ------------------------------------------------------------------------------------------------- v Acknowledgements ----------------------------------------------------------------------------------------- vi Abbreviations and acronyms ---------------------------------------------------------------------------- vii Introduction ------------------------------------------------------------------------------------------------- 1 Chapter 1. What is paediatric palliative care? ---------------------------------------------------------- 5 Chapter 2. Access to palliative care and symptom relief ------------------------------------------ 15 Chapter 3. Palliative care and symptom relief as part of comprehensive paediatric care - 21 Chapter 4. Essential package of paediatric palliative care and symptom relief (ep pED) - 25 Chapter 5. Implementing PPC and symptom relief -------------------------------------------------- 35 Chapter 6. Ensuring access to essential medicines -------------------------------------------------- 47 Chapter 7. Integration of palliative care and symptom relief can strengthen health care systems and promote UHC ------------------------------------------------- 51 Chapter 8. Research and quality improvement in paediatric palliative care ------------------ 55 References ------------------------------------------------------------------------------------------------60 Annexes Annex 1 Adopted and opened for signature, ratification and accession by United Nations General Assembly resolution 44/25 of 20 November 1989 --------------------------------------------------------- 67 Annex 2 Seventieth World Health Assembly resolution WHA70.12 on Cancer prevention and control in the context of an integrated approach (excerpts) ------------------------------------------------------- 69 Annex 3 Child-friendly health care: a manual for health workers (excerpts) ------------------------------------- 70 Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course ------------------------------ 73 Annex 5 Sample curricula in paediatric palliative care -----------------------------------------------------------------78 Annex 6 Links --------------------------------------------------------------------------------------------------------------- 83 Annex 7 Glossary ---------------------------------------------------------------------------------------------------------- 86

vA WHO guide for planners, implementers and managers Foreword The World Health Assembly has resolved that providing access to palliative care for children is “an ethical responsibility of health systems” (Annex 1) and that integration of palliative care into public health-care systems is essential for achievement of the Sustainable Development Goal on universal health coverage (WHA 67.19). Yet access to paediatric palliative care and symptom relief is very rare in a number of countries. As a result, millions of the world’s vulnerable children suffer unnecessarily each year. A wide range of childhood health problems can generate the need for palliative care and symptom relief including not only advanced noncommunicable disease (Annex 2) and HIV/AIDS, but also severe prematurity, birth trauma, congenital anomalies, severe non-progressive disabilities such as paraplegia and quadriplegia, drug-resistant tuberculosis and injuries. Paediatric palliative care requires special knowledge and skills, and it is essential that all providers of primary health care for children and paediatric specialty care possess these competencies. This document is part of a series of WHO publications on palliative care. Their objective is not to provide clinical guidelines, but rather practical guidance on integrating palliative care and symptom relief into health care systems. The current publication is intended to assist anyone involved with planning, implementing, managing or assuring the quality of health care for children to integrate palliative care and symptom relief such that the quality of life of children and their families will be improved, health-care systems will be strengthened and cost-effective models of service provision will be implemented. With this guide, WHO reiterates its commitment to answering the needs and expectations of all people, especially the most vulnerable. Dr Naoko Yamamoto Assistant Director-General Universal Health Coverage and Health Systems World Health Organization Geneva Switzerland Integrating palliative care and symptom relief into paediatrics vi Acknowledgements Development of this guide was coordinated by Eric Krakauer with overall supervision by Marie-Charlotte Bouësseau and Edward Kelley from the WHO Department of Service Delivery and Safety. WHO is grateful to the principal writing team consisted of Jim Cleary (University of Wisconsin, USA), Stephen Connor (Worldwide Hospice Palliative Care Alliance), Julia Downing (International Children’s Palliative Care Network/Makerere University, Uganda), Stefan Friedrichsdorf (Children’s Hospitals and Clinics of Minnesota, USA), Rut Kiman (Hospital National “Prof. A. Posadas”, Argentina), Eric Krakauer (WHO), Ella Kumirova (Dmitri Rogachen National Center of Pediatric Hematology, Oncology and Immunology, Russian Federation), Joan Marston (Palliative Care in Humanitarian Aid Situations & Emergencies (PALCHASE)), Michelle Meiring (Paedspal and the University of Cape Town, Republic of South Africa), Sadath Sayeed (Boston Children’s Hospital and Harvard Medical School, USA) and Meaghann Weaver (Hand In Hand/ Pediatric Palliative Care). WHO acknowledges the valuable contributions provided by Emily B. Esmaili (Duke University, USA), Nancy Hutton (Johns Hopkins University School of Medicine, USA), Bui Thanh Huyen (University of Medicine & Pharmacy at Ho Chi Minh City, Vietnam), Hatoko Sasaki (National Center for Child and Development, Japan), Noyuri Yamaji (St. Luke’s International University Graduate School of Nursing, Japan); as well as the helpful comments of Natalia Arias, Justin Baker, Juan Pablo Beca, Mercedes Bernadá, Silvina Bevilacqua, Carlos Centeno, Megan Doherty, Hernan Garcia, Eduardo Garralda, Catherine Habashy, Nago Humbert, Jenny Hunt, Erica Kaye, Suresh Kumar, Emmanuel Luyurika, Alexandra Mancini, Regina Okhuysen-Cawley, Roberta Ortiz, Rojim J Sorrosa, Rodolfo Verna and Joanne Wolfe. An additional contributor from WHO was Cherian Varghese. This publication was kindly financed by the True Colours Trust. vii A WHO guide for planners, implementers and managers Abbreviations and acronyms AIDS acquired immunodeficiency virus APCA African Palliative Care Association CFHI Child Friendly Healthcare Initiative CHC community health centre CHW community health worker EAPC European Association for Palliative Care EP Ped Essential Package of Palliative Care for Paediatrics and Symptom Relief GP general practitioner HIC high-income country HIV human immunodeficiency virus ICPCN International Children’s Palliative Care Network IDT interdisciplinary [palliative care] team INCB International Narcotics Control Board LMIC low- and middle-income country MoH Ministry of Health NCD noncommunicable disease NGO nongovernmental organization PHC primary health care PPC paediatric palliative care SDG Sustainable Development Goal SSRI selective serotonin reuptake inhibitor UHC universal health coverage UN United Nations WHA World Health Assembly WHO World Health Organization

1A WHO guide for planners, implementers and managers Introduction People younger than 20 years comprise 35% of the global population and 40% of the global population of least-developed nations (1). The number of children – neonates, infants, children, and adolescents up to 19 years of age – who need pediatric palliative care (PPC) each year may be as high as 21 million (2). Another study found that almost 2.5 million children die each year with serious health- related suffering and that more than 98% of these children are in low- and middle-income countries (LMICs) (3). While estimates differ, there is no doubt that there is an enormous need for prevention and relief of suffering among children (Annexes 1 and 3) – for PPC. In response to the large-scale unnecessary suffering of children, the 2014 World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course emphasizes that access to palliative care for children is an “ethical responsibility of health systems” (Annex 4) (4). Remarkably, however, PPC has not been seen as a priority around the world. A 2011 study found no PPC services in 65.6% of countries (5). Where services do exist in LMICs, they typically are available in only one or a few institutions and are not integrated into health care systems. A review of PPC in sub-Saharan African countries found that less than 1% of children needing palliative care in Kenya had access to it and less than 5% in South Africa and Zimbabwe (6). This guide is part of a series of World Health Organization (WHO) guidance documents on palliative care (7). It describes the medical and moral necessity of making palliative care and pain relief accessible to all children in need, and their families. It offers an expanded conception of PPC based on the needs of children in LMICs as well as in high-income countries (HICs). It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) and provides practical guidance on integrating PPC and pain relief into health care systems such that the quality of life of children and their families is improved, health care systems are strengthened and cost-effective models of service provision are implemented, all of which contribute to the goal of universal health coverage (UHC). This document is not a clinical manual, and it does not provide clinical guidelines. Rather, its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations (UN) organizations working with children, Ministry of Health (MoH) officials, public health leaders, hospital managers, nongovernmental organizations (NGOs), general and specialist paediatricians, surgeons, anaesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in LMICs.

3A WHO guide for planners, implementers and managers

5A WHO guide for planners, implementers and managers What is paediatric palliative care? Part 1. Defining palliative care WHO defines palliative care as the prevention and relief of suffering of adult and paediatric patients and their families facing the problems associated with life-threatening illness (8). These problems include the physical, psychological, social and spiritual suffering of patients, and psychological, social and spiritual suffering of family members. Palliative care (9): n entails early identification and impeccable assessment and treatment of these problems; n enhances quality of life, promotes dignity and comfort, and may also positively influence the course of illness; n provides accompaniment for the patient and family throughout the course of illness; n should be integrated with and complement prevention, early diagnosis and treatment of serious, complex or life-limiting health problems; n is applicable early in the course of illness in conjunction with other therapies that are intended to prolong life; n provides an alternative to disease-modifying and life-sustaining treatment of questionable value near the end of life; n is applicable to those living with long-term physical, psychological, social or spiritual sequelae of serious, complex or life-limiting illnesses or of their treatment; n accompanies bereaved family members after the patient’s death; n seeks to mitigate the pathogenic effects of poverty on patients and families and to protect them from suffering financial hardship due to illness or disability; n does not intentionally hasten death, but provides whatever treatment is necessary to achieve an adequate level of comfort for the patient in the context of the patient’s values; n should be applied by health care workers of various kinds, including primary care providers, generalists and specialists in many disciplines and with various levels of palliative care training and skill, from basic to intermediate to specialist; n encourages active involvement by communities and community members; n should be accessible at all levels of health care systems and in patients’ homes; and n improves continuity of care, strengthens health systems and promotes UHC. The specific types and severity of suffering vary according to geopolitical situation, socioeconomic conditions and culture. Children and their families in LMICs often endure unhealthy social conditions. They also typically have less access to disease prevention, diagnosis and treatment, to social supports and to specialists and specialized services of many kinds than children in HICs. For example, many children have Integrating palliative care and symptom relief into paediatrics 6 limited or no access to cancer chemotherapy, radiation therapy or oncologic surgery, to effective treatment for multidrug-resistant tuberculosis or to neonatal or paediatric intensive care. Palliative care should never be considered a substitute for disease prevention and treatment or for critical care, and palliative care workers have a responsibility to advocate for them wherever they are not yet accessible (9,10,11). But palliative care also should be universally accessible (4). Many countries also lack rehabilitation medicine specialists and services and long-term care facilities to care for children with non-life-threatening but serious disabilities such as paraplegia or quadriplegia or those due to brain injuries or congenital anomalies. In addition, mental health services and social, welfare programmes may be of limited capacity, difficult to access or unavailable. Palliative care can help to address these needs (Table 1). Further, the types of suffering typically associated with life-threatening illness – pain, other physical symptoms, psychological symptoms – also occur acutely or in association with non-life-threatening conditions. But in low-resource settings, prevention and relief of acute suffering and of suffering due to non-life-threatening conditions often are inadequate or unavailable. For example, in countries where pain medicine does not yet exist as a specialty and where few doctors prescribe opioid pain medicines, prevention and relief of pain from trauma or burns or surgery typically are inadequate. Thus, in these settings, clinicians trained in palliative care could fill this therapeutic void either by training colleagues in symptom control, by providing direct symptom relief, or both. Planning and implementing palliative care services should based on assessment of the types and extent of inadequately prevented or relieved physical, psychological, social or spiritual suffering. This attention to local needs is necessary for palliative care services to be people-centred: tailored to local need and to the needs of individual patients and families (3,12). Table 1. Type of suffering and palliative care need Patient population HICs palliative care need LMICs palliative care need Advanced chronic NCDs High High HIV/AIDS Moderate Very high Drug-resistant tuberculosis Very low High in some regions Critical illness High High Neonates with severe prematurity, birth trauma or congenital anomaly High Very high Severe non-progressive disabilities such as paraplegia and quadriplegia Moderate High Severe social distress such as extreme poverty or stigmatization Low High Acute symptoms related to illness, injuries, surgery Not applicable High Health emergencies and crises Very low High in some areas 7A WHO guide for planners, implementers and managers Part 2. How does palliative care differ between children and adults? Children are not little adults. While the definition and principles of palliative care in Part 1 of this chapter apply to the entire lifespan, PPC requires attention to physical, developmental, psychosocial, ethical, spiritual and relational phenomena that are unique to children (Table 2). Salient differences between adults and children for PPC include the following. n Passage through the different development stages Children change continually as they grow from neonates to adolescents. Children undergo marked physical change, learn to talk, mature in their ability to understand illness and become more independent and self-reliant. Because children proceed at different speeds through the many developmental milestones, palliative care providers should become adept at assessing the unique developmental stage and needs of each child and at responding appropriately. Children who have grown up with chronic illness, interacting with clinicians and hospitals, tend to have a more mature understanding of illness, death and dying than children of their age who have been healthy most of their lives. n Communication needs Good communication with patients and their families requires sensitivity to the child’s developmental stage and to the language, culture and illness understanding of both the patient and family and to their degree of trust in the health care system. To the greatest extent possible, PPC elicits a child’s report of her/his symptoms using, for example, validated paediatric pain scales. PPC also honours each child’s values as much as possible and seeks their uncoerced direction, alongside that of the family, about treatments and goals of care. Patients who have not yet reached maturity or the legal age of consent sometimes may disagree with their parents or family caregivers about these issues. n Dependence on adults Children’s dependence on others ranges from the total dependence of a neonate to the high degree of independence of some adolescents who may sometimes want to be seen as a child when seriously ill. n Impact on families While a child’s serious or life-threatening illness profoundly impacts any family, the impact may be greatest in LMICs. Even where treatment is provided free of charge or mostly covered by insurance, the illness can result in financial hardship or catastrophe for the family. Co-payments for treatment, or gratuities may in themselves strain or exceed a family’s financial capabilities. In addition, families must pay for travel to the clinic or hospital not only for the patient, but also for a family caregiver. If the patient remains in the hospital, the family caregiver – often a parent or older child – must pay for meals and often also a place to sleep. That parent or older child is then unable to work and care for the household. This may result in siblings being taken out of school either for lack of school fees or because they must work or care for younger siblings. To pay these expenses, families must often sell their possessions, including farm animals, land, tools or machines needed to earn a living, or even their homes. Too often, a child’s illness results in the family’s financial impoverishment as well (13–15). PPC must assess these risks and respond to them with social supports (Chapter 4). Even when the family’s financial situation is stable, the emotional impact of a child’s serious or life- threatening illness is usually profound. The emotional distress of parents whose child is experiencing serious or life-threatening illness typically is much greater than for a family member of an adult with a similarly serious condition. Parents often seek any treatment that might help their child, even Integrating palliative care and symptom relief into paediatrics 8 if it takes them far from home and far exceeds their financial resources. Thus, PPC entails taking time to explore parents’ understanding of their child’s diagnosis and prognosis and to gently correct misunderstandings. Parents have reported that they might have made different decisions if they had understood earlier what they understood after their child had died. In addition, each family has unique psychosocial characteristics. A child with a life-threatening disease may strain or challenge existing relationships within the family. Role reversal, overly enmeshed relationships, and alliances and conflicts between family members may occur. A dysfunctional family may significantly impair the child’s quality of life. PPC includes assessment of family function and efforts to resolve conflict or dysfunction. n Types of health conditions The wide range of childhood illnesses increases the difficulty of providing PPC services that meet each child’s needs. Further, many paediatric genetic or congenital conditions are rare and not seen in adults, the symptoms may differ in each child and there may be no clear diagnosis or prognosis (16). n Paediatric formulations and dosing of essential medicines It is easier to provide the correct weight-based dose for a young child of a liquid formulation of a medicine, and it is easier for a child to swallow. Where no liquid or paediatric formulation of an essential medicine such as oral morphine is accessible, pills may be cut in halves or quarters or crushed and mixed with food or dissolved in liquid. However, it is difficult to provide an accurate dose in this manner. Further, the pharmacokinetics of medicines are often different in children than in adults, but there may be little or no evidence on the safety and effectiveness of some palliative medicines in children. When there is no alternative to a given medicine to relieve a child’s symptom, particular judiciousness and vigilance are needed on the part of the clinician (17). n Degree of difficulty of clinical decision-making Decision-making about using, withholding or withdrawing disease-modifying or life-sustaining treatments of questionable benefit for a child can be especially difficult for a variety of reasons. Parents often have more difficulty understanding or accepting the poor prognosis of a child than of an aged family member. Clinicians, too, may find it most difficult to weigh the relative benefits and burdens of an intervention when the patient is a child. In addition, modes of decision-making for ill children unable to speak for themselves often vary by culture, by family and sometimes even within families. Whenever possible, gentle but diligent efforts should be made to understand the child’s perspective. n Clinical environment PPC wards and clinics should be made as child-friendly and comforting as possible. The comfort of paediatric patients can be promoted by enabling at least one family member to be present and comfortable (to have adequate food and a comfortable place to sleep near the patient at an affordable cost). The child’s comfort also can be enhanced with distracting pictures or soothing colors on the wall, comforting and clean textures on the bedding, gentle sounds such as soft music or lullabies, or calming toys. 9A WHO guide for planners, implementers and managers Table 2. PPC: differences from adult palliative care n Prognosis, life expectancy and functional outcome often less clear. n More frequent need to integrate palliative care with intensive disease-modifying or life-sustaining treatments due to unclear prognosis. n Care often requires a dual focus on growth/development and potential for death. n Greater emotional burden for family members and clinicians because serious and life-threatening illnesses are not commonly considered normal conditions for children. n Patients undergo continual developmental change: physical, hormonal, cognitive, expressive and emotional. n Patients have changing information needs, recreational and educational needs, and modes of coping with stress. Thus, child life specialists, play therapists and behavioural specialists can greatly enhance palliative care for children. n Patients may have congenital anomalies of uncertain type or rare genetic conditions. n Some genetic conditions may affect multiple children in a family and create a sense of guilt in parents. n Expertise needed both to discern a child’s emotional and cognitive development and to communicate in a manner appropriate for the child’s emotional and cognitive development: to provide the most appropriate amount and kind of information about the illness and to elicit the child’s preferences for care. Sources: Adapted from Levine et al. 2013 (18) and Weaver et al. 2016 (19). Part 3. Who requires PPC? Children with a wide range of health conditions require PPC (Tables 3 and 4). Thus, PPC should be integrated into all sectors and all levels of child health care, and it should be integrated with many types of potentially curative and life-sustaining treatments (Chapter 5) (20,21). In addition, clear plans should be put in place to make sure palliative care continues without interruption when children with long-term palliative care needs become adults. In LMICs, efforts to integrate palliative care into health care systems should always be accompanied by efforts to maximize accessibility of prevention, early diagnosis and treatment of serious and life-threatening illnesses (21,22). However, this accessibility is very limited for many children in LMICs (5,23–25). In addition, as many as 80% of malignancies and many cases of organ failure are diagnosed very late in their course when curative treatment is not available in the country or does not exist (26–28). Therefore, the need for PPC is greatest in LMICs, yet few PPC services exist in these countries (Chapter 2). Integrating palliative care and symptom relief into paediatrics 10 Table 3. Populations that need PPC Population Examples Children with acute life-threatening conditions from which recovery may or may not be possible Any critical illness or injury, severe malnutrition Children with chronic life-threatening conditions that may be cured or controlled for a long period but that may also cause death Malignancies, multidrug-resistant tuberculosis, HIV/AIDS Children with progressive life-threatening conditions for which no curative treatment is available Spinal muscular atrophy, Duchenne’s muscular dystrophy Children with severe neurologic conditions that are not progressive but may cause deterioration and death Static encephalopathy, spastic quadriplegia, spina bifida Neonates who are severely premature or have severe congenital anomalies Severe prematurity, anencephaly, congenital diaphragmatic hernia, trisomy 13 or 18 Family members of a fetus or child who dies unexpectedly Fetal demise, hypoxic-ischaemic encephalopathy, overwhelming sepsis in a previously healthy child, trauma from motor vehicle accident, burns, … Sources: Downing et al. 2016 (29); Wood et al. 2010 (30). Table 4. Conditions that commonly generate a need for PPC Condition Examples of palliative care needs Malignancies (paediatric types differ from those in adults) n Leukaemias: haemorrhage due to coagulopathies, painful procedures such as bone marrow biopsies n Brain tumour: headache, cognitive and neurologic deficits n Sarcomas: severe pain, loss of a limb Conditions discovered or occurring in the perinatal period (31–33) n Congenital anomalies: symptomatic dysfunction of a vital organ such as the heart, bowel or brain; stigmatized superficial anomalies n Prematurity: respiratory distress, intraventricular haemorrhage, brain ischaemia and permanent neurodevelopmental disability n Birth asphyxia: hypoxic-ischaemic brain injury and permanent neurodevelopmental disability Injuries n Head trauma: poor cognitive and motor skills n Burns: acute and sometimes also chronic pain, stigmatized disfigurement n Exposure to violence, conflict or natural hazard: mood disorders such as anxiety, depression, post-traumatic stress disorder Serious infections n HIV/AIDS: symptomatic opportunistic infections, stigmatization, adverse effects of medicines n Drug-resistant tuberculosis: cough, constitutional symptoms (fever, sweats, weight loss), adverse effects of medicines, social isolation, stigmatization n Meningitis: permanent neurodevelopmental disability n Rheumatic fever: symptomatic heart failure Genetic conditions n Neurologic conditions: progressive neurological deficits and disability n Sickle cell disease and anaemia: pain crises, bone necrosis n Connective tissue disorders: chronic pain 11 A WHO guide for planners, implementers and managers Protein energy malnutrition n Pain, dyspnea n Vomiting or diarrhoea related to re-feeding Being a patient n Painful procedures n Postoperative pain n Not having an opportunity to have questions answered and fears assuaged Sources: Adapted from Knaul et al. 2017 (3) and Krakauer et al. 2018 (22). Part 4. “Palliative care plus”: preventing and relieving the suffering of children without a life-threatening illness Attentively identifying, preventing and managing a child’s pain is a moral and ethical imperative, regardless of the patient’s age (even neonates experience pain), ability to communicate or cognitive capacity, or health condition (22,34). Where acute and procedural pain control and services for children with severe disabilities or congenital anomalies are readily available, as they often are in HICs, palliative care can focus entirely on children with life-threatening illnesses. However, where these services are not easily accessible, as is often the case in LMICs, clinicians trained in palliative care should provide them, or teach others to provide them, in addition to caring for children with life-threatening illnesses. Acute and procedural pain Acute pain from traumatic injuries is often inadequately treated in children or not treated at all. The result is not only unnecessary suffering from the pain itself, but also greater emotional distress on the part of the child and family, greater difficulty in treating the patient due to pain-related fear and agitation, and a higher risk of chronic emotional sequelae such as post-traumatic stress disorder (35). Procedural pain is a common yet preventable cause of suffering in children. For quick and minimally invasive procedures such as phlebotomy, simple non-pharmacologic techniques can be used before, during and after the procedures to minimize pain and its associated fear and distress. Distraction or relaxation techniques prior to and during painful procedures can help patients and caregivers maintain a sense of control and decrease the perceived intensity of symptoms. Topical analgesia also can be used, if available. For more complex procedures, such as burn dressing changes, systemic analgesia medication should be used. Intra-operative and postoperative pain usually require an opioid. Examples of painful procedures: n phlebotomy n injections n lumbar puncture n bone marrow aspirate n thoracentesis n dressing changes. Integrating palliative care and symptom relief into paediatrics 12 Children who suffer without a clearly life-threatening condition There is a large burden of suffering among children with severe physical disabilities in both HICs and LMICs. Although the range of diagnoses is large and diverse, there are common types of suffering experienced by children with disabilities that can be relieved through palliative care approaches (36). Whether the disability is due to a traumatic injury, congenital anomaly or genetic condition, pain and social isolation and stigmatization are common. Other chronic physical or psychological symptoms may be present depending on the specific condition. In addition, whenever a child (or adult) is permanently unable to feed or wash herself, walk or use the toilet independently, this may cause physical, financial and emotional burdens for the family, especially a rural poor family. Palliative care providers may be the only source of relief for these types of distress. Box 1. Child Friendly Healthcare Initiative (CFHI) CFHI is based on the United Nations Convention on the Rights of the Child (UNCRC) (Annexes 1 and 3) and was developed by Child Advocacy International (CAI) with the technical support of WHO, the Royal College of Nursing (United Kingdom) and the Royal College of Paediatrics and Child Health (United Kingdom) in collaboration with the United Nations Children’s Fund (UNICEF). The main aim of CFHI is to develop a system of care focused on the physical, psychological and emotional well-being of children attending health care facilities, particularly as inpatients. A set of globally applicable standards were proposed to ensure that practices in hospitals and health centres everywhere respected children’s rights, not only relating to survival and avoidance of morbidity, but also in relation to their protection from unnecessary suffering and their informed participation in treatment (37). 13 A WHO guide for planners, implementers and managers

15 A WHO guide for planners, implementers and managers Access to palliative care and symptom relief Access to PPC lags far behind that of adult services. Development of PPC is hampered by a number of factors including geography, lack of education, lack of public awareness, stigma and lack of consensus on the diseases and conditions appropriate for PPC. There is resistance to admitting that children need palliative care because it is emotionally difficult to admit that children suffer and die. Further, many myths persist about caring for seriously ill children, including a belief that children are not aware of their condition and do not experience pain in the same way as adults. Estimates of the need for PPC are hampered by a lack of registries and reliable data collection from most countries. Need is unevenly distributed globally with almost half the need in sub-Saharan Africa and 98% of the need in LMICs. Children needing palliative care are not concentrated in any one area in a country and are difficult to serve after leaving institutions. Clinicians trained in PPC are few and far between, and children suffering from pain or other symptoms in an area without a trained clinician are likely to have inadequate relief or none at all. Estimating the global need for PPC Several estimates of the global need for PPC have been undertaken in recent years (2,3,38). One estimate identified 11 categories of conditions that generate a need for PPC at the end of life only and the percentage of the need due to each condition (Figure 1). Figure 1. Conditions that generate a need for palliative care at the end of life by disease group Cirrhosis of the liver 1.06% Congenital anomalies* 25.06% Neonatal conditions* 14.64% Protein energy malnutrtion 14.12% Meningitis 12.62% HIV/AIDS 10.23% Kidney diseases 2.25% Neurologicial conditions* 2.31% Cancer 5.69% Endocrine, blood, immune disorders 5.85% Cardiovascular disease 6.18% *see excluded conditions (Appendix 6) N = 1,170.011 Source: Reprinted with permission from Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 16 The total number of children in need of PPC globally each year may be as high as 21 million, and of these, 8 million may have problems that require specialist PPC (2). Local need for PPC can be estimated with assistance from key informants and the affected people. Direct stakeholders should be involved both in estimating the need and in the planning process for service implementation. A working group on PPC sanctioned by a ministry of health could examine local and international data and key informant information to estimate the probable range of need, from the lowest to the highest. Local mortality and disease prevalence data can be used, but these data are often unreliable or unavailable in LMICs. Mapping levels of palliative care development In addition to understanding the need for children’s palliative care, it is also important to assess the capacity to provide PPC globally. Mapping of levels of PPC development was undertaken by the International Children’s Palliative Care Network (ICPCN) using a five-level schema (Figure 2) (29). Figure 2. Levels of PPC development in 2015 Source: Reprinted with permission from Downing et al. 2016 (29). 1. Evidence (from figure 2) of broad palliative care provision for children. Approaching full integration within health care services as well as a national policy to support children’s palliative care. 2. Evidence of broad palliative care provision for children with training available and focused plans for development of services and integration into health care services. 3. Evidence of localized palliative care provision for children and availability of training. 4. Evidence of capacity building activities for the provision of children’s palliative care. 5. No known provision of children’s palliative care. 1 2 3 4 5 17 A WHO guide for planners, implementers and managers Measurement of need for, and capacity to deliver, PPC are necessary elements in planning PPC in a country or region. This is usually done by knowledgeable individuals (including a national palliative care association if there is one) and can be done sequentially. In most LMICs, there are few PPC programmes, and these few may be known to key informants. The primary information needed is the capacity of these institutions to deliver PPC including: n number of patients who received care in one year n diagnoses n length of service by diagnosis and overall n average daily census. Surveys can be used to collect these data with follow-up of non-respondents. Once the need for PPC has been estimated and capacity assessed, it is then possible to conduct a gap analysis (38). Gap analysis is essential for health care planning purposes as it shows the size of the unmet need for PPC. Disparity in access to palliative care Currently, 98% of the need for PPC is in LMICs, and nearly 50% of the need is in the African region (Figures 3 and 4). Yet few clinicians in LMICs have any training in PPC. Figure 3. Distribution of children in need of palliative care by WHO region N = 1,170.011 AFR 49% EUR 3% SEAR 24% EMR 12% WPR 7% AMR 8% AFR: African Region; AMR: Region of the Americas; SEAR: South-East Asia Region; EUR: European Region; EMR: Eastern Mediterranean Region; WPR: Western Pacific Region Source: Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 18 Figure 4. Distribution of children in need of palliative care at the end of life by World Bank country income group N = 1,170.011 Low middle income 48.5% High income 2.1% Low income 35% Upper middle income 14.4% Source: Connor et al. 2014 (38). Programmes in PPC An accurate estimate of the number of PPC programmes worldwide is not available at present. However, a number of centres of excellence have been identified that can serve as models for development: n Members of ICPCN: http://www.icpcn.org/members-directory/ n All 196 members of the United Kingdom association Together for Short Lives: https://www2. togetherforshortlives.org.uk/portal/public/volunteer/List.aspx n Members of the United States National Hospice and Palliative Care Organization that have paediatric palliative care services: https://www.nhpco.org/find-hospice 19 A WHO guide for planners, implementers and managers

21 A WHO guide for planners, implementers and managers Palliative care and symptom relief as part of comprehensive paediatric care Generalist PPC Most children suffering from problems associated with serious or life-threatening health conditions do not need a PPC specialist. Most PPC can be provided very well by generalist clinicians with basic- or intermediate- level training in palliative care, just as most infections can be competently treated by generalist clinicians and do not require intervention by an infectious disease specialist. Thus, health systems should require that general paediatricians, general practitioners, family doctors and paediatric nurse practitioners have at least basic training in PPC, and health system policies should make PPC one of the official responsibilities of these clinicians (Annex 5). All palliative care training programmes in LMICs, whether basic, intermediate or specialist, should address the special problems and needs of paediatric patients and their families at least until there are adequate numbers of paediatric clinicians trained in palliative care. Thus, any clinician trained in palliative care should be able to provide at least basic palliative care to children. There are many similarities between general paediatrics and PPC that should facilitate integration of palliative care training into paediatrics training and practice. These include: n emphasis on continuity of care and development of a trusting therapeutic relationship; n integrated bio-psycho-social care; n attention both to the patient and to the family; and n special attention to patients’ and family members’ anxieties about both illness and treatment. The emotional discomfort of contemplating the death of children can be a barrier to integration of PPC into general paediatrics. For the sake of patients and families, this barrier must be recognized and overcome. Most patients in need of palliative care, whether adults or children, are at home. Generalist clinicians with palliative care training are essential to making palliative home care possible. First-level (district) hospitals should establish a palliative care and pain control clinic staffed by clinicians with basic or intermediate- level palliative care training. Their roles would include (see also Chapter 5): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; n inpatient care for patients whose symptoms cannot be adequately controlled outside the hospital but who do not require higher-level care; n referral of patients with severe or refractory symptoms to higher-level hospitals; and n training and supervision of clinicians providing palliative care at community health centres (CHCs). In settings where clinicians at the community level are not permitted to prescribe opioids for outpatients, physicians at the district level should take on this role for any patients in the district who require opioid therapy for pain or terminal dyspnea. Clinicians who provide palliative care at community CHCs – which may include doctors, clinical officers, assistant doctors, nurse practitioners or nurses with advanced palliative care training – should have basic training in palliative care (Annex 5). Integrating palliative care and symptom relief into paediatrics 22 Their roles should include (Chapter 5) (22,39): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; ideally, at least one clinician at a CHC should be able to prescribe oral morphine for outpatients; n training and supervision of community health workers (CHWs) who visit patients at home as often as daily to recognize uncontrolled symptoms or social or spiritual distress and report it to the CHC; and n if possible, to provide inpatient hospice or end-of-life care for a maximum of one or two patients at a time whose symptoms are well controlled but whose families are unable to care for them at home. PPC provision by physician-specialists in disciplines other than palliative care Specialist doctors who frequently care for children with serious or life-threatening conditions, such as oncologists, cardiologists, intensivists and neonatologists, should be required to receive intermediate-level training in PPC (Chapter 5, Part 3). Health system policies should require that these physicians have PPC as one of their official responsibilities. Specialist physicians trained in this way, usually based at second- level (provincial) or third-level (regional referral) hospitals, will be able to respond adequately to most of the suffering of children that cannot be adequately relieved at the district or community level by generalist clinicians. In addition, these physicians will be capable of integrating palliative care with the curative and disease-modifying treatment for children that they usually practise. Training in palliative care also will prepare them to recognize when curative or life-sustaining treatment are likely to be more harmful than beneficial and to advise patients and families on the relative benefits and burdens of potential interventions. Health system policies also should require that second- and third-level hospitals have a palliative care interdisciplinary team (IDT) and that specialist physicians with intermediate-level training in palliative care be affiliated with the IDT. Basic palliative care training for generalist clinicians should include curriculum on when and how to refer patients to the IDTs at higher-level hospitals. Specialist PPC Some children have refractory or complex symptoms that even physicians with intermediate-level PPC training may be unable to relieve. These patients require intervention by palliative care specialist physicians who lead palliative care IDTs. However, there are as yet few palliative care specialists in LMICs, even fewer PPC specialist physicians and no PPC specialist training programmes. Palliative care specialist training programmes should be created as soon as possible in LMICs, and ministries of health should recognize palliative medicine as an official medical specialty to enable these programmes to develop and their graduates to practise. Palliative care specialist training programmes should include training in PPC for all trainees, and they should aim to develop a PPC specialist training track as soon as possible. National health care policies should require major children’s hospitals to establish PPC services directed by PPC specialist physicians within a specified period of time. PPC specialist physicians and IDTs are especially important in paediatric cancer centres. The majority of distressing symptoms in children with advanced cancer, such as pain, dyspnea and nausea/vomiting, are treated inadequately or not at all, even in HICs (40–44). Further, new targeted cancer therapies and immunotherapies sometimes exacerbate symptoms, generate new ones or create complex clinical dilemmas for which palliative care expertise may be crucial. Similarly, hospitals that offer extra-corporeal membrane oxygenation (ECMO) or other invasive life-sustaining treatments should also offer palliative care provided by palliative care specialist physicians and IDTs to minimize the discomfort of critical care, to offer an alternative to life-sustaining treatment of questionable benefit and to ensure the comfort of children for whom life-sustaining treatment will be withdrawn. 23 A WHO guide for planners, implementers and managers

25 A WHO guide for planners, implementers and managers Essential Package of Paediatric Palliative Care and Symptom Relief The Essential Package of Paediatric Palliative Care and Symptom Relief is the minimum palliative care and symptom relief that should be accessible by any child in any setting. The EP Ped is based on the essential package of palliative care described by Krakauer et al. (22) and Knaul et al. (3), and adapted for children based on the expert opinions of the members of the WHO working group on PPC. It consists of a set of safe, effective, inexpensive, off-patent and widely available medicines, simple and inexpensive equipment, and basic social supports, which together can prevent and relieve suffering of all types – physical, psychological, social and spiritual (Table 5). It also includes the human resources needed to apply them appropriately, effectively and safely and to accompany patients and families throughout the course of the illness. Medicines The list of medicines in the EP Ped is based on the WHO Model List of Essential Medicines for Children (45) and adapted for this document. Medicines were selected based on the following criteria: n they are necessary to prevent or relieve the specific symptoms or types of suffering most common in children with serious, complex or life-threatening health problems; n the safe prescription or administration requires a level of professional competency achievable by doctors, clinical officers, assistant doctors or nurse anaesthetists with basic training in palliative care; and n within its class of medicines, they offer the best balance between accessibility on the world market, clinical effectiveness, safety, ease of use and low cost. Morphine and other opioids Morphine, in oral fast-acting and injectable preparations, is the most clinically important of the essential palliative care medicines (45). It must be accessible in the proper form and dose by any patient with terminal dyspnea or with moderate or severe pain that is either acute, chronic and associated with malignancy, or chronic in a patient with a terminal prognosis. Opioids should not be first-line treatment for chronic pain outside of cancer, palliative and end-of-life care, except under special circumstances and with strict monitoring (46). Morphine, in both injectable and oral fast-acting formulations, should be accessible by prescription at every referral, provincial and district hospital, and oral fast-acting morphine should be accessible by prescription at CHCs unless there is a serious and unavoidable risk of diversion of controlled medicines from CHCs. All doctors who ever care for patients with moderate or severe pain of the types described, or for patients with terminal dyspnea, should be adequately trained and legally empowered to prescribe oral and injectable morphine for inpatients and outpatients in any dose necessary to provide adequate relief as determined by the patients. Doctors inexperienced at prescribing morphine can be trained adequately with the curriculum in basic PPC described in this document or with similar curricula (Annex 5). Doctors also should be enabled to prescribe an adequate supply of morphine so that obtaining refills is feasible for families without requiring unreasonably frequent, expensive or arduous travel. Whenever clinically possible, oral morphine rather than the injectable form should be prescribed. All doctors should be trained to assess and treat opioid side-effects and to avoid injudicious use of morphine for mild pain or chronic non-malignant pain. In some countries, it may be possible for specially trained nurses to provide opioid therapy safely and effectively. Integrating palliative care and symptom relief into paediatrics 26 Table 5. EP Ped: interventions, medicines, equipment, human resources and social supports Interventions Inputs Social supports Medicinesa Equipment Human resourcesb Prevention and relief of pain or other physical suffering,d acute or chronic Amitriptyline, oral Bisacodyl (senna), oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine, or dimenhydrinate), oral and injectable Fluconazole, oral Fluoxetine (sertraline or citalopram), oral (>8 years old) Furosemide, oral and injectable Haloperidol, oral and injectable Hyoscine butylbromide, oral and injectable Ibuprofen (naproxen, diclofenac, or meloxicam), oral (>3 months old) Lactulose (sorbitol or polyethylene glycol), oral Loperamide, oral Metaclopramide, oral and injectable (>1 month old) Metronidazole, oral, to be crushed for topical use Morphine, oral immediate release and injectable Naloxone, injectable Omeprazole, oral Ondansetron, oral and injectablef (>1 month old) Oxygen Paracetamol, oral Petroleum jelly Pressure-reducing mattresses Nasogastric drainage and feeding tubes Urinary catheters Opioid lock boxes Flashlights with rechargeable batteries (if no access to electricity) Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) CHWs (if available) 27 A WHO guide for planners, implementers and managers Prevention and relief of psychological suffering,e acute or chronic Amitriptyline, oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine or dimenhydrinate), oral and injectable Fluoxetine (sertraline or citalopram), oral Haloperidol, oral and injectable Lactulose (sorbitol or polyethylene glycol), oral Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) Social workers, psychologists, or grief counsellors CHWs (if available) Prevention and relief of social suffering, acute or chronic Income and in- kind supportc Social workers CHWs and/or volunteers (if available) Prevention and relief of spiritual suffering Local spiritual counsellors a Based on WHO 2017 (45). Acceptable alternative medicines are in parentheses: ( ) b Doctors may be paediatricians, general practitioners, family practitioners, surgeons, anaesthesiologists, intensivists, neonatologists, infectious disease specialists, palliative care specialists, clinical officers, or others. Nurses may include nurse-anaesthetists. c Only for patients living in extreme poverty and for one caregiver per patient. Includes cash transfers to cover housing, children’s school tuition, transportation to health care facilities or funeral costs; food packages; and other in-kind support (blankets, sleeping mats, shoes, soap, toothbrushes, toothpaste). d Other physical suffering includes breathlessness, weakness, nausea, vomiting, diarrhoea, constipation, pruritus, bleeding, wounds and fever. e Psychological suffering includes anxiety, depressed mood, confusion or delirium, dementia and complicated grief. f Only in hospitals that provide cancer chemotherapy or radiotherapy. Sources: Knaul et al. 2017 (3); Krakauer et al. 2018 (22). Integrating palliative care and symptom relief into paediatrics 28 Balance: maximizing access to opioids for medical use/minimizing risk of diversion and illicit use Although ensuring access to morphine for anyone in need is imperative, it also is necessary to take reasonable precautions to prevent diversion and non-medical use. Model guidelines for this purpose are available (47). All hospitals, health centres and pharmacies should store morphine and other controlled medicines in a sturdy, locked and well-anchored box or cupboard at all times, keep records of the remaining supply and record the amount dispensed for a patient and the amount wasted or returned by a patient’s family. All personnel at these sites who handle controlled medicines such as opioids should be trained in safe storage and recordkeeping and in local regulations on controlled medicines. Doctors should be trained to assess for and minimize risk of opioid dependence and opioid diversion for non-medical uses. In keeping with the principle of balancing maximum accessibility of opioids for medical uses with minimum risk of opioid diversion, additional precautions might be necessary in areas with high rates of crime or violence. For example, it might not be possible to make morphine safely accessible at the community level in areas with high crime rates. In these places, accessibility must be ensured at higher levels in ways that do not unduly increase the travel burden for patients’ families. Where home or clinic supplies of morphine are frequently stolen, or patients and their families are put at risk by carrying or storing morphine, patients needing morphine might require admission to a hospital. Non-opioid medicines Among the other essential palliative medicines are oral and injectable haloperidol and oral fluoxetine or another selective serotonin reuptake inhibitor (SSRI). Although these medicines are considered psychiatric or psychotropic medicines, they have multiple essential uses in palliative care and are safe and easy to prescribe. For example, haloperidol is the first-line medicine in many cases for relief of nausea, vomiting, agitation, delirium and anxiety. An SSRI, such as fluoxetine, is the first-line pharmacotherapy for depressed mood or persistent anxiety in children older than eight years. Any doctor should be prepared and permitted to prescribe these medicines – not solely psychiatrists or neurologists. Patients with more severe psychiatric illnesses, such as psychotic or bipolar disorders, should be referred for specialist psychiatric care whenever possible. Petroleum jelly is essential for dressing non-healable wounds. Wet-to-dry dressings typically cause pain or bleeding when changed and can be avoided by applying petroleum jelly to dressings. Metronidazole powder, made by crushing metronidazole pills, is essential to reduce or eliminate the odor of any wound infected with anaerobic bacteria. The powder can be sprinkled on the wound or mixed with petroleum jelly or hydrogel dressings. Equipment Equipment in the EP Ped meets the following criteria. It is: n necessary for the relief of at least one type of physical or psychological suffering; n inexpensive, and n simple to use with basic training. The equipment includes nasogastric tubes (for vomiting refractory to medicines and for administration of medicines or fluids); urinary catheters (to manage bladder dysfunction or outlet obstruction); foam, water or air pressure-reducing mattresses (to prevent and relieve pressure ulcers and pain); locked safe-boxes for opioids (to be secured to a wall or immovable object); flashlights with rechargeable batteries (when no adequate light source is available for nocturnal home care); and baby and adult diapers or cotton and plastic bags to make diapers (to reduce risk of skin ulceration and infection and caregiver risk and burden). In countries where plastic bags are prohibited as part of laudable environmental protection initiatives, 29 A WHO guide for planners, implementers and managers specialized medical use should be permitted. The EP Ped does not include materials needed for palliative care that should be standard equipment for any health centre or hospital such as gauze and tape for dressing wounds, nonsterile examination gloves, syringes and angiocatheters. Human resources and training The necessary human resources depend primarily on the level and type of the health service delivery site and on the competency in PPC of staff members rather than their professional designations. Any medical doctor, clinical officer or assistant doctor trained in basic palliative care using a curriculum such as that included in this document should be capable of preventing or relieving most pain and other physical suffering (Annex 5). They should be able to competently prescribe opioids such as morphine to treat pain for inpatients and outpatients. They also should be able to diagnose and provide pharmacotherapy as needed for uncomplicated anxiety disorders, depression or delirium. Not only doctors, nurses, psychologists and social workers, but also CHWs can be trained to provide simple, culturally appropriate psychotherapy for depression and bereavement support (48–51). Nurse-anaesthetists trained in basic palliative care and nurse practitioners with advanced palliative care training also may be able to provide these services in some settings. Nurses at CHCs can have a crucial role in supervising CHWs who provide palliative care, in providing palliative care that does not entail prescribing medicines and in triaging patients who may require attention from a doctor. Midwives can have a crucial role in providing palliative care for critically ill neonates and emotional support for the parents. Their ability to prescribe medicines depends on their level of training and on local licensing laws. However, they can be trained to recognize moderate or severe distress in neonates and to transport patients in need of palliative care to the nearest health centre or other facility capable of providing it. Clinicians trained in basic PPC occasionally may encounter physical or psychological suffering for which they feel incapable of providing adequate treatment, and referral for specialized PPC may not be possible in some settings. Examples may include pain refractory to high-dose morphine, depression refractory to maximum dose SSRI or psychotic disorders. However, if referral for appropriate specialist care is not possible, then a clinician with palliative care training should use whatever resources are available, including a palliative care hotline or other type of telemedicine, to provide the best possible care under the circumstances rather than refuse to treat. CHWs can have a crucial role in palliative care and symptom control by visiting patients and families frequently at home and by helping them to navigate the local health care system. With as little as three to six hours of training in palliative care, existing CHWs not only can provide important emotional support, but also recognize uncontrolled symptoms, identify unfulfilled basic needs for food, shelter or clothing or improper use of medications, and report their findings to a nurse-supervisor at a health centre (Annex 5). In this way, they can accompany patients in need of palliative care and their families and help to assure their comfort by serving as the eyes and ears of their clinicians. Based on reports by CHWs, it may be possible to arrange an appropriate response to an uncontrolled symptom such as a change in prescription or a home visit by a nurse that does not require the patient to return to the hospital or health centre. Visits by CHWs also can help to reduce the often heavy emotional, physical and financial burden of family caregivers. Capable family caregivers should be trained, equipped and encouraged by clinicians to provide basic nursing care such as wound and mouth care and medicine administration. But care should be taken to assess for unmet social needs of family caregivers who typically are women, often also have work and other child-care responsibilities, and often live in poverty. Clinicians should routinely ask patients with serious or life-limiting health problems or their families if they desire spiritual counselling. Every effort should be made to facilitate access to spiritual counselling by local volunteers that is appropriate to the beliefs and needs of the patient and family. Integrating palliative care and symptom relief into paediatrics 30 Social support Social support for patients and family caregivers living in extreme poverty is needed to ensure that their most basic needs are met such as food, housing and transport to medical care, and to promote dignity. This support should include, as appropriate, basic food packages, cash payments for housing or school fees, transportation vouchers for visits to clinics or hospitals for the patient and a caregiver, and in-kind support such as blankets, sleeping mats, shoes, soap, toothbrushes and toothpaste. These social supports help to ensure that patients can access and benefit from medical care and should be accessible by any patient, not only those in need of palliative care or symptom control. One additional social support that should be accessible for families living in extreme poverty is locally adequate funeral costs. Culturally appropriate burial can be a major financial burden for families, and inability to provide a funeral can become a chronic emotional burden. Augmenting the EP Ped The EP Ped includes only the minimum set of basic medicines, equipment, social supports and human resources that should be accessible by all patients and families in need. It should not be considered sufficient to meet all palliative care or symptom relief needs. Depending on the budget of humanitarian response organizations and the type of health emergency or crisis, the EP Ped may be augmented in various ways. Medicines and other treatments: n paediatric (liquid) formulations of paracetamol, ibuprofen, morphine and diazepam; n topical lidocaine or other local anaesthetic ointment: for preventing pain from procedures; n fentanyl, injectable: for preventing pain from brief procedures or dressing changes and for intravenous analgesia in patients with renal failure; n fentanyl transdermal patches: for patients with moderate or severe cancer pain or pain near the end of life who are unable to take oral medicines or who have renal failure; n slow-acting oral morphine: for patients with moderate or severe cancer pain or pain near the end of life who can take oral medicines; n midazolam, injectable: for moderate sedation prior to painful procedures and for palliative sedation for intractable distress of a dying patient; n hydrogel, topical: for dressing healable wounds; and n access to palliative cancer treatments (radiotherapy, chemotherapy): for patients with incurable cancers. Equipment: n wheelchairs and canes: to improve mobility and reduce burden for family caregivers. Human resources: n palliative care specialist physician: for patients with particularly complex symptom control problems; n child life specialist: to help children cope with illness, disability or loss of family members; and n physical therapist: for injured patients and patients with disabilities. 31 A WHO guide for planners, implementers and managers Interventions for specific patient populations Dying patients In some cases, it is difficult to discern when a child is dying. For patients who may still benefit from disease- modifying or life-sustaining treatment, every effort should be made to obtain this treatment in combination with palliative care. When life-sustaining treatment is deemed more harmful than beneficial for a patient, or when it is no longer desired by the patient and family, it is essential that the patient not be abandoned but rather receive comfort-oriented treatment to prevent and relieve suffering and maximize quality of life. Failure to provide this service is medically and ethically indefensible. The child should be placed in as quiet and private a location as possible and provision made for the family to be present. The prognostic understanding of the patient or family should be gently explored and corrected as needed and as culturally appropriate. Bad news should be conveyed in a manner appropriate for patient’s developmental stage and for the patient’s and family’s culture and history. It should be made clear that there is never an intention to hasten death but that every effort can be made to ensure comfort at all times. Intensive efforts must be made to relieve pain and other symptoms. Comfort-oriented care sometimes requires an intensity and ingenuity that rivals critical care. In addition, patients and family members should have access to psychological first aid, defined by WHO as a “humane, supportive response to a fellow human being who is suffering and who may need support. It entails basic, non-intrusive pragmatic care with a focus on listening but not forcing talk, assessing needs and concerns, ensuring that basic needs are met, encouraging social support from significant others and protecting from further harm” (52). Any doctor should be prepared and permitted to provide non-specialized psychological care that includes psychological first aid and prescription of psychotropic medicines for priority, uncomplicated mental health conditions. Comprehensive WHO guidelines on training non-specialized providers (e.g. doctors, nurses) in the assessment, management and referral of priority mental health conditions are available and should be included in palliative care training curricula (Annex 5) (53). For bereaved adults and children who do not have a mental disorder, it is recommended to follow general principles of care such as communication, mobilizing and providing social support and attention to overall well-being, to offer psychological first aid and encourage and facilitate participation in culturally appropriate mourning practices (52,53). Bereavement support groups led by adequately trained personnel may be helpful (54). Some interventions can be provided safely and effectively by CHWs with basic training (51). Volunteer spiritual supporters should be sought to provide culturally appropriate spiritual support if requested by the patient or family. Protein energy malnutrition Efforts to rescue severely malnourished children should be combined with palliative care to maximize their comfort and to provide psychosocial support for the family. Treatment of adverse effects of re-feeding, such as vomiting and diarrhoea, may not only provide comfort, but also improve survival. The pain or dyspnea of dying children should be relieved and their parents emotionally supported. Neonates Neonates and babies have the highest death rate in the paediatric population. All preverbal children are vulnerable because of their inability to communicate their suffering. However, critically ill neonates are particularly vulnerable because, in many places, neonatal intensive care units offer only life-sustaining treatment and no palliative care. The two are not mutually exclusive: critical care and palliative care can and should be integrated to maximize the comfort of patients who may survive, and that of their parents. In HICs, palliative care is recommended for neonates born at extremely low birth weight (less than 0.5 Integrating palliative care and symptom relief into paediatrics 32 kilograms) and those born before 23 weeks of gestation. In settings where state-of-the-art neonatal intensive care is not accessible, babies born after longer gestation or at higher birth weight may not survive and should receive palliative care. In any setting, palliative care: n should be provided for children born with a life-limiting abnormality or malformation; n should be initiated immediately for family support when a life-limiting abnormality or malformation is discovered during pregnancy or at birth and in case of a stillbirth (psychological, social and spiritual support); n should be integrated with intensive illness-modifying or life-sustaining treatments for critically ill neonates; n should be the only type of care when intensive illness-modifying or life-sustaining treatments will be more burdensome than beneficial and therefore will be withheld or withdrawn; n should assist with decision-making about benefits and burdens of intensive illness-modifying or life- sustaining treatments for critically ill neonates; and n should make bereavement support accessible as needed after a stillbirth or the death of any neonate or child. When a life-limiting fetal anomaly is diagnosed during pregnancy, or when a stillbirth occurs, a midwife or traditional birth attendant can play an important role in providing palliative care. They can provide emotional support and advise the parents on: n spending time with their dying baby, or holding a stillborn baby; n making photographs or handprints and footprints that can become cherished memories and assist the bereavement process; and n organizing baptisms, wakes or other rituals. Obstetrical, neonatal and palliative care policies and procedures should guide the palliative care roles of midwives and traditional birth attendants. They should receive basic training in PPC and be welcomed as members of palliative care teams. 33 A WHO guide for planners, implementers and managers

35 A WHO guide for planners, implementers and managers Implementing PPC and symptom relief Part 1. Integrating PPC into health care systems and structures WHO recommends a public health strategy for integrating palliative care into health care systems in a cost-effective manner to reach all in need (4,55). Inclusion of palliative care in national health care policies is crucial. Without policies that mandate palliative care services, it is unlikely that PPC will become widely accessible or sustainable. In general, the first steps towards integration of PPC into health care systems should be: n a national palliative care policy that requires access for all – specifically including children – to palliative care and to pain control with opioid pain medicines; n a national palliative care strategic plan to create this access within a certain time period; and n inclusion of PPC in any national policies or strategic plans on cancer, noncommunicable diseases (NCDs), paediatrics, HIV/AIDS, drug-resistant tuberculosis or primary health care (PHC). Once such policies and strategic plans are in place, efforts can focus on ensuring accessibility of all essential medicines and equipment, including oral fast-acting and injectable morphine, and on training (Chapter 6). During these efforts, PPC training programmes should be developed. However, if policies do not precede training, most trainees may be unable to practise PPC and may not be paid for doing so. Training can be initiated at a basic level either for primary care physicians or physicians whose specialties entail caring frequently for children with serious or life-threatening health problems. Physicians who complete basic palliative care training should be empowered to prescribe oral fast-acting and injectable morphine for inpatients and outpatients. As soon as possible after implementing basic palliative care training for physicians, other palliative care training programmes should be established: n intermediate-level training should be implemented for physicians whose specialties entail caring frequently for children with serious or life-threatening health problems; n basic palliative care training for practising nurses; and n integration of basic training in palliative care, including PPC, into undergraduate medical, nursing and pharmacy training. Next, or simultaneous with essential medicine procurement and training, PPC services should be integrated into existing service delivery. This can begin at any level of the health care system. However, it may be easiest to implement PPC where the need is most obvious to most staff members: in cancer centres. Initial services can be an inpatient ward, a consultation service or an outpatient clinic. National policies should require PPC services at all cancer centres and, within a period of time, at all levels of the health care system: n second- and third-level hospitals (provincial, regional and specialty hospitals); n first-level (district) hospitals; n CHCs; and n home care. A basic plan for integrating palliative care in general and PPC in particular into health care systems is described in Table 6. This plan can be used for palliative care policies. In LMICs, serious or life-threatening health conditions typically are diagnosed at second- and third-level hospitals, and treatment usually is Integrating palliative care and symptom relief into paediatrics 36 initiated there. Thus, palliative care services should be accessible in these institutions to provide initial symptom control, to maintain symptom control during treatment and to prepare a plan to keep the patient comfortable after discharge to a lower-level facility or to home. When treatment at a second- and third- level hospital is not needed or not appropriate and when the patient’s symptoms are not complex or refractory to treatment, palliative care can be initiated and home care plans made at a first-level hospital. In most cases, home care services based at the patient’s local CHC should be able to provide follow-up care after the patient’s symptoms have been controlled and a palliative care plan made at higher level. In rare cases of severe refractory suffering, a patient may require end-of-life inpatient care at a first-, second- or third-level hospital. Examples include non-viable premature neonates with respiratory failure or patients with severe, refractory pain due to end-stage cancer. In cases where the patient’s symptoms can be well-controlled but where the family lacks the ability to care adequately for the patient at home, the CHC should offer inpatient end-of-life care to a maximum of one or two patients at a time. In most cases, however, the patient should be able to remain at home with follow-up surveillance by a CHW and follow-up care as needed in the home, at the CHC or at the palliative care outpatient clinic of the district (first-level) hospital. It is crucial the national health care policies specify the types of palliative care services that must be implemented at each level of health care systems and also specify the training that each type of palliative care provider should have at each level. Table 6. Palliative care interventions, delivery platforms and providers Intervention Delivery platform Mobile outreach/ home care CHC First-level (district) hospitals Second- and third- level (provincial, regional, specialty) hospitals Ongoing care for patients with well- controlled symptoms related to serious or life-limiting health problems n CHWs provide surveillance and emotional support as often as daily n Visits as needed by nurse, doctor or social worker from the CHC with basic training in palliative care n Nurse and possibly also a doctor or social worker with basic training in palliative care provide outpatient care and possibly home visits as needed n Inpatient hospice care in some cases if the family is unable to provide adequate care at home n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient hospice care if the family is unable to provide adequate care at home and if no inpatient care is available at CHCs n Outpatient palliative care clinic 37 A WHO guide for planners, implementers and managers Initial control of mod- erate or severe symp- toms related to serious, complex or life-limiting health problems Control of refractory suffering n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient palliative care n Outpatient palliative care clinic n Palliative care team consisting of full- or part-time doctors with intermediate training in palliative care n Ideally, a palliative care specialist physician should lead the team at major cancer centres and general hospitals n Inpatient palliative care ward n Outpatient palliative care clinic Source: Adapted from Krakauer et al. 2018 (22). The recommended transfer patterns for patients in need of palliative care are outlined in Figure 5. In general, patients whose health conditions already have been diagnosed and who need palliative care are referred only to the next higher or lower level as appropriate. However, there are several exceptions to this rule: n Patients at second- or third-level hospitals whose symptoms have been well controlled and who wish to return home for palliative home care should be transferred directly to home and the case information transmitted to the local CHC in charge of home care. n Patients who are at home or who are seen at a CHC and found to have severe, complex or refractory suffering that cannot be adequately relieved in the community may be transferred directly to a first- level hospital. However, if the patient already is known at a second- or third-level hospital, then the patient may be transferred directly to that hospital. In all instances, case information should be transmitted to the receiving hospital. n In settings where an inpatient hospice exists, patients may be transferred there from any level of the health care system, and case information should be transmitted. n In settings where a sub-acute care facility or nursing home is available, patients with uncomplicated health problems and well-controlled symptoms may be transferred there from any level of the health care system, and case information should be transmitted. It is crucial that palliative care providers at each level of the health care system be able to communicate easily and reliably with providers at any other level at all times. For example: n a CHW must be able to reach a nurse or supervisor at the CHC quickly at any time to report a problem with a patient; n a provider at a CHC must be able to reach a supervisor at the district level quickly at any time for advice on a complicated case; and Integrating palliative care and symptom relief into paediatrics 38 n a provider at a third-level hospital must be able to reach the appropriate person at a CHC to provide information about a patient who will be sent home for home palliative care. Typically, this communication will be by mobile phone. Texting usually is inadequate to convey important clinical information. For LMICs with inadequate established referral systems, a standardized palliative care handover form that records the patient’s clinical and social history, including disease-modifying and palliative treatments, key family members and caregivers, and any agreed-upon goals of care, is very conducive to optimum care. Budgets for palliative care should include funding for telecommunications and printing of such forms as well as for transportation for CHC staff members to visit patients at home as needed. It also is crucial that palliative care training of all levels be integrated into the health care education system in each country or region for all types of palliative care providers, including physicians, clinical officers, assistant doctors, nurse practitioners, midwives, nurses, pharmacists and social workers. Typically, this training should be offered by a university that has a medical school, nursing school, pharmacy school and social worker school, but sometimes the training may be offered in separate schools for different professions. Creation of a department of palliative care or palliative care training centres at universities are encouraged (Figure 5). Figure 5. Referral patterns for patients in need of palliative care CHC, community health centre; CHW, community health worker; CO, clinical officer; IDT, interdisciplinary team; PC, palliative care; PPC, paediatric palliative care a Temporary inpatient care that provides a respite from caregiving for the family. University-based palliative care department or centre Training: all levels for all members of IDTs except CHWs Research: needs assessment, outcomes research, quality assurance Technical assistance for policy writing, clinical service implementation Advocacy First-level (district) hospital Small palliative care IDT: n generalist physician(s) n nurses n social worker(s) Small inpatient unit, outpatient clinic CHC PPC provided by: n generalist physician, CO or assistant doctor with basic PPC training or nurse with advanced PC training that includes PPC n nurses with basic PC training n social worker Outpatient clinic, inpatient hospice care in special cases Second-level (provincial)/third-level (regional) hospital Palliative care IDT: n palliative care specialist physician(s) (physicians with intermediate-level palliative care training until specialists available) n nurses n social workers and/or psychologists n spiritual supporters Inpatient ward, inpatient consultation, outpatient clinic Home care CHW or volunteer supervised by nurse at CHC Nurse based at CHC as needed Sometimes doctor, CO or assistant doctor based at CHC, as needed Inpatient hospice (in some countries) IDT: n part- or full-time palliative care specialist physician (physicians with intermediate level palliative care training until specialists available) n nurses with at least basic PC training n social worker and/or psychologist Terminal inpatient care when home care not desirable or possible; also respite carea acute care facility/nursing home (in some countries) n Nurses with at least basic PC training n Supervision by generalist or PC specialist physician n Simple inpatient care for patients with minimal or no symptoms when home care not desirable or possible n Respite carea 39 A WHO guide for planners, implementers and managers Part 2. Models of palliative care delivery Within the general plan for integrating palliative care into health care systems described in Part 1 of this chapter, various models will be necessary to fit the structure of the health care system in a given country and the strategic plans of the country’s MOH, and to assure that all patients in need of palliative care will have access to it (Table 7). For example: n in some settings, a home care model that entails mobile palliative care teams based at district or community levels and frequent telephone check-ins with the patient or family by telephone may supplant a model that relies on CHWs; and n in some hospitals, a strong and active palliative care consultation service that works closely with link nurses in each ward with basic palliative care training may obviate the need for an inpatient palliative care ward (Textbox 2). Table 7. Models of palliative care delivery Location Services Home care By staff members of a CHC with or without CHWs: n Family members, friends or community volunteers provide most care with support from CHWs or volunteers who visit frequently and report to a nurse at the CHC n A nurse (and sometimes also a doctor) from the CHC visits as needed and/or at regular intervals n A visiting nurse may be able to deliver medicines in some settings n A nurse with advanced training or a doctor may be able to prescribe an opioid dur- ing a home visit By a mobile team: n A team typically consisting at least of a doctor and nurse visits at regular intervals and when called by the patient or family. n In some settings, team members may be able to prescribe and/or deliver medicines including opioids Outpatient clinic Palliative care clinics may be based at CHCs or at hospitals of any level The clinic at a CHC would handle only simple palliative care problems, while the most complex problems should be addressed at the clinic of a third-level hospital where the most highly trained palliative care clinicians should work Clinics at all hospitals should have clinicians able to prescribe morphine for outpatients, and all hospitals pharmacies should stock oral fast-acting and injectable morphine Inpatient care – hospital Consultation model: Physicians trained in palliative care provide advice to the patient’s responsible physician who then decides how to implement the advice Inpatient unit model: A room or ward devoted entirely to palliative care and staffed only by physicians and nurses trained in palliative care Inpatient care – hospice A house, hospital or hospital ward devoted entirely to end-of-life care and staffed by an IDT that includes physicians and nurses trained in palliative care Day care A location staffed by a nurse and CHWs or volunteers where patients receiving palliative care who are able to walk or travel by wheelchair can spend the day under supervision to enable family members to work or have respite time Integrating palliative care and symptom relief into paediatrics 40 Box 2. Inpatient palliative care services at Mulago National Referral Hospital, Uganda At Mulago National Referral Hospital in Uganda, a palliative care link nurse programme was established. Nurses throughout the hospital, in both adult and paediatric units, were trained to provide basic palliative care and to refer patients with complex needs to the hospital’s specialist palliative care team. As a result, the number of patients receiving palliative care increased dramatically. The majority (86%) required only basic palliative care from a link nurse, and 14% were referred for specialist palliative care. This programme demonstrated integration of palliative care into generalist services, ensured that generalist palliative care provision was accessible to all in need throughout the hospital and reached a far greater number of patients than could be seen by the specialist team alone. It also ensured that those receiving specialist care were those with the greatest complexity of need (56). Part 3. Training in palliative care and symptom relief The 2014 World Health Assembly resolution WHA67.19 on palliative care urges each Member State to integrate into its health care education system three levels of palliative care training (Annex 4) (4): 1. Basic training and continuing education in palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers. 2. Intermediate training in palliative care should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine. 3. Specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs. Basic training in palliative care of approximately 35 hours should be included in all curricula of medical schools and nursing schools (Annex 5). The training may be offered either as a discrete course in the last year of medical or nursing school or integrated into other courses throughout the curriculum. For example, training on pain can be integrated into a course on the nervous system, and training on patient–clinician communication can be integrated into courses on psychiatry or medical ethics. The training should include both classroom and bedside teaching. Basic palliative care training also should be provided for all primary care clinicians unless their responsibilities preclude contact with patients in need of palliative care. Intermediate-level palliative care training, lasting approximately 70 hours, should be integrated into specialist training curricula in all fields that entail treating patients with serious or life-threatening illnesses. In addition to paediatrics, oncology, infectious diseases, geriatrics and internal medicine, these include haematology, critical care, family medicine, tuberculosis, hepatology, neurology, cardiology, pulmonology, nephrology, neonatology, traumatology, anaesthesiology and surgery. The training should consist of both classroom teaching and hands-on, supervised clinical experiences. Specialists in these fields, who work mainly in hospitals, should be prepared to provide direct palliative care to their patients. In addition, the physicians who work full- or part-time on hospital-based palliative care teams should have at least intermediate-level palliative care training. 41 A WHO guide for planners, implementers and managers As soon as possible, palliative care IDTs at second- and third-level hospitals should be led by palliative care specialist physicians. Thus, LMICs should work to develop palliative care specialist training programmes that can supply palliative care specialist physicians for their country or region. Specialist training programmes should last at least one year but will vary according to each country’s postgraduate medical training regulations. Although it is best if clinicians providing PPC are fully trained in paediatrics and provide care only for children, generalist clinicians such as general practitioners, family doctors and primary care nurses can and should be trained and competent to provide PPC whenever paediatric specialists are not needed or not available. Basic and intermediate-level palliative care training aims not at specialization but rather at essential competencies (57). General domains of competency in palliative care include: n principles of palliative care n communication n optimizing comfort and quality of life n care planning and collaborative practice n loss, grief and bereavement n professional and ethical practice in the context of palliative care n professional resilience. Essential competencies in PPC are described in Table 8. Generalists providing PPC should be able to obtain advice by telephone at any time from a paediatrician with intermediate-level palliative care training or a palliative care specialist physician. Such task shifting and task sharing is especially crucial in rural areas. Table 8. Essential competencies in PPC Key competency Key components Paediatric symptom assessment (pain and non-pain) Use age-specific methods to assess symptoms such as pain, nausea, dyspnea, anxiety, depression, etc. Appropriate medication selection, dosing and administration Implement age and weight-based dosing with attentiveness to paediatric metabolism and excretion Use non-opioid, opioid and adjuvant therapies aligned with WHO principles; include appropriate use of scheduled along with as-needed doses for breakthrough pain Create/disseminate pharmacologic and non-pharmacologic treatment plan to include emergency plan; place emergency medications in the home with training for caregivers Refer to higher level for more specialized palliative care when needed Psychosocial assessment and intervention (patient and family) Identify and address the child’s and family’s illness understanding, fears and concerns, including those of siblings Assure child and family they will not be abandoned Identify child’s and family’s coping and communication styles and adjust care plan accordingly Communicate with child in a developmentally appropriate fashion Gently explore previous experiences with death, dying, other traumatic life events or special issues such as substance abuse or suicidal ideation, and adjust care plan to minimize further psychosocial stress Use play therapy such as music, storybooks, art for expression, reflection and distraction. Recognize impact of child’s illness on larger community (faith groups, school, etc.) – offer to family to help communicate with school or community agencies Assess family’s resources for bereavement support; make bereavement follow-up plan as needed Integrating palliative care and symptom relief into paediatrics 42 Disease trajectory recognition Consider how manifestations and trajectory of disease may differ from adults and between children of different ages Provide developmentally appropriate anticipatory guidance regarding physical changes and symptom burden to decrease child’s fear of the unknown Developmentally informed and context- appropriate communication Explore child and family emotions and behaviours Use play, art or storytelling to explore child’s experience Truth-tell in a manner appropriate to patient’s development, clinical situation and context Recognize that children grieve, worry about their family members and fear burdening their family members Decision-making and advance care planning Include the patient in decision-making as appropriate for the patient’s values, culture and developmental stage Adjust care plan according to culture, coping and communication styles Honour relevant ethical principles, cultural norms and legal guidelines as appropriate Identify key decision-makers and provide information as necessary Spiritual concerns as part of care Consider referral to an appropriate spiritual care provider Offer to assist in explaining child’s illness to spiritual provider, with permission Allow time for reflection on life meaning and purpose Goals of care Determine whether the goal of care is cure, maintenance of current level of health, comfort, or mixed When the goals of care preclude intensive life-sustaining treatment, write orders to protect the patient from cardiopulmonary resuscitation or other interventions inconsistent with the goal of care Develop care plan with the patient and/or family that integrates awareness of patient symptoms and disease trajectory with desires and goals of patient and family Provide guidance on best location of care (home, hospital, hospice) to achieve agreed- upon goals of care Support tangible needs Offer and arrange as much assistance as may be needed and as possible such as: n medical equipment (wheelchair, cane, suction, commode, hospital bed for the home) n social supports (food packages, cash transfers for rent or school tuition, transportation vouchers, in-kind support) n community services (visits from CHWs, nurses, mobile palliative care teams) Source: Himelstein et al. 2004 (58). 43 A WHO guide for planners, implementers and managers Various curricula in PPC are available and may be adapted for use in any country (Table 9). Care should be taken when adapting a curriculum from an HIC to ensure it is as relevant as possible to the local clinical and cultural situation. For example, it should discuss only medicines in the EP Ped and those that are accessible or may soon become accessible in the country. Table 9. Paediatric palliative care (PPC) curricula Education in Palliative and End-of-life Care (EPEC – Pediatrics) Developed for the United States and HICs. The curriculum consists of 19 online distance-learning modules and 5 in-person face-to-face conference sessions. http://bioethics.northwestern.edu/programs/epec/curricula/pediatrics.html International Children’s Palliative Care Network (ICPCN) e-learning programme Developed in South Africa, intended for both professionals and lay people who participate in palliative care for children. A clinical site where children’s palliative care is being practised is required so that the learner can undertake the clinical assessment which forms part of the course. http://www.icpcn.org/icpcns-elearning-programme/ End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) Developed for the United States and HICs. Adapted from the ELNEC-Core curriculum to meet the needs of children and their families. The 10 modules include perinatal and neonatal content. http://www.aacnnursing.org/ELNEC/About Harvard Medical School Center for Palliative Care, Global Program, Pediatric Palliative Care Curriculum for Low- resource Settings Developed for Viet Nam and LMICs. Can be downloaded and adapted to local clinical and cultural situations. http://www.massgeneral.org/palliativecare/education/international_program.aspx Given that most care for children with serious or life-threatening health conditions is provided by family members and at home, basic, patient-specific training should be provided to family caregivers. The training should be provided by a nurse from the local CHC or from a mobile palliative care team. It may include medicine administration, wound care, safe feeding, infection control, avoiding burn-out, and when and how to request help. Materials for training family caregivers also are available (Table 10). Table 10. Training materials for family caregivers Institute of Palliative Medicine (Calicut, Kerala, India) Palliative care: a workbook for carers Developed for India and other LMICs. http://www.instituteofpalliativemedicine.org/downloads/Palliative%20Care%20Workbook%20for%20Car- ers.pdf Home-based Palliative Care Training and Support Package for Young Children in Southern Africa Developed in South Africa, a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in Southern Africa. Contact: snaicker@hsrc.ac.za

45 A WHO guide for planners, implementers and managers

47 A WHO guide for planners, implementers and managers Ensuring access to essential medicines Strong opioids such as morphine are essential for the treatment of pain caused by cancer, HIV/AIDS and other serious illnesses and due to traumatic injuries, burns and surgery. Yet despite being included on the WHO Model List of Essential Medicines for both adults and children, morphine has not been accessible at all times in adequate amounts, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford (45,59). Of the world’s population, 75% lacks access to morphine or another strong opioid when clinically indicated to treat pain. WHO estimates that 5.5 million terminal cancer patients and 1 million end-stage HIV/AIDS patients worldwide suffer each year without adequate treatment for moderate to severe pain. International drug regulatory bodies, such as the International Narcotics Control Board (INCB), have acknowledged that their emphasis historically has been on restricting opioid misuse and abuse, rather than on ensuring the medical availability of opioids (60). Yet the United Nation’s Single Convention on Narcotic Drugs, which virtually all nations have signed, states that nations must both minimize the risk of abuse and diversion of opioids and ensure their availability for medical and scientific purposes (61). This dual obligation of governments is called the principle of balance, a principle that has been affirmed by WHO (62,63), the United Nations Commission on Narcotic Drugs and the United Nations General Assembly. Governments should ensure that all physicians involved in patient care are both legally permitted and institutionally authorized to prescribe and administer strong opioids such as morphine according to the medical needs of patients. Governments also should ensure that a sufficient supply of morphine is available to meet all medical needs. While misuse of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor interfere in their legitimate medical use for patient care. To fulfil the requirements of the Single Convention and of acceptable medical practice, every effort should be made to identify the barriers to opioid availability within each country. Typically, these barriers include: n overly restrictive regulations on opioid prescribing and dispensing; n inadequate education of doctors, nurses and pharmacists in pain control and the appropriate use of opioids; and n lack of understanding of the appropriate use of opioids among drug regulators who often focused only on the reducing the risk of misuse and abuse and not at all on making these medicines available. Examples of overly restrictive regulations include (64): n a requirement that physicians purchase special opioid prescription pads; n a requirement that all opioid prescriptions for outpatients be signed not only by the prescribing physician, but also by a supervisor or an anaesthesiologist; n permitting only specifically designated physicians to prescribe opioids; n permitting only specialist physicians to prescribe opioids and not general practitioners or family doctors; n restricting opioids to inpatients or to patients receiving hospice services; n limits on opioid dose; n limits on opioid prescriptions and dispensing to less than a 30-day supply when risk of diversion is minimal; and n restricting family practitioners and general practitioners from prescribing them. Integrating palliative care and symptom relief into paediatrics 48 All health systems establish a system to monitor the flow of opioids from import or manufacture to use by the patient (65). In the inpatient setting, there should be verification of opioids taken by the patient. In the outpatient setting, there should be verification of opioids handed over by a pharmacist or clinician to the patient or to a family member on behalf of the patient, minus any amount returned to the pharmacy or clinician by the patient or family. Such a system should not interfere with access to opioids for medical uses but rather ensure continued availability of these medicines. So-called stock-outs and other supply chain failures result in patients suffering both from opioid withdrawal symptoms and from pain and can increase the risk of illicit opioid use and suicide too (66). The Single Convention requires all countries to report annual opioid consumption to the INCB. Together with other health statistics, this reporting is crucial for estimating a country’s expected opioid need the following year and for the INCB to officially allocate the amount needed (67). The INCB has defined various methods for countries to calculate their expected need. Increases in allocation from one year to the next can be requested based on, for example, expected improvements in health care services or on revised estimates of disease prevalence. The INCB uses the pooled estimates from all countries to ensure that the appropriate quantity of opioids is available globally. 49 A WHO guide for planners, implementers and managers

51 A WHO guide for planners, implementers and managers Integration of palliative care and symptom relief can strengthen health care systems and promote UHC Improved quality of life Palliative care has been associated with improved patient outcomes, with financial risk protection for patients and their families and with reduced costs for health care systems (3). Improved patient outcomes include better control of pain and other symptoms, decreased spiritual distress, enhanced quality of life, improved patient and family satisfaction, and reduced number of physician office visits, emergency department visits, hospitalizations and days in the intensive care unit at the end of life (68,69). These improvements tend to be greatest when palliative care is initiated early in the course of illness (69). In some cases, provision of palliative care has been associated with prolonged survival (70). Less data are available on outcomes of palliative care for children than for adults. However, PPC has been associated with improvements in health- related quality of life, emotional well-being and family satisfaction (40,43,71). Thus, evidence indicates that integration of palliative care enables health care systems to better achieve their mission of improving the well-being of those they serve. Improved treatment outcomes Palliative care should not be considered only as an alternative to curative or life-sustaining treatments of dubious benefit, but also as an essential complement to curative or disease-modifying treatments for serious or life-threatening health conditions. Adherence to curative or disease-modifying treatments can be difficult when symptoms of the disease or adverse effects of the treatment are not prevented or adequately relieved. Thus, palliative care may improve adherence particularly to toxic treatments such as those for drug-resistant tuberculosis and many cancers (72). Among the global poor, poverty and other social problems also commonly make adherence difficult. In LMICs, treatment abandonment – the failure to start or complete medically indicated curative therapy – is a major cause of therapeutic failure in potentially curable childhood cancers (73). Specific reasons for treatment abandonment have been found to include financial difficulties as well as distress caused by side-effects and by poor relationships with health care workers (74). PPC could ameliorate all of these problems. Social supports such as those described in Chapter 4 also have been shown to reduce treatment abandonment and improve a patient’s ability to adhere to treatment (74–76). Thus, palliative care not only can improve patients’ comfort, but also strengthen the ability of health care systems to effectively treat their serious and life-threatening conditions. Lower costs for health care systems and financial risk protection for families In many countries, patients and their families bear most of the burden of caring for patients with serious or life-threatening health problems. In addition to the often extreme emotional stress, families of medically ill children often experience profound social and economic burdens, including isolation, loss of income and catastrophic health care spending. Family caregivers, who usually are women or children, may be unable to work, go to school or participate in social activities because of the demands of caregiving. When patients go to the hospital in low-income settings, a family caregiver often must leave income-generating activities, school or caregiving for other children to accompany the patient. This puts patients’ families at risk of financial ruin and caregivers at risk of exhaustion and health problems of their own (22,77,78). Integrating palliative care and symptom relief into paediatrics 52 Multiple studies from HICs indicate that palliative care can reduce costs for patients and families, as well as for health systems (79–83). Palliative care networks that include community-based care and home care, as described in Chapter 4 can enable patients to remain at home and comfortable rather than return to a hospital for symptom relief. They also may reduce demand for expensive disease-modifying treatments of dubious benefit near the end of life by providing a compassionate alternative and supportive counselling, and they can reduce the length of stay for patients already in the hospital by making symptom control accessible in the community. Families thereby are spared the costs of unnecessary admissions to the hospital, including transportation for the patient and caregiver to the hospital, hospital co-payments and lodging costs for the family caregiver. Because the family caregiver can remain at home and may be able to work at least part-time, there also may be less loss of income. Caregivers who are children may also be able to remain in school (84–89). Palliative care integration also can reduce costs for health care systems. As populations age, and as the prevalence of chronic NCDs rises, an increasing percentage of the health care budget is being spent on hospital inpatient care near the end of life that increasingly includes aggressive disease-modifying treatments or life-sustaining treatments of doubtful medical benefit (86,90). Palliative care integrated into health care systems at all levels and including home care can reduce health care costs by decreasing unnecessary or non-beneficial resource utilization (86). Rather than spending the last days, weeks or months of life in hospitals, patients can receive care at home or in the community that is less expensive and yields better outcomes. In addition, overcrowding in second- and third-level hospitals can be reduced. Thus, palliative care can help health care systems produce better results at lower cost (22). An additional benefit for health care systems and for public health can accrue from cost-effective palliative home care. CHWs, nurses from CHCs and mobile palliative care team members who visit patients at home can do more than palliative care. Home visits provide an opportunity for many other primary prevention and screening interventions, including: n teaching about smoking cessation, indoor air quality, diet and exercise; n encouraging prenatal care, childhood vaccinations, cervical cancer screening and HIV prevention and testing; and n tuberculosis and cancer case-finding. Thus, creating or enhancing home care capacity for palliative care also can strengthen capacity for disease prevention and early diagnosis. In addition, the communication links between each level of health care systems that are necessary for palliative care can be used to reduce loss to follow-up. Staff members of hospital-based services, such as cancer chemotherapy or specialist clinics, can inform CHCs of impending appointments, and CHWs can then remind patients and uncover any impediments to the patient’s ability to keep the appointment in time for CHC staff to find a solution. Promotion of UHC In 2015, United Nations General Assembly resolution 70/1 established the Sustainable Development Goals (SDGs) (91). SDG 3 aims to ensure healthy lives and promote well-being for all at all ages, and SDG 3.8 is about achieving UHC, including financial risk protection, access to quality essential health care services and access to safe, effective, quality and affordable essential medicines and vaccines for all. Palliative care exists to attend to, accompany and ensure the well-being of those with serious or life-threatening health problems whose health care needs exceed disease treatment. Thus, palliative care is essential to the achievement of SDG 3 and UHC. WHO specifically mentions palliative care in its definition of UHC: “The UHC means that all individuals and communities receive the health services they need without suffering financial hardship. It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation and palliative care” (92). 53 A WHO guide for planners, implementers and managers

55 A WHO guide for planners, implementers and managers Research and quality improvement in paediatric palliative care To develop high-quality, cost-effective palliative care services for children, research and quality improvement initiatives are much needed (93–95). The 2014 World Health Assembly resolution WHA67.19 on palliative care asserts the importance of evidence-based palliative care (Annex 4) (4). Likewise, WHO has called for research on evidence gaps identified during development of the WHO Guidelines on the pharmacological treatment of persisting pain in children with medical illnesses (96,97). Currently, however, there is a dearth of evidence on PPC, especially from LMICs where the vast majority of patients in need are located. There are a variety of significant barriers to research in palliative care in general, especially in LMICs (29,94,98–100). These include: n difficulty in identifying useful and researchable outcome measures; n lack of research funding; n absence of national and institutional research strategies; n lack of a research infrastructure and culture in LMICs, including adequate and timely research ethics approval processes; and n lack of research skills and overwhelming patient load in LMICs. While all efforts are needed to reduce or eliminate all barriers, this chapter focuses on research priorities for PPC. A wide range of national and global priorities for research in PPC have been proposed, including studies of (95, 101–104): n palliative care needs of children in specific locations (situation analyses); n relative effectiveness of interventions for pain and other symptoms (95); n clinical outcomes such as quality of life; n effectiveness of training on palliative care-related knowledge and attitudes; n existence and degree of implementation of palliative care policy; n optimum models of care; n trust in health care providers; n ethical issues; and n cost and cost-effectiveness of palliative care. Palliative care needs assessment or situation analysis To design palliative care services that provide optimum benefit for a specific population, the most common and most severe types of suffering must be known. When no such data exist on the target population, palliative care situation analyses should assess all categories of suffering: physical; psychological; social; and spiritual. The target population may be small or large. It may be just one community, clinic population or hospital (105–107), or it may be an entire region or country (108,109). The situation analysis may use multiple detailed surveys (109), or it may use only one short survey. Ideally, data on types of suffering should be collected directly from patients rather than from family members or clinicians. However, because very young children are unable to participate in surveys, data must be obtained either from family members Integrating palliative care and symptom relief into paediatrics 56 or using validated tools for assessing symptoms in preverbal or linguistically impaired children (110,111). Older children who are in severe discomfort or near the end of life often are unable to participate in long surveys. Thus, there is a benefit to using very concise surveys that nevertheless address all types of suffering. One example is the Palliative Outcomes Scale that exists in several forms for various populations and has been validated in several languages (112,113). This instrument can yield useful information both for researchers and for clinicians. It is brief enough to be incorporated into routine hospital or clinic forms for recording patient history and physical examination, and these forms, whether electronic or hardcopy, can be used both for palliative care situation analysis and quality assurance assuming appropriate research ethics regulations are followed (105). Design of optimum palliative care services for a population also depends on understanding of common cultural and religious conceptions of illness, treatment and death, and of common attitudes towards health care providers and the health care system (114–119). In addition, children’s attitudes towards illness, treatment and death change along with their physical, emotional, psychological and spiritual development, and all people’s attitudes are influenced by personal experience (120). Thus, research is needed on trends in what children with serious or life-threatening illnesses and their families experience in specific geopolitical, cultural, religious and economic contexts. Attitudes of health care providers at all levels towards palliative care also warrants investigation. For example, irrational fear of prescribing opioids is common and commonly results in poor care and outcomes (121). If such opiophobia is discovered, it can be addressed through education. Optimum PPC treatments There is a need for research to assess the effectiveness of palliative care treatments in general, and the need for such studies in children is even greater. Studies of the safety and relative effectiveness of palliative medicines in children are difficult for many reasons, including the relatively small number of potential research subjects, the inability of children to provide informed consent and the necessary ethical guidelines to protect vulnerable subjects in addition to the barriers to palliative care research cited above. However, WHO has proposed detailed and ranked priorities for research on medical management of persisting pain in children (Table 11). 57 A WHO guide for planners, implementers and managers Table 11. WHO priorities for research on pharmacologic treatment of persisting pain in children with medical illnesses First group of priorities n Assessment of two-step treatment strategy. n Research on alternative strong opioids to morphine (comparative trials of opioids in terms of effectiveness, side-effects and feasibility of use). n Research on intermediate potency opioid analgesics (e.g. tramadol). n Long-term safety data concerning first-step medicines (ibuprofen/paracetamol). Second group of priorities (neuropathic pain) n Antidepressants, specifically tricyclic antidepressants and selective serotonin reuptake inhibitors and newer antidepressants of the class of serotonin and norepinephrine reuptake inhibitors for persisting neuropathic pain in children. Gabapentin for persisting neuropathic pain in children. n Ketamine as an adjuvant to opioids for refractory neuropathic pain in paediatric patients with longterm medical illness. Third group of priorities n Randomized controlled trials (RCTs) on alternative routes to the oral route of opioid administration (including RCTs comparing subcutaneous and intravenous routes). Fourth group of priorities n Update Cochrane reviews on opioid switching including paediatric data, if available. n Randomized controlled trials on opioid switching and research on dose conversion in different age groups. n Randomized controlled trials on short-acting opioids for breakthrough pain in children. Other areas for research and development n Research and psychometric validation of observational behaviour measurement tools for persisting pain settings (neonates, infants, preverbal and cognitively impaired children). n Prospective clinical trials to investigate opioid rotation protocols and their efficacy in preventing side- effects or opioid tolerance and dose escalation. n Development of divisible, dispersible, oral solid-dosage forms of paracetamol and ibuprofen. n Research into appropriate formulations for the extemporaneous preparation of oral liquid morphine. Dissemination of available evidence on the preparation of stable extemporaneous formulations. n Child-appropriate oral solid dosage forms of opioid analgesics. n Research on equianalgesic dosages in conversion of opioid analgesics for different age groups. Source: WHO 2012 (97). Ongoing data collection on PPC integration, accessibility, quality and outcomes The degree of integration of PPC into a health care system, and its accessibility, may be assessed with a few output measures such as those developed by WHO for its periodic survey of NCD country capacity around the world (122). Such a study might explore: n whether government funding is provided for PPC; n whether there is a national policy that includes PPC and whether a national policy on paediatrics includes palliative care; Integrating palliative care and symptom relief into paediatrics 58 n whether such policies are operational, under development or not in effect; n whether oral morphine is available in over 50% of the inpatient and outpatient paediatric care facilities of the public health sector; n whether palliative care is accessible by over 50% of paediatric patients in the public health system; and n whether palliative home care is accessible by over 50% of paediatric patients in the public health system. To periodically assess the quality and outcomes of PPC, the same instruments used for palliative care situation analyses can often be used.Where feasible, however,WHO endorses health technology assessments (HTA) to systematically evaluate the properties, effects and/or impacts of health interventions (Figure 6) (123). HTA covers both the direct, intended consequences of interventions and their indirect, unintended consequences. The approach is used to inform policy and decision-making in health care, especially on how best to allocate limited funds to health interventions. The assessment is conducted by interdisciplinary groups using explicit analytical frameworks, drawing on clinical, epidemiological, health economic and other information and methodologies. It may be applied to interventions, such as including home care in public health insurance coverage, rolling out broad public health programmes such as palliative care, priority setting in health care, identifying health interventions that produce the greatest health gain and offer value for money, and formulating clinical guidelines (Annexes 6 and 7). Figure 6. Health technology assessment: a tool to inform decision-makers in support of UHC Source: WHO 2018 (123). All providers of PPC, whatever the care setting, should be committed to continuous improvement of the quality of their services. Data collected from quality indicators are a primary source of information for improving services. A basic framework for indicators that can be used to assess the key domains of national or regional programmes is described in Table 12. These indicators are adapted from a previous WHO guide for planning managers (7). Fragile states HTA, define Essential services Emergency kits Disaster planning Low-income countries with low coverage HTA, define Primary health care packages Middle-income countries with low coverage HTA, define Guaranteed packages of care Strong health system HTA, define Marginal analysis for additions to packages H ea lt h s ys te m s Continuum of HTA activities 59 A WHO guide for planners, implementers and managers Table 12. Sample indicators for assessing enhanced access to palliative care in PHC Type of indicator Indicator Unit of measure Policy Existence of a current national paediatrics strategy or plan that includes palliative care plan/programme Yes/No Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) included in universal health coverage Yes/No Laws and regulations in place for safe and effective opioid prescribing in line with international drug conventions at the district level? At the community level? Yes/No Yes/No Education Proportion of medical schools that include paediatric palliative care education in undergraduate curricula Ratio of medical schools with paediatric palliative care education at undergraduate level to total medical schools Proportion of nursing schools that include paediatric palliative care education in undergraduate curricula Ratio of nursing schools with paediatric palliative care education at undergraduate level to total nursing schools Proportion of medical technical schools (for training clinical officers, assistant doctors, nurse practitioners, or feldshers) that include paediatric palliative care education in undergraduate curricula Ratio of medical technical schools with paediatric palliative care education to total medical technical schools Service provision Inclusion of paediatric palliative care on the official list of services provided at the primary care level Yes/No Number of communities that provide paediatric palliative care services Ratio of number of communities that provide palliative care services to number of communities Essential medicines Consumption of strong opioids per cancer death Average milligrams of oral morphine equivalents per number of deaths All WHO essential medicines for palliative care included on the national list of essential medicines Yes/No Proportion of districts where oral morphine is available in primary health care Ratio of districts with oral morphine available in primary care to total districts Outcomes Percentage of paediatric patients who had access to palliative care at the time of death Percentage of deceased patients that had access to paediatric palliative care. 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In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration. 2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures. 3. States Parties shall ensure that the institutions, services and facilities responsible for the care or pro- tection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervi- sion. Article 23 1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community. 2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child. 3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. 4. States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning Integrating palliative care and symptom relief into paediatrics 68 methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries. Article 24 1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures: (a) To diminish infant and child mortality; (b) To ensure the provision of necessary medical assistance and health care to all children with emphasis on the development of primary health care; (c) To combat disease and malnutrition, including within the framework of primary health care, through, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking-water, taking into consideration the dangers and risks of environmental pollution; (d) To ensure appropriate pre-natal and post-natal health care for mothers; (e) To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breastfeeding, hygiene and environmental sanitation and the prevention of accidents; (f) To develop preventive health care, guidance for parents and family planning education and services. 3. States Parties shall take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children. 4. States Parties undertake to promote and encourage international co-operation with a view to achieving progressively the full realization of the right recognized in the present article. In this regard, particular account shall be taken of the needs of developing countries. Article 27 1. States Parties recognize the right of every child to a standard of living adequate for the child’s physical, mental, spiritual, moral and social development. 2. The parent(s) or others responsible for the child have the primary responsibility to secure, within their abilities and financial capacities, the conditions of living necessary for the child’s development. 3. States Parties, in accordance with national conditions and within their means, shall take appropriate measures to assist parents and others responsible for the child to implement this right and shall in case of need provide material assistance and support programmes, particularly with regard to nutrition, clothing and housing. 4. States Parties shall take all appropriate measures to secure the recovery of maintenance for the child from the parents or other persons having financial responsibility for the child, both within the State Party and from abroad. In particular, where the person having financial responsibility for the child lives in a State different from that of the child, States Parties shall promote the accession to international agreements or the conclusion of such agreements, as well as the making of other appropriate arrangements. 69 A WHO guide for planners, implementers and managers Annex 2 Seventieth World Health Assembly resolution WHA70.12 Cancer prevention and control in the context of an integrated approach (excerpts) http://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R12-en.pdf 31 May 2017 The Seventieth World Health Assembly, Having considered the report aware that early diagnosis and prompt and appropriate treatment, including pain relief and palliative care, can reduce mortality and improve the outcomes and quality of life of cancer patients; on cancer prevention and control in the context of an integrated approach; … 1. URGES Member States, taking into account their context and institutional and legal frameworks, as well as national priorities: … (10) to develop and implement evidence-based protocols for cancer management, in children and adults, including palliative care; (15) to provide pain relief and palliative care in line with resolution WHA67.19 (2014) on the strengthen- ing of palliative care as a component of comprehensive care throughout the life course; (17) to promote early detection of patients’ needs and access to rehabilitation, including in relation to work, psychosocial and palliative care services; (19) to continue fostering partnerships between government and civil society, building on the contribution of health-related nongovernmental organizations and patient organizations, to support, as appropri- ate, the provision of services for the prevention and control, treatment and care of cancer, including palliative care; Integrating palliative care and symptom relief into paediatrics 70 Annex 3 Child-friendly healthcare: a manual for health workers (excerpts) Child Friendly Healthcare Initiative (CFHI) http://www.cfhiuk.org/publications/cfhi_manual/cfhi_manual.pdf Preface This is an assessment and implementation manual about “Child Friendly Healthcare” (CFH) written for health workers who plan, organise, provide or give care to children and their families. The manual defines CFH by translating the articles of the United Nations Convention on the Rights of the Child (UNCRC) into simple CFH “Standards” that are applicable to everyday healthcare practices. It provides a method and process for assessing these and a simple structure for making any wanted or needed improvements so that children and their families everywhere can receive the “best possible” healthcare, regardless of circumstance. The Child Friendly Healthcare Initiative (CFHI), a child health quality improvement program, was developed by Childhealth Advocacy International (CAI), Charity No: 1071486, in collaboration with The United Nations Children’s Fund (UNICEF), The Child and Adolescent Department of Health and Development of the World Health Organisation (WHO), the Royal College of Paediatrics and Child Health (RCPCH), UK and the Royal College of Nursing (RCN), UK. What is the “best possible” healthcare? The practice of CFH Standards at their best possible level of practice. The best possible: n Considers the child’s “best interests” n Covers the preventive, investigative, curative and palliative aspects of health care taking into account the most up-to-date evidence-base for each care given n Is affordable and effective n Is appropriate, taking into account the resources (human and material) and technology available and the needs of other children sharing these n Is child centred STANDARD 7: Recognising and relieving pain and discomfort ‘Health care providers, organisations and individual health workers, share a responsibility to advocate for children and to reduce the fear, anxiety and suffering of children and their families by ensuring that they recognise, assess and relieve the physical and psychological pain and discomfort of children.’ Supporting criteria 1. A separate pain and other symptom management/palliative care service/s with lead health professionals and/or multi-disciplinary team/s. 71 A WHO guide for planners, implementers and managers 2. Systems of care, guidelines and job aides (for example tools to assess and relieve pain) to help with symptom recognition, symptom assessment and restraint for procedures. 3. Written guidelines, evidence based wherever possible, used by everyone to help with symptom relief, that include advice on the relief of different types of pain and other distressing symptoms (both physical and psychological), and on how to use non-pharmacological and pharmacological pain relieving strategies in the different ages groups: 4. Material resources including: n A safe, secure supply of free or affordable essential drugs for symptom relief that includes opiates and non-opiates; n Distraction toys and other resources to aid non-pharmacological pain and other symptom management. 5. The use of individual pain (and other symptom) plans made with the children and their parent/carer. 6. Psychosocial support for children, families and health workers. Discussion The pilot project found large numbers of children in the participating countries suffering from uncontrolled pain and other distressing symptoms, both physical and psychological. Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. In countries where opiates are available, there may be a reluctance to use them due to these misguided beliefs and also a lack of understanding about how to use them. Whilst it is upsetting for health workers when they are unable to help a distressed child, the effects on the child and their family are much worse and can only be imagined, especially if the child has a chronic illness, a terminal illness or any other life- limiting condition. It is ethically wrong and a failure of a health professional’s duty for a child to suffer from uncontrolled pain or other distressing symptoms. This is particularly the case for a child who has a permanent disability that is associated with chronic symptoms or one who cannot be cured of their illness and may be near the end of their life. Relieving pain and distressing symptoms is not always about cure, but is about making the experience of living “now” more bearable (that is improving the quality of remaining life). Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. Integrating palliative care and symptom relief into paediatrics 72 Effective relief from pain and other distressing symptoms from birth to adulthood could be better if health workers: n were more aware of the suffering and discomfort that all children may experience (including newborn babies) due to pain and other distressing symptoms; n always anticipating a child’s pain and other distressing symptoms; n gave a higher priority to relieving each individual child’s pain and other distressing symptoms; n made greater use of pain and symptom relieving drugs, both non opiates and opiates; n understood and used simple non-pharmaceutical methods that can help (supportive, cognitive, behavioural and physical); n knew about and anticipated all the things that can make the experience of pain or other symptom worse. To “make it better” best practice is for health workers to have core (during initial training) and regular education/training opportunities on the recognition, assessment and treatment of pain and other distressing symptoms. Best possible practice is also facilitated by having, whenever possible, separate skilled health professionals who lead and guide the treatment of pain and other symptoms. Having a multidisciplinary team dedicated to symptom relief and other aspects of palliative care, and using standardised guidelines for managing pain and other distressing symptoms, are known to be effective ways of improving care and sharing good practice. The child’s normal health worker working together with the child and their carers (who know the child best) can often reduce pain and other distressing symptoms by: n planning each individual child’s care as each child responds differently to pain and other distressing symptoms. n anticipating pain and taking effective measures and/or giving drugs before the symptoms occur, for example before a procedure or operation. Children with recurrent distressing symptoms should not wait for these to re-occur before receiving relief. n using pain/symptom assessment tools to help them recognise and assess a child’s symptoms and guide the care they need. n giving drugs in a way that does not cause more pain and distress. Drugs are often still given in a way that is painful for the child, for example by intramuscular injection. The same drugs are frequently available and equally effective as an intravenous or oral preparation, often at a lower cost. n advocating for the child’s needs to be met, if they are unable to meet these needs themselves. Before using drugs, or where they are unavailable there is much that can be done to relieve suffering and make an unpleasant experience more bearable, such as: n being honest with the child and preparing them for what might be a painful experience can help them to cope. Anxiety and mistrust of health workers will make the experience worse; n using appropriate play, stimulation and distraction to help in the management of pain and other symptoms; n using heat, cold, touch and other comfort measures as these can sometimes help the distress of pain and other symptoms; n giving psychological support, simple kindness and involving parents and other familiar carers where possible. 73 A WHO guide for planners, implementers and managers Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 Strengthening of palliative care as a component of comprehensive care throughout the life course 24 May 2014 The Sixty-seventh World Health Assembly, Having considered the report on strengthening of palliative care as a component of integrated treatment throughout the life course;1 Recalling resolution WHA58.22 on cancer prevention and control, especially as it relates to palliative care; Taking into account the United Nations Economic and Social Council’s Commission on Narcotic Drugs’ resolutions 53/4 and 54/6 respectively on promoting adequate availability of internationally controlled licit drugs for medical and scientific purposes while preventing their diversion and abuse, and promoting adequate availability of internationally controlled narcotic drugs and psychotropic substances for medical and scientific purposes while preventing their diversion and abuse; Acknowledging the special report of the International Narcotics Control Board on the availability of internationally controlled drugs: ensuring adequate access for medical and scientific purposes,2 and the WHO guidance on ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines;3 Also taking into account resolution 2005/25 of the United Nations Economic and Social Council on treatment of pain using opioid analgesics; Bearing in mind that palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual; Recognizing that palliative care, when indicated, is fundamental to improving the quality of life, well-being, comfort and human dignity for individuals, being an effective person-centred health service that values patients’ need to receive adequate, personally and culturally sensitive information on their health status, and their central role in making decisions about the treatment received; Affirming that access to palliative care and to essential medicines for medical and scientific purposes manufactured from controlled substances, including opioid analgesics such as morphine, in line with the three United Nations international drug control conventions,4 contributes to the realization of the right to the enjoyment of the highest attainable standard of health and well-being; Acknowledging that palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care; 1 Document 67/31. 2 Document E/INCB/2010/1/Supp.1. 3 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. 4 United Nations Single Convention on Narcotic Drugs, 1961, as amended by the 1972 Protocol; United Nations Convention on Psychotropic Sub- stances, 1971; United Nations Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances, 1988. Integrating palliative care and symptom relief into paediatrics 74 Recognizing that more than 40 million people currently require palliative care every year, foreseeing the increased need for palliative care with ageing populations and the rise of noncommunicable and other chronic diseases worldwide, considering the importance of palliative care for children, and, in respect of this, acknowledging that Member States should have estimates of the quantities of the internationally controlled medicines needed, including medicines in paediatric formulations; Realizing the urgent need to include palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care; Noting that the availability and appropriate use of internationally controlled medicines for medical and scientific purposes, particularly for the relief of pain and suffering, remains insufficient in many countries, and highlighting the need for Member States, with the support of the WHO Secretariat, the United Nations Office on Drugs and Crime and the International Narcotics Control Board, to ensure that efforts to prevent the diversion of narcotic drugs and psychotropic substances under international control pursuant to the United Nations international drug control conventions do not result in inappropriate regulatory barriers to medical access to such medicines; Taking into account that the avoidable suffering of treatable symptoms is perpetuated by the lack of knowledge of palliative care, and highlighting the need for continuing education and adequate training for all hospital- and community-based health care providers and other caregivers, including nongovernmental organization workers and family members; Recognizing the existence of diverse cost-effective and efficient palliative care models, acknowledging that palliative care uses an interdisciplinary approach to address the needs of patients and their families, and noting that the delivery of quality palliative care is most likely to be realized where strong networks exist between professional palliative care providers, support care providers (including spiritual support and counselling, as needed), volunteers and affected families, as well as between the community and providers of care for acute illness and the elderly; Recognizing the need for palliative care across disease groups (noncommunicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups; Welcoming the inclusion of palliative care in the definition of universal health coverage and emphasizing the need for health services to provide integrated palliative care in an equitable manner in order to address the needs of patients in the context of universal health coverage; Recognizing the need for adequate funding mechanisms for palliative care programmes, including for medicines and medical products, especially in developing countries; Welcoming the inclusion of palliative care actions and indicators in the WHO comprehensive global monitoring framework for the prevention and control of noncommunicable diseases and in the global action plan for the prevention and control of noncommunicable diseases 2013–2020; Noting with appreciation the inclusion of medicines needed for pain and symptom control in palliative care settings in the 18th WHO Model List of Essential Medicines and the 4th WHO Model List of Essential Medicines for Children, and commending the efforts of WHO collaborating centres on pain and palliative care to improve access to palliative care; Noting with appreciation the efforts of nongovernmental organizations and civil society in continuing to highlight the importance of palliative care, including adequate availability and appropriate use of internationally controlled substances for medical and scientific purposes, as set out in the United Nations international drug control conventions; 75 A WHO guide for planners, implementers and managers Recognizing the limited availability of palliative care services in much of the world and the great avoidable suffering for millions of patients and their families, and emphasizing the need to create or strengthen, as appropriate, health systems that include palliative care as an integral component of the treatment of people within the continuum of care, 1. URGES Member States:5 to develop, strengthen and implement, where appropriate, palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost- effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes; to ensure adequate domestic funding and allocation of human resources, as appropriate, for palliative care initiatives, including development and implementation of palliative care policies, education and training, and quality improvement initiatives, and supporting the availability and appropriate use of essential medicines, including controlled medicines for symptom management; to provide basic support, including through multisectoral partnerships, to families, community volunteers and other individuals acting as caregivers, under the supervision of trained professionals, as appropriate; to aim to include palliative care as an integral component of the ongoing education and training offered to care providers, in accordance with their roles and responsibilities, according to the following principles: (a) basic training and continuing education on palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers; (b) intermediate training should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine; (c)  specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs; to assess domestic palliative care needs, including pain management medication requirements, and promote collaborative action to ensure adequate supply of essential medicines in palliative care, avoiding shortages; to review and, where appropriate, revise national and local legislation and policies for controlled medicines, with reference to WHO policy guidance,6 on improving access to and rational use of pain management medicines, in line with the United Nations international drug control conventions; 5 And, where applicable, regional economic integration organizations. 6 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. Integrating palliative care and symptom relief into paediatrics 76 to update, as appropriate, national essential medicines lists in the light of the recent addition of sections on pain and palliative care medicines to the WHO Model List of Essential Medicines and the WHO Model List of Essential Medicines for Children; to foster partnerships between governments and civil society, including patients’ organizations, to support, as appropriate, the provision of services for patients requiring palliative care; to implement and monitor palliative care actions included in WHO’s global action plan for the prevention and control of noncommunicable diseases 2013–2020; 2. REQUESTS the Director-General: to ensure that palliative care is an integral component of all relevant global disease control and health system plans, including those relating to noncommunicable diseases and universal health coverage, as well as being included in country and regional cooperation plans; to update or develop, as appropriate, evidence-based guidelines and tools on palliation, including pain management options, in adults and children, including the development of WHO guidelines for the pharmacological treatment of pain, and ensure their adequate dissemination; to develop and strengthen, where appropriate, evidence-based guidelines on the integration of palliative care into national health systems, across disease groups and levels of care, that adequately address ethical issues related to the provision of comprehensive palliative care, such as equitable access, person-centred and respectful care, and community involvement, and to inform education in pain and symptom management and psychosocial support; to continue, through WHO’s Access to Controlled Medicines Programme, to support Member States in reviewing and improving national legislation and policies with the objective of ensuring balance between the prevention of misuse, diversion and trafficking of controlled substances and appropriate access to controlled medicines, in line with the United Nations international drug control conventions; to explore ways to increase the availability and accessibility of medicines used in palliative care through consultation with Member States and relevant networks and civil society, as well as other international stakeholders, as appropriate; to work with the International Narcotics Control Board, the United Nations Office on Drugs and Crime, health ministries and other relevant authorities in order to promote the availability and balanced control of controlled medicines for pain and symptom management; to further cooperate with the International Narcotics Control Board to support Member States in establishing accurate estimates in order to enable the availability of medicines for pain relief and palliative care, including through better implementation of the guidance on estimating requirements for substances under international control;7 7 International Narcotics Control Board, World Health Organization. Guide on estimating requirements for substances under international control. New York: United Nations; 2012. 77 A WHO guide for planners, implementers and managers to collaborate with UNICEF and other relevant partners in the promotion and implementation of palliative care for children; to monitor the global situation of palliative care, evaluating the progress made in different initiatives and programmes in collaboration with Member States and international partners; to work with Member States to encourage adequate funding and improved cooperation for palliative care programmes and research initiatives, in particular in resource-poor countries, in line with the Programme budget 2014–2015, which addresses palliative care; to encourage research on models of palliative care that are effective in low- and middle-income countries, taking into consideration good practices; to report back to the Sixty-ninth World Health Assembly in 2016 on progress in the implementation of this resolution. Integrating palliative care and symptom relief into paediatrics 78 Annex 5 Sample curricula in paediatric palliative care Sample A: Basic curriculum for training doctors, clinical officers, assistant doctors nurse practitioners Day 1 1.1 Paediatric palliative care basic training course: goals and agenda Slide presentation 1.2 Epidemiology of serious and life-threatening health problems among children in the country Slide presentation 1.3 Paediatric palliative care: definition, principles, accessibility, and moral imperative Slide presentation/large group discussion 1.4 Ethical issues and patient–doctor communication in paediatric palliative care Slide presentation/large group discussion 1.5 Palliative care assessment in children Slide presentation 1.6 Growth and development of children in need of palliative care Slide presentation 1.7 Helping children cope in medical settings Slide presentation/large group discussion Day 2 2.1 Pain assessment and treatment in children Slide presentation 2.2 Non-pharmacologic approaches to pain relief in children Slide presentation 2.3 Preparing children for medical procedures Slide presentation 2.4 Paediatric pain cases Small group discussion Day 3 3.1 Dyspnea assessment and treatment Slide presentation/case discussion 3.2 Nausea/vomiting assessment and treatment Slide presentation 79 A WHO guide for planners, implementers and managers 3.3 Constipation/diarrhoea assessment and treatment Slide presentation 3.4 Psychological distress in seriously ill children: depression, anxiety, insomnia Slide presentation 3.5 Altered mental status: delirium in children Slide presentation Day 4 4.1 Talking with parents and children about serious illness Presentation/large group discussion 4.2 Loss, grief and bereavement Slide presentation/large group discussion 4.3 Psychosocial suffering and support Slide presentation/large group discussion 4.4 Role play: Psychosocial support Small group role play 4.5 Health care worker resilience and self-care Short lecture and large group discussion 4.6 Memorial ceremony Group activity Day 5 5.1 Optimum use of life-sustaining treatment Slide presentation/large group discussion 5.2 Complex medical and ethical issues in caring for a dying child Large group case discussion 5.3 Current state of paediatric palliative care in the country Slide presentation 5.4 Palliative care strategic planning: What can you do in your home institution? Group work and discussion Final examination Source: Global Program of Harvard Medical School Center for Palliative Care and Massachusetts General Hospital, 2017. Sample B: Basic curriculum for training nurses Integrating palliative care and symptom relief into paediatrics 80 Day 1 1.1 What is palliative care? Definition and principles Lecture/discussion 1.2 Palliative care situation in the country Lecture/discussion 1.3 The palliative care team Lecture/discussion 1.4 Roles of nurses in palliative care Lecture/discussion 1.5 Nursing ethics in palliative care Lecture/discussion 1.6 Palliative care assessment and approach to the patient Lecture/discussion/role play Day 2 2.1 Principles of pain management Lecture/discussion 2.2 Side-effects of pain medicines Lecture/discussion 2.3 Instructing patients and family caregivers on correct use of morphine Lecture/discussion 2.4 Subcutaneous injection and infusion procedures Lecture/demonstration 2.5 Pain control cases Small group discussion Day 3 3.1 Dyspnea: assessment and management Lecture/discussion 3.2 Dyspnea case Small group discussion 3.3 Wounds, oedema and skin problems: assessment and management Lecture/discussion/demonstration 3.4 Nausea/vomiting: assessment and management Lecture/discussion 81 A WHO guide for planners, implementers and managers 3.5 Constipation/diarrohea: assessment and management Lecture/discussion 3.6 Other symptoms: loss of appetite, cachexia, fever Lecture/discussion 3.6 GI symptom cases Small group discussion Day 4 4.1 Psychological/psychiatric problems: assessment and management Lecture/discussion 4.2 Agitated patient case Large group discussion 4.3 Patient–nurse relationship, communication, and breaking bad news Lecture/discussion 4.4 Discussing diagnosis and prognosis with patient or family Small group role play 4.5 Loss, grief, bereavement Lecture/discussion 4.6 Emotional support for dying patients and their families Lecture/discussion/role play 4.7 Health care worker self-care Lecture/discussion/group activity Day 5 5.1 Barriers to pain relief in the country Lecture/discussion 5.2 Implementing palliative care nursing in participants’ home institutions Lecture/group work/discussion Final examination Sources: University of Medicine & Pharmacy at Ho Chi Minh City, Viet Nam, and Global Program of Harvard Medical School Center for Palliative Care at Massachusetts General Hospital, 2017. Integrating palliative care and symptom relief into paediatrics 82 Sample C: Basic curriculum for training community health workers (CHWs) 4 Hours: 8 sessions of 30 minutes 1. What is palliative care? Brief presentation/sharing of experiences with incurable illness in family/friends 2. Community health workers’ responsibilities to the patient Brief presentation/discussion 3. Knowing about the patient’s medical, psychosocial and spiritual status Presentation/discussion 4. Knowing how to communicate to the patient in a supportive ways Presentation/discussion 5. Know how to recognize uncontrolled symptom. Presentation/Q&A 6. Know when and how to report to supervisor and seek help Presentation/Q&A 7. Resilience and self-care Brief presentation/discussion 8. Grief and bereavement support Brief presentation/discussion Source: Adapted from: Institute of Palliative Medicine. Palliative Care: A Workbook for Carers. Calicut, Kerala, India: WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care, 2017. 83 A WHO guide for planners, implementers and managers Annex 6 Links A really practical handbook of children’s palliative care: for doctors and nurses anywhere in the world http://www.icpcn.org/a-really-practical-handbook-of-childrens-palliative-care/ African Palliative Care Association (APCA) https://www.africanpalliativecare.org/ Asia Pacific Hospice Palliative Care Network http://aphn.org/ Center to Advance Palliative Care. Pediatric palliative care field guide: a catalogue of resources, tools and training to promote PPC innovation, development, and growth https://www.capc.org/topics/pediatric-palliative-care/ Children’s Project on Palliative/Hospice Services (ChiPPS), a program of the National Hospice and Pallia- tive Care Organization of the United States https://www.nhpco.org/chipps-e-journal End-of-life Nursing Education Consortium (ELNEC) https://elnec.academy.reliaslearning.com/ European Association for Palliative Care (EAPC) http://www.eapcnet.eu/ European Association of Palliative Care (EAPC) Primary Care Reference Group http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCReferenceGroups/PrimaryCare.aspx ICPCN e-learning programme http://www.icpcn.org/icpcns-elearning-programme/ Integrating palliative care and symptom relief into paediatrics 84 International Association for Hospice and Palliative Care https://hospicecare.com/home/ International Children’s Palliative Care Network http://www.icpcn.org/ Latin American Palliative Care Association http://www.cuidadospaliativos.org/ NHPCO Standards of practice for pediatric palliative care and hospice https://www.nhpco.org/childrenspediatricschipps/pediatrics-professional-resources Pain and Policy Studies Group http://www.painpolicy.wisc.edu/ Palliative care for infants, children and young people, the facts: a document for health care professionals and policy makers. Prepared by the EAPC Task Force on palliative Care for Children http://www.eapcnet.eu/LinkClick.aspx?fileticket=DeiV2yhtOZA%3D Palliative Care Guidelines Plus http://book.pallcare.info/ Pediatric palliative care: recommendations for treatment of symptoms in the Netherlands https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4634793/ Together for Short Lives: Basic Symptom Control in Paediatric Palliative Care http://www.togetherforshortlives.org.uk/professionals/resources When children die: improving palliative and end-of-life care for children and their families https://www.nap.edu/catalog/10390/when-children-die-improving-palliative-and-end-of-life-care 85 A WHO guide for planners, implementers and managers WHO Guidelines on the pharmaceutical treatment of persisting pain in children with medical illness http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ World Health Organization - Palliative Care Programme http://www.who.int/palliativecare/en/ - Guidelines on persisting pain in children http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ - Planning and implementing palliative care services: a guide for programme managers http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/ - Global atlas of palliative care at the end of life http://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/ World Hospice Palliative Care Alliance http://www.thewhpca.org/ World Organization of National Colleges, Academies and Academic Associations of General Practitioners/ Family Physicians (WONCA) http://www.globalfamilydoctor.com/ Integrating palliative care and symptom relief into paediatrics 86 Annex 7 Glossary Bereavement support Psychological or spiritual counselling or other emotional support for persons grieving after the death of a loved one. Capacity-building A process by which individuals, institutions and societies develop abilities, individually and collectively, to perform functions, solve problems and set and achieve their goals. Children Persons up to their 18th birthday/the age of 18 years (United Nations). Civil society Structures independent from governments such as nongovernmental organizations (NGOs) and human rights groups, independent activists and human rights defenders, religious congregations, charities, univer- sities, trade unions, legal associations, families and clans. Community health workers (CHWs) Persons who assist with health care in their own communities, are selected by the communities, should be answerable to the communities for their activities, should be supported by the health system but not necessarily a part of its organization, and have shorter training than professional workers. Health A state of complete physical, mental and social well-being and not merely the absence of disease or in- firmity. (Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 Member States [Official Records of the World Health Organization, No. 2, p. 100] and entered into force on 7 April 1948. The Definition has not been amended since 1948.) Health systems strengthening The process of identifying and implementing the changes in policy and practice in a country’s health system so that the country can respond better to its health and health system challenges. Any array of initiatives and strategies that improves one or more of the functions of the health system and that leads to better health through improvements in access, coverage, quality or efficiency. Hospice An organization or institution devoted entirely to providing inpatient or outpatient palliative care for pa- tients near the end of life. Integrated health services Health services that are managed and delivered in a way that ensures people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, at the different levels and sites of care within the health system, and according to their needs throughout their life course. 87 A WHO guide for planners, implementers and managers Intersectoral action The inclusion of several sectors, in addition to health, when designing and implementing public policies that seek to improve health care and quality of life. Noncommunicable disease (NCD) A disease or medical condition that is non-infectious and non-transmissible among people, such as heart disease, stroke, cancer, diabetes and chronic lung disease. Nongovernmental organization (NGO) An organized entity that is functionally independent of, and does not represent, a government or state. People-centred health services Health services that are designed to incorporate the perspectives of individuals, families and communities. They are based on the conviction that individuals, families and communities are participants in – as well as beneficiaries of – trusted health systems that respond to their needs and preferences in humane and holistic ways. People-centred care requires that people have the education and support they need to make decisions and participate in their own care. It is organized around the health needs and expectations of people rather than diseases. Primary health care (PHC) Essential health care based on practical, scientifically sound and socially acceptable methods and technol- ogy. It is the central function and main focus of the country’s health system, is essential for the overall social and economic development of the community, and is the first level of contact with the national health system and brings health care as close as possible to where people live and work. It should be universally accessible to individuals and families in the community, and should be affordable for the community and country at every stage of their development Serious health-related suffering (SHS) Suffering is health-related when it is associated with illness or injury of any kind. Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social or emotional functioning. Palliative care should be focused on relieving the SHS that is associated with life-limiting or life-threatening conditions or the end of life. Social determinants of health The conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, and they are the main cause of health inequities – the unfair and avoidable differences in health status seen within and between countries.  Universal health coverage (UHC) Health coverage that provides people with the health services they need while protecting them from exposure to financial hardship incurred in obtaining care. Health services are broadly defined to include health promotion initiatives (such as anti-tobacco policies or emergency preparedness), disease prevention activities (such as vaccination) and the provision of treatment, rehabilitation and palliative care (such as symptom relief and end-of-life care) of sufficient quality to be effective. World Health Organization 20, Avenue Appia 1211 Geneva 27 Switzerland http://www.who.int/servicedeliverysafety/en ISBN 978-92-4-151445-3

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Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers ISBN 978-92-4-151445-3 iii A WHO guide for planners, implementers and managers Contents Foreword ------------------------------------------------------------------------------------------------- v Acknowledgements ----------------------------------------------------------------------------------------- vi Abbreviations and acronyms ---------------------------------------------------------------------------- vii Introduction ------------------------------------------------------------------------------------------------- 1 Chapter 1. What is paediatric palliative care? ---------------------------------------------------------- 5 Chapter 2. Access to palliative care and symptom relief ------------------------------------------ 15 Chapter 3. Palliative care and symptom relief as part of comprehensive paediatric care - 21 Chapter 4. Essential package of paediatric palliative care and symptom relief (ep pED) - 25 Chapter 5. Implementing PPC and symptom relief -------------------------------------------------- 35 Chapter 6. Ensuring access to essential medicines -------------------------------------------------- 47 Chapter 7. Integration of palliative care and symptom relief can strengthen health care systems and promote UHC ------------------------------------------------- 51 Chapter 8. Research and quality improvement in paediatric palliative care ------------------ 55 References ------------------------------------------------------------------------------------------------60 Annexes Annex 1 Adopted and opened for signature, ratification and accession by United Nations General Assembly resolution 44/25 of 20 November 1989 --------------------------------------------------------- 67 Annex 2 Seventieth World Health Assembly resolution WHA70.12 on Cancer prevention and control in the context of an integrated approach (excerpts) ------------------------------------------------------- 69 Annex 3 Child-friendly health care: a manual for health workers (excerpts) ------------------------------------- 70 Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course ------------------------------ 73 Annex 5 Sample curricula in paediatric palliative care -----------------------------------------------------------------78 Annex 6 Links --------------------------------------------------------------------------------------------------------------- 83 Annex 7 Glossary ---------------------------------------------------------------------------------------------------------- 86

vA WHO guide for planners, implementers and managers Foreword The World Health Assembly has resolved that providing access to palliative care for children is “an ethical responsibility of health systems” (Annex 1) and that integration of palliative care into public health-care systems is essential for achievement of the Sustainable Development Goal on universal health coverage (WHA 67.19). Yet access to paediatric palliative care and symptom relief is very rare in a number of countries. As a result, millions of the world’s vulnerable children suffer unnecessarily each year. A wide range of childhood health problems can generate the need for palliative care and symptom relief including not only advanced noncommunicable disease (Annex 2) and HIV/AIDS, but also severe prematurity, birth trauma, congenital anomalies, severe non-progressive disabilities such as paraplegia and quadriplegia, drug-resistant tuberculosis and injuries. Paediatric palliative care requires special knowledge and skills, and it is essential that all providers of primary health care for children and paediatric specialty care possess these competencies. This document is part of a series of WHO publications on palliative care. Their objective is not to provide clinical guidelines, but rather practical guidance on integrating palliative care and symptom relief into health care systems. The current publication is intended to assist anyone involved with planning, implementing, managing or assuring the quality of health care for children to integrate palliative care and symptom relief such that the quality of life of children and their families will be improved, health-care systems will be strengthened and cost-effective models of service provision will be implemented. With this guide, WHO reiterates its commitment to answering the needs and expectations of all people, especially the most vulnerable. Dr Naoko Yamamoto Assistant Director-General Universal Health Coverage and Health Systems World Health Organization Geneva Switzerland Integrating palliative care and symptom relief into paediatrics vi Acknowledgements Development of this guide was coordinated by Eric Krakauer with overall supervision by Marie-Charlotte Bouësseau and Edward Kelley from the WHO Department of Service Delivery and Safety. WHO is grateful to the principal writing team consisted of Jim Cleary (University of Wisconsin, USA), Stephen Connor (Worldwide Hospice Palliative Care Alliance), Julia Downing (International Children’s Palliative Care Network/Makerere University, Uganda), Stefan Friedrichsdorf (Children’s Hospitals and Clinics of Minnesota, USA), Rut Kiman (Hospital National “Prof. A. Posadas”, Argentina), Eric Krakauer (WHO), Ella Kumirova (Dmitri Rogachen National Center of Pediatric Hematology, Oncology and Immunology, Russian Federation), Joan Marston (Palliative Care in Humanitarian Aid Situations & Emergencies (PALCHASE)), Michelle Meiring (Paedspal and the University of Cape Town, Republic of South Africa), Sadath Sayeed (Boston Children’s Hospital and Harvard Medical School, USA) and Meaghann Weaver (Hand In Hand/ Pediatric Palliative Care). WHO acknowledges the valuable contributions provided by Emily B. Esmaili (Duke University, USA), Nancy Hutton (Johns Hopkins University School of Medicine, USA), Bui Thanh Huyen (University of Medicine & Pharmacy at Ho Chi Minh City, Vietnam), Hatoko Sasaki (National Center for Child and Development, Japan), Noyuri Yamaji (St. Luke’s International University Graduate School of Nursing, Japan); as well as the helpful comments of Natalia Arias, Justin Baker, Juan Pablo Beca, Mercedes Bernadá, Silvina Bevilacqua, Carlos Centeno, Megan Doherty, Hernan Garcia, Eduardo Garralda, Catherine Habashy, Nago Humbert, Jenny Hunt, Erica Kaye, Suresh Kumar, Emmanuel Luyurika, Alexandra Mancini, Regina Okhuysen-Cawley, Roberta Ortiz, Rojim J Sorrosa, Rodolfo Verna and Joanne Wolfe. An additional contributor from WHO was Cherian Varghese. This publication was kindly financed by the True Colours Trust. vii A WHO guide for planners, implementers and managers Abbreviations and acronyms AIDS acquired immunodeficiency virus APCA African Palliative Care Association CFHI Child Friendly Healthcare Initiative CHC community health centre CHW community health worker EAPC European Association for Palliative Care EP Ped Essential Package of Palliative Care for Paediatrics and Symptom Relief GP general practitioner HIC high-income country HIV human immunodeficiency virus ICPCN International Children’s Palliative Care Network IDT interdisciplinary [palliative care] team INCB International Narcotics Control Board LMIC low- and middle-income country MoH Ministry of Health NCD noncommunicable disease NGO nongovernmental organization PHC primary health care PPC paediatric palliative care SDG Sustainable Development Goal SSRI selective serotonin reuptake inhibitor UHC universal health coverage UN United Nations WHA World Health Assembly WHO World Health Organization

1A WHO guide for planners, implementers and managers Introduction People younger than 20 years comprise 35% of the global population and 40% of the global population of least-developed nations (1). The number of children – neonates, infants, children, and adolescents up to 19 years of age – who need pediatric palliative care (PPC) each year may be as high as 21 million (2). Another study found that almost 2.5 million children die each year with serious health- related suffering and that more than 98% of these children are in low- and middle-income countries (LMICs) (3). While estimates differ, there is no doubt that there is an enormous need for prevention and relief of suffering among children (Annexes 1 and 3) – for PPC. In response to the large-scale unnecessary suffering of children, the 2014 World Health Assembly resolution WHA67.19 on Strengthening of palliative care as a component of comprehensive care throughout the life course emphasizes that access to palliative care for children is an “ethical responsibility of health systems” (Annex 4) (4). Remarkably, however, PPC has not been seen as a priority around the world. A 2011 study found no PPC services in 65.6% of countries (5). Where services do exist in LMICs, they typically are available in only one or a few institutions and are not integrated into health care systems. A review of PPC in sub-Saharan African countries found that less than 1% of children needing palliative care in Kenya had access to it and less than 5% in South Africa and Zimbabwe (6). This guide is part of a series of World Health Organization (WHO) guidance documents on palliative care (7). It describes the medical and moral necessity of making palliative care and pain relief accessible to all children in need, and their families. It offers an expanded conception of PPC based on the needs of children in LMICs as well as in high-income countries (HICs). It also proposes an Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) and provides practical guidance on integrating PPC and pain relief into health care systems such that the quality of life of children and their families is improved, health care systems are strengthened and cost-effective models of service provision are implemented, all of which contribute to the goal of universal health coverage (UHC). This document is not a clinical manual, and it does not provide clinical guidelines. Rather, its contents are relevant to anyone involved with planning, implementing or managing PPC, including officials of United Nations (UN) organizations working with children, Ministry of Health (MoH) officials, public health leaders, hospital managers, nongovernmental organizations (NGOs), general and specialist paediatricians, surgeons, anaesthesiologists, primary care providers and palliative care providers. It has been developed by a working group of experts in PPC and symptom relief from around the world with extensive experience in working in LMICs.

3A WHO guide for planners, implementers and managers

5A WHO guide for planners, implementers and managers What is paediatric palliative care? Part 1. Defining palliative care WHO defines palliative care as the prevention and relief of suffering of adult and paediatric patients and their families facing the problems associated with life-threatening illness (8). These problems include the physical, psychological, social and spiritual suffering of patients, and psychological, social and spiritual suffering of family members. Palliative care (9): n entails early identification and impeccable assessment and treatment of these problems; n enhances quality of life, promotes dignity and comfort, and may also positively influence the course of illness; n provides accompaniment for the patient and family throughout the course of illness; n should be integrated with and complement prevention, early diagnosis and treatment of serious, complex or life-limiting health problems; n is applicable early in the course of illness in conjunction with other therapies that are intended to prolong life; n provides an alternative to disease-modifying and life-sustaining treatment of questionable value near the end of life; n is applicable to those living with long-term physical, psychological, social or spiritual sequelae of serious, complex or life-limiting illnesses or of their treatment; n accompanies bereaved family members after the patient’s death; n seeks to mitigate the pathogenic effects of poverty on patients and families and to protect them from suffering financial hardship due to illness or disability; n does not intentionally hasten death, but provides whatever treatment is necessary to achieve an adequate level of comfort for the patient in the context of the patient’s values; n should be applied by health care workers of various kinds, including primary care providers, generalists and specialists in many disciplines and with various levels of palliative care training and skill, from basic to intermediate to specialist; n encourages active involvement by communities and community members; n should be accessible at all levels of health care systems and in patients’ homes; and n improves continuity of care, strengthens health systems and promotes UHC. The specific types and severity of suffering vary according to geopolitical situation, socioeconomic conditions and culture. Children and their families in LMICs often endure unhealthy social conditions. They also typically have less access to disease prevention, diagnosis and treatment, to social supports and to specialists and specialized services of many kinds than children in HICs. For example, many children have Integrating palliative care and symptom relief into paediatrics 6 limited or no access to cancer chemotherapy, radiation therapy or oncologic surgery, to effective treatment for multidrug-resistant tuberculosis or to neonatal or paediatric intensive care. Palliative care should never be considered a substitute for disease prevention and treatment or for critical care, and palliative care workers have a responsibility to advocate for them wherever they are not yet accessible (9,10,11). But palliative care also should be universally accessible (4). Many countries also lack rehabilitation medicine specialists and services and long-term care facilities to care for children with non-life-threatening but serious disabilities such as paraplegia or quadriplegia or those due to brain injuries or congenital anomalies. In addition, mental health services and social, welfare programmes may be of limited capacity, difficult to access or unavailable. Palliative care can help to address these needs (Table 1). Further, the types of suffering typically associated with life-threatening illness – pain, other physical symptoms, psychological symptoms – also occur acutely or in association with non-life-threatening conditions. But in low-resource settings, prevention and relief of acute suffering and of suffering due to non-life-threatening conditions often are inadequate or unavailable. For example, in countries where pain medicine does not yet exist as a specialty and where few doctors prescribe opioid pain medicines, prevention and relief of pain from trauma or burns or surgery typically are inadequate. Thus, in these settings, clinicians trained in palliative care could fill this therapeutic void either by training colleagues in symptom control, by providing direct symptom relief, or both. Planning and implementing palliative care services should based on assessment of the types and extent of inadequately prevented or relieved physical, psychological, social or spiritual suffering. This attention to local needs is necessary for palliative care services to be people-centred: tailored to local need and to the needs of individual patients and families (3,12). Table 1. Type of suffering and palliative care need Patient population HICs palliative care need LMICs palliative care need Advanced chronic NCDs High High HIV/AIDS Moderate Very high Drug-resistant tuberculosis Very low High in some regions Critical illness High High Neonates with severe prematurity, birth trauma or congenital anomaly High Very high Severe non-progressive disabilities such as paraplegia and quadriplegia Moderate High Severe social distress such as extreme poverty or stigmatization Low High Acute symptoms related to illness, injuries, surgery Not applicable High Health emergencies and crises Very low High in some areas 7A WHO guide for planners, implementers and managers Part 2. How does palliative care differ between children and adults? Children are not little adults. While the definition and principles of palliative care in Part 1 of this chapter apply to the entire lifespan, PPC requires attention to physical, developmental, psychosocial, ethical, spiritual and relational phenomena that are unique to children (Table 2). Salient differences between adults and children for PPC include the following. n Passage through the different development stages Children change continually as they grow from neonates to adolescents. Children undergo marked physical change, learn to talk, mature in their ability to understand illness and become more independent and self-reliant. Because children proceed at different speeds through the many developmental milestones, palliative care providers should become adept at assessing the unique developmental stage and needs of each child and at responding appropriately. Children who have grown up with chronic illness, interacting with clinicians and hospitals, tend to have a more mature understanding of illness, death and dying than children of their age who have been healthy most of their lives. n Communication needs Good communication with patients and their families requires sensitivity to the child’s developmental stage and to the language, culture and illness understanding of both the patient and family and to their degree of trust in the health care system. To the greatest extent possible, PPC elicits a child’s report of her/his symptoms using, for example, validated paediatric pain scales. PPC also honours each child’s values as much as possible and seeks their uncoerced direction, alongside that of the family, about treatments and goals of care. Patients who have not yet reached maturity or the legal age of consent sometimes may disagree with their parents or family caregivers about these issues. n Dependence on adults Children’s dependence on others ranges from the total dependence of a neonate to the high degree of independence of some adolescents who may sometimes want to be seen as a child when seriously ill. n Impact on families While a child’s serious or life-threatening illness profoundly impacts any family, the impact may be greatest in LMICs. Even where treatment is provided free of charge or mostly covered by insurance, the illness can result in financial hardship or catastrophe for the family. Co-payments for treatment, or gratuities may in themselves strain or exceed a family’s financial capabilities. In addition, families must pay for travel to the clinic or hospital not only for the patient, but also for a family caregiver. If the patient remains in the hospital, the family caregiver – often a parent or older child – must pay for meals and often also a place to sleep. That parent or older child is then unable to work and care for the household. This may result in siblings being taken out of school either for lack of school fees or because they must work or care for younger siblings. To pay these expenses, families must often sell their possessions, including farm animals, land, tools or machines needed to earn a living, or even their homes. Too often, a child’s illness results in the family’s financial impoverishment as well (13–15). PPC must assess these risks and respond to them with social supports (Chapter 4). Even when the family’s financial situation is stable, the emotional impact of a child’s serious or life- threatening illness is usually profound. The emotional distress of parents whose child is experiencing serious or life-threatening illness typically is much greater than for a family member of an adult with a similarly serious condition. Parents often seek any treatment that might help their child, even Integrating palliative care and symptom relief into paediatrics 8 if it takes them far from home and far exceeds their financial resources. Thus, PPC entails taking time to explore parents’ understanding of their child’s diagnosis and prognosis and to gently correct misunderstandings. Parents have reported that they might have made different decisions if they had understood earlier what they understood after their child had died. In addition, each family has unique psychosocial characteristics. A child with a life-threatening disease may strain or challenge existing relationships within the family. Role reversal, overly enmeshed relationships, and alliances and conflicts between family members may occur. A dysfunctional family may significantly impair the child’s quality of life. PPC includes assessment of family function and efforts to resolve conflict or dysfunction. n Types of health conditions The wide range of childhood illnesses increases the difficulty of providing PPC services that meet each child’s needs. Further, many paediatric genetic or congenital conditions are rare and not seen in adults, the symptoms may differ in each child and there may be no clear diagnosis or prognosis (16). n Paediatric formulations and dosing of essential medicines It is easier to provide the correct weight-based dose for a young child of a liquid formulation of a medicine, and it is easier for a child to swallow. Where no liquid or paediatric formulation of an essential medicine such as oral morphine is accessible, pills may be cut in halves or quarters or crushed and mixed with food or dissolved in liquid. However, it is difficult to provide an accurate dose in this manner. Further, the pharmacokinetics of medicines are often different in children than in adults, but there may be little or no evidence on the safety and effectiveness of some palliative medicines in children. When there is no alternative to a given medicine to relieve a child’s symptom, particular judiciousness and vigilance are needed on the part of the clinician (17). n Degree of difficulty of clinical decision-making Decision-making about using, withholding or withdrawing disease-modifying or life-sustaining treatments of questionable benefit for a child can be especially difficult for a variety of reasons. Parents often have more difficulty understanding or accepting the poor prognosis of a child than of an aged family member. Clinicians, too, may find it most difficult to weigh the relative benefits and burdens of an intervention when the patient is a child. In addition, modes of decision-making for ill children unable to speak for themselves often vary by culture, by family and sometimes even within families. Whenever possible, gentle but diligent efforts should be made to understand the child’s perspective. n Clinical environment PPC wards and clinics should be made as child-friendly and comforting as possible. The comfort of paediatric patients can be promoted by enabling at least one family member to be present and comfortable (to have adequate food and a comfortable place to sleep near the patient at an affordable cost). The child’s comfort also can be enhanced with distracting pictures or soothing colors on the wall, comforting and clean textures on the bedding, gentle sounds such as soft music or lullabies, or calming toys. 9A WHO guide for planners, implementers and managers Table 2. PPC: differences from adult palliative care n Prognosis, life expectancy and functional outcome often less clear. n More frequent need to integrate palliative care with intensive disease-modifying or life-sustaining treatments due to unclear prognosis. n Care often requires a dual focus on growth/development and potential for death. n Greater emotional burden for family members and clinicians because serious and life-threatening illnesses are not commonly considered normal conditions for children. n Patients undergo continual developmental change: physical, hormonal, cognitive, expressive and emotional. n Patients have changing information needs, recreational and educational needs, and modes of coping with stress. Thus, child life specialists, play therapists and behavioural specialists can greatly enhance palliative care for children. n Patients may have congenital anomalies of uncertain type or rare genetic conditions. n Some genetic conditions may affect multiple children in a family and create a sense of guilt in parents. n Expertise needed both to discern a child’s emotional and cognitive development and to communicate in a manner appropriate for the child’s emotional and cognitive development: to provide the most appropriate amount and kind of information about the illness and to elicit the child’s preferences for care. Sources: Adapted from Levine et al. 2013 (18) and Weaver et al. 2016 (19). Part 3. Who requires PPC? Children with a wide range of health conditions require PPC (Tables 3 and 4). Thus, PPC should be integrated into all sectors and all levels of child health care, and it should be integrated with many types of potentially curative and life-sustaining treatments (Chapter 5) (20,21). In addition, clear plans should be put in place to make sure palliative care continues without interruption when children with long-term palliative care needs become adults. In LMICs, efforts to integrate palliative care into health care systems should always be accompanied by efforts to maximize accessibility of prevention, early diagnosis and treatment of serious and life-threatening illnesses (21,22). However, this accessibility is very limited for many children in LMICs (5,23–25). In addition, as many as 80% of malignancies and many cases of organ failure are diagnosed very late in their course when curative treatment is not available in the country or does not exist (26–28). Therefore, the need for PPC is greatest in LMICs, yet few PPC services exist in these countries (Chapter 2). Integrating palliative care and symptom relief into paediatrics 10 Table 3. Populations that need PPC Population Examples Children with acute life-threatening conditions from which recovery may or may not be possible Any critical illness or injury, severe malnutrition Children with chronic life-threatening conditions that may be cured or controlled for a long period but that may also cause death Malignancies, multidrug-resistant tuberculosis, HIV/AIDS Children with progressive life-threatening conditions for which no curative treatment is available Spinal muscular atrophy, Duchenne’s muscular dystrophy Children with severe neurologic conditions that are not progressive but may cause deterioration and death Static encephalopathy, spastic quadriplegia, spina bifida Neonates who are severely premature or have severe congenital anomalies Severe prematurity, anencephaly, congenital diaphragmatic hernia, trisomy 13 or 18 Family members of a fetus or child who dies unexpectedly Fetal demise, hypoxic-ischaemic encephalopathy, overwhelming sepsis in a previously healthy child, trauma from motor vehicle accident, burns, … Sources: Downing et al. 2016 (29); Wood et al. 2010 (30). Table 4. Conditions that commonly generate a need for PPC Condition Examples of palliative care needs Malignancies (paediatric types differ from those in adults) n Leukaemias: haemorrhage due to coagulopathies, painful procedures such as bone marrow biopsies n Brain tumour: headache, cognitive and neurologic deficits n Sarcomas: severe pain, loss of a limb Conditions discovered or occurring in the perinatal period (31–33) n Congenital anomalies: symptomatic dysfunction of a vital organ such as the heart, bowel or brain; stigmatized superficial anomalies n Prematurity: respiratory distress, intraventricular haemorrhage, brain ischaemia and permanent neurodevelopmental disability n Birth asphyxia: hypoxic-ischaemic brain injury and permanent neurodevelopmental disability Injuries n Head trauma: poor cognitive and motor skills n Burns: acute and sometimes also chronic pain, stigmatized disfigurement n Exposure to violence, conflict or natural hazard: mood disorders such as anxiety, depression, post-traumatic stress disorder Serious infections n HIV/AIDS: symptomatic opportunistic infections, stigmatization, adverse effects of medicines n Drug-resistant tuberculosis: cough, constitutional symptoms (fever, sweats, weight loss), adverse effects of medicines, social isolation, stigmatization n Meningitis: permanent neurodevelopmental disability n Rheumatic fever: symptomatic heart failure Genetic conditions n Neurologic conditions: progressive neurological deficits and disability n Sickle cell disease and anaemia: pain crises, bone necrosis n Connective tissue disorders: chronic pain 11 A WHO guide for planners, implementers and managers Protein energy malnutrition n Pain, dyspnea n Vomiting or diarrhoea related to re-feeding Being a patient n Painful procedures n Postoperative pain n Not having an opportunity to have questions answered and fears assuaged Sources: Adapted from Knaul et al. 2017 (3) and Krakauer et al. 2018 (22). Part 4. “Palliative care plus”: preventing and relieving the suffering of children without a life-threatening illness Attentively identifying, preventing and managing a child’s pain is a moral and ethical imperative, regardless of the patient’s age (even neonates experience pain), ability to communicate or cognitive capacity, or health condition (22,34). Where acute and procedural pain control and services for children with severe disabilities or congenital anomalies are readily available, as they often are in HICs, palliative care can focus entirely on children with life-threatening illnesses. However, where these services are not easily accessible, as is often the case in LMICs, clinicians trained in palliative care should provide them, or teach others to provide them, in addition to caring for children with life-threatening illnesses. Acute and procedural pain Acute pain from traumatic injuries is often inadequately treated in children or not treated at all. The result is not only unnecessary suffering from the pain itself, but also greater emotional distress on the part of the child and family, greater difficulty in treating the patient due to pain-related fear and agitation, and a higher risk of chronic emotional sequelae such as post-traumatic stress disorder (35). Procedural pain is a common yet preventable cause of suffering in children. For quick and minimally invasive procedures such as phlebotomy, simple non-pharmacologic techniques can be used before, during and after the procedures to minimize pain and its associated fear and distress. Distraction or relaxation techniques prior to and during painful procedures can help patients and caregivers maintain a sense of control and decrease the perceived intensity of symptoms. Topical analgesia also can be used, if available. For more complex procedures, such as burn dressing changes, systemic analgesia medication should be used. Intra-operative and postoperative pain usually require an opioid. Examples of painful procedures: n phlebotomy n injections n lumbar puncture n bone marrow aspirate n thoracentesis n dressing changes. Integrating palliative care and symptom relief into paediatrics 12 Children who suffer without a clearly life-threatening condition There is a large burden of suffering among children with severe physical disabilities in both HICs and LMICs. Although the range of diagnoses is large and diverse, there are common types of suffering experienced by children with disabilities that can be relieved through palliative care approaches (36). Whether the disability is due to a traumatic injury, congenital anomaly or genetic condition, pain and social isolation and stigmatization are common. Other chronic physical or psychological symptoms may be present depending on the specific condition. In addition, whenever a child (or adult) is permanently unable to feed or wash herself, walk or use the toilet independently, this may cause physical, financial and emotional burdens for the family, especially a rural poor family. Palliative care providers may be the only source of relief for these types of distress. Box 1. Child Friendly Healthcare Initiative (CFHI) CFHI is based on the United Nations Convention on the Rights of the Child (UNCRC) (Annexes 1 and 3) and was developed by Child Advocacy International (CAI) with the technical support of WHO, the Royal College of Nursing (United Kingdom) and the Royal College of Paediatrics and Child Health (United Kingdom) in collaboration with the United Nations Children’s Fund (UNICEF). The main aim of CFHI is to develop a system of care focused on the physical, psychological and emotional well-being of children attending health care facilities, particularly as inpatients. A set of globally applicable standards were proposed to ensure that practices in hospitals and health centres everywhere respected children’s rights, not only relating to survival and avoidance of morbidity, but also in relation to their protection from unnecessary suffering and their informed participation in treatment (37). 13 A WHO guide for planners, implementers and managers

15 A WHO guide for planners, implementers and managers Access to palliative care and symptom relief Access to PPC lags far behind that of adult services. Development of PPC is hampered by a number of factors including geography, lack of education, lack of public awareness, stigma and lack of consensus on the diseases and conditions appropriate for PPC. There is resistance to admitting that children need palliative care because it is emotionally difficult to admit that children suffer and die. Further, many myths persist about caring for seriously ill children, including a belief that children are not aware of their condition and do not experience pain in the same way as adults. Estimates of the need for PPC are hampered by a lack of registries and reliable data collection from most countries. Need is unevenly distributed globally with almost half the need in sub-Saharan Africa and 98% of the need in LMICs. Children needing palliative care are not concentrated in any one area in a country and are difficult to serve after leaving institutions. Clinicians trained in PPC are few and far between, and children suffering from pain or other symptoms in an area without a trained clinician are likely to have inadequate relief or none at all. Estimating the global need for PPC Several estimates of the global need for PPC have been undertaken in recent years (2,3,38). One estimate identified 11 categories of conditions that generate a need for PPC at the end of life only and the percentage of the need due to each condition (Figure 1). Figure 1. Conditions that generate a need for palliative care at the end of life by disease group Cirrhosis of the liver 1.06% Congenital anomalies* 25.06% Neonatal conditions* 14.64% Protein energy malnutrtion 14.12% Meningitis 12.62% HIV/AIDS 10.23% Kidney diseases 2.25% Neurologicial conditions* 2.31% Cancer 5.69% Endocrine, blood, immune disorders 5.85% Cardiovascular disease 6.18% *see excluded conditions (Appendix 6) N = 1,170.011 Source: Reprinted with permission from Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 16 The total number of children in need of PPC globally each year may be as high as 21 million, and of these, 8 million may have problems that require specialist PPC (2). Local need for PPC can be estimated with assistance from key informants and the affected people. Direct stakeholders should be involved both in estimating the need and in the planning process for service implementation. A working group on PPC sanctioned by a ministry of health could examine local and international data and key informant information to estimate the probable range of need, from the lowest to the highest. Local mortality and disease prevalence data can be used, but these data are often unreliable or unavailable in LMICs. Mapping levels of palliative care development In addition to understanding the need for children’s palliative care, it is also important to assess the capacity to provide PPC globally. Mapping of levels of PPC development was undertaken by the International Children’s Palliative Care Network (ICPCN) using a five-level schema (Figure 2) (29). Figure 2. Levels of PPC development in 2015 Source: Reprinted with permission from Downing et al. 2016 (29). 1. Evidence (from figure 2) of broad palliative care provision for children. Approaching full integration within health care services as well as a national policy to support children’s palliative care. 2. Evidence of broad palliative care provision for children with training available and focused plans for development of services and integration into health care services. 3. Evidence of localized palliative care provision for children and availability of training. 4. Evidence of capacity building activities for the provision of children’s palliative care. 5. No known provision of children’s palliative care. 1 2 3 4 5 17 A WHO guide for planners, implementers and managers Measurement of need for, and capacity to deliver, PPC are necessary elements in planning PPC in a country or region. This is usually done by knowledgeable individuals (including a national palliative care association if there is one) and can be done sequentially. In most LMICs, there are few PPC programmes, and these few may be known to key informants. The primary information needed is the capacity of these institutions to deliver PPC including: n number of patients who received care in one year n diagnoses n length of service by diagnosis and overall n average daily census. Surveys can be used to collect these data with follow-up of non-respondents. Once the need for PPC has been estimated and capacity assessed, it is then possible to conduct a gap analysis (38). Gap analysis is essential for health care planning purposes as it shows the size of the unmet need for PPC. Disparity in access to palliative care Currently, 98% of the need for PPC is in LMICs, and nearly 50% of the need is in the African region (Figures 3 and 4). Yet few clinicians in LMICs have any training in PPC. Figure 3. Distribution of children in need of palliative care by WHO region N = 1,170.011 AFR 49% EUR 3% SEAR 24% EMR 12% WPR 7% AMR 8% AFR: African Region; AMR: Region of the Americas; SEAR: South-East Asia Region; EUR: European Region; EMR: Eastern Mediterranean Region; WPR: Western Pacific Region Source: Connor et al. 2014 (38). Integrating palliative care and symptom relief into paediatrics 18 Figure 4. Distribution of children in need of palliative care at the end of life by World Bank country income group N = 1,170.011 Low middle income 48.5% High income 2.1% Low income 35% Upper middle income 14.4% Source: Connor et al. 2014 (38). Programmes in PPC An accurate estimate of the number of PPC programmes worldwide is not available at present. However, a number of centres of excellence have been identified that can serve as models for development: n Members of ICPCN: http://www.icpcn.org/members-directory/ n All 196 members of the United Kingdom association Together for Short Lives: https://www2. togetherforshortlives.org.uk/portal/public/volunteer/List.aspx n Members of the United States National Hospice and Palliative Care Organization that have paediatric palliative care services: https://www.nhpco.org/find-hospice 19 A WHO guide for planners, implementers and managers

21 A WHO guide for planners, implementers and managers Palliative care and symptom relief as part of comprehensive paediatric care Generalist PPC Most children suffering from problems associated with serious or life-threatening health conditions do not need a PPC specialist. Most PPC can be provided very well by generalist clinicians with basic- or intermediate- level training in palliative care, just as most infections can be competently treated by generalist clinicians and do not require intervention by an infectious disease specialist. Thus, health systems should require that general paediatricians, general practitioners, family doctors and paediatric nurse practitioners have at least basic training in PPC, and health system policies should make PPC one of the official responsibilities of these clinicians (Annex 5). All palliative care training programmes in LMICs, whether basic, intermediate or specialist, should address the special problems and needs of paediatric patients and their families at least until there are adequate numbers of paediatric clinicians trained in palliative care. Thus, any clinician trained in palliative care should be able to provide at least basic palliative care to children. There are many similarities between general paediatrics and PPC that should facilitate integration of palliative care training into paediatrics training and practice. These include: n emphasis on continuity of care and development of a trusting therapeutic relationship; n integrated bio-psycho-social care; n attention both to the patient and to the family; and n special attention to patients’ and family members’ anxieties about both illness and treatment. The emotional discomfort of contemplating the death of children can be a barrier to integration of PPC into general paediatrics. For the sake of patients and families, this barrier must be recognized and overcome. Most patients in need of palliative care, whether adults or children, are at home. Generalist clinicians with palliative care training are essential to making palliative home care possible. First-level (district) hospitals should establish a palliative care and pain control clinic staffed by clinicians with basic or intermediate- level palliative care training. Their roles would include (see also Chapter 5): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; n inpatient care for patients whose symptoms cannot be adequately controlled outside the hospital but who do not require higher-level care; n referral of patients with severe or refractory symptoms to higher-level hospitals; and n training and supervision of clinicians providing palliative care at community health centres (CHCs). In settings where clinicians at the community level are not permitted to prescribe opioids for outpatients, physicians at the district level should take on this role for any patients in the district who require opioid therapy for pain or terminal dyspnea. Clinicians who provide palliative care at community CHCs – which may include doctors, clinical officers, assistant doctors, nurse practitioners or nurses with advanced palliative care training – should have basic training in palliative care (Annex 5). Integrating palliative care and symptom relief into paediatrics 22 Their roles should include (Chapter 5) (22,39): n ongoing outpatient assessment of symptoms and adjustment of symptom control regimens to enable patients to stay at home; ideally, at least one clinician at a CHC should be able to prescribe oral morphine for outpatients; n training and supervision of community health workers (CHWs) who visit patients at home as often as daily to recognize uncontrolled symptoms or social or spiritual distress and report it to the CHC; and n if possible, to provide inpatient hospice or end-of-life care for a maximum of one or two patients at a time whose symptoms are well controlled but whose families are unable to care for them at home. PPC provision by physician-specialists in disciplines other than palliative care Specialist doctors who frequently care for children with serious or life-threatening conditions, such as oncologists, cardiologists, intensivists and neonatologists, should be required to receive intermediate-level training in PPC (Chapter 5, Part 3). Health system policies should require that these physicians have PPC as one of their official responsibilities. Specialist physicians trained in this way, usually based at second- level (provincial) or third-level (regional referral) hospitals, will be able to respond adequately to most of the suffering of children that cannot be adequately relieved at the district or community level by generalist clinicians. In addition, these physicians will be capable of integrating palliative care with the curative and disease-modifying treatment for children that they usually practise. Training in palliative care also will prepare them to recognize when curative or life-sustaining treatment are likely to be more harmful than beneficial and to advise patients and families on the relative benefits and burdens of potential interventions. Health system policies also should require that second- and third-level hospitals have a palliative care interdisciplinary team (IDT) and that specialist physicians with intermediate-level training in palliative care be affiliated with the IDT. Basic palliative care training for generalist clinicians should include curriculum on when and how to refer patients to the IDTs at higher-level hospitals. Specialist PPC Some children have refractory or complex symptoms that even physicians with intermediate-level PPC training may be unable to relieve. These patients require intervention by palliative care specialist physicians who lead palliative care IDTs. However, there are as yet few palliative care specialists in LMICs, even fewer PPC specialist physicians and no PPC specialist training programmes. Palliative care specialist training programmes should be created as soon as possible in LMICs, and ministries of health should recognize palliative medicine as an official medical specialty to enable these programmes to develop and their graduates to practise. Palliative care specialist training programmes should include training in PPC for all trainees, and they should aim to develop a PPC specialist training track as soon as possible. National health care policies should require major children’s hospitals to establish PPC services directed by PPC specialist physicians within a specified period of time. PPC specialist physicians and IDTs are especially important in paediatric cancer centres. The majority of distressing symptoms in children with advanced cancer, such as pain, dyspnea and nausea/vomiting, are treated inadequately or not at all, even in HICs (40–44). Further, new targeted cancer therapies and immunotherapies sometimes exacerbate symptoms, generate new ones or create complex clinical dilemmas for which palliative care expertise may be crucial. Similarly, hospitals that offer extra-corporeal membrane oxygenation (ECMO) or other invasive life-sustaining treatments should also offer palliative care provided by palliative care specialist physicians and IDTs to minimize the discomfort of critical care, to offer an alternative to life-sustaining treatment of questionable benefit and to ensure the comfort of children for whom life-sustaining treatment will be withdrawn. 23 A WHO guide for planners, implementers and managers

25 A WHO guide for planners, implementers and managers Essential Package of Paediatric Palliative Care and Symptom Relief The Essential Package of Paediatric Palliative Care and Symptom Relief is the minimum palliative care and symptom relief that should be accessible by any child in any setting. The EP Ped is based on the essential package of palliative care described by Krakauer et al. (22) and Knaul et al. (3), and adapted for children based on the expert opinions of the members of the WHO working group on PPC. It consists of a set of safe, effective, inexpensive, off-patent and widely available medicines, simple and inexpensive equipment, and basic social supports, which together can prevent and relieve suffering of all types – physical, psychological, social and spiritual (Table 5). It also includes the human resources needed to apply them appropriately, effectively and safely and to accompany patients and families throughout the course of the illness. Medicines The list of medicines in the EP Ped is based on the WHO Model List of Essential Medicines for Children (45) and adapted for this document. Medicines were selected based on the following criteria: n they are necessary to prevent or relieve the specific symptoms or types of suffering most common in children with serious, complex or life-threatening health problems; n the safe prescription or administration requires a level of professional competency achievable by doctors, clinical officers, assistant doctors or nurse anaesthetists with basic training in palliative care; and n within its class of medicines, they offer the best balance between accessibility on the world market, clinical effectiveness, safety, ease of use and low cost. Morphine and other opioids Morphine, in oral fast-acting and injectable preparations, is the most clinically important of the essential palliative care medicines (45). It must be accessible in the proper form and dose by any patient with terminal dyspnea or with moderate or severe pain that is either acute, chronic and associated with malignancy, or chronic in a patient with a terminal prognosis. Opioids should not be first-line treatment for chronic pain outside of cancer, palliative and end-of-life care, except under special circumstances and with strict monitoring (46). Morphine, in both injectable and oral fast-acting formulations, should be accessible by prescription at every referral, provincial and district hospital, and oral fast-acting morphine should be accessible by prescription at CHCs unless there is a serious and unavoidable risk of diversion of controlled medicines from CHCs. All doctors who ever care for patients with moderate or severe pain of the types described, or for patients with terminal dyspnea, should be adequately trained and legally empowered to prescribe oral and injectable morphine for inpatients and outpatients in any dose necessary to provide adequate relief as determined by the patients. Doctors inexperienced at prescribing morphine can be trained adequately with the curriculum in basic PPC described in this document or with similar curricula (Annex 5). Doctors also should be enabled to prescribe an adequate supply of morphine so that obtaining refills is feasible for families without requiring unreasonably frequent, expensive or arduous travel. Whenever clinically possible, oral morphine rather than the injectable form should be prescribed. All doctors should be trained to assess and treat opioid side-effects and to avoid injudicious use of morphine for mild pain or chronic non-malignant pain. In some countries, it may be possible for specially trained nurses to provide opioid therapy safely and effectively. Integrating palliative care and symptom relief into paediatrics 26 Table 5. EP Ped: interventions, medicines, equipment, human resources and social supports Interventions Inputs Social supports Medicinesa Equipment Human resourcesb Prevention and relief of pain or other physical suffering,d acute or chronic Amitriptyline, oral Bisacodyl (senna), oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine, or dimenhydrinate), oral and injectable Fluconazole, oral Fluoxetine (sertraline or citalopram), oral (>8 years old) Furosemide, oral and injectable Haloperidol, oral and injectable Hyoscine butylbromide, oral and injectable Ibuprofen (naproxen, diclofenac, or meloxicam), oral (>3 months old) Lactulose (sorbitol or polyethylene glycol), oral Loperamide, oral Metaclopramide, oral and injectable (>1 month old) Metronidazole, oral, to be crushed for topical use Morphine, oral immediate release and injectable Naloxone, injectable Omeprazole, oral Ondansetron, oral and injectablef (>1 month old) Oxygen Paracetamol, oral Petroleum jelly Pressure-reducing mattresses Nasogastric drainage and feeding tubes Urinary catheters Opioid lock boxes Flashlights with rechargeable batteries (if no access to electricity) Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) CHWs (if available) 27 A WHO guide for planners, implementers and managers Prevention and relief of psychological suffering,e acute or chronic Amitriptyline, oral Dexamethasone, oral and injectable Diazepam, oral and injectable Diphenhydramine (chlorpheniramine, cyclizine or dimenhydrinate), oral and injectable Fluoxetine (sertraline or citalopram), oral Haloperidol, oral and injectable Lactulose (sorbitol or polyethylene glycol), oral Diapers (baby and adult) or cotton and plastic Doctors (with basic palliative care training) Nurses (with basic palliative care training) Social workers, psychologists, or grief counsellors CHWs (if available) Prevention and relief of social suffering, acute or chronic Income and in- kind supportc Social workers CHWs and/or volunteers (if available) Prevention and relief of spiritual suffering Local spiritual counsellors a Based on WHO 2017 (45). Acceptable alternative medicines are in parentheses: ( ) b Doctors may be paediatricians, general practitioners, family practitioners, surgeons, anaesthesiologists, intensivists, neonatologists, infectious disease specialists, palliative care specialists, clinical officers, or others. Nurses may include nurse-anaesthetists. c Only for patients living in extreme poverty and for one caregiver per patient. Includes cash transfers to cover housing, children’s school tuition, transportation to health care facilities or funeral costs; food packages; and other in-kind support (blankets, sleeping mats, shoes, soap, toothbrushes, toothpaste). d Other physical suffering includes breathlessness, weakness, nausea, vomiting, diarrhoea, constipation, pruritus, bleeding, wounds and fever. e Psychological suffering includes anxiety, depressed mood, confusion or delirium, dementia and complicated grief. f Only in hospitals that provide cancer chemotherapy or radiotherapy. Sources: Knaul et al. 2017 (3); Krakauer et al. 2018 (22). Integrating palliative care and symptom relief into paediatrics 28 Balance: maximizing access to opioids for medical use/minimizing risk of diversion and illicit use Although ensuring access to morphine for anyone in need is imperative, it also is necessary to take reasonable precautions to prevent diversion and non-medical use. Model guidelines for this purpose are available (47). All hospitals, health centres and pharmacies should store morphine and other controlled medicines in a sturdy, locked and well-anchored box or cupboard at all times, keep records of the remaining supply and record the amount dispensed for a patient and the amount wasted or returned by a patient’s family. All personnel at these sites who handle controlled medicines such as opioids should be trained in safe storage and recordkeeping and in local regulations on controlled medicines. Doctors should be trained to assess for and minimize risk of opioid dependence and opioid diversion for non-medical uses. In keeping with the principle of balancing maximum accessibility of opioids for medical uses with minimum risk of opioid diversion, additional precautions might be necessary in areas with high rates of crime or violence. For example, it might not be possible to make morphine safely accessible at the community level in areas with high crime rates. In these places, accessibility must be ensured at higher levels in ways that do not unduly increase the travel burden for patients’ families. Where home or clinic supplies of morphine are frequently stolen, or patients and their families are put at risk by carrying or storing morphine, patients needing morphine might require admission to a hospital. Non-opioid medicines Among the other essential palliative medicines are oral and injectable haloperidol and oral fluoxetine or another selective serotonin reuptake inhibitor (SSRI). Although these medicines are considered psychiatric or psychotropic medicines, they have multiple essential uses in palliative care and are safe and easy to prescribe. For example, haloperidol is the first-line medicine in many cases for relief of nausea, vomiting, agitation, delirium and anxiety. An SSRI, such as fluoxetine, is the first-line pharmacotherapy for depressed mood or persistent anxiety in children older than eight years. Any doctor should be prepared and permitted to prescribe these medicines – not solely psychiatrists or neurologists. Patients with more severe psychiatric illnesses, such as psychotic or bipolar disorders, should be referred for specialist psychiatric care whenever possible. Petroleum jelly is essential for dressing non-healable wounds. Wet-to-dry dressings typically cause pain or bleeding when changed and can be avoided by applying petroleum jelly to dressings. Metronidazole powder, made by crushing metronidazole pills, is essential to reduce or eliminate the odor of any wound infected with anaerobic bacteria. The powder can be sprinkled on the wound or mixed with petroleum jelly or hydrogel dressings. Equipment Equipment in the EP Ped meets the following criteria. It is: n necessary for the relief of at least one type of physical or psychological suffering; n inexpensive, and n simple to use with basic training. The equipment includes nasogastric tubes (for vomiting refractory to medicines and for administration of medicines or fluids); urinary catheters (to manage bladder dysfunction or outlet obstruction); foam, water or air pressure-reducing mattresses (to prevent and relieve pressure ulcers and pain); locked safe-boxes for opioids (to be secured to a wall or immovable object); flashlights with rechargeable batteries (when no adequate light source is available for nocturnal home care); and baby and adult diapers or cotton and plastic bags to make diapers (to reduce risk of skin ulceration and infection and caregiver risk and burden). In countries where plastic bags are prohibited as part of laudable environmental protection initiatives, 29 A WHO guide for planners, implementers and managers specialized medical use should be permitted. The EP Ped does not include materials needed for palliative care that should be standard equipment for any health centre or hospital such as gauze and tape for dressing wounds, nonsterile examination gloves, syringes and angiocatheters. Human resources and training The necessary human resources depend primarily on the level and type of the health service delivery site and on the competency in PPC of staff members rather than their professional designations. Any medical doctor, clinical officer or assistant doctor trained in basic palliative care using a curriculum such as that included in this document should be capable of preventing or relieving most pain and other physical suffering (Annex 5). They should be able to competently prescribe opioids such as morphine to treat pain for inpatients and outpatients. They also should be able to diagnose and provide pharmacotherapy as needed for uncomplicated anxiety disorders, depression or delirium. Not only doctors, nurses, psychologists and social workers, but also CHWs can be trained to provide simple, culturally appropriate psychotherapy for depression and bereavement support (48–51). Nurse-anaesthetists trained in basic palliative care and nurse practitioners with advanced palliative care training also may be able to provide these services in some settings. Nurses at CHCs can have a crucial role in supervising CHWs who provide palliative care, in providing palliative care that does not entail prescribing medicines and in triaging patients who may require attention from a doctor. Midwives can have a crucial role in providing palliative care for critically ill neonates and emotional support for the parents. Their ability to prescribe medicines depends on their level of training and on local licensing laws. However, they can be trained to recognize moderate or severe distress in neonates and to transport patients in need of palliative care to the nearest health centre or other facility capable of providing it. Clinicians trained in basic PPC occasionally may encounter physical or psychological suffering for which they feel incapable of providing adequate treatment, and referral for specialized PPC may not be possible in some settings. Examples may include pain refractory to high-dose morphine, depression refractory to maximum dose SSRI or psychotic disorders. However, if referral for appropriate specialist care is not possible, then a clinician with palliative care training should use whatever resources are available, including a palliative care hotline or other type of telemedicine, to provide the best possible care under the circumstances rather than refuse to treat. CHWs can have a crucial role in palliative care and symptom control by visiting patients and families frequently at home and by helping them to navigate the local health care system. With as little as three to six hours of training in palliative care, existing CHWs not only can provide important emotional support, but also recognize uncontrolled symptoms, identify unfulfilled basic needs for food, shelter or clothing or improper use of medications, and report their findings to a nurse-supervisor at a health centre (Annex 5). In this way, they can accompany patients in need of palliative care and their families and help to assure their comfort by serving as the eyes and ears of their clinicians. Based on reports by CHWs, it may be possible to arrange an appropriate response to an uncontrolled symptom such as a change in prescription or a home visit by a nurse that does not require the patient to return to the hospital or health centre. Visits by CHWs also can help to reduce the often heavy emotional, physical and financial burden of family caregivers. Capable family caregivers should be trained, equipped and encouraged by clinicians to provide basic nursing care such as wound and mouth care and medicine administration. But care should be taken to assess for unmet social needs of family caregivers who typically are women, often also have work and other child-care responsibilities, and often live in poverty. Clinicians should routinely ask patients with serious or life-limiting health problems or their families if they desire spiritual counselling. Every effort should be made to facilitate access to spiritual counselling by local volunteers that is appropriate to the beliefs and needs of the patient and family. Integrating palliative care and symptom relief into paediatrics 30 Social support Social support for patients and family caregivers living in extreme poverty is needed to ensure that their most basic needs are met such as food, housing and transport to medical care, and to promote dignity. This support should include, as appropriate, basic food packages, cash payments for housing or school fees, transportation vouchers for visits to clinics or hospitals for the patient and a caregiver, and in-kind support such as blankets, sleeping mats, shoes, soap, toothbrushes and toothpaste. These social supports help to ensure that patients can access and benefit from medical care and should be accessible by any patient, not only those in need of palliative care or symptom control. One additional social support that should be accessible for families living in extreme poverty is locally adequate funeral costs. Culturally appropriate burial can be a major financial burden for families, and inability to provide a funeral can become a chronic emotional burden. Augmenting the EP Ped The EP Ped includes only the minimum set of basic medicines, equipment, social supports and human resources that should be accessible by all patients and families in need. It should not be considered sufficient to meet all palliative care or symptom relief needs. Depending on the budget of humanitarian response organizations and the type of health emergency or crisis, the EP Ped may be augmented in various ways. Medicines and other treatments: n paediatric (liquid) formulations of paracetamol, ibuprofen, morphine and diazepam; n topical lidocaine or other local anaesthetic ointment: for preventing pain from procedures; n fentanyl, injectable: for preventing pain from brief procedures or dressing changes and for intravenous analgesia in patients with renal failure; n fentanyl transdermal patches: for patients with moderate or severe cancer pain or pain near the end of life who are unable to take oral medicines or who have renal failure; n slow-acting oral morphine: for patients with moderate or severe cancer pain or pain near the end of life who can take oral medicines; n midazolam, injectable: for moderate sedation prior to painful procedures and for palliative sedation for intractable distress of a dying patient; n hydrogel, topical: for dressing healable wounds; and n access to palliative cancer treatments (radiotherapy, chemotherapy): for patients with incurable cancers. Equipment: n wheelchairs and canes: to improve mobility and reduce burden for family caregivers. Human resources: n palliative care specialist physician: for patients with particularly complex symptom control problems; n child life specialist: to help children cope with illness, disability or loss of family members; and n physical therapist: for injured patients and patients with disabilities. 31 A WHO guide for planners, implementers and managers Interventions for specific patient populations Dying patients In some cases, it is difficult to discern when a child is dying. For patients who may still benefit from disease- modifying or life-sustaining treatment, every effort should be made to obtain this treatment in combination with palliative care. When life-sustaining treatment is deemed more harmful than beneficial for a patient, or when it is no longer desired by the patient and family, it is essential that the patient not be abandoned but rather receive comfort-oriented treatment to prevent and relieve suffering and maximize quality of life. Failure to provide this service is medically and ethically indefensible. The child should be placed in as quiet and private a location as possible and provision made for the family to be present. The prognostic understanding of the patient or family should be gently explored and corrected as needed and as culturally appropriate. Bad news should be conveyed in a manner appropriate for patient’s developmental stage and for the patient’s and family’s culture and history. It should be made clear that there is never an intention to hasten death but that every effort can be made to ensure comfort at all times. Intensive efforts must be made to relieve pain and other symptoms. Comfort-oriented care sometimes requires an intensity and ingenuity that rivals critical care. In addition, patients and family members should have access to psychological first aid, defined by WHO as a “humane, supportive response to a fellow human being who is suffering and who may need support. It entails basic, non-intrusive pragmatic care with a focus on listening but not forcing talk, assessing needs and concerns, ensuring that basic needs are met, encouraging social support from significant others and protecting from further harm” (52). Any doctor should be prepared and permitted to provide non-specialized psychological care that includes psychological first aid and prescription of psychotropic medicines for priority, uncomplicated mental health conditions. Comprehensive WHO guidelines on training non-specialized providers (e.g. doctors, nurses) in the assessment, management and referral of priority mental health conditions are available and should be included in palliative care training curricula (Annex 5) (53). For bereaved adults and children who do not have a mental disorder, it is recommended to follow general principles of care such as communication, mobilizing and providing social support and attention to overall well-being, to offer psychological first aid and encourage and facilitate participation in culturally appropriate mourning practices (52,53). Bereavement support groups led by adequately trained personnel may be helpful (54). Some interventions can be provided safely and effectively by CHWs with basic training (51). Volunteer spiritual supporters should be sought to provide culturally appropriate spiritual support if requested by the patient or family. Protein energy malnutrition Efforts to rescue severely malnourished children should be combined with palliative care to maximize their comfort and to provide psychosocial support for the family. Treatment of adverse effects of re-feeding, such as vomiting and diarrhoea, may not only provide comfort, but also improve survival. The pain or dyspnea of dying children should be relieved and their parents emotionally supported. Neonates Neonates and babies have the highest death rate in the paediatric population. All preverbal children are vulnerable because of their inability to communicate their suffering. However, critically ill neonates are particularly vulnerable because, in many places, neonatal intensive care units offer only life-sustaining treatment and no palliative care. The two are not mutually exclusive: critical care and palliative care can and should be integrated to maximize the comfort of patients who may survive, and that of their parents. In HICs, palliative care is recommended for neonates born at extremely low birth weight (less than 0.5 Integrating palliative care and symptom relief into paediatrics 32 kilograms) and those born before 23 weeks of gestation. In settings where state-of-the-art neonatal intensive care is not accessible, babies born after longer gestation or at higher birth weight may not survive and should receive palliative care. In any setting, palliative care: n should be provided for children born with a life-limiting abnormality or malformation; n should be initiated immediately for family support when a life-limiting abnormality or malformation is discovered during pregnancy or at birth and in case of a stillbirth (psychological, social and spiritual support); n should be integrated with intensive illness-modifying or life-sustaining treatments for critically ill neonates; n should be the only type of care when intensive illness-modifying or life-sustaining treatments will be more burdensome than beneficial and therefore will be withheld or withdrawn; n should assist with decision-making about benefits and burdens of intensive illness-modifying or life- sustaining treatments for critically ill neonates; and n should make bereavement support accessible as needed after a stillbirth or the death of any neonate or child. When a life-limiting fetal anomaly is diagnosed during pregnancy, or when a stillbirth occurs, a midwife or traditional birth attendant can play an important role in providing palliative care. They can provide emotional support and advise the parents on: n spending time with their dying baby, or holding a stillborn baby; n making photographs or handprints and footprints that can become cherished memories and assist the bereavement process; and n organizing baptisms, wakes or other rituals. Obstetrical, neonatal and palliative care policies and procedures should guide the palliative care roles of midwives and traditional birth attendants. They should receive basic training in PPC and be welcomed as members of palliative care teams. 33 A WHO guide for planners, implementers and managers

35 A WHO guide for planners, implementers and managers Implementing PPC and symptom relief Part 1. Integrating PPC into health care systems and structures WHO recommends a public health strategy for integrating palliative care into health care systems in a cost-effective manner to reach all in need (4,55). Inclusion of palliative care in national health care policies is crucial. Without policies that mandate palliative care services, it is unlikely that PPC will become widely accessible or sustainable. In general, the first steps towards integration of PPC into health care systems should be: n a national palliative care policy that requires access for all – specifically including children – to palliative care and to pain control with opioid pain medicines; n a national palliative care strategic plan to create this access within a certain time period; and n inclusion of PPC in any national policies or strategic plans on cancer, noncommunicable diseases (NCDs), paediatrics, HIV/AIDS, drug-resistant tuberculosis or primary health care (PHC). Once such policies and strategic plans are in place, efforts can focus on ensuring accessibility of all essential medicines and equipment, including oral fast-acting and injectable morphine, and on training (Chapter 6). During these efforts, PPC training programmes should be developed. However, if policies do not precede training, most trainees may be unable to practise PPC and may not be paid for doing so. Training can be initiated at a basic level either for primary care physicians or physicians whose specialties entail caring frequently for children with serious or life-threatening health problems. Physicians who complete basic palliative care training should be empowered to prescribe oral fast-acting and injectable morphine for inpatients and outpatients. As soon as possible after implementing basic palliative care training for physicians, other palliative care training programmes should be established: n intermediate-level training should be implemented for physicians whose specialties entail caring frequently for children with serious or life-threatening health problems; n basic palliative care training for practising nurses; and n integration of basic training in palliative care, including PPC, into undergraduate medical, nursing and pharmacy training. Next, or simultaneous with essential medicine procurement and training, PPC services should be integrated into existing service delivery. This can begin at any level of the health care system. However, it may be easiest to implement PPC where the need is most obvious to most staff members: in cancer centres. Initial services can be an inpatient ward, a consultation service or an outpatient clinic. National policies should require PPC services at all cancer centres and, within a period of time, at all levels of the health care system: n second- and third-level hospitals (provincial, regional and specialty hospitals); n first-level (district) hospitals; n CHCs; and n home care. A basic plan for integrating palliative care in general and PPC in particular into health care systems is described in Table 6. This plan can be used for palliative care policies. In LMICs, serious or life-threatening health conditions typically are diagnosed at second- and third-level hospitals, and treatment usually is Integrating palliative care and symptom relief into paediatrics 36 initiated there. Thus, palliative care services should be accessible in these institutions to provide initial symptom control, to maintain symptom control during treatment and to prepare a plan to keep the patient comfortable after discharge to a lower-level facility or to home. When treatment at a second- and third- level hospital is not needed or not appropriate and when the patient’s symptoms are not complex or refractory to treatment, palliative care can be initiated and home care plans made at a first-level hospital. In most cases, home care services based at the patient’s local CHC should be able to provide follow-up care after the patient’s symptoms have been controlled and a palliative care plan made at higher level. In rare cases of severe refractory suffering, a patient may require end-of-life inpatient care at a first-, second- or third-level hospital. Examples include non-viable premature neonates with respiratory failure or patients with severe, refractory pain due to end-stage cancer. In cases where the patient’s symptoms can be well-controlled but where the family lacks the ability to care adequately for the patient at home, the CHC should offer inpatient end-of-life care to a maximum of one or two patients at a time. In most cases, however, the patient should be able to remain at home with follow-up surveillance by a CHW and follow-up care as needed in the home, at the CHC or at the palliative care outpatient clinic of the district (first-level) hospital. It is crucial the national health care policies specify the types of palliative care services that must be implemented at each level of health care systems and also specify the training that each type of palliative care provider should have at each level. Table 6. Palliative care interventions, delivery platforms and providers Intervention Delivery platform Mobile outreach/ home care CHC First-level (district) hospitals Second- and third- level (provincial, regional, specialty) hospitals Ongoing care for patients with well- controlled symptoms related to serious or life-limiting health problems n CHWs provide surveillance and emotional support as often as daily n Visits as needed by nurse, doctor or social worker from the CHC with basic training in palliative care n Nurse and possibly also a doctor or social worker with basic training in palliative care provide outpatient care and possibly home visits as needed n Inpatient hospice care in some cases if the family is unable to provide adequate care at home n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient hospice care if the family is unable to provide adequate care at home and if no inpatient care is available at CHCs n Outpatient palliative care clinic 37 A WHO guide for planners, implementers and managers Initial control of mod- erate or severe symp- toms related to serious, complex or life-limiting health problems Control of refractory suffering n Small palliative care team including one or two part- time doctors with basic or intermediate training in palliative care n Inpatient palliative care n Outpatient palliative care clinic n Palliative care team consisting of full- or part-time doctors with intermediate training in palliative care n Ideally, a palliative care specialist physician should lead the team at major cancer centres and general hospitals n Inpatient palliative care ward n Outpatient palliative care clinic Source: Adapted from Krakauer et al. 2018 (22). The recommended transfer patterns for patients in need of palliative care are outlined in Figure 5. In general, patients whose health conditions already have been diagnosed and who need palliative care are referred only to the next higher or lower level as appropriate. However, there are several exceptions to this rule: n Patients at second- or third-level hospitals whose symptoms have been well controlled and who wish to return home for palliative home care should be transferred directly to home and the case information transmitted to the local CHC in charge of home care. n Patients who are at home or who are seen at a CHC and found to have severe, complex or refractory suffering that cannot be adequately relieved in the community may be transferred directly to a first- level hospital. However, if the patient already is known at a second- or third-level hospital, then the patient may be transferred directly to that hospital. In all instances, case information should be transmitted to the receiving hospital. n In settings where an inpatient hospice exists, patients may be transferred there from any level of the health care system, and case information should be transmitted. n In settings where a sub-acute care facility or nursing home is available, patients with uncomplicated health problems and well-controlled symptoms may be transferred there from any level of the health care system, and case information should be transmitted. It is crucial that palliative care providers at each level of the health care system be able to communicate easily and reliably with providers at any other level at all times. For example: n a CHW must be able to reach a nurse or supervisor at the CHC quickly at any time to report a problem with a patient; n a provider at a CHC must be able to reach a supervisor at the district level quickly at any time for advice on a complicated case; and Integrating palliative care and symptom relief into paediatrics 38 n a provider at a third-level hospital must be able to reach the appropriate person at a CHC to provide information about a patient who will be sent home for home palliative care. Typically, this communication will be by mobile phone. Texting usually is inadequate to convey important clinical information. For LMICs with inadequate established referral systems, a standardized palliative care handover form that records the patient’s clinical and social history, including disease-modifying and palliative treatments, key family members and caregivers, and any agreed-upon goals of care, is very conducive to optimum care. Budgets for palliative care should include funding for telecommunications and printing of such forms as well as for transportation for CHC staff members to visit patients at home as needed. It also is crucial that palliative care training of all levels be integrated into the health care education system in each country or region for all types of palliative care providers, including physicians, clinical officers, assistant doctors, nurse practitioners, midwives, nurses, pharmacists and social workers. Typically, this training should be offered by a university that has a medical school, nursing school, pharmacy school and social worker school, but sometimes the training may be offered in separate schools for different professions. Creation of a department of palliative care or palliative care training centres at universities are encouraged (Figure 5). Figure 5. Referral patterns for patients in need of palliative care CHC, community health centre; CHW, community health worker; CO, clinical officer; IDT, interdisciplinary team; PC, palliative care; PPC, paediatric palliative care a Temporary inpatient care that provides a respite from caregiving for the family. University-based palliative care department or centre Training: all levels for all members of IDTs except CHWs Research: needs assessment, outcomes research, quality assurance Technical assistance for policy writing, clinical service implementation Advocacy First-level (district) hospital Small palliative care IDT: n generalist physician(s) n nurses n social worker(s) Small inpatient unit, outpatient clinic CHC PPC provided by: n generalist physician, CO or assistant doctor with basic PPC training or nurse with advanced PC training that includes PPC n nurses with basic PC training n social worker Outpatient clinic, inpatient hospice care in special cases Second-level (provincial)/third-level (regional) hospital Palliative care IDT: n palliative care specialist physician(s) (physicians with intermediate-level palliative care training until specialists available) n nurses n social workers and/or psychologists n spiritual supporters Inpatient ward, inpatient consultation, outpatient clinic Home care CHW or volunteer supervised by nurse at CHC Nurse based at CHC as needed Sometimes doctor, CO or assistant doctor based at CHC, as needed Inpatient hospice (in some countries) IDT: n part- or full-time palliative care specialist physician (physicians with intermediate level palliative care training until specialists available) n nurses with at least basic PC training n social worker and/or psychologist Terminal inpatient care when home care not desirable or possible; also respite carea acute care facility/nursing home (in some countries) n Nurses with at least basic PC training n Supervision by generalist or PC specialist physician n Simple inpatient care for patients with minimal or no symptoms when home care not desirable or possible n Respite carea 39 A WHO guide for planners, implementers and managers Part 2. Models of palliative care delivery Within the general plan for integrating palliative care into health care systems described in Part 1 of this chapter, various models will be necessary to fit the structure of the health care system in a given country and the strategic plans of the country’s MOH, and to assure that all patients in need of palliative care will have access to it (Table 7). For example: n in some settings, a home care model that entails mobile palliative care teams based at district or community levels and frequent telephone check-ins with the patient or family by telephone may supplant a model that relies on CHWs; and n in some hospitals, a strong and active palliative care consultation service that works closely with link nurses in each ward with basic palliative care training may obviate the need for an inpatient palliative care ward (Textbox 2). Table 7. Models of palliative care delivery Location Services Home care By staff members of a CHC with or without CHWs: n Family members, friends or community volunteers provide most care with support from CHWs or volunteers who visit frequently and report to a nurse at the CHC n A nurse (and sometimes also a doctor) from the CHC visits as needed and/or at regular intervals n A visiting nurse may be able to deliver medicines in some settings n A nurse with advanced training or a doctor may be able to prescribe an opioid dur- ing a home visit By a mobile team: n A team typically consisting at least of a doctor and nurse visits at regular intervals and when called by the patient or family. n In some settings, team members may be able to prescribe and/or deliver medicines including opioids Outpatient clinic Palliative care clinics may be based at CHCs or at hospitals of any level The clinic at a CHC would handle only simple palliative care problems, while the most complex problems should be addressed at the clinic of a third-level hospital where the most highly trained palliative care clinicians should work Clinics at all hospitals should have clinicians able to prescribe morphine for outpatients, and all hospitals pharmacies should stock oral fast-acting and injectable morphine Inpatient care – hospital Consultation model: Physicians trained in palliative care provide advice to the patient’s responsible physician who then decides how to implement the advice Inpatient unit model: A room or ward devoted entirely to palliative care and staffed only by physicians and nurses trained in palliative care Inpatient care – hospice A house, hospital or hospital ward devoted entirely to end-of-life care and staffed by an IDT that includes physicians and nurses trained in palliative care Day care A location staffed by a nurse and CHWs or volunteers where patients receiving palliative care who are able to walk or travel by wheelchair can spend the day under supervision to enable family members to work or have respite time Integrating palliative care and symptom relief into paediatrics 40 Box 2. Inpatient palliative care services at Mulago National Referral Hospital, Uganda At Mulago National Referral Hospital in Uganda, a palliative care link nurse programme was established. Nurses throughout the hospital, in both adult and paediatric units, were trained to provide basic palliative care and to refer patients with complex needs to the hospital’s specialist palliative care team. As a result, the number of patients receiving palliative care increased dramatically. The majority (86%) required only basic palliative care from a link nurse, and 14% were referred for specialist palliative care. This programme demonstrated integration of palliative care into generalist services, ensured that generalist palliative care provision was accessible to all in need throughout the hospital and reached a far greater number of patients than could be seen by the specialist team alone. It also ensured that those receiving specialist care were those with the greatest complexity of need (56). Part 3. Training in palliative care and symptom relief The 2014 World Health Assembly resolution WHA67.19 on palliative care urges each Member State to integrate into its health care education system three levels of palliative care training (Annex 4) (4): 1. Basic training and continuing education in palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers. 2. Intermediate training in palliative care should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine. 3. Specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs. Basic training in palliative care of approximately 35 hours should be included in all curricula of medical schools and nursing schools (Annex 5). The training may be offered either as a discrete course in the last year of medical or nursing school or integrated into other courses throughout the curriculum. For example, training on pain can be integrated into a course on the nervous system, and training on patient–clinician communication can be integrated into courses on psychiatry or medical ethics. The training should include both classroom and bedside teaching. Basic palliative care training also should be provided for all primary care clinicians unless their responsibilities preclude contact with patients in need of palliative care. Intermediate-level palliative care training, lasting approximately 70 hours, should be integrated into specialist training curricula in all fields that entail treating patients with serious or life-threatening illnesses. In addition to paediatrics, oncology, infectious diseases, geriatrics and internal medicine, these include haematology, critical care, family medicine, tuberculosis, hepatology, neurology, cardiology, pulmonology, nephrology, neonatology, traumatology, anaesthesiology and surgery. The training should consist of both classroom teaching and hands-on, supervised clinical experiences. Specialists in these fields, who work mainly in hospitals, should be prepared to provide direct palliative care to their patients. In addition, the physicians who work full- or part-time on hospital-based palliative care teams should have at least intermediate-level palliative care training. 41 A WHO guide for planners, implementers and managers As soon as possible, palliative care IDTs at second- and third-level hospitals should be led by palliative care specialist physicians. Thus, LMICs should work to develop palliative care specialist training programmes that can supply palliative care specialist physicians for their country or region. Specialist training programmes should last at least one year but will vary according to each country’s postgraduate medical training regulations. Although it is best if clinicians providing PPC are fully trained in paediatrics and provide care only for children, generalist clinicians such as general practitioners, family doctors and primary care nurses can and should be trained and competent to provide PPC whenever paediatric specialists are not needed or not available. Basic and intermediate-level palliative care training aims not at specialization but rather at essential competencies (57). General domains of competency in palliative care include: n principles of palliative care n communication n optimizing comfort and quality of life n care planning and collaborative practice n loss, grief and bereavement n professional and ethical practice in the context of palliative care n professional resilience. Essential competencies in PPC are described in Table 8. Generalists providing PPC should be able to obtain advice by telephone at any time from a paediatrician with intermediate-level palliative care training or a palliative care specialist physician. Such task shifting and task sharing is especially crucial in rural areas. Table 8. Essential competencies in PPC Key competency Key components Paediatric symptom assessment (pain and non-pain) Use age-specific methods to assess symptoms such as pain, nausea, dyspnea, anxiety, depression, etc. Appropriate medication selection, dosing and administration Implement age and weight-based dosing with attentiveness to paediatric metabolism and excretion Use non-opioid, opioid and adjuvant therapies aligned with WHO principles; include appropriate use of scheduled along with as-needed doses for breakthrough pain Create/disseminate pharmacologic and non-pharmacologic treatment plan to include emergency plan; place emergency medications in the home with training for caregivers Refer to higher level for more specialized palliative care when needed Psychosocial assessment and intervention (patient and family) Identify and address the child’s and family’s illness understanding, fears and concerns, including those of siblings Assure child and family they will not be abandoned Identify child’s and family’s coping and communication styles and adjust care plan accordingly Communicate with child in a developmentally appropriate fashion Gently explore previous experiences with death, dying, other traumatic life events or special issues such as substance abuse or suicidal ideation, and adjust care plan to minimize further psychosocial stress Use play therapy such as music, storybooks, art for expression, reflection and distraction. Recognize impact of child’s illness on larger community (faith groups, school, etc.) – offer to family to help communicate with school or community agencies Assess family’s resources for bereavement support; make bereavement follow-up plan as needed Integrating palliative care and symptom relief into paediatrics 42 Disease trajectory recognition Consider how manifestations and trajectory of disease may differ from adults and between children of different ages Provide developmentally appropriate anticipatory guidance regarding physical changes and symptom burden to decrease child’s fear of the unknown Developmentally informed and context- appropriate communication Explore child and family emotions and behaviours Use play, art or storytelling to explore child’s experience Truth-tell in a manner appropriate to patient’s development, clinical situation and context Recognize that children grieve, worry about their family members and fear burdening their family members Decision-making and advance care planning Include the patient in decision-making as appropriate for the patient’s values, culture and developmental stage Adjust care plan according to culture, coping and communication styles Honour relevant ethical principles, cultural norms and legal guidelines as appropriate Identify key decision-makers and provide information as necessary Spiritual concerns as part of care Consider referral to an appropriate spiritual care provider Offer to assist in explaining child’s illness to spiritual provider, with permission Allow time for reflection on life meaning and purpose Goals of care Determine whether the goal of care is cure, maintenance of current level of health, comfort, or mixed When the goals of care preclude intensive life-sustaining treatment, write orders to protect the patient from cardiopulmonary resuscitation or other interventions inconsistent with the goal of care Develop care plan with the patient and/or family that integrates awareness of patient symptoms and disease trajectory with desires and goals of patient and family Provide guidance on best location of care (home, hospital, hospice) to achieve agreed- upon goals of care Support tangible needs Offer and arrange as much assistance as may be needed and as possible such as: n medical equipment (wheelchair, cane, suction, commode, hospital bed for the home) n social supports (food packages, cash transfers for rent or school tuition, transportation vouchers, in-kind support) n community services (visits from CHWs, nurses, mobile palliative care teams) Source: Himelstein et al. 2004 (58). 43 A WHO guide for planners, implementers and managers Various curricula in PPC are available and may be adapted for use in any country (Table 9). Care should be taken when adapting a curriculum from an HIC to ensure it is as relevant as possible to the local clinical and cultural situation. For example, it should discuss only medicines in the EP Ped and those that are accessible or may soon become accessible in the country. Table 9. Paediatric palliative care (PPC) curricula Education in Palliative and End-of-life Care (EPEC – Pediatrics) Developed for the United States and HICs. The curriculum consists of 19 online distance-learning modules and 5 in-person face-to-face conference sessions. http://bioethics.northwestern.edu/programs/epec/curricula/pediatrics.html International Children’s Palliative Care Network (ICPCN) e-learning programme Developed in South Africa, intended for both professionals and lay people who participate in palliative care for children. A clinical site where children’s palliative care is being practised is required so that the learner can undertake the clinical assessment which forms part of the course. http://www.icpcn.org/icpcns-elearning-programme/ End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) Developed for the United States and HICs. Adapted from the ELNEC-Core curriculum to meet the needs of children and their families. The 10 modules include perinatal and neonatal content. http://www.aacnnursing.org/ELNEC/About Harvard Medical School Center for Palliative Care, Global Program, Pediatric Palliative Care Curriculum for Low- resource Settings Developed for Viet Nam and LMICs. Can be downloaded and adapted to local clinical and cultural situations. http://www.massgeneral.org/palliativecare/education/international_program.aspx Given that most care for children with serious or life-threatening health conditions is provided by family members and at home, basic, patient-specific training should be provided to family caregivers. The training should be provided by a nurse from the local CHC or from a mobile palliative care team. It may include medicine administration, wound care, safe feeding, infection control, avoiding burn-out, and when and how to request help. Materials for training family caregivers also are available (Table 10). Table 10. Training materials for family caregivers Institute of Palliative Medicine (Calicut, Kerala, India) Palliative care: a workbook for carers Developed for India and other LMICs. http://www.instituteofpalliativemedicine.org/downloads/Palliative%20Care%20Workbook%20for%20Car- ers.pdf Home-based Palliative Care Training and Support Package for Young Children in Southern Africa Developed in South Africa, a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in Southern Africa. Contact: snaicker@hsrc.ac.za

45 A WHO guide for planners, implementers and managers

47 A WHO guide for planners, implementers and managers Ensuring access to essential medicines Strong opioids such as morphine are essential for the treatment of pain caused by cancer, HIV/AIDS and other serious illnesses and due to traumatic injuries, burns and surgery. Yet despite being included on the WHO Model List of Essential Medicines for both adults and children, morphine has not been accessible at all times in adequate amounts, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford (45,59). Of the world’s population, 75% lacks access to morphine or another strong opioid when clinically indicated to treat pain. WHO estimates that 5.5 million terminal cancer patients and 1 million end-stage HIV/AIDS patients worldwide suffer each year without adequate treatment for moderate to severe pain. International drug regulatory bodies, such as the International Narcotics Control Board (INCB), have acknowledged that their emphasis historically has been on restricting opioid misuse and abuse, rather than on ensuring the medical availability of opioids (60). Yet the United Nation’s Single Convention on Narcotic Drugs, which virtually all nations have signed, states that nations must both minimize the risk of abuse and diversion of opioids and ensure their availability for medical and scientific purposes (61). This dual obligation of governments is called the principle of balance, a principle that has been affirmed by WHO (62,63), the United Nations Commission on Narcotic Drugs and the United Nations General Assembly. Governments should ensure that all physicians involved in patient care are both legally permitted and institutionally authorized to prescribe and administer strong opioids such as morphine according to the medical needs of patients. Governments also should ensure that a sufficient supply of morphine is available to meet all medical needs. While misuse of controlled substances poses a risk to society, the system of control is not intended to be a barrier to their availability for medical and scientific purposes, nor interfere in their legitimate medical use for patient care. To fulfil the requirements of the Single Convention and of acceptable medical practice, every effort should be made to identify the barriers to opioid availability within each country. Typically, these barriers include: n overly restrictive regulations on opioid prescribing and dispensing; n inadequate education of doctors, nurses and pharmacists in pain control and the appropriate use of opioids; and n lack of understanding of the appropriate use of opioids among drug regulators who often focused only on the reducing the risk of misuse and abuse and not at all on making these medicines available. Examples of overly restrictive regulations include (64): n a requirement that physicians purchase special opioid prescription pads; n a requirement that all opioid prescriptions for outpatients be signed not only by the prescribing physician, but also by a supervisor or an anaesthesiologist; n permitting only specifically designated physicians to prescribe opioids; n permitting only specialist physicians to prescribe opioids and not general practitioners or family doctors; n restricting opioids to inpatients or to patients receiving hospice services; n limits on opioid dose; n limits on opioid prescriptions and dispensing to less than a 30-day supply when risk of diversion is minimal; and n restricting family practitioners and general practitioners from prescribing them. Integrating palliative care and symptom relief into paediatrics 48 All health systems establish a system to monitor the flow of opioids from import or manufacture to use by the patient (65). In the inpatient setting, there should be verification of opioids taken by the patient. In the outpatient setting, there should be verification of opioids handed over by a pharmacist or clinician to the patient or to a family member on behalf of the patient, minus any amount returned to the pharmacy or clinician by the patient or family. Such a system should not interfere with access to opioids for medical uses but rather ensure continued availability of these medicines. So-called stock-outs and other supply chain failures result in patients suffering both from opioid withdrawal symptoms and from pain and can increase the risk of illicit opioid use and suicide too (66). The Single Convention requires all countries to report annual opioid consumption to the INCB. Together with other health statistics, this reporting is crucial for estimating a country’s expected opioid need the following year and for the INCB to officially allocate the amount needed (67). The INCB has defined various methods for countries to calculate their expected need. Increases in allocation from one year to the next can be requested based on, for example, expected improvements in health care services or on revised estimates of disease prevalence. The INCB uses the pooled estimates from all countries to ensure that the appropriate quantity of opioids is available globally. 49 A WHO guide for planners, implementers and managers

51 A WHO guide for planners, implementers and managers Integration of palliative care and symptom relief can strengthen health care systems and promote UHC Improved quality of life Palliative care has been associated with improved patient outcomes, with financial risk protection for patients and their families and with reduced costs for health care systems (3). Improved patient outcomes include better control of pain and other symptoms, decreased spiritual distress, enhanced quality of life, improved patient and family satisfaction, and reduced number of physician office visits, emergency department visits, hospitalizations and days in the intensive care unit at the end of life (68,69). These improvements tend to be greatest when palliative care is initiated early in the course of illness (69). In some cases, provision of palliative care has been associated with prolonged survival (70). Less data are available on outcomes of palliative care for children than for adults. However, PPC has been associated with improvements in health- related quality of life, emotional well-being and family satisfaction (40,43,71). Thus, evidence indicates that integration of palliative care enables health care systems to better achieve their mission of improving the well-being of those they serve. Improved treatment outcomes Palliative care should not be considered only as an alternative to curative or life-sustaining treatments of dubious benefit, but also as an essential complement to curative or disease-modifying treatments for serious or life-threatening health conditions. Adherence to curative or disease-modifying treatments can be difficult when symptoms of the disease or adverse effects of the treatment are not prevented or adequately relieved. Thus, palliative care may improve adherence particularly to toxic treatments such as those for drug-resistant tuberculosis and many cancers (72). Among the global poor, poverty and other social problems also commonly make adherence difficult. In LMICs, treatment abandonment – the failure to start or complete medically indicated curative therapy – is a major cause of therapeutic failure in potentially curable childhood cancers (73). Specific reasons for treatment abandonment have been found to include financial difficulties as well as distress caused by side-effects and by poor relationships with health care workers (74). PPC could ameliorate all of these problems. Social supports such as those described in Chapter 4 also have been shown to reduce treatment abandonment and improve a patient’s ability to adhere to treatment (74–76). Thus, palliative care not only can improve patients’ comfort, but also strengthen the ability of health care systems to effectively treat their serious and life-threatening conditions. Lower costs for health care systems and financial risk protection for families In many countries, patients and their families bear most of the burden of caring for patients with serious or life-threatening health problems. In addition to the often extreme emotional stress, families of medically ill children often experience profound social and economic burdens, including isolation, loss of income and catastrophic health care spending. Family caregivers, who usually are women or children, may be unable to work, go to school or participate in social activities because of the demands of caregiving. When patients go to the hospital in low-income settings, a family caregiver often must leave income-generating activities, school or caregiving for other children to accompany the patient. This puts patients’ families at risk of financial ruin and caregivers at risk of exhaustion and health problems of their own (22,77,78). Integrating palliative care and symptom relief into paediatrics 52 Multiple studies from HICs indicate that palliative care can reduce costs for patients and families, as well as for health systems (79–83). Palliative care networks that include community-based care and home care, as described in Chapter 4 can enable patients to remain at home and comfortable rather than return to a hospital for symptom relief. They also may reduce demand for expensive disease-modifying treatments of dubious benefit near the end of life by providing a compassionate alternative and supportive counselling, and they can reduce the length of stay for patients already in the hospital by making symptom control accessible in the community. Families thereby are spared the costs of unnecessary admissions to the hospital, including transportation for the patient and caregiver to the hospital, hospital co-payments and lodging costs for the family caregiver. Because the family caregiver can remain at home and may be able to work at least part-time, there also may be less loss of income. Caregivers who are children may also be able to remain in school (84–89). Palliative care integration also can reduce costs for health care systems. As populations age, and as the prevalence of chronic NCDs rises, an increasing percentage of the health care budget is being spent on hospital inpatient care near the end of life that increasingly includes aggressive disease-modifying treatments or life-sustaining treatments of doubtful medical benefit (86,90). Palliative care integrated into health care systems at all levels and including home care can reduce health care costs by decreasing unnecessary or non-beneficial resource utilization (86). Rather than spending the last days, weeks or months of life in hospitals, patients can receive care at home or in the community that is less expensive and yields better outcomes. In addition, overcrowding in second- and third-level hospitals can be reduced. Thus, palliative care can help health care systems produce better results at lower cost (22). An additional benefit for health care systems and for public health can accrue from cost-effective palliative home care. CHWs, nurses from CHCs and mobile palliative care team members who visit patients at home can do more than palliative care. Home visits provide an opportunity for many other primary prevention and screening interventions, including: n teaching about smoking cessation, indoor air quality, diet and exercise; n encouraging prenatal care, childhood vaccinations, cervical cancer screening and HIV prevention and testing; and n tuberculosis and cancer case-finding. Thus, creating or enhancing home care capacity for palliative care also can strengthen capacity for disease prevention and early diagnosis. In addition, the communication links between each level of health care systems that are necessary for palliative care can be used to reduce loss to follow-up. Staff members of hospital-based services, such as cancer chemotherapy or specialist clinics, can inform CHCs of impending appointments, and CHWs can then remind patients and uncover any impediments to the patient’s ability to keep the appointment in time for CHC staff to find a solution. Promotion of UHC In 2015, United Nations General Assembly resolution 70/1 established the Sustainable Development Goals (SDGs) (91). SDG 3 aims to ensure healthy lives and promote well-being for all at all ages, and SDG 3.8 is about achieving UHC, including financial risk protection, access to quality essential health care services and access to safe, effective, quality and affordable essential medicines and vaccines for all. Palliative care exists to attend to, accompany and ensure the well-being of those with serious or life-threatening health problems whose health care needs exceed disease treatment. Thus, palliative care is essential to the achievement of SDG 3 and UHC. WHO specifically mentions palliative care in its definition of UHC: “The UHC means that all individuals and communities receive the health services they need without suffering financial hardship. It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation and palliative care” (92). 53 A WHO guide for planners, implementers and managers

55 A WHO guide for planners, implementers and managers Research and quality improvement in paediatric palliative care To develop high-quality, cost-effective palliative care services for children, research and quality improvement initiatives are much needed (93–95). The 2014 World Health Assembly resolution WHA67.19 on palliative care asserts the importance of evidence-based palliative care (Annex 4) (4). Likewise, WHO has called for research on evidence gaps identified during development of the WHO Guidelines on the pharmacological treatment of persisting pain in children with medical illnesses (96,97). Currently, however, there is a dearth of evidence on PPC, especially from LMICs where the vast majority of patients in need are located. There are a variety of significant barriers to research in palliative care in general, especially in LMICs (29,94,98–100). These include: n difficulty in identifying useful and researchable outcome measures; n lack of research funding; n absence of national and institutional research strategies; n lack of a research infrastructure and culture in LMICs, including adequate and timely research ethics approval processes; and n lack of research skills and overwhelming patient load in LMICs. While all efforts are needed to reduce or eliminate all barriers, this chapter focuses on research priorities for PPC. A wide range of national and global priorities for research in PPC have been proposed, including studies of (95, 101–104): n palliative care needs of children in specific locations (situation analyses); n relative effectiveness of interventions for pain and other symptoms (95); n clinical outcomes such as quality of life; n effectiveness of training on palliative care-related knowledge and attitudes; n existence and degree of implementation of palliative care policy; n optimum models of care; n trust in health care providers; n ethical issues; and n cost and cost-effectiveness of palliative care. Palliative care needs assessment or situation analysis To design palliative care services that provide optimum benefit for a specific population, the most common and most severe types of suffering must be known. When no such data exist on the target population, palliative care situation analyses should assess all categories of suffering: physical; psychological; social; and spiritual. The target population may be small or large. It may be just one community, clinic population or hospital (105–107), or it may be an entire region or country (108,109). The situation analysis may use multiple detailed surveys (109), or it may use only one short survey. Ideally, data on types of suffering should be collected directly from patients rather than from family members or clinicians. However, because very young children are unable to participate in surveys, data must be obtained either from family members Integrating palliative care and symptom relief into paediatrics 56 or using validated tools for assessing symptoms in preverbal or linguistically impaired children (110,111). Older children who are in severe discomfort or near the end of life often are unable to participate in long surveys. Thus, there is a benefit to using very concise surveys that nevertheless address all types of suffering. One example is the Palliative Outcomes Scale that exists in several forms for various populations and has been validated in several languages (112,113). This instrument can yield useful information both for researchers and for clinicians. It is brief enough to be incorporated into routine hospital or clinic forms for recording patient history and physical examination, and these forms, whether electronic or hardcopy, can be used both for palliative care situation analysis and quality assurance assuming appropriate research ethics regulations are followed (105). Design of optimum palliative care services for a population also depends on understanding of common cultural and religious conceptions of illness, treatment and death, and of common attitudes towards health care providers and the health care system (114–119). In addition, children’s attitudes towards illness, treatment and death change along with their physical, emotional, psychological and spiritual development, and all people’s attitudes are influenced by personal experience (120). Thus, research is needed on trends in what children with serious or life-threatening illnesses and their families experience in specific geopolitical, cultural, religious and economic contexts. Attitudes of health care providers at all levels towards palliative care also warrants investigation. For example, irrational fear of prescribing opioids is common and commonly results in poor care and outcomes (121). If such opiophobia is discovered, it can be addressed through education. Optimum PPC treatments There is a need for research to assess the effectiveness of palliative care treatments in general, and the need for such studies in children is even greater. Studies of the safety and relative effectiveness of palliative medicines in children are difficult for many reasons, including the relatively small number of potential research subjects, the inability of children to provide informed consent and the necessary ethical guidelines to protect vulnerable subjects in addition to the barriers to palliative care research cited above. However, WHO has proposed detailed and ranked priorities for research on medical management of persisting pain in children (Table 11). 57 A WHO guide for planners, implementers and managers Table 11. WHO priorities for research on pharmacologic treatment of persisting pain in children with medical illnesses First group of priorities n Assessment of two-step treatment strategy. n Research on alternative strong opioids to morphine (comparative trials of opioids in terms of effectiveness, side-effects and feasibility of use). n Research on intermediate potency opioid analgesics (e.g. tramadol). n Long-term safety data concerning first-step medicines (ibuprofen/paracetamol). Second group of priorities (neuropathic pain) n Antidepressants, specifically tricyclic antidepressants and selective serotonin reuptake inhibitors and newer antidepressants of the class of serotonin and norepinephrine reuptake inhibitors for persisting neuropathic pain in children. Gabapentin for persisting neuropathic pain in children. n Ketamine as an adjuvant to opioids for refractory neuropathic pain in paediatric patients with longterm medical illness. Third group of priorities n Randomized controlled trials (RCTs) on alternative routes to the oral route of opioid administration (including RCTs comparing subcutaneous and intravenous routes). Fourth group of priorities n Update Cochrane reviews on opioid switching including paediatric data, if available. n Randomized controlled trials on opioid switching and research on dose conversion in different age groups. n Randomized controlled trials on short-acting opioids for breakthrough pain in children. Other areas for research and development n Research and psychometric validation of observational behaviour measurement tools for persisting pain settings (neonates, infants, preverbal and cognitively impaired children). n Prospective clinical trials to investigate opioid rotation protocols and their efficacy in preventing side- effects or opioid tolerance and dose escalation. n Development of divisible, dispersible, oral solid-dosage forms of paracetamol and ibuprofen. n Research into appropriate formulations for the extemporaneous preparation of oral liquid morphine. Dissemination of available evidence on the preparation of stable extemporaneous formulations. n Child-appropriate oral solid dosage forms of opioid analgesics. n Research on equianalgesic dosages in conversion of opioid analgesics for different age groups. Source: WHO 2012 (97). Ongoing data collection on PPC integration, accessibility, quality and outcomes The degree of integration of PPC into a health care system, and its accessibility, may be assessed with a few output measures such as those developed by WHO for its periodic survey of NCD country capacity around the world (122). Such a study might explore: n whether government funding is provided for PPC; n whether there is a national policy that includes PPC and whether a national policy on paediatrics includes palliative care; Integrating palliative care and symptom relief into paediatrics 58 n whether such policies are operational, under development or not in effect; n whether oral morphine is available in over 50% of the inpatient and outpatient paediatric care facilities of the public health sector; n whether palliative care is accessible by over 50% of paediatric patients in the public health system; and n whether palliative home care is accessible by over 50% of paediatric patients in the public health system. To periodically assess the quality and outcomes of PPC, the same instruments used for palliative care situation analyses can often be used.Where feasible, however,WHO endorses health technology assessments (HTA) to systematically evaluate the properties, effects and/or impacts of health interventions (Figure 6) (123). HTA covers both the direct, intended consequences of interventions and their indirect, unintended consequences. The approach is used to inform policy and decision-making in health care, especially on how best to allocate limited funds to health interventions. The assessment is conducted by interdisciplinary groups using explicit analytical frameworks, drawing on clinical, epidemiological, health economic and other information and methodologies. It may be applied to interventions, such as including home care in public health insurance coverage, rolling out broad public health programmes such as palliative care, priority setting in health care, identifying health interventions that produce the greatest health gain and offer value for money, and formulating clinical guidelines (Annexes 6 and 7). Figure 6. Health technology assessment: a tool to inform decision-makers in support of UHC Source: WHO 2018 (123). All providers of PPC, whatever the care setting, should be committed to continuous improvement of the quality of their services. Data collected from quality indicators are a primary source of information for improving services. A basic framework for indicators that can be used to assess the key domains of national or regional programmes is described in Table 12. These indicators are adapted from a previous WHO guide for planning managers (7). Fragile states HTA, define Essential services Emergency kits Disaster planning Low-income countries with low coverage HTA, define Primary health care packages Middle-income countries with low coverage HTA, define Guaranteed packages of care Strong health system HTA, define Marginal analysis for additions to packages H ea lt h s ys te m s Continuum of HTA activities 59 A WHO guide for planners, implementers and managers Table 12. Sample indicators for assessing enhanced access to palliative care in PHC Type of indicator Indicator Unit of measure Policy Existence of a current national paediatrics strategy or plan that includes palliative care plan/programme Yes/No Essential Package of Palliative Care for Paediatrics and Symptom Relief (EP Ped) included in universal health coverage Yes/No Laws and regulations in place for safe and effective opioid prescribing in line with international drug conventions at the district level? At the community level? Yes/No Yes/No Education Proportion of medical schools that include paediatric palliative care education in undergraduate curricula Ratio of medical schools with paediatric palliative care education at undergraduate level to total medical schools Proportion of nursing schools that include paediatric palliative care education in undergraduate curricula Ratio of nursing schools with paediatric palliative care education at undergraduate level to total nursing schools Proportion of medical technical schools (for training clinical officers, assistant doctors, nurse practitioners, or feldshers) that include paediatric palliative care education in undergraduate curricula Ratio of medical technical schools with paediatric palliative care education to total medical technical schools Service provision Inclusion of paediatric palliative care on the official list of services provided at the primary care level Yes/No Number of communities that provide paediatric palliative care services Ratio of number of communities that provide palliative care services to number of communities Essential medicines Consumption of strong opioids per cancer death Average milligrams of oral morphine equivalents per number of deaths All WHO essential medicines for palliative care included on the national list of essential medicines Yes/No Proportion of districts where oral morphine is available in primary health care Ratio of districts with oral morphine available in primary care to total districts Outcomes Percentage of paediatric patients who had access to palliative care at the time of death Percentage of deceased patients that had access to paediatric palliative care. 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Geneva: World Health Organization; 2018 (http://www.who.int/health-technology-assessment/about/en/, accessed 5 April 2018). 124. Economist Intelligence Unit. Global access to healthcare: building sustainable health systems. London: The Economist; 2017. 125. Health technology assessment: a tool to inform decision makers in support of UHC. Geneva: World Health Organization; 2018 (http://www.who.int/health-technology-assessment/about/en/, accessed 5 April 2018). 67 A WHO guide for planners, implementers and managers Annexes Annex 1 Convention on the Rights of the Child (excerpts) Adopted and opened for signature, ratification and accession by United Nations General Assembly resolution 44/25 of 20 November 1989 Entry into force 2 September 1990 http://www.ohchr.org/Documents/ProfessionalInterest/crc.pdf PART I Article 3 1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration. 2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures. 3. States Parties shall ensure that the institutions, services and facilities responsible for the care or pro- tection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervi- sion. Article 23 1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community. 2. States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child. 3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. 4. States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning Integrating palliative care and symptom relief into paediatrics 68 methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries. Article 24 1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures: (a) To diminish infant and child mortality; (b) To ensure the provision of necessary medical assistance and health care to all children with emphasis on the development of primary health care; (c) To combat disease and malnutrition, including within the framework of primary health care, through, inter alia, the application of readily available technology and through the provision of adequate nutritious foods and clean drinking-water, taking into consideration the dangers and risks of environmental pollution; (d) To ensure appropriate pre-natal and post-natal health care for mothers; (e) To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breastfeeding, hygiene and environmental sanitation and the prevention of accidents; (f) To develop preventive health care, guidance for parents and family planning education and services. 3. States Parties shall take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children. 4. States Parties undertake to promote and encourage international co-operation with a view to achieving progressively the full realization of the right recognized in the present article. In this regard, particular account shall be taken of the needs of developing countries. Article 27 1. States Parties recognize the right of every child to a standard of living adequate for the child’s physical, mental, spiritual, moral and social development. 2. The parent(s) or others responsible for the child have the primary responsibility to secure, within their abilities and financial capacities, the conditions of living necessary for the child’s development. 3. States Parties, in accordance with national conditions and within their means, shall take appropriate measures to assist parents and others responsible for the child to implement this right and shall in case of need provide material assistance and support programmes, particularly with regard to nutrition, clothing and housing. 4. States Parties shall take all appropriate measures to secure the recovery of maintenance for the child from the parents or other persons having financial responsibility for the child, both within the State Party and from abroad. In particular, where the person having financial responsibility for the child lives in a State different from that of the child, States Parties shall promote the accession to international agreements or the conclusion of such agreements, as well as the making of other appropriate arrangements. 69 A WHO guide for planners, implementers and managers Annex 2 Seventieth World Health Assembly resolution WHA70.12 Cancer prevention and control in the context of an integrated approach (excerpts) http://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R12-en.pdf 31 May 2017 The Seventieth World Health Assembly, Having considered the report aware that early diagnosis and prompt and appropriate treatment, including pain relief and palliative care, can reduce mortality and improve the outcomes and quality of life of cancer patients; on cancer prevention and control in the context of an integrated approach; … 1. URGES Member States, taking into account their context and institutional and legal frameworks, as well as national priorities: … (10) to develop and implement evidence-based protocols for cancer management, in children and adults, including palliative care; (15) to provide pain relief and palliative care in line with resolution WHA67.19 (2014) on the strengthen- ing of palliative care as a component of comprehensive care throughout the life course; (17) to promote early detection of patients’ needs and access to rehabilitation, including in relation to work, psychosocial and palliative care services; (19) to continue fostering partnerships between government and civil society, building on the contribution of health-related nongovernmental organizations and patient organizations, to support, as appropri- ate, the provision of services for the prevention and control, treatment and care of cancer, including palliative care; Integrating palliative care and symptom relief into paediatrics 70 Annex 3 Child-friendly healthcare: a manual for health workers (excerpts) Child Friendly Healthcare Initiative (CFHI) http://www.cfhiuk.org/publications/cfhi_manual/cfhi_manual.pdf Preface This is an assessment and implementation manual about “Child Friendly Healthcare” (CFH) written for health workers who plan, organise, provide or give care to children and their families. The manual defines CFH by translating the articles of the United Nations Convention on the Rights of the Child (UNCRC) into simple CFH “Standards” that are applicable to everyday healthcare practices. It provides a method and process for assessing these and a simple structure for making any wanted or needed improvements so that children and their families everywhere can receive the “best possible” healthcare, regardless of circumstance. The Child Friendly Healthcare Initiative (CFHI), a child health quality improvement program, was developed by Childhealth Advocacy International (CAI), Charity No: 1071486, in collaboration with The United Nations Children’s Fund (UNICEF), The Child and Adolescent Department of Health and Development of the World Health Organisation (WHO), the Royal College of Paediatrics and Child Health (RCPCH), UK and the Royal College of Nursing (RCN), UK. What is the “best possible” healthcare? The practice of CFH Standards at their best possible level of practice. The best possible: n Considers the child’s “best interests” n Covers the preventive, investigative, curative and palliative aspects of health care taking into account the most up-to-date evidence-base for each care given n Is affordable and effective n Is appropriate, taking into account the resources (human and material) and technology available and the needs of other children sharing these n Is child centred STANDARD 7: Recognising and relieving pain and discomfort ‘Health care providers, organisations and individual health workers, share a responsibility to advocate for children and to reduce the fear, anxiety and suffering of children and their families by ensuring that they recognise, assess and relieve the physical and psychological pain and discomfort of children.’ Supporting criteria 1. A separate pain and other symptom management/palliative care service/s with lead health professionals and/or multi-disciplinary team/s. 71 A WHO guide for planners, implementers and managers 2. Systems of care, guidelines and job aides (for example tools to assess and relieve pain) to help with symptom recognition, symptom assessment and restraint for procedures. 3. Written guidelines, evidence based wherever possible, used by everyone to help with symptom relief, that include advice on the relief of different types of pain and other distressing symptoms (both physical and psychological), and on how to use non-pharmacological and pharmacological pain relieving strategies in the different ages groups: 4. Material resources including: n A safe, secure supply of free or affordable essential drugs for symptom relief that includes opiates and non-opiates; n Distraction toys and other resources to aid non-pharmacological pain and other symptom management. 5. The use of individual pain (and other symptom) plans made with the children and their parent/carer. 6. Psychosocial support for children, families and health workers. Discussion The pilot project found large numbers of children in the participating countries suffering from uncontrolled pain and other distressing symptoms, both physical and psychological. Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. In countries where opiates are available, there may be a reluctance to use them due to these misguided beliefs and also a lack of understanding about how to use them. Whilst it is upsetting for health workers when they are unable to help a distressed child, the effects on the child and their family are much worse and can only be imagined, especially if the child has a chronic illness, a terminal illness or any other life- limiting condition. It is ethically wrong and a failure of a health professional’s duty for a child to suffer from uncontrolled pain or other distressing symptoms. This is particularly the case for a child who has a permanent disability that is associated with chronic symptoms or one who cannot be cured of their illness and may be near the end of their life. Relieving pain and distressing symptoms is not always about cure, but is about making the experience of living “now” more bearable (that is improving the quality of remaining life). Improved technology and potential advances in care do not always protect or improve the treatment of these distressing symptoms and can on occasion be an additional cause. Routine procedures (without pain relief), such as dressing wounds are frequent causes of unnecessary pain and suffering for a child. In some countries it is common for a child to be paralysed by drugs or partially sedated without concurrent and appropriate pain relief. The State has a role to play in making it better for children by not restricting or blocking the availability of vital pain relieving drugs (including opiates) due to security concerns or outdated and mistaken beliefs about their appropriateness for use in children and misplaced concerns about risks of addiction. Integrating palliative care and symptom relief into paediatrics 72 Effective relief from pain and other distressing symptoms from birth to adulthood could be better if health workers: n were more aware of the suffering and discomfort that all children may experience (including newborn babies) due to pain and other distressing symptoms; n always anticipating a child’s pain and other distressing symptoms; n gave a higher priority to relieving each individual child’s pain and other distressing symptoms; n made greater use of pain and symptom relieving drugs, both non opiates and opiates; n understood and used simple non-pharmaceutical methods that can help (supportive, cognitive, behavioural and physical); n knew about and anticipated all the things that can make the experience of pain or other symptom worse. To “make it better” best practice is for health workers to have core (during initial training) and regular education/training opportunities on the recognition, assessment and treatment of pain and other distressing symptoms. Best possible practice is also facilitated by having, whenever possible, separate skilled health professionals who lead and guide the treatment of pain and other symptoms. Having a multidisciplinary team dedicated to symptom relief and other aspects of palliative care, and using standardised guidelines for managing pain and other distressing symptoms, are known to be effective ways of improving care and sharing good practice. The child’s normal health worker working together with the child and their carers (who know the child best) can often reduce pain and other distressing symptoms by: n planning each individual child’s care as each child responds differently to pain and other distressing symptoms. n anticipating pain and taking effective measures and/or giving drugs before the symptoms occur, for example before a procedure or operation. Children with recurrent distressing symptoms should not wait for these to re-occur before receiving relief. n using pain/symptom assessment tools to help them recognise and assess a child’s symptoms and guide the care they need. n giving drugs in a way that does not cause more pain and distress. Drugs are often still given in a way that is painful for the child, for example by intramuscular injection. The same drugs are frequently available and equally effective as an intravenous or oral preparation, often at a lower cost. n advocating for the child’s needs to be met, if they are unable to meet these needs themselves. Before using drugs, or where they are unavailable there is much that can be done to relieve suffering and make an unpleasant experience more bearable, such as: n being honest with the child and preparing them for what might be a painful experience can help them to cope. Anxiety and mistrust of health workers will make the experience worse; n using appropriate play, stimulation and distraction to help in the management of pain and other symptoms; n using heat, cold, touch and other comfort measures as these can sometimes help the distress of pain and other symptoms; n giving psychological support, simple kindness and involving parents and other familiar carers where possible. 73 A WHO guide for planners, implementers and managers Annex 4 Sixty-seventh World Health Assembly resolution WHA67.19 Strengthening of palliative care as a component of comprehensive care throughout the life course 24 May 2014 The Sixty-seventh World Health Assembly, Having considered the report on strengthening of palliative care as a component of integrated treatment throughout the life course;1 Recalling resolution WHA58.22 on cancer prevention and control, especially as it relates to palliative care; Taking into account the United Nations Economic and Social Council’s Commission on Narcotic Drugs’ resolutions 53/4 and 54/6 respectively on promoting adequate availability of internationally controlled licit drugs for medical and scientific purposes while preventing their diversion and abuse, and promoting adequate availability of internationally controlled narcotic drugs and psychotropic substances for medical and scientific purposes while preventing their diversion and abuse; Acknowledging the special report of the International Narcotics Control Board on the availability of internationally controlled drugs: ensuring adequate access for medical and scientific purposes,2 and the WHO guidance on ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines;3 Also taking into account resolution 2005/25 of the United Nations Economic and Social Council on treatment of pain using opioid analgesics; Bearing in mind that palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual; Recognizing that palliative care, when indicated, is fundamental to improving the quality of life, well-being, comfort and human dignity for individuals, being an effective person-centred health service that values patients’ need to receive adequate, personally and culturally sensitive information on their health status, and their central role in making decisions about the treatment received; Affirming that access to palliative care and to essential medicines for medical and scientific purposes manufactured from controlled substances, including opioid analgesics such as morphine, in line with the three United Nations international drug control conventions,4 contributes to the realization of the right to the enjoyment of the highest attainable standard of health and well-being; Acknowledging that palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care; 1 Document 67/31. 2 Document E/INCB/2010/1/Supp.1. 3 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. 4 United Nations Single Convention on Narcotic Drugs, 1961, as amended by the 1972 Protocol; United Nations Convention on Psychotropic Sub- stances, 1971; United Nations Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances, 1988. Integrating palliative care and symptom relief into paediatrics 74 Recognizing that more than 40 million people currently require palliative care every year, foreseeing the increased need for palliative care with ageing populations and the rise of noncommunicable and other chronic diseases worldwide, considering the importance of palliative care for children, and, in respect of this, acknowledging that Member States should have estimates of the quantities of the internationally controlled medicines needed, including medicines in paediatric formulations; Realizing the urgent need to include palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care; Noting that the availability and appropriate use of internationally controlled medicines for medical and scientific purposes, particularly for the relief of pain and suffering, remains insufficient in many countries, and highlighting the need for Member States, with the support of the WHO Secretariat, the United Nations Office on Drugs and Crime and the International Narcotics Control Board, to ensure that efforts to prevent the diversion of narcotic drugs and psychotropic substances under international control pursuant to the United Nations international drug control conventions do not result in inappropriate regulatory barriers to medical access to such medicines; Taking into account that the avoidable suffering of treatable symptoms is perpetuated by the lack of knowledge of palliative care, and highlighting the need for continuing education and adequate training for all hospital- and community-based health care providers and other caregivers, including nongovernmental organization workers and family members; Recognizing the existence of diverse cost-effective and efficient palliative care models, acknowledging that palliative care uses an interdisciplinary approach to address the needs of patients and their families, and noting that the delivery of quality palliative care is most likely to be realized where strong networks exist between professional palliative care providers, support care providers (including spiritual support and counselling, as needed), volunteers and affected families, as well as between the community and providers of care for acute illness and the elderly; Recognizing the need for palliative care across disease groups (noncommunicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups; Welcoming the inclusion of palliative care in the definition of universal health coverage and emphasizing the need for health services to provide integrated palliative care in an equitable manner in order to address the needs of patients in the context of universal health coverage; Recognizing the need for adequate funding mechanisms for palliative care programmes, including for medicines and medical products, especially in developing countries; Welcoming the inclusion of palliative care actions and indicators in the WHO comprehensive global monitoring framework for the prevention and control of noncommunicable diseases and in the global action plan for the prevention and control of noncommunicable diseases 2013–2020; Noting with appreciation the inclusion of medicines needed for pain and symptom control in palliative care settings in the 18th WHO Model List of Essential Medicines and the 4th WHO Model List of Essential Medicines for Children, and commending the efforts of WHO collaborating centres on pain and palliative care to improve access to palliative care; Noting with appreciation the efforts of nongovernmental organizations and civil society in continuing to highlight the importance of palliative care, including adequate availability and appropriate use of internationally controlled substances for medical and scientific purposes, as set out in the United Nations international drug control conventions; 75 A WHO guide for planners, implementers and managers Recognizing the limited availability of palliative care services in much of the world and the great avoidable suffering for millions of patients and their families, and emphasizing the need to create or strengthen, as appropriate, health systems that include palliative care as an integral component of the treatment of people within the continuum of care, 1. URGES Member States:5 to develop, strengthen and implement, where appropriate, palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost- effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes; to ensure adequate domestic funding and allocation of human resources, as appropriate, for palliative care initiatives, including development and implementation of palliative care policies, education and training, and quality improvement initiatives, and supporting the availability and appropriate use of essential medicines, including controlled medicines for symptom management; to provide basic support, including through multisectoral partnerships, to families, community volunteers and other individuals acting as caregivers, under the supervision of trained professionals, as appropriate; to aim to include palliative care as an integral component of the ongoing education and training offered to care providers, in accordance with their roles and responsibilities, according to the following principles: (a) basic training and continuing education on palliative care should be integrated as a routine element of all undergraduate medical and nursing professional education, and as part of in-service training of caregivers at the primary care level, including health care workers, caregivers addressing patients’ spiritual needs and social workers; (b) intermediate training should be offered to all health care workers who routinely work with patients with life-threatening illnesses, including those working in oncology, infectious diseases, paediatrics, geriatrics and internal medicine; (c)  specialist palliative care training should be available to prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs; to assess domestic palliative care needs, including pain management medication requirements, and promote collaborative action to ensure adequate supply of essential medicines in palliative care, avoiding shortages; to review and, where appropriate, revise national and local legislation and policies for controlled medicines, with reference to WHO policy guidance,6 on improving access to and rational use of pain management medicines, in line with the United Nations international drug control conventions; 5 And, where applicable, regional economic integration organizations. 6 Ensuring balance in national policies on controlled substances: guidance for availability and accessibility of controlled medicines. Geneva: World Health Organization; 2011. Integrating palliative care and symptom relief into paediatrics 76 to update, as appropriate, national essential medicines lists in the light of the recent addition of sections on pain and palliative care medicines to the WHO Model List of Essential Medicines and the WHO Model List of Essential Medicines for Children; to foster partnerships between governments and civil society, including patients’ organizations, to support, as appropriate, the provision of services for patients requiring palliative care; to implement and monitor palliative care actions included in WHO’s global action plan for the prevention and control of noncommunicable diseases 2013–2020; 2. REQUESTS the Director-General: to ensure that palliative care is an integral component of all relevant global disease control and health system plans, including those relating to noncommunicable diseases and universal health coverage, as well as being included in country and regional cooperation plans; to update or develop, as appropriate, evidence-based guidelines and tools on palliation, including pain management options, in adults and children, including the development of WHO guidelines for the pharmacological treatment of pain, and ensure their adequate dissemination; to develop and strengthen, where appropriate, evidence-based guidelines on the integration of palliative care into national health systems, across disease groups and levels of care, that adequately address ethical issues related to the provision of comprehensive palliative care, such as equitable access, person-centred and respectful care, and community involvement, and to inform education in pain and symptom management and psychosocial support; to continue, through WHO’s Access to Controlled Medicines Programme, to support Member States in reviewing and improving national legislation and policies with the objective of ensuring balance between the prevention of misuse, diversion and trafficking of controlled substances and appropriate access to controlled medicines, in line with the United Nations international drug control conventions; to explore ways to increase the availability and accessibility of medicines used in palliative care through consultation with Member States and relevant networks and civil society, as well as other international stakeholders, as appropriate; to work with the International Narcotics Control Board, the United Nations Office on Drugs and Crime, health ministries and other relevant authorities in order to promote the availability and balanced control of controlled medicines for pain and symptom management; to further cooperate with the International Narcotics Control Board to support Member States in establishing accurate estimates in order to enable the availability of medicines for pain relief and palliative care, including through better implementation of the guidance on estimating requirements for substances under international control;7 7 International Narcotics Control Board, World Health Organization. Guide on estimating requirements for substances under international control. New York: United Nations; 2012. 77 A WHO guide for planners, implementers and managers to collaborate with UNICEF and other relevant partners in the promotion and implementation of palliative care for children; to monitor the global situation of palliative care, evaluating the progress made in different initiatives and programmes in collaboration with Member States and international partners; to work with Member States to encourage adequate funding and improved cooperation for palliative care programmes and research initiatives, in particular in resource-poor countries, in line with the Programme budget 2014–2015, which addresses palliative care; to encourage research on models of palliative care that are effective in low- and middle-income countries, taking into consideration good practices; to report back to the Sixty-ninth World Health Assembly in 2016 on progress in the implementation of this resolution. Integrating palliative care and symptom relief into paediatrics 78 Annex 5 Sample curricula in paediatric palliative care Sample A: Basic curriculum for training doctors, clinical officers, assistant doctors nurse practitioners Day 1 1.1 Paediatric palliative care basic training course: goals and agenda Slide presentation 1.2 Epidemiology of serious and life-threatening health problems among children in the country Slide presentation 1.3 Paediatric palliative care: definition, principles, accessibility, and moral imperative Slide presentation/large group discussion 1.4 Ethical issues and patient–doctor communication in paediatric palliative care Slide presentation/large group discussion 1.5 Palliative care assessment in children Slide presentation 1.6 Growth and development of children in need of palliative care Slide presentation 1.7 Helping children cope in medical settings Slide presentation/large group discussion Day 2 2.1 Pain assessment and treatment in children Slide presentation 2.2 Non-pharmacologic approaches to pain relief in children Slide presentation 2.3 Preparing children for medical procedures Slide presentation 2.4 Paediatric pain cases Small group discussion Day 3 3.1 Dyspnea assessment and treatment Slide presentation/case discussion 3.2 Nausea/vomiting assessment and treatment Slide presentation 79 A WHO guide for planners, implementers and managers 3.3 Constipation/diarrhoea assessment and treatment Slide presentation 3.4 Psychological distress in seriously ill children: depression, anxiety, insomnia Slide presentation 3.5 Altered mental status: delirium in children Slide presentation Day 4 4.1 Talking with parents and children about serious illness Presentation/large group discussion 4.2 Loss, grief and bereavement Slide presentation/large group discussion 4.3 Psychosocial suffering and support Slide presentation/large group discussion 4.4 Role play: Psychosocial support Small group role play 4.5 Health care worker resilience and self-care Short lecture and large group discussion 4.6 Memorial ceremony Group activity Day 5 5.1 Optimum use of life-sustaining treatment Slide presentation/large group discussion 5.2 Complex medical and ethical issues in caring for a dying child Large group case discussion 5.3 Current state of paediatric palliative care in the country Slide presentation 5.4 Palliative care strategic planning: What can you do in your home institution? Group work and discussion Final examination Source: Global Program of Harvard Medical School Center for Palliative Care and Massachusetts General Hospital, 2017. Sample B: Basic curriculum for training nurses Integrating palliative care and symptom relief into paediatrics 80 Day 1 1.1 What is palliative care? Definition and principles Lecture/discussion 1.2 Palliative care situation in the country Lecture/discussion 1.3 The palliative care team Lecture/discussion 1.4 Roles of nurses in palliative care Lecture/discussion 1.5 Nursing ethics in palliative care Lecture/discussion 1.6 Palliative care assessment and approach to the patient Lecture/discussion/role play Day 2 2.1 Principles of pain management Lecture/discussion 2.2 Side-effects of pain medicines Lecture/discussion 2.3 Instructing patients and family caregivers on correct use of morphine Lecture/discussion 2.4 Subcutaneous injection and infusion procedures Lecture/demonstration 2.5 Pain control cases Small group discussion Day 3 3.1 Dyspnea: assessment and management Lecture/discussion 3.2 Dyspnea case Small group discussion 3.3 Wounds, oedema and skin problems: assessment and management Lecture/discussion/demonstration 3.4 Nausea/vomiting: assessment and management Lecture/discussion 81 A WHO guide for planners, implementers and managers 3.5 Constipation/diarrohea: assessment and management Lecture/discussion 3.6 Other symptoms: loss of appetite, cachexia, fever Lecture/discussion 3.6 GI symptom cases Small group discussion Day 4 4.1 Psychological/psychiatric problems: assessment and management Lecture/discussion 4.2 Agitated patient case Large group discussion 4.3 Patient–nurse relationship, communication, and breaking bad news Lecture/discussion 4.4 Discussing diagnosis and prognosis with patient or family Small group role play 4.5 Loss, grief, bereavement Lecture/discussion 4.6 Emotional support for dying patients and their families Lecture/discussion/role play 4.7 Health care worker self-care Lecture/discussion/group activity Day 5 5.1 Barriers to pain relief in the country Lecture/discussion 5.2 Implementing palliative care nursing in participants’ home institutions Lecture/group work/discussion Final examination Sources: University of Medicine & Pharmacy at Ho Chi Minh City, Viet Nam, and Global Program of Harvard Medical School Center for Palliative Care at Massachusetts General Hospital, 2017. Integrating palliative care and symptom relief into paediatrics 82 Sample C: Basic curriculum for training community health workers (CHWs) 4 Hours: 8 sessions of 30 minutes 1. What is palliative care? Brief presentation/sharing of experiences with incurable illness in family/friends 2. Community health workers’ responsibilities to the patient Brief presentation/discussion 3. Knowing about the patient’s medical, psychosocial and spiritual status Presentation/discussion 4. Knowing how to communicate to the patient in a supportive ways Presentation/discussion 5. Know how to recognize uncontrolled symptom. Presentation/Q&A 6. Know when and how to report to supervisor and seek help Presentation/Q&A 7. Resilience and self-care Brief presentation/discussion 8. Grief and bereavement support Brief presentation/discussion Source: Adapted from: Institute of Palliative Medicine. Palliative Care: A Workbook for Carers. Calicut, Kerala, India: WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care, 2017. 83 A WHO guide for planners, implementers and managers Annex 6 Links A really practical handbook of children’s palliative care: for doctors and nurses anywhere in the world http://www.icpcn.org/a-really-practical-handbook-of-childrens-palliative-care/ African Palliative Care Association (APCA) https://www.africanpalliativecare.org/ Asia Pacific Hospice Palliative Care Network http://aphn.org/ Center to Advance Palliative Care. Pediatric palliative care field guide: a catalogue of resources, tools and training to promote PPC innovation, development, and growth https://www.capc.org/topics/pediatric-palliative-care/ Children’s Project on Palliative/Hospice Services (ChiPPS), a program of the National Hospice and Pallia- tive Care Organization of the United States https://www.nhpco.org/chipps-e-journal End-of-life Nursing Education Consortium (ELNEC) https://elnec.academy.reliaslearning.com/ European Association for Palliative Care (EAPC) http://www.eapcnet.eu/ European Association of Palliative Care (EAPC) Primary Care Reference Group http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCReferenceGroups/PrimaryCare.aspx ICPCN e-learning programme http://www.icpcn.org/icpcns-elearning-programme/ Integrating palliative care and symptom relief into paediatrics 84 International Association for Hospice and Palliative Care https://hospicecare.com/home/ International Children’s Palliative Care Network http://www.icpcn.org/ Latin American Palliative Care Association http://www.cuidadospaliativos.org/ NHPCO Standards of practice for pediatric palliative care and hospice https://www.nhpco.org/childrenspediatricschipps/pediatrics-professional-resources Pain and Policy Studies Group http://www.painpolicy.wisc.edu/ Palliative care for infants, children and young people, the facts: a document for health care professionals and policy makers. Prepared by the EAPC Task Force on palliative Care for Children http://www.eapcnet.eu/LinkClick.aspx?fileticket=DeiV2yhtOZA%3D Palliative Care Guidelines Plus http://book.pallcare.info/ Pediatric palliative care: recommendations for treatment of symptoms in the Netherlands https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4634793/ Together for Short Lives: Basic Symptom Control in Paediatric Palliative Care http://www.togetherforshortlives.org.uk/professionals/resources When children die: improving palliative and end-of-life care for children and their families https://www.nap.edu/catalog/10390/when-children-die-improving-palliative-and-end-of-life-care 85 A WHO guide for planners, implementers and managers WHO Guidelines on the pharmaceutical treatment of persisting pain in children with medical illness http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ World Health Organization - Palliative Care Programme http://www.who.int/palliativecare/en/ - Guidelines on persisting pain in children http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/ - Planning and implementing palliative care services: a guide for programme managers http://www.who.int/ncds/management/palliative-care/palliative_care_services/en/ - Global atlas of palliative care at the end of life http://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/ World Hospice Palliative Care Alliance http://www.thewhpca.org/ World Organization of National Colleges, Academies and Academic Associations of General Practitioners/ Family Physicians (WONCA) http://www.globalfamilydoctor.com/ Integrating palliative care and symptom relief into paediatrics 86 Annex 7 Glossary Bereavement support Psychological or spiritual counselling or other emotional support for persons grieving after the death of a loved one. Capacity-building A process by which individuals, institutions and societies develop abilities, individually and collectively, to perform functions, solve problems and set and achieve their goals. Children Persons up to their 18th birthday/the age of 18 years (United Nations). Civil society Structures independent from governments such as nongovernmental organizations (NGOs) and human rights groups, independent activists and human rights defenders, religious congregations, charities, univer- sities, trade unions, legal associations, families and clans. Community health workers (CHWs) Persons who assist with health care in their own communities, are selected by the communities, should be answerable to the communities for their activities, should be supported by the health system but not necessarily a part of its organization, and have shorter training than professional workers. Health A state of complete physical, mental and social well-being and not merely the absence of disease or in- firmity. (Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 Member States [Official Records of the World Health Organization, No. 2, p. 100] and entered into force on 7 April 1948. The Definition has not been amended since 1948.) Health systems strengthening The process of identifying and implementing the changes in policy and practice in a country’s health system so that the country can respond better to its health and health system challenges. Any array of initiatives and strategies that improves one or more of the functions of the health system and that leads to better health through improvements in access, coverage, quality or efficiency. Hospice An organization or institution devoted entirely to providing inpatient or outpatient palliative care for pa- tients near the end of life. Integrated health services Health services that are managed and delivered in a way that ensures people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, at the different levels and sites of care within the health system, and according to their needs throughout their life course. 87 A WHO guide for planners, implementers and managers Intersectoral action The inclusion of several sectors, in addition to health, when designing and implementing public policies that seek to improve health care and quality of life. Noncommunicable disease (NCD) A disease or medical condition that is non-infectious and non-transmissible among people, such as heart disease, stroke, cancer, diabetes and chronic lung disease. Nongovernmental organization (NGO) An organized entity that is functionally independent of, and does not represent, a government or state. People-centred health services Health services that are designed to incorporate the perspectives of individuals, families and communities. They are based on the conviction that individuals, families and communities are participants in – as well as beneficiaries of – trusted health systems that respond to their needs and preferences in humane and holistic ways. People-centred care requires that people have the education and support they need to make decisions and participate in their own care. It is organized around the health needs and expectations of people rather than diseases. Primary health care (PHC) Essential health care based on practical, scientifically sound and socially acceptable methods and technol- ogy. It is the central function and main focus of the country’s health system, is essential for the overall social and economic development of the community, and is the first level of contact with the national health system and brings health care as close as possible to where people live and work. It should be universally accessible to individuals and families in the community, and should be affordable for the community and country at every stage of their development Serious health-related suffering (SHS) Suffering is health-related when it is associated with illness or injury of any kind. Suffering is serious when it cannot be relieved without medical intervention and when it compromises physical, social or emotional functioning. Palliative care should be focused on relieving the SHS that is associated with life-limiting or life-threatening conditions or the end of life. Social determinants of health The conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, and they are the main cause of health inequities – the unfair and avoidable differences in health status seen within and between countries.  Universal health coverage (UHC) Health coverage that provides people with the health services they need while protecting them from exposure to financial hardship incurred in obtaining care. Health services are broadly defined to include health promotion initiatives (such as anti-tobacco policies or emergency preparedness), disease prevention activities (such as vaccination) and the provision of treatment, rehabilitation and palliative care (such as symptom relief and end-of-life care) of sufficient quality to be effective. World Health Organization 20, Avenue Appia 1211 Geneva 27 Switzerland http://www.who.int/servicedeliverysafety/en ISBN 978-92-4-151445-3

УДК 616-08-039.75 ББК 55.6 И73 Рецензент: Кумирова Э .В., д. м. н., зав. кафедрой паллиативной педиатрии РНИМУ им. Н.И. Пирогова, зав. отд. нейроонкологии ФГБУ НМИЦ ДГОИ им. Дмитрия Рогачева; медицинский директор БФ «Детский паллиатив». И73 Интеграция паллиативной помощи в педиатрическую практику : Руководство ВОЗ для специалистов здравоохранения, планирующих и осуществляющих медицинскую помощь. — М.: Практическая медицина, 2020. — 88 с. ISBN 978-5-98811-613-4 (рус.) Этот перевод не был сделан Всемирной организа цией здравоохранения (ВОЗ). ВОЗ не несе т ответственности за содержание или точность этого перевода. Оригинальное английское издание Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers. Geneva: World Health Organization; 2018. Licence: CC BY-NC-SA 3.0 IGO. В случае любого несо ответствия между английской и русской вер сией, оригинальная версия на  английском языке должна приниматься в качестве обязательной и аутентичной. Перевод доступен по лицензии CC BY-NC-SA 3.0. УДК 616-08-039.75 ББК 55.6 © Благотворительный фонд развития паллиативной помощи «Детский паллиатив», 2020 © , оформление, 2020ISBN 978-5-98811-613-4 Перевод и издание на русском языке осуществлены по инициативе и при поддержке Благотворительного фонда развития паллиативной помощи «Детский паллиатив» 3СОДЕРЖАНИЕ Сокращения 4 Благодарности 5 Предисловие 6 Введение 7 Глава 1. Что такое паллиативная помощь детям? 9 Глава 2. Доступ к паллиативной помощи и облегчению симптомов 19 Глава 3. Паллиативная помощь как часть комплексной педиатрической помощи 23 Глава 4. Базовый пакет для оказания паллиативной помощи детям 26 Глава 5. Внедрение паллиативной помощи детям и лечение боли 37 Глава 6. Обеспечение доступа к основным лекарственным средствам 48 Глава 7. Интеграция паллиативной помощи и облегчения симптомов может улучшить функционирование системы здравоохранения и повысить всеобщий охват медико- санитарными услугами 50 Глава 8. Научные исследования по паллиативной помощи детям и улучшение ее качества 53 Литература 59 ПРИЛОЖЕНИЯ Приложение 1. Конвенция о правах ребенка (выдержки) 66 Приложение 2. Резолюция 70-й сессии Всемирной ассамблеи здравоохранения WHA70.12: Профилактика рака и борьба с ним в контексте комплексного подхода (выдержки) 68 Приложение 3. Медицина, доброжелательная к ребенку: памятка для медицинских работников (выдержки) 69 Приложение 4. Резолюция 67-й сессии Всемирной ассамблеи здравоохранения WHA67.19 по укреплению паллиативной помощи как одного из компонентов комплексного лечения на протяжении всего жизненного цикла 73 Приложение 5. Примеры типовых учебных планов по паллиативной помощи детям 78 Приложение 6. Ссылки 82 Приложение 7. Глоссарий 84 4Сокращения CFHI Дружественное ребенку здравоохранение (инициатива) EAPC Европейская ассоциация паллиативной помощи ICPCN Международная сеть детской паллиативной помощи ВИЧ вирус иммунодефицита человека ВОЗ Всемирная организация здравоохранения ВОМСУ всеобщий охват медико- санитарными услугами МККН Международный комитет по контролю за наркотиками МДК (IDT) междисциплинарная команда (по паллиативной помощи) МСР медико- санитарный работник НГО негосударственные организации НПО неправительственные организации ОМТ оценки медицинских технологий ООН Организация Объединенных Наций ППД паллиативная помощь детям РКИ рандомизированные контролируемые исследования СВУД страны с высоким уровнем дохода СИОЗС селективные ингибиторы обратного захвата серотонина СНСУД страны с низким и средним уровнем дохода СПИД синдром приобретенного иммунодефицита ЦОЗ центр общественного здравоохранения 5Благодарности Разработка этого руководства координировалась проф. Eric Krakauer под общим контро- лем Marie- Charlotte Bouesseau и Edward Kelley из Департамента ВОЗ по предоставлению услуг и обеспечению их безопасности. ВОЗ благодарна основной группе авторов, состоящей из Jim Cleary (Университет Висконсина, США), Stephen Connor (Всемирный альянс хосписов и организаций палли- ативной помощи), Julia Downing (Международная сеть детской паллиативной помощи/ Университет Макерере, Уганда), Stefan Friedrichsdorf (Педиатрические больницы и клини- ки Миннесоты, США), Rut Kiman (Национальная больница имени профессора Алехандро Посадаса, Аргентина), Eric Krakauer (ВОЗ), Ella Kumirova (Национальный медицинский исследовательский центр детской гематологии, онкологии и иммунологии имени Дмитрия Рогачева, Российская Федерация), Joan Marston (Паллиативная помощь при экстренных ситуациях и ситуациях, требующих гуманитарной помощи [PalCHASE]), Michelle Meiring (Paedspal и Университет Кейптауна, Южно- Африканская Республика), Sadath Sayeed (Бостонская педиатрическая больница и медицинская школа Гарварда, США), Meaghann Weaver (Hand In Hand/Паллиативная помощь детям). ВОЗ благодарит за ценный вклад Emily B. Esmaili (Университет Дюка, США), Nancy Hutton (Университетская школа медицины Джона Хопкинса, США), Bui Thanh Huyen (Медицинский и фармакологический университет в Хошимине, Вьетнам), Hatoko Sasaki (Национальный центр Детства и Развития, Япония), Noyuri Yamaji (Международная ма- гистратура по сестринскому делу св. Луки, Япония); также благодарит за ценные ком- ментарии Natalia Arias, Justin Baker, Juan Pablo Beca, Mercedes Bernada, Silvina Bevilacqua, Carlos Centeno, Megan Doherty, Hernan Garcia, Eduardo Garralda, Nago Humbert, Jenny Hunt, Erica Kaye, Suresh Kumar, Emmanuel Luyurika, Alexandra Mancini, Regina Okhuysen- Cawley, Roberta Ortiz, Rojim J Sorrosa, Rodolfo Verna, Joanne Wolfe. Дополнительный вклад со стороны ВОЗ от Cherian Varghese. Печать была любезно профинансирована True Colours Trust. 6Предисловие Всемирная ассамблея здравоохранения признала, что обеспечение доступа к паллиа- тивной помощи детям является «этической ответственностью систем здравоохранения», а интеграция паллиативной помощи в систему здравоохранения — основой для достиже- ния Цели устойчивого развития по созданию общедоступных услуг здравоохранения (WHA 67.19). Однако доступ к облегчению симптомов и в целом к паллиативной помощи детям ограничен в целом ряде стран. В результате ежегодно в мире страдают миллионы детей, относящихся к наиболее уязвимой группе. Большое количество проблем, связанных со здоровьем детей, определяет потребность в паллиативной помощи и облегчении симптомов. Это не только запущенные неинфекци- онные заболевания и ВИЧ-инфекция/СПИД, но и тяжелая недоношенность у новорожден- ных детей и ее последствия, родовая травма, врожденные аномалии, тяжелые непрогресси- рующие нарушения, такие как пара- и тетраплегия, лекарственно-резистентный туберкулез, последствия тяжелых травм. Оказание паллиативной помощи детям требует от персонала особых знаний и навыков. Важно, чтобы все лица, оказывающие первичную медицинскую помощь детям, и представители педиатрических специальностей владели этими навыками. Этот документ — один из серии публикаций ВОЗ, посвященных паллиативной помощи, представляющих собой не клинические протоколы, а скорее практические рекомендации по интеграции паллиативной помощи и облегчения симптомов в систему здравоохране- ния. Данная публикация предназначена для всех занимающихся планированием, органи- зацией, управлением или оценкой качества педиатрической службы и интеграцией пал- лиативной помощи и облегчения симптомов в эту службу таким образом, чтобы улучша- лось качество жизни детей и их семей, укреплялась система здравоохранения и внедрялись экономически выгодные модели помощи. Этой публикацией ВОЗ подтверждает свое обязательство отвечать на нужды и потреб- ности всех людей, а в особенности — наиболее уязвимых групп. 7Введение Люди младше 20 лет составляют 35 % мирового населения и 40 % населения в наименее развитых странах [1]. Число новорожденных, детей и подростков до 19 лет, нуждающихся в паллиативной помощи, может достигать 21 млн в год [2]. Согласно данным другого иссле- дования, каждый год около 2,5 млн детей погибают от тяжелых заболеваний, из них более 98 % проживают в странах с низким и средним уровнем дохода (СНСУД) [3]. И хотя оценки могут разниться, нет сомнения, что существует огромная необходимость в паллиативной помощи детям (ППД), в предотвращении и облегчении страданий у детей. В 2014 г. бы- ла принята резолюция Всемирной ассамблеи здравоохранения WHA67.19 «Об усилении паллиативной помощи как компонента комплексного медицинского обслуживания в тече- ние жизни», делающая упор на то, что доступ к паллиативной помощи для детей является «этической ответственностью систем здравоохранения» (Приложение 4) [4]. Однако нигде в мире ППД не воспринимается как приоритетное направление. Исследование 2011 г. вы- явило, что в 65,6 % всех стран отсутствуют службы ППД [5]. В тех СНСУД, где такие служ- бы есть, они, как правило, доступны лишь в одном или нескольких учреждениях и не инте- грированы в систему здравоохранения. Отчет о ППД в странах Африки южнее Сахары вы- явил, что в Кении паллиативная помощь доступна лишь для 1 % нуждающихся в ней детей, а в Южной Африке и Зимбабве эта цифра составляет менее 5 % [6]. Настоящее руководство является одним из серии руководств Всемирной организации здравоохранения (ВОЗ) по паллиативной помощи [7]. В нем описывается медицинская и мо- ральная необходимость обеспечения доступности паллиативной помощи и облегчения бо- ли для всех нуждающихся детей и их семей, а также излагается расширенная концепция ППД, основанная на нуждах детей в СНСУД, равно как и в странах с высоким уровнем до- хода (СВУД). Предлагается базовый пакет услуг паллиативной помощи детям и облегче- ния симптомов и практическое руководство по интеграции ППД и принципов облегчения боли в системы здравоохранения, направленное на улучшение качества жизни детей и их семей, укрепление систем здравоохранения, а также внедрение экономически выгодной для каждого региона модели оказания услуг, что в целом способствует достижению Цели устойчивого развития по созданию общедоступных услуг здравоохранения. Этот документ не является клиническим протоколом и не содержит клинических алго- ритмов. Его содержание, скорее, важно для всех, кто связан с планированием, внедрени- ем или управлением ППД, включая представителей Организации Объединенных Наций (ООН), работающих с детьми, министерств здравоохранения, ответственных лиц в области здравоохранения, руководителей лечебных учреждений, негосударственных организаций (НГО), врачей- педиатров (как общего профиля, так и узких специалистов), хирургов, ане- стезиологов, персонал, оказывающий первичную медицинскую и паллиативную помощь. Он был разработан международной рабочей группой экспертов по ППД и облегчению симптомов, имеющих большой опыт работы в СНСУД.

9Глава 1 Что такое паллиативная помощь детям? Часть 1. Определение понятия «паллиативная помощь» Согласно ВОЗ, паллиативная помощь — это предупреждение и облегчение страданий взрослых и детей, а также их родственников, которые столкнулись с проблемами, вызван- ными угрожающими жизни заболеваниями [8]. Эти проблемы включают физические, пси- хологические, социальные и духовные страдания пациентов, а также психологические, социальные и духовные страдания их родственников. Паллиативная помощь [9]: 5 Приводит к раннему выявлению, грамотной оценке и решению этих проблем. 5 Улучшает качество жизни, обеспечивает чувство комфорта и собственного достоинства, а также может положительно влиять на течение болезни. 5 Сопровождает пациента и его семью в течение болезни. 5 Должна быть интегрированной и дополнять профилактику, раннюю диагностику и лечение серьезных, комплексных или ограничивающих продолжительность жизни состояний. 5 Может применяться на ранних этапах болезни в сочетании с другими методиками, направ- ленными на увеличение продолжительности жизни. 5 У терминальных пациентов представляет альтернативу активным терапевтическим методи- кам, направленным на изменение течения болезни или на поддержание жизни, обладающим сомнительной ценностью в данный период болезни. 5 Может применяться в отношении тех, кто долгое время живет с физическими, психологи- ческими или духовными последствиями серьезных, комплексных ограничивающих продол- жительность жизни болезней или их лечения. 5 Сопровождает членов семьи в период горевания после смерти пациента. 5 Старается смягчить последствия бедности семьи и пациента, защитить их от финансовых трудностей, связанных с болезнью или потерей работоспособности. 5 Не приближает смерть намеренно, а предоставляет любое необходимое лечение для достижения адекватного уровня комфорта пациента в зависимости от его ценностей. 5 Оказывается различными работниками здравоохранения, включая предоставляющих пер- вичную медицинскую помощь врачей общей практики и специалистов в различных областях с различным опытом и уровнем паллиативных навыков — начиная от базового и заканчивая профессиональным. 5 Содействует активному вовлечению сообществ и их членов. 5 Должна быть доступной пациентам в домашних условиях и на всех уровнях системы здраво- охранения. 5 Поддерживает непрерывность и преемственность лечения, усиливает систему здравоох- ранения, способствует достижению Цели всеобщего охвата услугами здравоохранения. Глава 1. Что такое паллиативная помощь детям?10 Конкретные виды и тяжесть болезней очень разнятся в зависимости от геополитической ситуации, социоэкономических условий и культуры. Дети и их семьи в СНСУД часто на- ходятся в тяжелых социальных условиях. Они, как правило, обладают меньшими возмож- ностями для профилактики, диагностики и лечения заболевания; ограниченным доступом к социальной поддержке, а также к специалистам и специализированным организациям, в отличие от детей из СВУД. Например, для многих детей доступ к химиотерапии ограни- чен или отсутствует, равно как лучевая терапия и хирургические вмешательства по пово- ду онкологических заболеваний. Подобное наблюдается и с доступностью лечения рези- стентного туберкулеза или интенсивной терапии детей и новорожденных. Паллиативная помощь не должна рассматриваться как замена предупреждению и лечению болезней или интенсивной терапии, а работники, оказывающие паллиативную помощь, обязаны защи- щать подобную позицию там, где для этого пока нет возможности [9, 10, 11]. Но в любом случае паллиативная помощь должна быть доступна для всех [4]. Таблица 1. Виды болезней и потребность в паллиативной помощи Заболевание или состояние Потребность в СВУД Потребность в СНСУД Тяжелые хронические неинфекционные заболевания Высокая Высокая ВИЧ-инфекция/СПИД Умеренная Очень высокая Резистентный туберкулез Очень низкая Высокая в некоторых областях Критические состояния Высокая Высокая Новорожденные с тяжелой недоношенностью, после родовой травмы или с врожденными пороками развития Высокая Очень высокая Тяжелые непрогрессирующие нарушения, такие как пара- и тетраплегия Умеренная Высокая Тяжелые социальные условия, такие как крайняя бедность или стигматизация Низкая Высокая Острые симптомы, связанные с болезнями, травмами, операциями Неприменимо Высокая Кризисные и неотложные состояния Очень низкая Высокая в некоторых областях Во многих странах недостает специалистов и услуг по реабилитационной медицине, а также учреждений для длительного ухода за детьми с состояниями, не угрожающими жиз- ни, но связанными с серьезными ограничениями, например, при тяжелых парезах и плеги- ях, вызванных травмами головного и спинного мозга или врожденными аномалиями. Кроме того, психиатрические службы и социальные программы могут иметь ограниченные воз- можности, а доступ к ним может быть затруднен или отсутствовать. Помочь в подобных ситуациях может паллиативная помощь (табл. 1). Более того, страдания, которые обычно связаны с угрожающими жизни состояниями, — боль, другие физические, психологические 11Часть 2. В чем разница между паллиативной помощью у детей и взрослых? симптомы — также могут остро развиваться или быть связанными с состояниями, не угро- жающими жизни. Но в условиях недостатка ресурсов предупреждение и борьба с внезап- но возникшими страданиями или связанными с неугрожающими жизни состояниями ча- сто происходит ненадлежащим образом или недоступна. Например, в странах, где терапия боли еще не выделена в отдельную специальность и где ограниченное число врачей выпи- сывает наркотические анальгетики, предупреждение и облегчение боли от травм, ожогов и операций, как правило, неполноценно. Поэтому врач, обученный паллиативной помощи, в такой ситуации может восполнить эту пустоту, либо обучая коллег контролю симптомов, либо напрямую занимаясь облегчением симптомов, либо совмещая эти два подхода. Планирование и внедрение услуг паллиативной помощи должны базироваться на оценке видов и объемов предупреждения или облегчения физических, психологических, социаль- ных или духовных страданий. Подобное внимание к реальным нуждам на местах необходи- мо, чтобы услуги паллиативной помощи были ориентированы на человека: приспособлены к местным потребностям, а также нуждам отдельных пациентов и семей [3, 12]. Часть 2. В чем разница между паллиативной помощью у детей и взрослых? Дети — это не маленькие взрослые. И хотя определение и принципы паллиативной по- мощи, представленные в первой части этой главы, относятся ко всему периоду жизни че- ловека, ППД акцентирует внимание на уникальных явлениях у детей, связанных с разви- тием, родственными связями, физическими, психосоциальными, этическими и духовными аспектами (табл. 2). Различия между взрослыми и детьми, особенно важные для оказания паллиативной помощи в педиатрии, перечислены ниже. Таблица 2. Детская паллиативная помощь: отличия от взрослой ƒ Прогноз, продолжительность жизни и функциональный исход, как правило, менее ясны. ƒ Из-за неясного прогноза паллиативную помощь приходится чаще интегрировать с интенсивной терапией, изменяющей течение болезни, или мероприятиями по поддержанию жизни. ƒ Уход часто требует сосредоточения на двух аспектах: на росте/развитии ребенка и возможности смерти. ƒ Большее эмоциональное напряжение для родственников и медицинского персонала, ведь тяжелые и угро- жающие жизни болезни не являются нормой для детского возраста. ƒ Пациенты постоянно меняются с возрастом: физически, гормонально, когнитивно, экспрессивно и эмоци- онально. ƒ У пациентов меняется потребность в информации, отдыхе и образовании, механизмы борьбы со стрессом. Поэтому паллиативную помощь могут значительно улучшить специалисты по игровой терапии и поведению. ƒ У пациентов могут быть неуточненные врожденные аномалии или редкие генетические заболевания. ƒ Некоторые генетические заболевания могут проявляться у нескольких детей в семье, что может вызвать у родителей чувство вины. ƒ Нужны знания и опыт, чтобы определить уровень когнитивного/эмоционального развития ребенка и раз- говаривать с ним в соответствующей этому уровню манере: сообщать наиболее подходящую информацию о болезни в необходимых объемах и узнавать взгляды ребенка на уход за ним. Источники: Levine et al. 2013 [18]; Weaver et al. 2016 [19]. Глава 1. Что такое паллиативная помощь детям?12 Прохождение через различные этапы развития Дети в процессе роста и развития от новорожденного до подростка постоянно изменя- ются. С ними происходят физические изменения, они учатся говорить, их понимание бо- лезни становится более взрослым, а они сами — более независимыми и самостоятельны- ми. Так как дети проходят через этапы своего развития с разной скоростью, то лица, ока- зывающие паллиативную помощь, должны приспосабливаться к оценке конкретной стадии развития и потребностей каждого ребенка. Дети, выросшие с хроническими заболевания- ми, общавшиеся с медиками и знакомые с больницами, как правило, более глубоко понима- ют, что такое болезнь и смерть, в отличие от детей своего возраста, которые были здоровы большую часть своей жизни. Потребности в коммуникации Для хорошей коммуникации с пациентами и их семьями требуется внимание к этапу раз- вития ребенка, его языку, культуре и пониманию болезни пациентом и его семьей, а также к уровню доверия семьи системе здравоохранения. Паллиативная помощь детям учитыва- ет, насколько это возможно, собственную информацию ребенка о его/ее симптомах, ис- пользуя, например, принятые педиатрические шкалы для оценки боли. При оказании пал- лиативной помощи необходимо максимально уважать ценности каждого ребенка и его се- мьи, выявляя особенности понимания семьей и ребенком самого процесса лечения и его целей. Пациенты, которые пока не достигли совершеннолетия, иногда могут не согла- шаться со своими родителями или опекунами и по-другому оценивать свое состояние и проблемы. Зависимость от взрослых Зависимость детей от взрослых разнится от полной зависимости у новорожденных до почти полной независимости у некоторых подростков. В то же время иногда подростки при серьезных болезнях хотят, чтобы к ним относились, как к детям. Влияние на семью Тяжелая или угрожающая жизни болезнь ребенка сильно влияет на любую семью, это особенно выражено в СНСУД. Даже в тех странах, где лечение бесплатное или большая его часть покрывается страховкой, болезнь все равно может приводить к финансовым труд- ностям или даже к катастрофе для всей семьи. Дополнительные платежи или платежи «в знак благодарности» могут превысить финансовые возможности семьи. Кроме того, семья должна оплачивать дорогу в клинику или в больницу не только пациенту, но и его опекуну. А если пациент остается в больнице, то опекун — чаще всего один из родителей или более старший ребенок — должен платить за еду, а также, часто, и за спальное место. Этот роди- тель или ребенок не может работать и помогать по хозяйству. Все это может приводить 13Часть 2. В чем разница между паллиативной помощью у детей и взрослых? к тому, что сиблинги бросают школу или из-за недостатка средств, или потому, что они вы- нуждены работать или заботиться о своих младших братьях или сестрах. Чтобы оплатить эти расходы, семьи часто вынуждены продавать свое имущество, включая скот, землю, ин- струменты или машины, необходимые для заработка, или даже свои дома. Часто болезнь ре- бенка приводит к обнищанию семьи [13–15]. Паллиативная помощь детям должна оценивать подобные риски и реагировать на них, привлекая социальную поддержку (глава 4). Даже если финансовое положение семьи стабильно, эмоциональное потрясение от серь- езной или угрожающей жизни болезни ребенка обычно крайне сильно. Эмоциональное потрясение родителей, чей ребенок страдает от серьезной или угрожающей жизни болез- ни, как правило, сильнее, чем у членов семьи со взрослым в подобной ситуации. Родители часто ищут любой вариант лечения, который может помочь их ребенку, даже если он тре- бует уехать далеко от дома или значительно превышает их финансовые возможности. Соответственно, паллиативная помощь детям включает оценку уровня понимания ро- дителями диагноза их ребенка и его прогноза, а также аккуратное корректирование за- блуждений, если они есть. Родители отмечали, что они, возможно, приняли бы другое решение, если бы понимали раньше то, что они осознали после смерти своего ребенка. Кроме того, каждая семья обладает уникальными психосоциальными характеристиками. Ребенок с угрожающим жизни заболеванием может ухудшить или подвергнуть испыта- нию уже существующие взаимоотношения внутри семьи. Смена ролей, чрезмерно запу- танные отношения, альянсы и конфликты — все это может происходить между членами семьи. Дисфункциональная семья может значительно ухудшить качество жизни ребенка. Паллиативная помощь детям включает оценку функций семьи и усилия для разрешения конфликтов и проблем. Виды нарушений здоровья Широкий спектр детских болезней усложняет оказание ППД, которая должна удовлет- ворять нужды каждого ребенка. Более того, большинство генетических или врожденных состояний у детей редки и не встречаются у взрослых, симптомы отличаются у каждого ребенка, а диагноз или прогноз могут быть неясны [16]. Педиатрические формы выпуска и дозы важных лекарственных средств Рассчитать правильную дозу по весу маленького ребенка проще, если лекарство будет жидким, кроме того, жидкое лекарство ребенку легче проглотить. При отсутствии жид- ких или детских форм жизненно важных лекарств, например морфина для приема внутрь, таблетки можно разделить на половинки или четвертинки, растолочь их в порошок и сме- шать с едой или растворить в жидкости. Однако при этом сложно соблюсти верную дозу. Более того, фармакокинетика препаратов у детей часто отличается от таковой у взрослых, поэтому доказательств безопасности и эффективности некоторых препаратов для палли- ативного лечения у детей может быть немного или они могут вовсе отсутствовать. Если альтернативы нет и только это лекарство может облегчить симптомы ребенка, то подобное решение требует от врача особой осмотрительности и бдительности [17]. Глава 1. Что такое паллиативная помощь детям?14 Сложность принятия клинических решений По целому ряду причин принять решение о применении поддерживающего жизнь ле- чения или лечения, изменяющего течение болезни, но обладающего сомнительной вы- годой для ребенка, может быть крайне тяжело, как и решение о его приостановке или прекращении. Информацию о плохом прогнозе у ребенка родители чаще всего понима- ют и принимают труднее, чем в случае со взрослыми родственниками. Врачам также мо- жет быть сложно оценить относительные преимущества и последствия своего вмешатель- ства, если пациент — ребенок. Кроме того, способы принятия решений за больных детей, которые не в состоянии выразить свое мнение, разнятся в зависимости от культуры, се- мьи, а иногда не совпадают даже у членов одной семьи. Чтобы определиться с перспек- тивами ребенка, следует при любой возможности прикладывать мягкие, но настойчивые усилия. Больничная среда Палаты и клиники детской паллиативной помощи должны быть как можно более ком- фортными и дружелюбными для детей. В педиатрических учреждениях этого можно до- биться, обеспечив условия для присутствия по меньшей мере одного из членов семьи ( обеспечить питание, комфортное место для сна возле пациента). Повысить комфортность для ребенка можно за счет отвлекающих картин на стене или их успокаивающего цвета, удобного и чистого постельного белья, спокойных звуков, например, тихой музыки или колыбельных, или за счет успокаивающих игрушек. Часть 3. Кто нуждается в паллиативной педиатрической помощи? В ППП могут нуждаться дети с широким спектром состояний (табл. 3 и 4). Поэтому пал- лиативная помощь детям должна быть интегрирована во все специальности на всех уров- нях здравоохранения, а также во многие потенциально излечивающие виды терапии и ме- роприятия по поддержанию жизни (глава 5) [20, 21]. Кроме того, следует иметь четкий план, чтобы паллиативная помощь не прерывалась, когда ребенок, длительное время ее получав- ший, станет взрослым. В СНСУД усилия, направленные на интеграцию паллиативной по- мощи в систему здравоохранения, должны всегда сопровождаться усилиями по обесече- нию максимальной доступности профилактики, ранней диагностики и лечения тяжелых и угрожающих жизни состояний [21, 22]. Однако для многих детей в этих странах доступ к такой помощи очень ограничен [5, 23–25]. Кроме того, 80 % всех злокачественных опухо- лей и множество причин органной недостаточности диагностируются на поздних стади- ях болезни, когда в данной стране нет доступного радикального лечения либо его не су- ществует вовсе [26–28]. Поэтому ППД больше всего нужна в СНСУД, поскольку там пока существует немного подобных служб (глава 2). 15Часть 3. Кто нуждается в паллиативной педиатрической помощи? Таблица 3. Группы детей, нуждающихся в паллиативной помощи Группа Примеры Дети с острыми угрожающими жизни состояниями, от которых они смогут или не смогут восстановиться Любые критические заболевания и травмы, тяжелый дефицит питания Дети с хроническими угрожающими жизни состояниями, которые могут излечиваться или длительное время контролироваться, но могут и приводить к смерти Злокачественные новообразования, туберкулез с множественной лекарственной устойчивостью, ВИЧ-инфекция/СПИД Дети с прогрессирующими угрожающими жизни состояниями, излечение при которых невозможно Спинальная мышечная атрофия, мышечная дистрофия Дюшенна Дети с тяжелыми непрогрессирующими неврологическими нарушениями, которые могут приводить к ухудшению здоровья и смерти Непрогрессирующая энцефалопатия, спастическая тетраплегия, spina bifida Новорожденные с тяжелой степенью недоношенности или тяжелыми врожденными аномалиями Тяжелая недоношенность, анэнцефалия, врожденная диафрагмальная грыжа, трисомия по хромосоме 13 или 18 Члены семьи, в которой внезапно умер ребенок или произошла антенатальная смерть плода Гибель плода, гипоксически- ишемическая энцефалопатия, молниеносный сепсис у ранее здорового ребенка, дорожно- транспортное происшествие, ожоги и др. Источники: Downing et al. 2016 [29]; Wood et al. 2010 [30]. Таблица 4. Состояния, которые, как правило, требуют паллиативной помощи Состояние Примеры Злокачественные новообразования (отличаются от таковых у взрослых) ƒ Лейкозы: кровотечения, обусловленные нарушением свертываемости крови, болезненные процедуры, такие как трепанобиопсия ƒ Опухоли головного мозга: головная боль, когнитивные и неврологиче- ские нарушения ƒ Саркомы: сильная боль, утрата конечности Состояния, выявляемые в перинатальный период [31–33] ƒ Врожденные аномалии: клинически явные дисфункции жизненно важных органов, таких как сердце, кишечник или головной мозг, стигматизирую- щие аномалии внешнего вида. ƒ Недоношенность: респираторный дистресс- синдром, внутрижелудочковые кровоизлияния, ишемия мозга и стойкое нарушение нервно- психического развития ƒ Перинатальная асфиксия: гипоксически- ишемическое повреждение мозга и стойкое нарушение нервно- психического развития Травмы ƒ Травма головы: плохие когнитивные и моторные навыки ƒ Ожоги: острая, а иногда и хроническая боль, стигматизация вследствие обезображивания Глава 1. Что такое паллиативная помощь детям?16 Состояние Примеры ƒ Последствия насилия, проистекающего из конфликтов или стихийных бедствий: расстройства настроения, такие как тревожность, депрессия, посттравматическое стрессовое расстройство Тяжелые инфекции ƒ ВИЧ-инфекция/СПИД: клинически явные оппортунистические инфекции, стигматизация, побочное действие лекарственных средств ƒ Туберкулез с лекарственной устойчивостью: кашель, нарушение общего состояния (лихорадка, потливость, похудание), побочное действие лекар- ственных средств, социальная изоляция, стигматизация ƒ Менингит: стойкое нарушение нервно- психического развития ƒ Ревматизм: клинически явная сердечная недостаточность Наследственные заболевания ƒ Нервные болезни: прогрессирующие неврологические нарушения, инвалидизация ƒ Серповидноклеточная анемия: кризы, сопровождающиеся болевым синдромом, некрозы костей ƒ Заболевания соединительной ткани: хроническая боль Белково- энергетическая недостаточность ƒ Боль, одышка ƒ Рвота или диарея, вызванная возобновлением питания Пребывание в больнице ƒ Болезненные процедуры ƒ Послеоперационная боль ƒ Отсутствие возможности получить ответы на свои вопросы, избавиться от страхов Источники: Knaul et al. 2017 [3]; Krakauer et al. 2018 [22]. Окончание табл. 4 Часть 4. «Паллиативная помощь плюс»: предотвращение и уменьшение страданий детей , не имеющих угрожающих жизни заболеваний Определить, предотвратить боль и справиться с болью у ребенка — это мораль- ный и этический императив, не зависящий от возраста пациента (ведь даже новорож- денные чувствуют боль), его способности к общению, когнитивных способностей и со- стояния здоровья [23, 24]. Там, где доступны службы по контролю острой боли и боли во время процедур у детей с выраженными нарушениями или врожденными аномалия- ми (как это часто бывает в СВУД), паллиативная помощь может сосредоточиться цели- ком на детях с угрожающими жизни состояниями. Но там, где подобные службы малодо- ступны (частая ситуация в СНСУД), контролем боли должны заниматься лечащие вра- чи, умеющие оказывать паллиативную помощь, а также обучать такому контролю других специалистов; это происходит в дополнение к уходу за детьми с угрожающими жизни состояниями. 17Часть 4. «Паллиативная помощь плюс»: предотвращение и уменьшение страданий детей… Острая боль и боль во время процедур Острую боль при травмах у детей часто лечат неадекватно либо не лечат совсем. Это приводит не только к ненужным страданиям от самой боли, но и к большему эмоциональ- ному потрясению у ребенка и его семьи, большим трудностям в лечении пациента (из-за страха боли и связанного с ним двигательного возбуждения) и большему риску стойких эмоциональных нарушений, таких как посттравматическое стрессовое расстройство [35]. Боль во время процедур — это частая, но предотвратимая причина страдания детей. В слу- чае быстрых и минимально инвазивных процедур, таких как флеботомия, можно использо- вать простые нефармакологические техники обезболивания (до, во время и после проце- дуры). Они ослабляют боль и связанные с ней страх и страдания. Техники отвлечения или релаксации, применяемые до или во время болезненных процедур, помогают пациентам и лицам, осуществляющим уход, сохранить ощущение контроля и воспринимать неприят- ные ощущения менее остро. Если есть возможность, то можно применить местные аналь- гетики. При более сложных процедурах, например, перевязке при ожогах, следует приме- нять препараты для общей анальгезии. Боль во время операции и после нее, как правило, требует применения опиоидов. Примеры болезненных процедур 5 Флеботомия. 5 Инъекции. 5 Люмбальная пункция. 5 Костно- мозговая пункция. 5 Торакоцентез. 5 Перевязка. Дети, страдания которых не связаны с угрожающими жизни состояниями Среди детей с тяжелыми физическими нарушениями как в СВУД, так и в СНСУД велико бремя страданий. И, несмотря на то что диагнозы могут сильно различаться, существуют общие виды страданий, испытываемых детьми с инвалидностью, которые можно облег- чить благодаря паллиативной помощи [36]. Независимо от того, вызвана ли инвалидность травмой, врожденной аномалией или генетическим заболеванием, она часто сопровожда- ется болью, социальной изоляцией и стигматизацией ребенка. В зависимости от конкрет- ного состояния могут присутствовать и другие физические или психологические симпто- мы. Кроме того, если ребенок (или взрослый) постоянно не может самостоятельно есть или мыться, ходить или пользоваться туалетом, то это может вызывать физические, эмо- циональные и финансовые трудности у семьи, особенно если это бедная сельская семья. Помощь паллиативных специалистов иногда является единственным способом преодоления подобных трудностей. Глава 1. Что такое паллиативная помощь детям?18 Рамка 1. Инициатива «Здравоохранение, дружественное ребенку» (CFHI) CFHI основана на Конвенции о правах ребенка Организации Объединенных Наций (UNCRC) (Приложения 1 и 3) и была разработана организацией «Международная защита интересов детей» (CAI) при технической поддержке ВОЗ, Королевского колледжа сестринского дела (Великобритания) и Королевского колледжа педиатрии и охраны здоровья детей (Великобритания) в сотрудничестве с Детским фондом Организации Объединенных Наций (ЮНИСЕФ). Основной целью CFHI является развитие системы помощи, ориентированной на физическое, психологическое и эмоциональное благополучие детей, посещающих медицинские учреждения, в частности, стационарные. Был предложен комплекс глобально применимых стандартов для обеспечения того, чтобы практика в больницах и медицинских центрах повсеместно обеспечивала соблюдение прав детей не только в отношении излечения и предотвращения заболеваемости, но и в отношении их защиты от ненужных страданий и информированного участия детей в лечении [37]. 19 Глава 2 Доступ к паллиативной помощи и облегчению симптомов Доступность паллиативной помощи детям заметно отстает от взрослой практики. Развитие ППД ограничено целым рядом факторов, включая географические особенности, недостаток образования и осведомленности населения, стигматизацию и отсутствие согла- сованного представления о том, какие заболевания и состояния требуют ППД. Признание потребности детей в паллиативной помощи встречает внутреннее сопротивление, потому что эмоционально тяжело признать, что дети страдают и умирают. Более того, сохраняют- ся мифы, связанные с уходом за тяжелобольными детьми, например, что дети не осознают свое состояние и не испытывают боль подобно взрослым. Оценить потребность в ППД трудно из-за отсутствия регистров и надежных данных в большинстве стран. В глобальном масштабе потребность в ППД распределена неравно- мерно: почти половина приходится на страны Африки южнее Сахары, а 98 % — на СНСУД. Дети, нуждающиеся в паллиативной помощи, не сосредоточены в какой-то одной области страны, поэтому после выписки из медицинского учреждения обеспечить им надлежащий уход трудно. Врачей, владеющих ППД, немного, и они находятся далеко друг от друга; сле- довательно, в регионах, где нет обученных врачей, дети, страдающие от боли или других симптомов, получат, скорее всего, неадекватный уход либо не получат его совсем. Оценка глобальной потребности в ППД За последние годы было предпринято несколько попыток оценить глобальную потреб- ность в ППД [2, 3, 38]. Одна из оценок определила 11 категорий состояний, формирующих потребность в паллиативной помощи в конце жизни, а также процент потребности для каждой из них (см. рис. 1). Во всем мире число детей, нуждающихся в ППД, может достигать 21 млн в год, 8 млн из них могут иметь проблемы, требующие специализированной ППД [2]. Потребность в ППД в отдельно взятом регионе можно оценить с помощью ключевых ин- форматоров и целевых групп. Люди, которых это непосредственно касается, должны вовле- каться как в оценку потребностей, так и в планирование создаваемых служб. Рабочая груп- па по ППД под эгидой Министерства здравоохранения могла бы изучить местные и между- народные данные, сведения от отдельных групп, чтобы ранжировать потребности от самой низкой до самой высокой. Можно использовать данные о смертности и заболеваемости в регионе, но в СНСУД они чаще всего ненадежны или недоступны. Картирование уровней развития паллиативной помощи Кроме понимания потребностей в ППД, также важно оценить возможности для ее обе- спечения. Международная сеть детской паллиативной помощи (ICPCN) провела карти- рование уровней развития ППД с использованием пятиуровневой схемы (см. рис. 2) [29]. Оценка потребности в ППД и возможностей ее оказания относится к обязательным элементам при планировании ППД в стране или регионе. Обычно оценка производится Глава 2. Доступ к паллиативной помощи и облегчению симптомов20 Рис. 1. Состояния, сгруппированные по заболеваниям, при которых в конце жизни необходима паллиативная помощь * См. исключенные состояния (Приложение 6) Источник: с разрешения Connor et al. 2014 [38]. компетентными людьми (включая национальные ассоциации паллиативной помощи, если таковые существуют) и может осуществляться поэтапно. В большинстве СНСУД существу- ет несколько служб ППД, и это небольшое количество, как правило, известно. Информация, необходимая в первую очередь, — это возможность этих организаций оказывать ППД, что включает следующие данные: y число пациентов, получивших помощь за год; y диагнозы; y длительность помощи в зависимости от диагноза и в целом; y среднее число больных в день. Для сбора этих данных могут использоваться опросники. После проведения оценки по- требности в ППД и возможностей ее оказания можно провести анализ недостающих эле- ментов [38]. Подобный анализ крайне важен при планировании служб здравоохранения, поскольку он показывает размер неудовлетворенной потребности в ППД. Неравенство доступа к паллиативной помощи В настоящий момент 98 % от всей потребности в ППД приходится на СНСУД, а 50 % — на Африканский регион (рис. 3 и 4). Тем не менее ППД обучены лишь немногие врачи в СНСУД. 21Часть 4. «Паллиативная помощь плюс»: предотвращение и уменьшение страданий детей… Рис. 2. Уровни развития ППД в 2015 г.: 1 — есть данные (из рис. 2) о широком распространении паллиативной помощи детям. Достигнута почти пол- ная интеграция паллиативной помощи детям в систему здравоохранения и национальную политику; 2 — есть данные о широком распространении паллиативной помощи детям, возможностях обучения и конкретных пла- нах по созданию служб и интеграции в систему здравоохранения; 3 — есть данные о локализованном оказании паллиативной помощи детям и наличии возможностей обучения; 4 — есть данные о деятельности по усилению потенциала для оказания паллиативной помощи детям; 5 — нет данных об оказании паллиативной помощи детям. Источник: с разрешения Downing et al. 2016 [29]. Рис. 3. Распределение детей, нуждающихся в паллиативной помощи, по регионам ВОЗ АФР — Африканский регион; АМР — Американский регион; ЮВАР — регион Юго-Восточной Азии; ЕВР — Европейский регион; ВСР — Восточный Средиземноморский регион; ЗТР — Западный Тихоокеанский регион. Источник: Connor et al. 2014 [38]. Глава 2. Доступ к паллиативной помощи и облегчению симптомов22 Программы ППД Точное число программ ППД во всем мире в данный момент неизвестно. Однако моделями для развития могут послужить следующие образцово- показательные центры. 5 Организации- члены ICPCN: http://www.icpcn.org/members- directory/. 5 196 организаций- членов ассоциации Великобритании «Вместе за короткие жизни»: https:// www2.togetherforshortlives.org.uk/portal/public/volunteer/List.aspx. 5 Организации- члены Национальной организации хосписов и паллиативной помощи США, которые предоставляют услуги по паллиативной помощи детям: https://www.nhpco.org/ find-hospice. Рис. 4. Распределение детей, нуждающихся в паллиативной помощи в конце жизни, согласно группе дохода страны по классификации Всемирного банка Источник: Connor et al. 2014 [38]. 23 Глава 3 Паллиативная помощь как часть комплексной педиатрической помощи Общая паллиативная помощь детям Большинству детей, страдающих от тяжелых или угрожающих жизни состояний, специ- алист по ППД не нужен. Большая часть ППД может быть оказана врачом общей практики с базовым или средним уровнем подготовки по паллиативной помощи, подобно тому, как большинство инфекций может вылечить врач общей практики без помощи инфекциониста. Таким образом, система здравоохранения должна требовать от педиатров и врачей общей практики, семейных врачей и медсестер хотя бы базовых навыков ППД, а политика систе- мы здравоохранения должна сделать оказание ППД одной из официальных обязанностей этих специалистов (Приложение 5). В СНСУД все программы по обучению паллиативной помощи, вне зависимости от их уровня (базовый, промежуточный, экспертный), должны делать упор на особых проблемах и нуждах педиатрических пациентов и их семей, хотя бы до той поры, пока достаточное количество педиатров не будет иметь подготовку по палли- ативной помощи. Таким образом, любой клиницист, прошедший обучение паллиативной помощи, должен уметь оказывать ребенку хотя бы базовую паллиативную помощь. Между общей педиатрической помощью и ППД есть ряд сходных черт, что упрощает интеграцию обучения паллиативной помощи в подготовку педиатров и внедрение ППД в практику, а именно: 5 упор на непрерывность оказания медицинской помощи и налаживание доверительных отношений с пациентом; 5 наличие интегрированной биопсихосоциальной помощи; 5 внимание уделяется как пациенту, так и его семье; 5 особое внимание уделяется тревогам пациента и его семьи, связанным с болезнью и лечением. Эмоциональный дискомфорт, связанный со смертью детей, может быть преградой для внедрения ППД в общую педиатрическую практику. Ради пациентов и их семей этот барьер необходимо выявить и преодолеть. Большинство пациентов, нуждающихся в паллиативной помощи, будь то дети или взрос- лые, находятся дома. Для того чтобы обеспечивать паллиативную помощь на дому, необ- ходимы врачи общей практики, обученные оказанию паллиативной помощи. Больницы первого уровня (районные) должны иметь отделения паллиативного лечения и контро- ля боли, в которых будут работать лечащие врачи с базовым или промежуточным об- учением по паллиативной помощи. В их задачи будет входить следующее (см. также главу 5). 5 Постоянная оценка симптомов у амбулаторных пациентов и коррекция симптоматической терапии с тем, чтобы пациент мог оставаться дома. Глава 3. Паллиативная помощь как часть комплексной педиатрической помощи 24 5 Стационарная помощь пациентам, симптомы которых не могут в полной мере контролироваться вне больницы, но которые не нуждаются в помощи более высокого уровня. 5 Направление пациентов с тяжелыми или персистирующими симптомами в учреждения более высокого уровня. 5 Обучение и супервизия медицинского персонала, оказывающего паллиативную помощь в центрах общественного здравоохранения (ЦОЗ). В условиях, в которых врачи на локальном уровне не имеют права выписывать амбула- торным пациентам опиоиды, врачи районного уровня должны взять на себя эту роль в от- ношении всех пациентов в округе, которым требуются опиоиды для купирования боли или терминальной одышки. Медицинские работники, оказывающие помощь в ЦОЗ, — а это мо- гут быть врачи, руководители отделений, врачи- ассистенты, практикующие медсестры или медсестры с углубленной подготовкой по паллиативной помощи — все они должны иметь базовые навыки оказания паллиативной помощи (см. Приложение 5). В их обязанности должно входить следующее (глава 5) [22, 39]. 5 Непрерывная оценка симптомов у амбулаторных пациентов и коррекция симптоматиче- ской терапии с тем, чтобы пациент мог оставаться дома. В идеале хотя бы один медицинский работник в ЦОЗ должен иметь право выписывать пероральный морфин для амбулаторных пациентов. 5 Обучение и супервизия работы медико- санитарных работников (МСР), которые наве- щают пациентов на дому каждый день, чтобы распознать неконтролируемые симптомы, социальные или духовные проблемы, и сообщить об этом в ЦОЗ. 5 Если это возможно, обеспечить койку в хосписе или уход в конце жизни одновременно максимум для 1–2 пациентов, симптомы которых хорошо поддаются контролю, но их семьи не в состоянии ухаживать за ними дома. Оказание ППД врачами, специализирующимися не по паллиативной помощи Специалисты, которые часто лечат детей с серьезными и угрожающими жизни состо- яниями, такие как онкологи, кардиологи, реаниматологи и неонатологи, должны владеть ППД на промежуточном уровне (глава 5, часть 3). Политика системы здравоохранения должна требовать, чтобы ППД была одной из официальных обязанностей этих врачей. Подготовленные таким образом специалисты, как правило, работающие в больницах вто- рого (провинциального) или третьего (регионального) уровня, смогут адекватно облегчать большинство страданий детей, которым врачи общей практики не могут оказать адекват- ную помощь на районном или локальном уровне. Кроме того, эти врачи смогут интегриро- вать паллиативную помощь с радикальной и изменяющей течение болезни терапией, кото- рую они обычно практикуют. Обучение в области паллиативной помощи также позволит им распознать момент, когда радикальное лечение или поддерживающие жизнь меропри- ятия начинают приносить больше вреда, чем пользы, а также консультировать пациентов и их семьи по поводу относительных преимуществ и бремени потенциальных вмешательств. 25Специализированная паллиативная помощь детям Политика системы здравоохранения также должна требовать, чтобы больницы второго и третьего уровней имели междисциплинареую команду (МДК) по паллиативной помо- щи и чтобы врачи- специалисты со средним уровнем подготовки по паллиативной помощи были связаны с МДК. Базовая подготовка по паллиативной помощи для врачей широкого профиля должна включать в себя рекомендации о том, когда и как направлять пациентов в МДК больниц более высокого уровня. Специализированная паллиативная помощь детям У некоторых детей могут наблюдаться персистирующие и сложные симптомы, которые не могут облегчить даже врачи с промежуточным уровнем обучения ППД. Эти пациенты нуждаются в помощи специалиста по паллиативной помощи, возглавляющего МДК. Однако в СНСУД мало специалистов по паллиативной помощи, еще меньше врачей- специалистов по ППД, а программы по подготовке специалистов по ППД отсутствуют. Программы по их обучению в СНСУД должны быть созданы как можно скорее, а министерствам здравоохра- нения следует признать паллиативную медицину официальной медицинской специально- стью, что позволит данным программам развиваться, а людям, прошедшим обучение, прак- тиковать. Программы подготовки специалистов по паллиативной помощи должны включать подготовку по ППД для всех обучающихся, усилия должны быть направлены на скорейшую разработку отдельной программы подготовки специалистов по ППД. Национальная поли- тика в области здравоохранения должна требовать от крупных детских больниц создания в определенные сроки служб ППД под руководством врачей- специалистов по ППД. Врачи-специалисты по ППД и МДК особенно важны в детских онкологических центрах. У детей с поздними стадиями злокачественных опухолей большинство мучительных сим- птомов, таких как боль, одышка и тошнота/рвота, лечатся неадекватно либо не лечатся со- всем, даже в СВУД [40–44]. Более того, новые таргетные и иммунные препараты могут усу- гублять или вызывать новые симптомы, а также создавать сложные клинические дилем- мы, в которых мнение специалиста по паллиативной помощи может оказаться критически важным. В похожей ситуации находятся больницы, в которых есть возможность экстракор- поральной мембранной оксигенации или других инвазивных процедур по поддержанию жизни. Они также должны предоставлять ППД, осуществляемую врачом- специалистом и МДК, чтобы минимизировать дискомфорт от интенсивной терапии, предлагать альтер- нативу мероприятиям по поддержанию жизни и обеспечить комфорт детям, у которых эти мероприятия будут прекращены. 26 Глава 4 Базовый пакет для оказания паллиативной помощи детям Базовый пакет для оказания паллиативной помощи детям и облегчения симптомов — это минимум, который должен быть доступен любому ребенку при любых обстоятельствах. Он основан на базовых принципах паллиативной помощи, описанных Krakauer et al. [22] и Knaul et al. [3] и адаптированных для детей на основании экспертного заключения членов рабочей группы ВОЗ по ППД. Он состоит из перечня безопасных эффективных недорогих непатен- тованных и широко доступных лекарственных средств, простого и недорого оборудования, а также основных социальных мер поддержки, которые в совокупности могут предотвра- тить и облегчить любые страдания — физические, психологические, социальные и духовные (табл. 5). Кроме того, он включает человеческие ресурсы, необходимые для надлежащего, эф- фективного и безопасного применения препаратов и оборудования, а также сопровождения пациентов и их родственников на протяжении всего периода болезни. Таблица 5. Базовый пакет для оказания паллиативной помощи: вмешательства, препараты, оборудование, человеческие ресурсы и социальная поддержка Мероприятия Составляющие Социальная поддержка Препаратыa Оборудование Человеческие ресурсыb Профилактика и облегчение боли или других физических страданийd (острых или хронических) Амитриптилин, внутрь Бисакодил (сенна), внутрь Дексаметазон, внутрь и в инъекциях Диазепам, внутрь и в инъекциях Димедрол (хлорфенирамин, циклизин, или дименгидринат), внутрь и в инъекциях Флуконазол, внутрь Флуоксетин (сертралин или циталопрам), внутрь (> 8 лет) Фуросемид, внутрь и в инъекциях Галоперидол, внутрь и в инъекциях Гиосцина бутилбромид, внутрь и в инъекциях Ибупрофен (напроксен, диклофенак, мелоксикам), внутрь (> 3 мес.) Лактулоза (сорбитол или полиэтиленгликоль), внутрь Лоперамид, внутрь Метоклопрамид, внутрь и в инъекциях (> 1 мес.) Метронидазол, внутрь (либо порошок при его дроблении) Морфин, внутрь быстродействующая и в инъекциях Налоксон, инъекции Омепразол, внутрь Ондансетрон, внутрь и в инъекцияхf (> 1 мес.) Кислород Парацетамол, внутрь Вазелин Противопролежневые матрасы Назогастральные зонды для питания и гастростомические трубки Мочевые катетеры Сейфы для хранения опиоидов Фонарики с аккумуляторами (если нет доступа к электричеству) Подгузники (детские и взрослые) или текстиль и пластик Врачи (прошедшие базовый курс по паллиативной помощи) Медсестры (прошедшие базовый курс по паллиативной помощи) МСР (если это возможно) 27Лекарственные средства Лекарственные средства Список лекарственных средств основан на Примерном перечне ВОЗ основных лекар- ственных средств для детей [45] и адаптирован под этот документ. Препараты отбирались по нижеперечисленным критериям. 5 Необходимы для прекращения или облегчения конкретных симптомов либо наиболее ча- стых видов страданий у детей с тяжелыми, сложными или угрожающими жизни заболева- ниями. 5 Для безопасного назначения и применения препарата достаточно профессиональной ком- петентности врачей, их помощников или медсестер- анестезисток с базовой подготовкой в области паллиативной помощи. 5 Из каждого класса выбирался препарат с наилучшим соотношением между доступностью на мировом рынке, клинической эффективностью, безопасностью, простотой использова- ния и низкой стоимостью. Таблица 5. Базовый пакет для оказания паллиативной помощи: вмешательства, препараты, оборудование, человеческие ресурсы и социальная поддержка Мероприятия Составляющие Социальная поддержка Препаратыa Оборудование Человеческие ресурсыb Профилактика и облегчение боли или других физических страданийd (острых или хронических) Амитриптилин, внутрь Бисакодил (сенна), внутрь Дексаметазон, внутрь и в инъекциях Диазепам, внутрь и в инъекциях Димедрол (хлорфенирамин, циклизин, или дименгидринат), внутрь и в инъекциях Флуконазол, внутрь Флуоксетин (сертралин или циталопрам), внутрь (> 8 лет) Фуросемид, внутрь и в инъекциях Галоперидол, внутрь и в инъекциях Гиосцина бутилбромид, внутрь и в инъекциях Ибупрофен (напроксен, диклофенак, мелоксикам), внутрь (> 3 мес.) Лактулоза (сорбитол или полиэтиленгликоль), внутрь Лоперамид, внутрь Метоклопрамид, внутрь и в инъекциях (> 1 мес.) Метронидазол, внутрь (либо порошок при его дроблении) Морфин, внутрь быстродействующая и в инъекциях Налоксон, инъекции Омепразол, внутрь Ондансетрон, внутрь и в инъекцияхf (> 1 мес.) Кислород Парацетамол, внутрь Вазелин Противопролежневые матрасы Назогастральные зонды для питания и гастростомические трубки Мочевые катетеры Сейфы для хранения опиоидов Фонарики с аккумуляторами (если нет доступа к электричеству) Подгузники (детские и взрослые) или текстиль и пластик Врачи (прошедшие базовый курс по паллиативной помощи) Медсестры (прошедшие базовый курс по паллиативной помощи) МСР (если это возможно) Глава 4. Базовый пакет для оказания паллиативной помощи детям28 Мероприятия Составляющие Социальная поддержка Препаратыa Оборудование Человеческие ресурсыb Профилактика и облегчение психических страданийе (острых или хронических) Амитриптилин, внутрь Дексаметазон, внутрь и в инъекциях Диазепам, внутрь и в инъекциях Димедрол (хлорфенирамин, циклизин или дименгидринат), внутрь и в инъекциях Флуоксетин (сертралин или циталопрам), внутрь Галоперидол, внутрь и в инъекциях Лактулоза (сорбитол или полиэтиленгликоль), внутрь Подгузники (детские и взрослые) или текстиль и пластик Врачи (прошедшие базовый курс по паллиативной помощи) Медсестры (прошедшие базовый курс по паллиативной помощи) Социальные работники, психологи или духовные лица МСР (если это возможно) Профилактика и облегчение социальной изоляции и страданий (острых или хронических) Доход и поддержкаc Социальные работники МСР и/или волонтеры (если это возможно) Профилактика и облегчение душевных страданий Местные духовные лица a По данным ВОЗ 2017 [45]. Допустимые альтернативные препараты указаны в круглых скобках. b Врачи-педиатры, врачи общей практики, семейные врачи, хирурги, анестезиологи- реаниматологи, неонатологи, специалисты по инфекционным заболеваниям, специалисты по паллиативной помощи, другие медицинские работники и т. д. Среди медсестер могут быть медсестры- анестезистки. c Только для пациентов, которые живут в крайней нищете, и только на одно лицо, осуществляющее уход за пациентом. Включает денежные переводы для покрытия расходов на жилье, школьное обучение детей, проезд в медицинские учреждения или похоронные расходы; пакеты с едой; и другая поддержка в материальной форме ( одеяла, спальные коврики, обувь, мыло, зубные щетки, зубная паста). d К физическим страданиям относят одышку, слабость, тошноту, рвоту, диарею, запоры, зуд , кровотечения, ранения и лихорадку. e К психологическим страданиям относят беспокойство, подавленное настроение, спутанность сознания или делирий, деменцию и затяжную реакцию горя. f Только в больницах, где проводят химио- или лучевую терапию. Источник: Knaul et al. 2017 [3]; Krakauer et al. 2018 [22]. Морфин и другие опиоиды Из основного списка лекарственных средств для паллиативной помощи наиболее важен морфин, как в пероральной быстродействующей, так и инъекционной формах [45]. Он должен быть доступен в различных формах и дозировках для всех пациентов с терминальной одышкой, а также умеренной или сильной болью (острой, хронической при злокачественном новообра- зовании или неизлечимом заболевании). Опиоиды не должны быть препаратами первой ли- нии для облегчения хронической боли вне рамок онкологических заболеваний, паллиативной помощи и терминального периода жизни (за исключением особых обстоятельств) и при стро- гом контроле их употребления [46]. Морфин, как в инъекционных, так и в пероральных быстро- действующих формах, должен быть доступен по рецепту в каждой областной, региональной 29Лекарственные средства Мероприятия Составляющие Социальная поддержка Препаратыa Оборудование Человеческие ресурсыb Профилактика и облегчение психических страданийе (острых или хронических) Амитриптилин, внутрь Дексаметазон, внутрь и в инъекциях Диазепам, внутрь и в инъекциях Димедрол (хлорфенирамин, циклизин или дименгидринат), внутрь и в инъекциях Флуоксетин (сертралин или циталопрам), внутрь Галоперидол, внутрь и в инъекциях Лактулоза (сорбитол или полиэтиленгликоль), внутрь Подгузники (детские и взрослые) или текстиль и пластик Врачи (прошедшие базовый курс по паллиативной помощи) Медсестры (прошедшие базовый курс по паллиативной помощи) Социальные работники, психологи или духовные лица МСР (если это возможно) Профилактика и облегчение социальной изоляции и страданий (острых или хронических) Доход и поддержкаc Социальные работники МСР и/или волонтеры (если это возможно) Профилактика и облегчение душевных страданий Местные духовные лица a По данным ВОЗ 2017 [45]. Допустимые альтернативные препараты указаны в круглых скобках. b Врачи-педиатры, врачи общей практики, семейные врачи, хирурги, анестезиологи- реаниматологи, неонатологи, специалисты по инфекционным заболеваниям, специалисты по паллиативной помощи, другие медицинские работники и т. д. Среди медсестер могут быть медсестры- анестезистки. c Только для пациентов, которые живут в крайней нищете, и только на одно лицо, осуществляющее уход за пациентом. Включает денежные переводы для покрытия расходов на жилье, школьное обучение детей, проезд в медицинские учреждения или похоронные расходы; пакеты с едой; и другая поддержка в материальной форме ( одеяла, спальные коврики, обувь, мыло, зубные щетки, зубная паста). d К физическим страданиям относят одышку, слабость, тошноту, рвоту, диарею, запоры, зуд , кровотечения, ранения и лихорадку. e К психологическим страданиям относят беспокойство, подавленное настроение, спутанность сознания или делирий, деменцию и затяжную реакцию горя. f Только в больницах, где проводят химио- или лучевую терапию. Источник: Knaul et al. 2017 [3]; Krakauer et al. 2018 [22]. и районной больнице, а пероральные быстродействующие формы должны быть доступны по рецепту и в ЦОЗ, если нет серьезного и неизбежного риска хищения контролируемых ле- карственных средств из ЦОЗ. Все врачи, которые когда-либо ухаживали за пациентами с уме- ренной или сильной болью описанных типов или за пациентами с терминальной одышкой, должны быть надлежащим образом обучены и иметь юридическое право назначать стационар- ным и амбулаторным пациентам пероральный и инъекционный морфин в любой дозе, необ- ходимой для адекватного (по мнению пациента) облегчения страданий. Врачей, не имеющих опыта в назначении морфина, можно надлежащим образом обучить в соответствии с учебным планом по основам ППД, приведенным в настоящем документе, или с аналогичными учебными планами (см. Приложение 5). Врачи также должны иметь возможность назначать достаточное количество морфина, с тем чтобы семьи могли пополнять его запасы без неоправданно частых, Окончание табл. 5 Глава 4. Базовый пакет для оказания паллиативной помощи детям30 дорогостоящих или трудных поездок. Во всех случаях, когда это клинически возможно, следует назначать пероральную, а не инъекционную форму морфина. Все врачи должны быть обучены тому, чтобы распознавать и купировать побочные эффекты опиоидов, а также избегать нераз- умного использования морфина для лечения легкой боли или хронической боли в отсутствие злокачественного новообразования. В некоторых странах безопасно и эффективно проводить опиоидную терапию могут специально обученные медсестры. Баланс между максимальным доступом к опиоидам для медицинского использования и минимизацией риска их хищения и незаконного использования Хотя обеспечение доступа к морфину для всех нуждающихся — это императив, необхо- димо также принимать разумные меры предосторожности для предотвращения его хище- ния и немедицинского использования. Для этого разработаны типовые рекомендации [47]. Все больницы, медицинские учреждения и аптеки должны хранить морфин и другие учет- ные препараты в прочном, закрывающемся и надежно закрепленном сейфе или шкафу, ве- сти учет оставшегося запаса и регистрировать количество, выданное пациенту, а также коли- чество, потраченное впустую или возвращенное семьей пациента. Весь персонал, работаю- щий с контролируемыми лекарственными средствами, такими как опиоиды, должен пройти обучение по их безопасному хранению, ведению документации, а также изучить местное за- конодательство по учетным препаратам. Врачи должны уметь оценивать и минимизировать риск опиоидной зависимости, а также использования препаратов в немедицинских целях. В соответствии с принципом обеспечения максимальной доступности опиоидов для меди- цинского использования и минимального риска их хищения в районах с высоким уровнем преступности или насилия могут потребоваться дополнительные меры предосторожности. Например, в районах с высоким уровнем преступности иногда невозможно обеспечить без- опасный доступ пациентов к морфину. В этих местах доступность должна быть обеспечена на более высоком уровне, но при этом так, чтобы поездки за препаратом не становились тяж- ким бременем для семьи пациента. В тех случаях, когда запасы морфина в доме или в клинике часто воруют или если пациенты и их семьи подвергаются риску при перевозке или хранении морфина, то пациентам, нуждающимся в морфине, может потребоваться госпитализация. Неопиоидные препараты К другим паллиативным препаратам первой необходимости относятся пероральный и инъекционный галоперидол и пероральный флуоксетин или другие селективные ингиби- торы обратного захвата серотонина (СИОЗС). Хотя эти препараты считаются психиатри- ческими или психотропными, они широко применяются при оказании паллиативной по- мощи, а также безопасны и просты в назначении. Например, галоперидол считается препа- ратом выбора для облегчения тошноты, рвоты, возбуждения, делирия и тревоги. СИОЗС, например флуоксетин, — препарат первого выбора при сниженном настроении или стой- кой тревоге у детей старше 8 лет. Не только психиатры или неврологи, а любой врач дол- жен быть обучен и иметь разрешение на выписку этих препаратов. Пациентов с более тя- желыми психическими нарушениями, такими как психозы или биполярное расстройство, по возможности следует направлять к психиатрам. При перевязке незаживающих ран часто используется вазелин. Как правило, смена влажно- высыхающих повязок приводит к боли 31Оборудование или кровотечению, которых можно избежать, нанося на повязку вазелин. Порошок метро- нидазола, полученный путем дробления таблеток, необходим для уменьшения или устра- нения запаха из любой раны, зараженной анаэробными бактериями. Порошком можно припудрить рану, а также смешать его с вазелином или нанести на гидрогелевую повязку. Оборудование Оборудование в базовом пакете должно соответствовать следующим критериям: 5 необходимо для облегчения хотя бы одного вида физических или психологических страданий; 5 дешевое; 5 простое в использовании (достаточно элементарного обучения). Оборудование включает назогастральные зонды (применяются при рвоте, которая не ку- пируется препаратами, а также для введения лекарственных средств или жидкостей); мочевые катетеры (используются при дисфункции мочевого пузыря или стенозе его шейки); пенные, водные или воздушные матрасы, снижающие давление на тело пациента (для предотвраще- ния пролежней и облегчения боли); сейфы для опиоидов (с креплением к стене или непод- вижному объекту); фонарики с аккумуляторными батареями (когда нет подходящего источ- ника света для обеспечения домашнего ухода ночью); и подгузники для детей и взрослых или текстиль и пластиковые пакеты для самостоятельного изготовления подгузников (для умень- шения риска изъязвления кожи и инфекции, а также риска для сиделок и нагрузки на них). В странах, где пластиковые пакеты запрещены в рамках инициатив по защите окружающей среды, должно быть разрешено их специализированное медицинское использование. К базо- вому пакету не относятся необходимые для оказания паллиативной помощи материалы, ко- торые должны присутствовать в любом медицинском учреждении, например, марля и бинты для перевязок, нестерильные смотровые перчатки, шприцы и катетеры. Человеческие ресурсы и обучение Потребность в количестве специалистов зависит в первую очередь от уровня и типа медицинского учреждения и компетентности сотрудников в ППД, а не от их профессии. Любой врач, прошедший базовую подготовку по паллиативной помощи, подобную той, которая приведена в этом документе, должен быть способен ликвидировать или облегчить боль и другие физические страдания (Приложение 5). Также он должен иметь право выпи- сывать рецепты на опиоиды, например морфин, для лечения боли у стационарных и амбула- торных пациентов. Врачи должны владеть методами диагностики и фармакотерапии, необ- ходимыми для купирования неосложненных тревожных расстройств, депрессии или дели- рия. Не только врачей, медсестер, психологов и социальных работников, но и МСР можно обучить простой, культурно приемлемой психотерапии, которая помогает справиться с депрессией и тяжелой утратой [48–51]. Глава 4. Базовый пакет для оказания паллиативной помощи детям32 В некоторых ситуациях эти услуги могут оказывать также медсестры- анестезистки, прошедшие курс обучения по базовой паллиативной помощи, и практикующие медсе- стры с углубленным обучением. Медсестры в ЦОЗ играют решающую роль в контроле за МСР, оказывающими паллиативную помощь, которая не требует выписывания рецептов, и в отборе пациентов, которым может потребоваться помощь врача. Акушерки могут сыграть решающую роль в паллиативной помощи критически боль- ным новорожденным и эмоциональной поддержке родителей. Выписка лекарственных препаратов акушерками зависит от уровня их подготовки и местного законодательства. Также они должны уметь определить умеренный или выраженный дистресс у новорожден- ных и транспортировать пациентов, нуждающихся в паллиативной помощи, в ближайший медицинский центр или другое учреждение, способное ее обеспечить. Иногда лечащие врачи, прошедшие обучение по базовой ППД, сталкиваются с фи- зическими или психологическими страданиями, которые они не могут облегчить, а на- править пациентов в специализированные центры ППД также не представляется воз- можным. Примерами служат боль, не купируемая высокой дозой морфина, депрессия, рефрактерная к максимальной дозе СИОЗС, или психотические расстройства. Если па- циента невозможно направить в специализированное учреждение, то врач, прошед- ший курс обучения ППД, должен использовать все имеющиеся ресурсы, в т. ч. горячую линию паллиативной помощи или другой вид телемедицины для того, чтобы обеспе- чить максимально возможную помощь в сложившихся обстоятельствах, а не отказывать в лечении. Решающую роль в паллиативной помощи и контролировании симптомов могут сыграть МСР, которые часто посещают пациентов и их семьи на дому, а также помогают им ориен- тироваться в системе местного здравоохранения. Всего лишь через 3–6 ч обучения палли- ативной помощи МСР смогут оказывать не только эмоциональную поддержку, но и рас- познавать неконтролируемые симптомы, определять неудовлетворенные базовые по- требности (пища, защита, одежда), ненадлежащее использование лекарственных средств и доносить эту информацию до медсестер медицинского центра (см. Приложение 5). Таким образом, МСР могут сопровождать пациентов, нуждающихся в паллиативной по- мощи, и их семьи и обеспечить им комфорт, быть «глазами и ушами» врачей. На осно- вании отчетов МСР можно выбрать соответствующую тактику в отношении неконтро- лируемых симптомов, например, выписать другой рецепт или организовать визит мед- сестры на дом, что не потребует от пациента госпитализации. Посещения МСР часто уменьшают тяжелое эмоциональное, физическое и финансовое бремя для лиц, осущест- вляющих уход. Медицинские специалисты по ППД должны обучать родственников, осу- ществляющих уход, тому, как, например, обрабатывать раны и ротовую полость, вводить препараты, а также обеспечивать их оборудованием. Следует также обращать внимание на неудовлетворенные социальные потребности таких людей — как правило, это женщи- ны, которые вынуждены работать, имеют другие обязанности по уходу за детьми и живут в нищете. Медицинские специалисты по ППД должны регулярно опрашивать пациентов с тяжелы- ми или ограничивающими жизнь заболеваниями, а также их родственников о потребности в духовной помощи. Необходимо приложить все усилия для обеспечения доступа (с помо- щью добровольцев) к тем представителям местного духовенства, которые соответствуют верованиям и потребностям пациента и его семьи. 33Социальная поддержка Социальная поддержка Социальная поддержка пациентов и заботящихся о них родственников, живущих в усло- виях крайней нищеты, необходима для удовлетворения их базовых потребностей, а имен- но потребности в еде, жилье и перевозке до медицинского учреждения, а также для под- держки чувства собственного достоинства пациента и его семьи. В зависимости от обсто- ятельств эта поддержка включает наборы основных продуктов питания, деньги для оплаты жилья или школы, проездные билеты для посещения медицинских учреждений пациентом и ухаживающим за ним родственником, а также материальную поддержку в виде одеял, ма- трасов, обуви, мыла, зубных щеток и зубной пасты. Такая социальная поддержка гаранти- рует пациенту доступ к медицинской помощи и получение от нее положительного эффек- та. Доступ к помощи должен иметь любой пациент, а не только нуждающийся в паллиатив- ной помощи или купировании симптомов. Дополнительная мера социальной поддержки, которая должна быть доступна семьям, живущим в условиях крайней нищеты, — это рас- ходы на похоронные услуги. Приемлемые с точки зрения соответствующей культуры по- хороны могут стать серьезным финансовым испытанием для семьи, а неспособность их организовать похороны — хроническим эмоциональным грузом. Дополнение к базовому пакету для оказания ППД Базовый пакет представляет собой минимум основных лекарственных средств, обору- дования, социальной поддержки и человеческих ресурсов, который должен быть доступен всем нуждающимся пациентам и семьям. Базовый пакет не следует считать достаточным для удовлетворения всех потребностей в паллиативной помощи или для купирования лю- бых симптомов. Базовый пакет для оказания паллиативной помощи может так или иначе дополняться, что зависит от бюджета организаций по оказанию гуманитарной помощи и типа чрезвычайной ситуации или кризиса в области здравоохранения. Лекарственные средства и другие виды лечения 5 детские (жидкие) формы парацетамола, ибупрофена, морфина и диазепама; 5 мазь с лидокаином или другим местным анестетиком для предотвращения боли при проведении процедур; 5 фентанил в инъекционной форме для предотвращения боли при кратковременных процеду- рах или перевязках, а также для в/в анальгезии у пациентов с почечной недостаточностью; 5 трансдермальные системы (пластыри) с фентанилом для купирования умеренной или сильной боли у онкологических или умирающих пациентов, которые не могут принимать препараты внутрь или страдают от почечной недостаточности; 5 пероральная форма морфина пролонгированного действия для купирования умеренной или сильной боли у онкологических или умирающих пациентов, которые не могут принимать препараты внутрь; Глава 4. Базовый пакет для оказания паллиативной помощи детям34 5 мидазолам в инъекционной форме для умеренного седативного эффекта перед болезнен- ными процедурами и паллиативной седации при неустранимом дистрессе у умирающего больного; 5 гидрогель для местного применения при перевязках заживающих ран; а также 5 доступ к паллиативной терапии (лучевая терапия, химиотерапия) для пациентов с неиз- лечимыми злокачественными новообразованиями. Оборудование 5 инвалидные коляски и трости для улучшения мобильности пациента и снижения нагрузки на лиц, обеспечивающих уход. Человеческие ресурсы 5 врач-специалист по паллиативной помощи для пациентов со сложностями при купировании симптомов; 5 специалист по работе с детьми, помогающий ребенку справиться с болезнью, инвалидностью или потерей родственника; 5 физиотерапевт для пациентов с травмами или ограниченными возможностями. Мероприятия, ориентированные на особые группы пациентов Умирающие дети В некоторых случаях трудно определить, в какой момент началось умирание. Если изме- няющее течение заболевания или поддерживающее жизнь лечение все еще может принести пользу, необходимо приложить все усилия, чтобы пациент его получил в сочетании с палли- ативной помощью. Когда мероприятия по поддержанию жизни начинают приносить больше страданий, чем пользы, или утрачивают свою привлекательность для пациента и его семьи, крайне важно не оставлять пациента без помощи, а обеспечить ему комфорт, чтобы пред- отвратить и облегчить страдания и максимизировать качество жизни. Непредоставление этой услуги не оправдано ни с медицинской, ни с этической точки зрения. Ребенка нужно поместить в максимально тихое и уединенное место, в котором могут присутствовать родственники. Следует осторожно исследовать и при необходимости с уче- том культурных особенностей скорректировать то, как ребенок и его семья понимают про- гноз. Форма подачи плохих новостей должна соответствовать этапу развития пациента, а также культуре и анамнезу пациента и его семьи. Следует ясно дать понять, что меро- приятия никогда не направлены на то, чтобы ускорить смерть, их цель — обеспечить ком- форт в любое время. Необходимо активно стараться облегчить боль и другие симптомы. Вмешательства, направленные на повышение комфорта, иногда требуют напряжения и изо- бретательности и конкурируют с интенсивной терапией. Кроме того, пациенты и их род- ственники должны иметь доступ к психологической первой помощи — ее ВОЗ определяет 35Мероприятия, ориентированные на особые группы пациентов как «гуманную, поддерживающую реакцию на страдания других людей, которые могут нуждаться в поддержке. Она предполагает базовую, ненавязчивую прагматическую забо- ту с акцентом на слушание вместо принуждения к разговору, оценку потребностей и про- блем, гарантию удовлетворения базовых потребностей, поощрение социальной поддержки со стороны значимых близких и защиту от дополнительного вреда» [52]. Любой врач должен быть подготовлен и допущен к оказанию неспециализированной психологической помощи, включающей психологическую первую помощь и выписывание рецептов на психотропные препараты при неосложненных приоритетных психических расстройствах. Существуют ис- черпывающие рекомендации ВОЗ по обучению медиков (врачей и медсестер), не являю- щихся специалистами в вопросах психического здоровья, диагностике и коррекции прио- ритетных психических расстройств, а также направлению страдающих ими людей к специа- листам. Эти рекомендации должны быть включены в учебные программы по паллиативной помощи (см. Приложение 5) [53]. Помощь взрослым и детям, пережившим тяжелую утрату и не имеющим психических расстройств, следует общим принципам, таким как общение, мобилизация, социальная поддержка и внимание к общему благополучию, оказание первой психологической помо- щи; участие в культурно приемлемых траурных обрядах приветствуется, и ему следует со- действовать [52, 53]. Полезны группы поддержки пережившим тяжелую утрату, возглавля- емые надлежащим образом подготовленным персоналом [54]. Некоторые мероприятия могут безопасно и эффективно проводиться МСР, прошедшими базовую подготовку [51]. Для оказания культурно приемлемой духовной поддержки, в которой нуждается пациент или его семья, следует поискать добровольных духовных помощников. Белково- энергетическая недостаточность Лечение детей с кахексией должно сочетаться с паллиативной помощью, обеспечива- ющей их комфорт и психосоциальную поддержку семьи. Лечение побочных эффектов кормления у детей с кахексией, таких как рвота и диарея, не только повышает комфорт, но и улучшает выживаемость. При умирании детей необходимо также облегчать страдания, связанные с болью и одышкой, а их родителям — обеспечить эмоциональную поддержку. Новорожденные Наиболее высока смертность среди грудных детей, особенно новорожденных. Все дети, не умеющие говорить, уязвимы из-за неспособности сообщить о своих страданиях. Однако особенно уязвимы новорожденные в критическом состоянии, поскольку во многих отде- лениях неонатальной интенсивной терапии предлагают только поддерживающее жизнь лечение и не оказывают паллиативной помощи. Эти два вида помощи не взаимоисключа- ющие: интенсивная терапия и паллиативная помощь могут и должны быть интегрирова- ны для обеспечения максимального комфорта пациентов, которые могут выжить, и их ро- дителей. В СВУД паллиативная помощь рекомендуется детям с крайне низкой массой тела при рождении (менее 0,5 кг) и родившимся до 23 недель беременности. Если современная неонатальная интенсивная терапия недоступна, дети, рожденные на более позднем сроке или с более высокой массой тела при рождении, тоже могут не выживать, а потому должны получать паллиативную помощь. В любом случае паллиативная помощь должна отвечать нижеперечисленным критериям. Глава 4. Базовый пакет для оказания паллиативной помощи детям36 5 Должна предоставляться детям, рожденным с ограничивающими продолжительность жизни аномалиями или пороками развития. 5 Если во время беременности или при рождении диагностированы аномалия или порок, ограничивающие продолжительность жизни, либо ребенок родился мертвым, то следу- ет немедленно инициировать для семьи мероприятия по психологической, социальной и духовной поддержке. 5 У новорожденных в критическом состоянии ППД следует интегрировать в интенсивную терапию, изменяющую течение заболевания, или мероприятия по поддержанию жизни. 5 Если интенсивная терапия, изменяющая течение заболевания, или мероприятия по под- держанию жизни будут приносить больше страданий, чем пользы, а потому от них следует воздержаться или отказаться, то ППД должна быть единственной формой помощи. 5 ППД должна способствовать принятию решений о пользе и необходимости интенсивной терапии, изменяющей течение заболевания, или мероприятий по поддержанию жизни у новорожденных в критическом состоянии. 5 В случае мертворождения или смерти ребенка необходимо обеспечивать надлежащую поддержку родственникам. Важную роль в оказании паллиативной помощи при диагностированных во время бере- менности аномалиях плода, ограничивающих продолжительность жизни, и мертворожде- нии играют акушерки или традиционные повитухи. Они могут оказывать эмоциональную поддержку, давать советы родителям и содействовать в следующем: 5 Помочь провести время с умирающим ребенком или дать подержать на руках мертворожденного ребенка. 5 Сделать фотографии ребенка или отпечатки его ладоней и стоп, которые станут дорогими воспоминаниями и помогут пережить утрату. 5 Помочь с организацией крещения, поминок и других ритуалов. Роль акушерок и традиционных повитух в паллиативной помощи должна определять- ся политикой и процедурами в области акушерской, неонатальной и паллиативной помо- щи. Они должны пройти базовую подготовку по ППД и быть членом команды по оказанию паллиативной помощи. 37 Глава 5 Внедрение паллиативной помощи детям и лечение боли Часть 1. Интеграция ППД в системы и структуры здравоохранения Для интеграции паллиативной помощи в систему здравоохранения экономически эф- фективным образом и охвата всех нуждающихся групп населения ВОЗ рекомендует ис- пользовать стратегию общественного здравоохранения [4, 55]. Интеграция паллиативной помощи в национальную систему здравоохранения имеет решающее значение. Без соот- ветствущей политики, делающей обязательным наличие служб паллиативной помощи, ма- ловероятно, что ППД станет широкодоступной и жизнеспособной. Как правило, первыми шагами на пути интеграции ППД в систему здравоохранения должны быть следующие: 5 Национальная стратегия паллиативной помощи, которая должна обеспечить доступ всех групп населения, особенно детей, к паллиативной помощи и обезболиванию с помощью опиоидов. 5 Национальный стратегический план паллиативной помощи для обеспечения такого доступа в течение определенного периода времени. 5 Включение ППД в любую национальную политику или стратегические планы, касающиеся онкологии, неинфекционных заболеваний, педиатрии, ВИЧ-инфекции/СПИДа, туберкулеза с лекарственной устойчивостью или первичной медико- санитарной помощи. После разработки данной политики и стратегических планов необходимо сосредоточить усилия на обеспечении доступности всех основных лекарственных средств и оборудова- ния, включая пероральный быстродействующий и инъекционный морфин, и на обучении персонала (глава 6). На этом этапе следует разработать программы обучения по ППД. Это крайне важно, т. к. если перед обучением не разработать политику, то большинство обуча- емых не смогут практиковать ППД, а возможно, и получать за ППД оплату. Как для врачей первичного звена, так и врачей, чья специальность часто требует ухода за детьми с серьез- ными или угрожающими жизни проблемами со здоровьем, обучение можно начать с ба- зового уровня. Врачи, прошедшие базовую подготовку по паллиативной помощи, должны получить право назначать быстродействующий пероральный и инъекционный морфин как в стационарных, так и амбулаторных условиях. После внедрения базовой подготовки по пал- лиативной помощи в кратчайшие сроки следует разработать другие программы обучения врачей по паллиативной помощи. 5 Обучение промежуточного уровня должно проводиться для врачей, чья специальность часто требует ухода за детьми с серьезными или угрожающими жизни проблемами со здоровьем. 5 Базовая подготовка по паллиативной помощи для практикующих медсестер. 5 Интеграция базового курса по паллиативной помощи, включая ППД, в обучение студентов, медицинских сестер и фармацевтов. Глава 5. Внедрение паллиативной помощи детям и лечение боли38 Затем или одновременно с обучением и закупкой основных лекарственных препаратов следует интегрировать службу ППД в существующие отрасли медицины. Можно начать с любого уровня системы здравоохранения. Однако проще всего внедрить ППД там, где потребность в ней очевидна для большинства сотрудников — в онкологических центрах. Первичным местом внедрения могут стать как стационары, так и консультации или амбу- латории. Национальная стратегия должна предусматривать наличие ППД во всех онколо- гических центрах, а затем, через некоторое время, ее внедрение на всех уровнях системы здравоохранения: 5 больницы второго и третьего уровня (региональные, областные и специализированные); 5 больницы первого уровня (районные); 5 ЦОЗ; а также 5 медицинская помощь на дому. Базовый план интеграции в систему здравоохранения паллиативной помощи в целом и ППД в частности описан в табл. 6. Этот план также можно использовать для формиро- вания политики в области паллиативной помощи. В СНСУД серьезные или угрожающие жизни состояния обычно диагностируются в больницах второго и третьего уровня, где ле- чение обычно и начинается. Следовательно, в этих учреждениях должен быть доступ к пал- лиативной помощи, чтобы обеспечить первоначальный контроль симптомов, сохранить его во время лечения, а также подготовить план по обеспечению комфорта пациента по- сле перевода в учреждение более низкого уровня или при выписке домой. Если лечение в больнице второго или третьего уровня не требуется или нецелесообразно, и у пациента нет сложных или не поддающихся лечению симптомов, то рекомендуется начать паллиатив- ную помощь в больнице первого уровня с составления плана помощи на дому. В большин- стве случаев помощь на дому, осуществляемая местными ЦОЗ, должна быть способна обе- спечить наблюдение после того, как все симптомы будут под контролем и будет составлен план паллиативной помощи на более высоком уровне. В редких случаях, когда страдания пациента тяжелы и не купируются, может потребоваться стационарная помощь умираю- щему в больнице первого, второго или третьего уровня. Примерами могут быть нежизне- способные недоношенные с дыхательной недостаточностью и пациенты с сильной реф- рактерной болью при онкологическом заболевании в терминальной стадии. Стационарная помощь умирающему ребенку требуется в тех случаях, когда симптомы контролируются на дому, но семья не может обеспечить адекватный уход, но не более 1–2 пациентам одно- временно. Однако в большинстве случаев пациент должен иметь возможность получать по- мощь дома с последующим наблюдением со стороны МСР и последующим уходом по ме- ре необходимости на дому, в ЦОЗ или в амбулаторном отделении паллиативной помощи при районной больнице (первого уровня). Крайне важно, чтобы в национальной страте- гии в области здравоохранения были определены типы паллиативной помощи, реализуе- мые на каждом из уровней системы здравоохранения, а также указана подготовка, кото- рую на каждом уровне должен иметь каждый специалист, оказывающий паллиативную помощь. Особенности перевода пациентов, нуждающихся в паллиативной помощи, в другие уч- реждения представлены на рис. 5. Как правило, если диагноз уже поставлен и требуется пал- лиативная помощь, пациента в зависимости от ситуации отправляют только в следующее учреждение более высокого или низкого уровня. Однако из этого правила есть несколько исключений. 39Часть 1. Интеграция ППД в системы и структуры здравоохранения Та бл иц а 6. М ер оп ри ят ия п о па лл иа ти вн ой п ом ощ и, у чр еж де ни я и сп ец иа ли ст ы , о бе сп еч ив аю щ ие е е пр ов ед ен ие М ер оп ри ят ие Уч ре ж де ни я П ер ед ви ж на я ам бу ла то ри я/ до м аш ни й ух од Ц О З Бо ль ни ца I ур ов ня (р ай он на я) Бо ль ни цы II –I II ур ов ня (р ег ио на ль ны е и об ла ст ны е) Н еп ре ры вн ы й ух од за п ац ие нт ам и с хо ро ш о ко нт ро ли ру ем ой си м пт ом ат ик ой , к от ор ая вы зв ан а се рь ез ны м и ил и ог ра ни чи ва ю щ им и пр од ол ж ит ел ьн ос ть ж из ни пр об ле м ам и со з до ро вь ем М СР о бе сп еч ив аю т на бл ю де ни е и эм оц ио на ль ну ю по дд ер ж ку е ж ед не вн о П ос ещ ен ия п о м ер е не об хо ди м ос ти м ед се ст ро й, вр ач ом и ли с оц иа ль ны м ра бо тн ик ом и з Ц О З, пр ош ед ш им и ба зо во е об уч ен ие п о П П М ед се ст ра и , п о во зм ож но ст и, вр ач и ли с оц иа ль ны й ра бо тн ик с ба зо вы м и зн ан ия м и П П об ес пе чи ва ю т а м бу ла то рн ое ле че ни е и по се щ ен ие н а до м у по м ер е не об хо ди м ос ти Ес ли с ем ья н е в со ст оя ни и об ес пе чи ть а де кв ат ны й ух од на д ом у и ес ли в Ц О З не т ст ац ио на рн ог о от де ле ни я, то р ек ом ен до ва на с та ци он ар на я хо сп ис на я по м ощ ь Н еб ол ьш ая б ри га да П П , вк лю ча ю щ ая о дн ог о ил и дв ух вр ач ей , р аб от аю щ их н еп ол ны й ра бо чи й де нь , с н ал ич ие м ба зо во го и ли п ро м еж ут оч но го об уч ен ия п о П П Ес ли с ем ья н е м ож ет об ес пе чи ть а де кв ат ны й ух од на д ом у, т о ре ко м ен ду ет ся ст ац ио на рн ая х ос пи сн ая по м ощ ь в не ко то ры х сл уч ая х А м бу ла то рн ая П П П ер ви чн ы й ко нт ро ль за у м ер ен ны м и ил и тя ж ел ы м и си м пт ом ам и, к от ор ы е вы зв ан ы се рь ез ны м и, с ло ж ны м и ил и ог ра ни чи ва ю щ им и ж из нь пр об ле м ам и со з до ро вь ем Н еб ол ьш ая б ри га да П П , вк лю ча ю щ ая о дн ог о ил и дв ух вр ач ей , р аб от аю щ их н еп ол ны й ра бо чи й де нь , с н ал ич ие м ба зо во го и ли п ро м еж ут оч но го об уч ен ия п о П П Ко м ан да П П , в кл ю ча ю щ ая вр ач а, р аб от аю щ ег о по лн ы й ил и не по лн ы й ра бо чи й де нь с на ли чи ем п ро м еж ут оч но го об уч ен ия п о П П В ид еа ль но й си ту ац ии в кр уп ны х он ко ло ги че ск их це нт ра х и бо ль ни ца х об щ ег о пр оф ил я ко м ан ду д ол ж ен во зг ла вл ят ь вр ач -с пе ци ал ис т по П П Ст ац ио на рн ая П П А м бу ла то рн ая П П О бл ег че ни е уп ор ны х си м пт ом ов П П — п ал ли ат ив на я по м ощ ь; Ц О З — ц ен тр о бщ ес тв ен но го з др ав оо хр ан ен ия . И ст оч ни к: K ra ka ue r e t a l. 20 18 [2 2] . Глава 5. Внедрение паллиативной помощи детям и лечение боли40 5 Если пациент находится в больнице второго или третьего уровня, но хочет вернуться домой для получения паллиативной помощи, а его симптомы контролируются, его следует пере- вести непосредственно домой, а информацию о нем необходимо передать в местный ЦОЗ, который отвечает за уход на дому. 5 Пациентов, находящихся дома или посещающих ЦОЗ и испытывающих тяжелые, слож- ные или некупируемые страдания, которым невозможно обеспечить адекватное облег- чение на месте, можно перевезти непосредственно в больницу первого уровня. Однако если в больнице второго или третьего уровня уже знают об этом пациенте, то его можно перевести непосредственно в это учреждение. Во всех случаях информация должна быть передана в больницу, принимающую пациента. 5 В учреждения со стационарным хосписом можно переводить пациентов с любого уровня системы здравоохранения; разумеется, вместе с ним передается информация из истории болезни. 5 Если имеется учреждение для стационарной помощи в случае заболеваний или травм либо дом сестринского ухода, пациентов с неосложненными проблемами со здоровьем и хорошо контролируемыми симптомами можно перевести туда с любого уровня системы здравоохранения, вместе с ним передается информация из истории болезни. 5 Крайне важно, чтобы учреждения, оказывающие паллиативную помощь на каждом уровне си- стемы здравоохранения, могли свободно и в любое время общаться с учреждениями любых других уровней. Например: y МСР должен иметь возможность в любой момент быстро связаться с медсестрой или куратором в ЦОЗ, чтобы сообщить о проблеме с пациентом; y специалист ЦОЗ должен иметь возможность в любой момент быстро связаться с руководителем на районном уровне для получения консультации по сложному клиническому случаю; а также y специалист больницы третьего уровня должен иметь возможность связаться с соот- ветствующим лицом в ЦОЗ для того, чтобы предоставить информацию о пациенте, которого в скором времени отправят домой для оказания паллиативной помощи. Как правило, передача информации проходит по мобильному телефону. В большинстве случаев для передачи важной клинической информации не подходят текстовые сообщения. В СНСУД с неадекватными системами распределения пациентов оптимальной организации помощи очень помогает стандартизованная форма передачи информации по уровням пал- лиативной помощи, в этой форме регистрируется клинический и социальный анамнез па- циента, включая терапию, изменяющую течение заболевания, и паллиативное лечение, ин- формацию о родственниках и лицах, осуществляющих уход, а также любые согласованные цели помощи. Бюджеты на паллиативную помощь должны включать финансирование те- лекоммуникаций и печати таких бланков, а также средств на транспортировку сотрудников ЦОЗ для посещения пациентов на дому по мере необходимости. Также крайне важно, чтобы обучение по паллиативной помощи на всех уровнях в каждой стране или регионе было интегрировано в систему медицинского образования для всех, кто осуществляет паллиативную помощь, включая врачей, помощников врачей, фельдшеров, аку- шерок, медсестер, фармацевтов и социальных работников. Как правило, это обучение должно проводиться университетом, в котором есть медицинский и фармацевтический факультеты, 41Часть 1. Интеграция ППД в системы и структуры здравоохранения колледжем для медсестер, курсами для социальных работников, но иногда обучение про- ходит в отдельных учреждениях для разных профессий. Поощряется создание кафедры паллиативной помощи или центров обучения паллиативной помощи в университетах (рис. 5). Рис. 5. Схема направления пациентов, которые нуждаются в паллиативной помощи: МДК — междисциплинарная команда; МСР — медико- социальный работник; ПП — паллиативная помощь; ППД — паллиативная помощь детям; РК — работник клиники; ЦОЗ — центр общественного здравоохранения. a Краткосрочная стационарная помощь, чтобы семья могла отдохнуть от забот об умирающем. Глава 5. Внедрение паллиативной помощи детям и лечение боли42 Часть 2. Модели оказания паллиативной помощи В рамках общего плана по интеграции паллиативной помощи в систему здравоохране- ния, описанного в 1-й части настоящей главы, необходимо будет привести различные мо- дели ПП в соответствие со структурой системы здравоохранения в данной стране и стра- тегическими планами министерства здравоохранения, а также гарантировать полный до- ступ к паллиативной помощи всем нуждающимся пациентам (табл. 7). Ниже приведены некоторые примеры. Таблица 7. Модели оказания паллиативной помощи Учреждение Перечень услуг Помощь на дому Сотрудники ЦОЗ с МСР или без них ƒ Родственники, друзья или волонтеры центра осуществляют большую часть помощи при поддержке МСР или волонтеров, которые часто посещают пациента и докладывают медсестре в ЦОЗ ƒ Медсестра (иногда и врач) из ЦОЗ посещает пациента при необходимости и/или через равные промежутки времени ƒ Медсестра, которая осуществляет визиты, в некоторых случаях может доставлять лекар- ственные средства ƒ Медсестра соответствующей квалификации или врач может выписать опиоиды во время посещения на дому Мобильная команда ƒ Команда, состоящая минимум из врача и медсестры, посещает пациента через равные промежутки времени либо по вызову пациента или семьи ƒ В некоторых случаях члены команды могут выписывать и/или приносить препараты, в том числе опиоиды Амбулаторная клиника Клиники паллиативной помощи могут размещаться в ЦОЗ или в больнице любого уровня Клиника при ЦОЗ занимается только простыми, требующими паллиативной помощи, случая- ми, в то время как наиболее сложные случаи направляются в больницы третьего уровня, где работают высококвалифицированные специалисты по паллиативной помощи Все клиники при больницах должны иметь в своем штате врачей, которые имеют право на- значать морфин амбулаторным пациентам, а аптеки в больницах должны иметь в наличии быстродействующий пероральный и инъекционный морфин Стационар — больница Консультационная модель: врачи, прошедшие подготовку по паллиативной помощи, дают ре- комендации лечащему врачу, который затем сам решает, как использовать эти рекомендации Модель стационарного отделения: помещение или палата, которые занимаются только пал- лиативной помощью и укомплектованы врачами и медсестрами, прошедшими подготовку по паллиативной помощи Стационар — хоспис Учреждение или палата, которые занимаются только помощью в терминальном периоде жиз- ни пациентов. Персонал — МДК, в состав которой входят врачи и медсестры, прошедшие обучение по паллиативной помощи Дневная медицинская помощь Учреждение, укомплектованное медсестрой и МСР или волонтерами, где получающие пал- лиативную помощь пациенты, которые в состоянии ходить или передвигаться на инвалидной коляске, могут проводить полный день под присмотром, чтобы родственники могли выйти на работу или отдохнуть от забот о пациенте 43Часть 3. Обучение по паллиативной помощи и купированию симптомов 5 В некоторых случаях та модель, которая использует МСР, может вытесняться моделью ухода на дому, которая предусматривает наличие мобильной группы паллиативного ухода на уров- не района или населенного пункта, а также частые контакты с пациентом или его семьей по телефону. 5 Некоторые стационары могут не создавать специальные паллиативные отделения при ус- ловии наличия сильной консультативной службы, работающей в тесном контакте с прошед- шими базовое обучение по ПП медсестрами в каждом из отделений учреждения. Рамка 2. Паллиативная стационарная помощь в Национальном лечебно- диагностическом госпитале Мулаго (Уганда) В Национальном лечебно- диагностическом госпитале Мулаго в Уганде была организована программа по оказанию паллиативной помощи медсестрами. Как в педиатрических отделениях, так и в отделениях для взрослых медсестер обучили оказывать базовую паллиативную помощь и направлять пациентов со сложными потребностями к специалистам по паллиативной помощи. В результате число пациентов, получающих паллиативную помощь, резко возросло. Большинству из них (86 %) требовалась только базовая паллиативная помощь от медсестер, а 14 % были направлены для получения специализированной паллиативной помощи. Эта программа продемонстрировала интеграцию паллиативной помощи в общее здравоохранение, гарантировала доступность универсальной паллиативной помощи для всех нуждающихся во всей больнице и охватила гораздо большее число пациентов, чем это могла сделать команда специалистов. Данная программа также гарантировала оказание специализированной паллиативной помощи действительно тем, кто в ней нуждается [56]. Часть 3. Обучение по паллиативной помощи и купированию симптомов Резолюция Всемирной ассамблеи здравоохранения WHA67.19 2014 г. о паллиативной помощи настоятельно призывает каждое государство интегрировать в свою систему меди- цинского образования 3 уровня обучения по паллиативной помощи (см. Приложение 4) [4]. 1. Базовая подготовка и дальнейшее непрерывное обучение по паллиативной помощи должны быть интегрированы в качестве обычного элемента профессионального вра- чебного и сестринского образования, а также стать частью обучения без отрыва от ра- боты лиц, осуществляющих уход на уровне первичной медико- санитарной помощи, в т. ч. медицинских работников, лиц, обеспечивающих уход за пациентами, духовных лиц и социальных работников. 2. Промежуточная ступень обучения по паллиативной помощи должна предлагаться всем работникам здравоохранения, которые повседневно сталкиваются с пациента- ми, имеющими угрожающие жизни заболевания, в т. ч. онкологам, инфекционистам, педиатрам, геронтологам и терапевтам. 3. Специализированная подготовка по ПП должна быть организована для медицинских работников, обеспечивающих комплексную, не ограничивающуюся только контролем симптомов, паллиативную помощь пациентам. Глава 5. Внедрение паллиативной помощи детям и лечение боли44 Базовое обучение по паллиативной помощи продолжительностью около 35 ч должно быть включено во все учебные планы медицинских университетов и медицинских коллед- жей (Приложение 5). Обучение может представлять собой как отдельный курс на послед- нем году обучения в медицинском вузе или среднем специальном учебном заведении, так и входить в состав других курсов в рамках всей учебной программы. Например, обучение по лечению боли можно интегрировать в курс неврологии, а обучение коммуникациям с па- циентом — в курс психиатрии или медицинской этики. Обучение должно включать как те- орию, так и практические занятия — обучение у постели пациента. Базовое обучение не- обходимо пройти всем врачам, если их обязанности не исключают контакта с пациентами, нуждающимися в паллиативной помощи. Тренинги по паллиативной помощи промежуточного уровня продолжительностью око- ло 70 ч необходимо включить в учебные программы для специалистов из всех областей, где есть пациенты с тяжелыми или угрожающими жизни заболеваниями. Помимо педи- атрии, онкологии, инфекционных заболеваний, гериатрии и терапии, к ним относят ге- матологию, интенсивную терапию, семейную медицину, фтизиатрию, гепатологию, нев- рологию, кардиологию, пульмонологию, нефрологию, неонатологию, травматологию, анестезиологию и хирургию. Обучение должно состоять из теоретической части и отра- ботки практических клинических навыков под контролем преподавателя. Специалисты из этих областей в основном работают в больницах, и они должны быть готовы ока- зать непосредственную паллиативную помощь своим пациентам. Кроме того, как мини- мум промежуточную подготовку по паллиативной помощи должны пройти врачи, ко- торые работают полный или неполный рабочий день в командах паллиативной помощи в больницах. В больницах второго и третьего уровня МДК паллиативной помощи должна находиться под руководством специалистов по паллиативной помощи. Таким образом, в СНСУД необ- ходимо разработать программы обучения специалистов по паллиативной помощи, что по- может обеспечить эти страны или регионы врачами- специалистами по паллиативной по- мощи. Программа профессиональной подготовки должна длиться не менее 1 года, но этот срок может варьировать в зависимости от правил послевузовской подготовки в каждой стране. Хотя в идеале врачи, предоставляющие ППД, полностью обучены педиатрии и зани- маются только детьми, врачи широкого профиля, такие как врачи общей практики, се- мейные врачи и медсестры первичной медико- санитарной помощи, могут и должны быть обучены и могут предоставлять надлежащую ППД в тех случаях, когда педиатры не тре- буются или недоступны. Подготовка в области паллиативной помощи базового и проме- жуточного уровней направлена не на специализацию, а скорее на овладение основными компетенциями [57]. К основным компетенциям в паллиативной помощи относят: 5 принципы паллиативной помощи; 5 коммуникация; 5 оптимизация комфорта и качества жизни; 5 планирование и совместное обеспечение помощи; 5 помощь при потере, горе, утрате; 5 профессиональная, этическая практика в контексте паллиативной помощи; 5 профессиональная устойчивость. 45Часть 3. Обучение по паллиативной помощи и купированию симптомов Важнейшие навыки по ППД описаны в табл. 8. Специалисты, осуществляющие ППД, должны в любое время иметь возможность получить совет по телефону от педи- атра, прошедшего подготовку по паллиативной помощи промежуточного уровня, или от врача- специалиста по паллиативной помощи. Такое перераспределение обязанностей и разделение задач особенно важны в сельских районах. Таблица 8. Важнейшие компетенции специалиста по паллиативной помощи детям Компетенция Компоненты Оценка симптомов (болевых и других) у детей Используйте подходящие для данного возраста методы оценки таких симптомов, как боль, тошнота, одышка, беспокойство, депрессия и т. д. Подбор подходящего препарата, его дозы и способа введения Доза должна быть подобрана с учетом возраста и массы тела ребенка, а также осо- бенностей метаболизма и экскреции в детском возрасте. Использование ненаркотических анальгетиков, опиоидов и сопутствующей терапии должно согласовываться с принципами ВОЗ: так, при «прорывной» боли необхо- димо использовать введение препарата как по расписанию, так и по потребности. Создать/распространить алгоритм фармакологического и нефармакологического лечения, включающий план действий в экстренных ситуациях; доставить препара- ты для экстренной помощи домой и обучить их применению лиц, обеспечивающих уход. При необходимости следует обратиться за более специализированной пал ли- а тивной помощью в учреждение следующего уровня Психосоциальная оценка пациента и его семьи, психосоциальные вмешательства Выявите и обсудите проблемы, страхи и опасения ребенка и его семьи, братьев и сестер, связанные с заболеванием Успокойте семью и ребенка, что они не останутся одни Определите стиль коммуникации и решения жизненных проблем у ребенка и его семьи и на основании этого скорректируйте план ухода Общайтесь с ребенком в соответствии с его развитием Осторожно выясните опыт встреч в прошлом со смертью, умиранием, другими трав- мирующими жизненными событиями или особыми проблемами, такими как ток- сикомания или суицидальные мысли, и скорректируйте план ухода, минимизируя дальнейший психосоциальный стресс Используйте игровую терапию, такую как музыка, сказкотерапия, искусство для вы- ражения, осмысления и отвлечения внимания Уточните влияние болезни ребенка на окружение ребенка и семьи (религиозную группу, школу и т. д.) — предложите семье помощь в ведении диалога со школой или общественными организациями Оцените, насколько семья сможет справиться с утратой; при необходимости составьте план последующих действий Распознание динамики заболевания Учитывайте, что проявления и развитие заболевания у взрослых и детей разного возраста могут отличаться Обеспечьте соответствующей информацией о появлении и изменений физиче- ских особенностей и о тяжести симптомов, чтобы уменьшить страх ребенка перед неизвестностью Глава 5. Внедрение паллиативной помощи детям и лечение боли46 Компетенция Компоненты Создание информированного и контекстно- ориентированного общения Изучите эмоции и поведение ребенка и семьи Используйте игры, иллюстративный материал или истории, чтобы изучить опыт ребенка Говорите правду о клинической ситуации, учитывая развитие пациента и контекст Распознавайте у ребенка скорбь, переживания за своих родственников и боязнь их обременить Принятие решения и предварительное планирование Вовлекайте пациента в процесс принятия решений в соответствии с его ценностями, культурой и уровнем развития Скорректируйте план ухода в соответствии с культурой, копинг- стратегией и сти- лем общения Уважайте соответствующие этические принципы, культурные и правовые нормы Определите ключевых лиц, которые принимают решения, и предоставьте им необходимую информацию Духовная составляющая помощи Рассмотрите вопрос необходимости привлечения духовного лица Предложите помощь в объяснении заболевания ребенка духовному лицу (с согласия семьи) Предоставьте время для размышлений о смысле и цели жизни Цели помощи Определите, на что направлена помощь: лечение, поддержание текущего уровня здоровья, комфорт или комбинация перечисленных задач Если цели помощи не позволяют проводить интенсивные мероприятия по поддер- жанию жизни пациента, то помогите оформить отказ от сердечно- легочной реани- мации или других вмешательств, которые идут вразрез с целями помощи Разрабатывайте с пациентом и/или его семьей план помощи, который объединит понимание симптомов и перспектив развития заболевания с желаниями и целями пациента и семьи Дайте рекомендации, где можно получить наиболее подходящую помощь (дома, в больнице, хосписе) для достижения согласованных целей Материальная поддержка Предлагайте и организуйте любую помощь, которая может потребоваться: ƒ медицинское оборудование (инвалидная коляска, трость, вакуумный отсос, кресло- туалет, больничная кровать дома) ƒ социальная поддержка (продовольственные пайки, денежные переводы для оплаты аренды или обучения в школе, проездные билеты, другие формы ма- териальной поддержки) ƒ общественные службы (визиты МСР, медсестер, мобильной бригады паллиа- тивной помощи) Источник: Himelstein et al. 2004 [58]. Для обучения ППД есть различные программы, которые можно приспособить для ис- пользования в любой стране (табл. 9). Однако при адаптации учебного плана, предназна- ченного для СВУД, следует соблюдать осторожность, чтобы обеспечить его максимальную интеграцию с местной клинической и культурной ситуацией. Например, следует расска- зывать только о лекарственных средствах, входящих в базовый пакет, а также тех, которые в данной стране есть в наличии и/или скоро могут стать доступными. Окончание табл. 8 47Часть 3. Обучение по паллиативной помощи и купированию симптомов Таблица 9. Программа паллиативной помощи детям Обучение паллиативной помощи и уходу за пациентами в терминальной стадии (EPEC) Разработано для США и СВУД. Учебный план состоит из 19 модулей дистанционного обучения в режиме онлайн и 5 очных конференций. http://bioethics.northwestern.edu/programs/epec/curricula/pediatrics.html Международная сеть детской паллиативной помощи (ICPCN), программа электронного обучения Разработано в Южной Африке, предназначено как для специалистов, так и для непрофессионалов, которые уча- ствуют в оказании паллиативной помощи детям. Требуется наличие места, где осуществляется паллиативная помощь детям, чтобы учащиеся могли провести клиническую оценку, т. к. это является частью курса. http://www.icpcn.org/icpcns- elearning-programme/ Консорциум по обучению медсестер по уходу за пациентами в терминальной стадии — паллиативная педиатрическая помощь (ELNEC-PPC) Разработано для США и СВУД. Взято из учебного плана ELNEC–Core для создания условий детям и их семьям. 10 модулей включают образовательные данные о перинатальном и неонатальном периодах. http://www.aacnnursing.org/ELNEC/About Гарвардская медицинская школа и ее центр по паллиативной помощи, Глобальная программа, Программа педиатрической паллиативной помощи при ограниченных ресурсах Разработано для Вьетнама и стран СНГ. Руководство можно скачать и адаптировать к местным культурным условиям и состоянию клинической медицины. http://www.massgeneral.org/palliativecare/education/international program.aspx Учитывая, что большая часть ухода за детьми с тяжелыми или угрожающими жизни за- болеваниями осуществляется родственниками на дому, то лиц, осуществляющих уход, сле- дует на дому обучить базовым навыкам, учитывающим специфику конкретного пациента. Обучение должно проводиться медсестрой из местного ЦОЗ или мобильной бригадой, оказывающей паллиативную помощь. Обучение может включать введение лекарствен- ных средств, уход за ранами, безопасное кормление, контроль инфекций, предотвраще- ние синдрома выгорания, а также информацию о том, когда и как обращаться за помощью. Материалы для обучения родственников, осуществляющих уход, представлены в табл. 10. Таблица 10. Обучающие материалы для лиц, осуществляющих уход Институт паллиативной помощи (Каликут, Керала, Индия). Паллиативная помощь: практическое руководство для лиц, осуществляющих уход Разработано для Индии и других СНСУД. http://www.instituteofpalliativemedicine.org/downloads/Palliative%20Care%20Workbook%20for%20Carers.pdf Обучение по паллиативной помощи на дому и пакет помощи для детей младшего возраста в Южной Африке Руководство разработано в Южной Африке и предназначено для ухода на дому и на уровне общин для помощи лицам, ухаживающим за тяжело больными маленькими детьми на дому. Контакт: snaicker@hsrc.ac.za 48 Глава 6 Обеспечение доступа к основным лекарственным средствам Лечение боли при заболеваниях Для лечения боли при онкологических заболеваниях, ВИЧ-инфекции/СПИДе, других серьезных болезнях, а также травмах, ожогах и хирургических вмешательствах используют сильные опиоиды, например, морфин. Несмотря на то что морфин включен в «Типовой перечень основных лекарственных средств» ВОЗ для взрослых и детей, он не всегда име- ется в наличии, в необходимом количестве, в соответствующей дозировке и форме, га- рантированного качества, а также по цене, которую пациент и сообщество могут себе по- зволить [45, 59]. 75 % всего населения мира не имеют доступа к морфину или другим силь- ным опиоидам для лечения боли по клиническим показаниям. По оценкам ВОЗ, ежегодно во всем мире 5,5 млн пациентов с терминальными стадиями злокачественных опухолей и 1 млн — с терминальной стадией ВИЧ-инфекции/СПИДа страдают без адекватной терапии умеренной или сильной боли. Международные органы по контролю за наркотиками, такие как Международный ко- митет по контролю за наркотиками (МККН), признали, что исторически они делали упор на ограничение злоупотребления и неправильного применения опиоидов, а не на обеспе- чение доступности опиоидов в медицинских целях [60]. Тем не менее в Единой конвенции ООН о наркотических средствах, которую подписали практически все страны, указано, что страны должны не только минимизировать риск злоупотребления и нелегального рас- пространения опиоидов, но и обеспечить доступ к ним для медицинских и научных це- лей [61]. Это двой ное обязательство получило название принципа баланса, и этот принцип был утвержден ВОЗ [62, 63], Комиссией ООН по наркотическим средствам и Генеральной Ассамблеей ООН. Правительства всех стран должны обеспечить условия, при которых все врачи, занимающиеся лечением пациентов, имели бы полномочия (с точки зрения за- кона и внутренних инструкций лечебного учреждения) выписывать и вводить сильные опиоиды, такие как морфин, в соответствии с медицинскими потребностями пациентов. Правительствам также следует обеспечить наличие достаточного количества морфина для удовлетворения всех медицинских потребностей. Хотя неправильное применение контро- лируемых веществ представляет опасность для общества, система контроля не предназна- чена для того, чтобы препятствовать их доступности для медицинских и научных целей или вмешиваться в их законное медицинское использование для помощи пациентам. Для того чтобы выполнить требования Единой конвенции и надлежащей медицинской практики, следует приложить все усилия для выявления в каждой стране препятствий на пути к доступности опиоидов. Типичные препятствия таковы: 5 чрезмерно строгие правила по выписке рецептов и отпуску опиоидов; 5 недостаточный уровень обучения врачей, медсестер и фармацевтов по контролю за болью, а также правильному применению опиоидов; 49Примеры чрезмерных ограничений 5 недостаточное понимание правильного использования опиоидов у регулирующих органов, которые часто фокусируются только на снижении риска злоупотребления и неправильного применения, а вовсе не на обеспечении доступности этих лекарственных средств. Примеры чрезмерных ограничений [64] 5 требование, чтобы врачи получали специальные рецептурные бланки для опиоидов; 5 требование, чтобы все рецепты на опиоиды для амбулаторных пациентов подписывались не только выписавшим рецепт врачом, но и его руководителем или анестезиологом; 5 разрешение назначать опиоиды только специально выделенным врачом; 5 разрешение назначать опиоиды только врачам- специалистам, а не врачам общей практи- ки или семейным врачам; 5 ограничение использования опиоидов у пациентов, находящихся в стационаре или хосписе; 5 ограничения дозы опиоидов; 5 ограничения выписки опиоидов и выдача их менее чем на 30-дневный курс, даже при ми- нимальном риске хищения; 5 ограничение их выписки семейными врачами и врачами общей практики. Все организации здравоохранения создают систему по контролю за движением опиои- дов от места импорта или производства до места потребления пациентом [65]. В условиях стационара получение опиоидов пациентом должно верифицироваться. В амбулаторных условиях нужно верифицировать опиоиды, выданные фармацевтом или врачом пациенту или ухаживающему за ним родственнику, за вычетом любого количества, возвращенно- го пациентом или семьей фармацевту либо лечащему врачу. Такая система должна не пре- пятствовать доступу к опиоидам в медицинских целях, а гарантировать постоянный до- ступ к ним. Дефицит и другие нарушения в системе поставки препаратов приводят к то- му, что пациенты страдают одновременно от симптомов отмены опиоидов и от боли, что повышает риск потребления запрещенных опиоидов и самоубийства [66]. Единая конвенция требует сообщать о ежегодном потреблении опиоидов во всех стра- нах в МККН. Вместе с другими статистическими данными здравоохранения эта отчетность имеет решающее значение для оценки ожидаемой потребности конкретной страны в опи- оидах в следующем году и для официального выделения со стороны МККН необходимой суммы на их закупку [67]. МККН установил для стран различные методы расчета ожидае- мой потребности. Увеличение ассигнований на следующий год можно запросить на осно- ве ожидаемого улучшения медицинского обслуживания или на основе пересмотренных оценок распространенности заболеваний. МККН использует объединенные данные всех стран, чтобы во всем мире было доступно соответствующее количество опиоидов. 50 Глава 7 Интеграция паллиативной помощи и облегчения симптомов может улучшить функционирование системы здравоохранения и повысить всеобщий охват медико-санитарными услугами Улучшение качества жизни Паллиативная помощь сопровождается улучшением исходов лечения, финансовой за- щищенностью пациентов и их семей, а также снижением затрат на здравоохранение в це- лом [3]. Улучшение исходов лечения включает повышение качества лечения боли и других симптомов, облегчение духовных тягот, улучшение качества жизни, повышение удовлет- воренности пациентов и их семей, а также снижение количества посещений врача, отде- лений неотложной помощи, госпитализаций и дней, проведенных в отделении интенсив- ной терапии в конце жизни [68, 69]. Все эти благоприятные последствия наиболее выраже- ны, если паллиативную помощь начинают на ранних стадиях заболевания [69]. В некоторых случаях оказание паллиативной помощи связывали с увеличением продолжительности жизни [70]. К сожалению, данных о результатах применения паллиативной помощи у детей не так много, как у взрослых. Тем не менее показано, что ППД сопровождается улучшени- ем качества жизни, эмоционального благополучия и удовлетворенности семьи [40, 43, 71]. Таким образом, полученные данные указывают на то, что интеграция паллиативной по- мощи позволяет системе здравоохранения лучше выполнять свою миссию по улучшению благосостояния пациентов. Улучшение результатов лечения Паллиативная помощь должна рассматриваться не только как альтернатива радикально- му лечению или мероприятиям по поддержанию жизни с сомнительной пользой, но и как существенное дополнение к радикальным или модифицирующим течение болезни мето- дам при серьезных или угрожающих жизни состояниях здоровья. Если симптомы заболе- вания или побочные эффекты терапии не предотвращены либо не смягчены в достаточ- ной степени, соблюдать режим радикального или модифицирующего заболевание лечения трудно. Следовательно, паллиативная помощь может улучшить приверженность, особенно к разновидностям терапии с повышенной токсичностью, таким как лечение лекарственно- устойчивого туберкулеза и многих видов онкологических заболеваний [72]. Приверженность к лечению обычно снижают бедность и другие социальные проблемы. В СНСУД отказ от лечения — неспособность начать или завершить назначенную радикальную терапию — 51Снижение затрат на систему здравоохранения и защита семей от финансового риска служит основной причиной неудачи лечения при потенциально излечимых детских онко- логических заболеваниях [73]. К конкретным причинам отказа от лечения относятся фи- нансовые трудности, стресс из-за побочных эффектов, а также плохие взаимоотноше- ния с работниками здравоохранения [74]. Устранить все эти проблемы может ППД. Также было показано, что социальная поддержка, которая подробно описана в главе 4, снижа- ет количество отказов от лечения и улучшает способность пациентов его придерживать- ся [74–76]. Таким образом, паллиативная помощь может не только улучшить комфорт па- циентов, но и повысить эффективность системы здравоохранения при лечении серьезных и угрожающих жизни состояний. Снижение затрат на систему здравоохранения и защита семей от финансового риска Во многих странах большую часть бремени по уходу, связанному с серьезными заболе- ваниями, несут сами пациенты и их семьи. В дополнение к чрезмерному эмоциональному стрессу семьи больных детей часто сталкиваются с серьезными социальными и экономиче- скими трудностями, включая изоляцию, потерю дохода и катастрофические расходы на ле- чение. Обычно о больном родственнике заботятся женщины или дети, которые из-за этого нередко не в состоянии работать, ходить в школу или участвовать в общественной жизни. Когда дети из малоимущих семей попадают в больницу, в большинстве случаев лицо, осу- ществляющее уход, вынуждено оставить вид деятельности, приносящий доход, школу или уход за другими детьми, чтобы находиться с пациентом в больнице. Это подвергает семьи пациентов риску финансового краха, а лиц, осуществляющих уход, — угрозе истощения и проблем со своим собственным здоровьем [22, 77, 78]. Многочисленные исследования в СВУД показали, что паллиативная помощь может сни- зить затраты пациентов и их семей, а также системы здравоохранения [79–83]. Паллиативная помощь, включающая медицинское обслуживание по месту жительства и уход на дому, как описано в главе 4, позволяет пациентам оставаться дома и чувствовать себя комфортно, а не возвращаться в больницу для лечения симптомов. Кроме того, в конце жизни мож- но снизить потребность в дорогостоящей терапии, изменяющей течение заболевания, но приносящей сомнительную пользу, за счет щадящих альтернатив и психологической поддержки, которые помогают сократить продолжительность пребывания в стационаре, т. к. позволяют контролировать симптомы на уровне сообщества. Таким образом, семьи освобождаются от ненужных госпитализаций, от транспортировки пациентов и лиц, осу- ществляющих уход, в больницу, от доплат и расходов на проживание лиц, осуществляю- щих уход. Поскольку лицо, осуществляющее уход, может оставаться дома и работать хо- тя бы неполный рабочий день, то потери дохода будут не такими значимыми. Если уход осуществляют дети, то такая помощь позволяет им посещать школу [84–89]. Интеграция паллиативной помощи также может снизить финансовое бремя для систе- мы здравоохранения. По мере старения населения и роста распространенности хрониче- ских неинфекционных заболеваний все больший процент бюджета здравоохранения ухо- дит на стационарное лечение уходящих из жизни пациентов, которое все чаще включа- ет агрессивные методы терапии и мероприятия по поддержанию жизни с сомнительным эффектом. [86, 90]. Паллиативная помощь, интегрированная в систему здравоохранения на всех уровнях, включая уход на дому, может снизить расходы на здравоохранение за счет Глава 7. Интеграция паллиативной помощи и облегчения симптомов…52 меньшего ненужного или неоправданного использования ресурсов [86]. Вместо того, что- бы проводить последние дни, недели или месяцы жизни в больницах, пациенты могут по- лучать помощь на дому или на уровне сообщества, что по своей сути менее затратно и да- ет лучшие результаты. Кроме того, снизится перегруженность больниц второго и третье- го уровней. Таким образом, паллиативная помощь поможет системам здравоохранения добиться лучших результатов при меньших затратах [22]. Дополнительную выгоду для систем общественного здравоохранения можно извлечь из экономически эффективной паллиативной помощи на дому. МСР, медсестры из ЦОЗ и члены мобильных групп паллиативной помощи, которые посещают пациентов на дому, дают много больше, чем только паллиативную помощь. Визиты на дому предоставляют возможность провести множество других первичных профилактических и скрининговых вмешательств, в том числе: 5 помощь в отказе от курения, просвещение о важности качества воздуха в помещениях, диеты и физической активности; 5 содействие обращению за дородовой помощью, вакцинацией детей, скринингом рака шейки матки, профилактикой и тестированием на ВИЧ; а также 5 выявление случаев туберкулеза и злокачественных новообразований. Таким образом, создание или расширение возможностей для оказания паллиативной по- мощи на дому может улучшить профилактику заболеваний и раннюю диагностику. Кроме того, взаимодействие между всеми уровнями системы здравоохранения, необходимое для осуществления паллиативной помощи, можно использовать для предупреждения потери из-под наблюдения. Сотрудники стационаров, таких как учреждения, проводящие противо- опухолевую химиотерапию, или специализированные клиники, могут информировать ЦОЗ о запланированных визитах, а МСР затем могут напоминать об этом пациентам и помогать пациенту преодолеть все трудности и прибыть своевременно. Повышение всеобщего охвата медико- санитарными услугами В 2015 г. в резолюции 70/1 Генеральной Ассамблеи ООН были указаны цели устойчиво- го развития [91]. Цель 3 состоит в обеспечении здорового образа жизни и содействии бла- гополучию всех людей в любом возрасте, а цель 3.8 направлена на достижение всеобщего охвата медико- санитарными услугами (ВОМСУ), включая защиту от финансового риска, доступ к качественным основным медицинским услугам и к безопасным эффективным ка- чественным и доступным лекарственным средствам, а также к вакцинации. Паллиативная помощь существует для того, чтобы помогать, сопровождать и обеспечивать благополучие людей с тяжелыми или угрожающими жизни проблемами со здоровьем, чьи потребности выходят за рамки лечения заболевания. Таким образом, паллиативная помощь — неотъем- лемая составляющая достижения цели устойчивого развития 3 и ВОМСУ. В определении ВОМСУ, данном ВОЗ, паллиативная помощь упоминается особо: «ВОМСУ означает, что все люди и слои общества получают необходимые им медицинские услуги и не испытывают финансовых тягот. ВОМСУ включает полный спектр качественных основных медицинских услуг от укрепления здоровья до профилактики, лечения, реабилитации и паллиативной помощи» [92]. 53 Глава 8 Научные исследования по паллиативной помощи детям и улучшение ее качества Для развития высококачественных и экономически эффективных сервисов по ока- занию паллиативной помощи детям необходимы научные исследования и инициативы по улучшению ее качества [93–95]. В резолюции WHA67.19 Всемирной ассамблеи здраво- охранения 2014 г. о паллиативной помощи описана важность доказательной паллиатив- ной помощи (Приложение 4) [4]. Кроме того, ВОЗ призывает к проведению исследова- ний, которые закроют пробелы в фактических данных, обнаруженные в ходе разработки «Руководства ВОЗ по фармакологическому лечению хронической боли у детей с сома- тическими заболеваниями» [96, 97]. В настоящее время не хватает данных по ППД, осо- бенно в СНСУД, где проживает подавляющее большинство нуждающихся в помощи пациентов. Проведение исследований в области паллиативной помощи в целом, особенно в СНСУД, наталкивается на ряд значительных препятствий [29, 94, 98–100]. К ним относят: 5 сложности с выявлением полезных и поддающихся оценке результатов; 5 недостаточное финансирование исследований; 5 отсутствие национальных и системных стратегий в отношении исследований; 5 недостаточная разработанность инфраструктуры и культуры исследований в СНСУД , включая адекватное и своевременное утверждение этичности исследований; а также 5 недостаток исследовательских навыков и непомерная нагрузка на специалистов из-за большого числа пациентов в СНСУД. Несмотря на то что необходимо приложить все усилия для уменьшения или устранения всех препятствий, в этой главе основное внимание уделено приоритетным направлениям исследований ППД. Предложен широкий спектр национальных и глобальных направлений, в том числе изучение следующего [95, 101–104]: 5 потребности в ППД в конкретных районах (анализ ситуации); 5 относительной эффективности мероприятий по контролю боли и других симптомов [95]; 5 клинических результатов, например, качества жизни; 5 эффективности обучения паллиативной помощи (знаниям и навыкам); 5 наличия и степени реализации политики в отношении паллиативной помощи; 5 оптимальных моделей помощи; 5 доверия к медицинскому персоналу; 5 этических вопросов; 5 и стоимости и экономической эффективности паллиативной помощи. Глава 8. Научные исследования по паллиативной помощи детям и улучшение ее качества54 Оценка потребности в паллиативной помощи или анализ текущей ситуации Для разработки служб паллиативной помощи, которые приносили бы оптимальную пользу конкретной группе населения, необходимо изначально выделить наиболее распро- страненные и наиболее тяжелые виды страданий. Если таких данных о целевой группе на- селения нет, то анализ ситуации с паллиативной помощью должен оценивать все катего- рии страданий: физические, психологические, социальные и духовные. Целевая группа может быть как маленькой, так и большой: только одно сообщество, пациенты одной кли- ники [105–107] либо даже целый регион или страна [108, 109]. При анализе ситуации можно использовать несколько подробных опросов [109] или только один короткий. В идеале дан- ные о страданиях необходимо собирать непосредственно у пациентов, а не у родственников или врачей. Однако из-за того, что маленькие дети не могут отвечать на вопросы, то дан- ные можно получить от родственников либо с помощью валидированных методов оценки симптомов у детей, которые не умеют говорить [110, 111]. Дети более старшего возраста, испытывающие сильный дискомфорт или находящиеся в терминальном состоянии, зача- стую не в состоянии участвовать в длительных опросах. Следовательно, лучше использовать очень краткие опросники, которые, тем не менее, затрагивают все виды страданий. Одним из примеров служит Шкала паллиативных исходов, которая существует в нескольких фор- мах для различных групп населения и переведена на несколько языков [112, 113]. Данный опросник может дать полезную информацию как для исследователей, так и для врачей. Он достаточно краткий для включения в обычные больничные или клинические бланки, ис- пользуемые при оформлении истории болезни и физикальном исследовании. В последу- ющем эти бланки (электронные и бумажные) можно использовать как для анализа ситу- ации о паллиативной помощи, так и для обеспечения качества при условии соблюдения соответствующих этических норм исследования [105]. При разработке оптимальной службы паллиативной помощи населению также необходимо понимание общих культурных и религиозных концепций болезни, лечения и смерти, а также общего отношения к медицинским работникам и системе здравоохранения [114–119]. Кроме того, отношение детей к болезни, лечению и смерти меняется вместе с их физическим, эмо- циональным, психологическим и духовным развитием. Кроме того, на отношение абсолютно всех людей влияет их личный опыт [120]. Таким образом, необходимо изучать переживания де- тей с серьезными или опасными для жизни заболеваниями, а также их семей в конкретных ге- ополитических, культурных, религиозных и экономических условиях. Отдельного анализа за- служивает отношение самих медицинских работников к паллиативной помощи на всех уров- нях. Так, часто встречается иррациональный страх назначения опиоидов, который обычно приводит к ухудшению качества помощи и ее результатов [121]. Если выявлена опиоидофобия, то эту проблему можно разрешить посредством образовательных мероприятий. Оптимальная паллиативная помощь детям Необходимо изучать доступность эффективной паллиативной помощи в целом и у детей в частности, причем в последнем случае нехватка исследований ощущается особенно остро. Проведение исследований по безопасности и относительной эффективности паллиативных 55Оптимальная паллиативная помощь детям лекарственных средств у детей затруднено по многим причинам. В дополнение к вышепе- речисленным препятствиям сюда относится относительно небольшое количество потен- циальных субъектов исследования, неспособность детей дать информированное согласие и необходимость в разработке этических норм для защиты уязвимых субъектов. Тем не ме- нее ВОЗ предложила подробные и ранжированные приоритеты, касающиеся исследований фармакологического лечения хронической боли у детей (табл. 11). Таблица 11. Приоритеты ВОЗ в отношении исследований фармакологического лечения хронической боли у детей с соматическими заболеваниями Первая группа приоритетов ƒ Оценка стратегии двухэтапного лечения. ƒ Исследование сильных опиоидов — альтернатив морфина (сравнительные испытания препаратов с точки зрения эффективности, побочных эффектов и применимости). ƒ Исследования наркотических анальгетиков средней силы (например, трамадола). ƒ Долгосрочные данные по безопасности, касающиеся лекарственных средств первого выбора (ибупрофен/ парацетамол) Вторая группа приоритетов (нейропатическая боль) ƒ Антидепрессанты, в частности трициклические и СИОЗС, а также новые препараты класса СИОЗСН при перси- стирующей нейропатической боли у детей. Габапентин при персистирующей нейропатической боли у детей. ƒ Кетамин как дополнение к опиоидам при рефрактерной нейропатической боли у детей, страдающих хроническими заболеваниями Третья группа приоритетов ƒ РКИ путей введения опиоидов, альтернативных пероральному (включая РКИ, которые сравнивают подкожное и внутривенное введение) Четвертая группа приоритетов ƒ Обновление кокрейновских обзоров по смене опиоидов, в том числе у детей. ƒ РКИ смены опиоидов и пересчета их доз в разных возрастных группах. ƒ РКИ опиоидов короткого действия при «прорывной» боли у детей Другие области исследования ƒ Исследовательская и психометрическая валидация методов оценки хронической боли по поведению паци- ента (у новорожденных, грудных детей и детей, которые не умеют разговаривать или страдают когнитивными нарушениями). ƒ Проспективные клинические исследования протоколов чередования опиоидов и их эффективности с точки зрения профилактики побочных эффектов, роста толерантности к препарату и повышения его дозы. ƒ Разработка делимых или диспергируемых пероральных твердых лекарственных форм парацетамола и ибупрофена. ƒ Разработка рецептур для приготовления ex tempore жидких пероральных препаратов морфина. Рас- пространение доступной информации о стабильных лекарственных формах для приготовления ex tempore. ƒ Пероральные твердые лекарственные формы опиоидных анальгетиков для детей. ƒ Исследование эквивалентных доз опиоидных анальгетиков при их замене в разных возрастных группах РКИ — рандомизированные контролируемые исследования; СИОЗС — селективные ингибиторы обратного захвата серотонина; СИОЗСН — селективные ингибиторы обратного захвата серотонина и норадреналина. Глава 8. Научные исследования по паллиативной помощи детям и улучшение ее качества56 Непрерывный сбор данных об интеграции, доступности , качестве и результатах паллиативной помощи детям Степень интеграции ППД в систему здравоохранения и ее доступность можно оце- нить при помощи небольшого числа показателей, таких как разработанные ВОЗ для пе- риодической проверки способности любой страны мира бороться с неинфекцион- ными заболеваниями [122]. Сбор подобных данных позволяет ответить на следующие вопросы. 5 Предоставляется ли государственное финансирование ППД? 5 Существует ли национальная политика, охватывающая ППД, и включает ли национальная политика в сфере педиатрии паллиативную помощь? 5 Работает ли такая политика, находится в стадии развития или неэффективна? 5 Есть ли в наличии морфин в пероральной форме более чем в 50 % стационарных и амбулаторных педиатрических учреждений здравоохранения? 5 Доступна ли в системе общественного здравоохранения паллиативная помощь более чем 50 % педиатрических пациентов? 5 Доступна ли в системе общественного здравоохранения паллиативная помощь на дому более 50 % педиатрических пациентов? Для периодической оценки качества и результатов ППД часто применяются те же инстру- менты, что и при анализе ситуации с паллиативной помощью. Однако по возможности сле- дует применять одобренную ВОЗ оценку медицинских технологий (ОМТ) для системати- ческого анализа свой ств, эффектов и/или последствий для здоровья того или иного вмеша- тельства (рис. 6) [123]. ОМТ охватывает как прямые, ожидаемые последствия вмешательств, так и их косвенные, не предполагаемые последствия. ОМТ используется для разработки обоснованной политики и принятия решений в области здравоохранения, в первую очередь решений о том, как наилучшим образом распределить ограниченные средства на вмешатель- ства в сфере здоровья. Оценка проводится междисциплинарными группами с использовани- ем ясных аналитических рамок, выстроенных на основе клинической, эпидемиологической, экономической и другой информации и методологии. ОМТ применима к таким вмешатель- ствам, как включение ухода на дому в систему государственного медицинского страхования, развертывание широких программ общественного здравоохранения, например, програм- мы паллиативной помощи, выбор приоритетов в области здравоохранения, определение мероприятий в области здравоохранения, которые приносят наибольшую пользу здоровью и предлагают оптимальное соотношение цены и качества, а также разработка клинических рекомендаций. Все поставщики ППД независимо от условий оказания медицинской помощи долж- ны стремиться к постоянному улучшению качества своих услуг. Основным источ- ником информации для улучшения услуг служат данные по показателям качества. Базовая структура показателей качества, которую можно использовать для оцен- ки ключевых составляющих национальных или региональных программ, описана в табл. 12. Эти показатели взяты из предыдущей рекомендации ВОЗ для менеджеров по планированию [7]. 57Непрерывный сбор данных об интеграции, доступности… Рис. 6. Оценка технологий здравоохранения — инструмент для информирования лиц, принимающих решения касательно всеобщего охвата медико- санитарными услугами СНУД — страны с низким уровнем доходов; ССУД — страны со средним уровнем доходов Источник: ВОЗ 2018 [124]. Таблица 12. Примеры показателей для оценки расширенного доступа к паллиативной помощи в рамках первичной медико- санитарной помощи Сфера применения Показатель Единица измерения Политика Наличие в области педиатрии действую- щей национальной стратегии или плана, включающего план/программу паллиа- тивной помощи Да/Нет Базовый пакет ППД и облегчения симпто- мов включен в ВОМСУ Да/Нет Существуют ли на региональном уровне законы и нормативные акты по безопас- ному и эффективному назначению опио- идов, соответствующие международным конвенциям о наркотиках? Да/Нет На уровне сообщества? Да/Нет Образование Доля медицинских вузов, в которых курс ППД включен в учебную программу для студентов Отношение числа медицинских вузов, об- учающих студентов ППД, к общему числу медицинских вузов Глава 8. Научные исследования по паллиативной помощи детям и улучшение ее качества58 Сфера применения Показатель Единица измерения Доля медицинских училищ, в которых курс ППД включен в учебную программу для медсестер Отношение числа медицинских училищ с наличием обучения ППД к общему числу медицинских училищ Доля медицинских колледжей (по под- готовке старших медсестер, помощни- ков врачей, практикующих медсестер или фельдшеров), в которых курс ППД включен в учебную программу учащихся Отношение числа медицинских колледжей с наличием обучения ППД к общему числу медицинских колледжей Доступность услуг Включение ППД в официальный список ус- луг, предоставляемых на уровне первичной медицинской помощи Да/Нет Число населенных пунктов, в которых есть службы ППД Отношение числа населенных пунктов, в которых есть службы ППД , к общему числу населенных пунктов Базовый набор лекарственных средств Потребление сильных опиоидов на каж- дый случай смерти от онкологических заболеваний Среднее число миллиграммов морфина в пероральной форме на число случаев смерти Все базовые лекарственные средства ВОЗ для оказания паллиативной помощи вклю- чены в национальный список базовых ле- карственных средств Да/Нет Доля районов, где морфин в пероральной форме доступен на уровне первичной ме- дицинской помощи Отношение районов, где морфин в пер- оральной форме доступен на уровне пер- вичной медицинской помощи, к общему числу районов Результаты Процент детей, имевших доступ к паллиа- тивной помощи на момент смерти Процент умерших пациентов, имевших доступ к ППД Источник: ВОЗ 2016 [7]; Knaul et al. 2017 [3]. 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Резолюция 70-й сессии Всемирной ассамблеи здравоохранения WHA70.12: Профилактика рака и борьба с ним в контексте комплексного подхода (выдержки) 68 Приложение 3. Медицина, доброжелательная к ребенку: памятка для медицинских работников (выдержки) 69 Приложение 4. Резолюция 67-й сессии Всемирной ассамблеи здравоохранения WHA67.19 по укреплению паллиативной помощи как одного из компонентов комплексного лечения на протяжении всего жизненного цикла 73 Приложение 5. Примеры типовых учебных планов по паллиативной помощи детям 78 Приложение 6. Ссылки 82 Приложение 7. Глоссарий 84 66 Приложение 1 Конвенция о правах ребенка (выдержки) Принята и открыта для подписания, ратификации и присоединения резолюцией 44/25 Генеральной Ассамблеи ООН от 20 ноября 1989 г. Вступила в силу 2 сентября 1990 г. http://www.ohchr.org/Documents/ProfessionalInterest/crc.pdf ЧАСТЬ I Статья 3 1. Во всех действиях, касающиеся детей, независимо от того, предпринимаются ли они государствен- ными или частными социальными учреждениями, судами, административными или законодатель- ными органами, первоочередное внимание уделяется лучшему обеспечению интересов ребенка. 2. Государства- участники обязуются обеспечить ребенку такую защиту и заботу, которые необхо- димы для его благополучия, принимая во внимание права и обязанности его родителей, опеку- нов или других лиц, несущих за него ответственность по закону, и с этой целью принимают все соответствующие законодательные и административные меры. 3. Государства- участники обеспечивают, чтобы учреждения, службы и органы, ответственные за за- боту о детях или их защиту, отвечали нормам, установленным компетентными органами, в част- ности, в области безопасности и здравоохранения и с точки зрения численности и пригодности их персонала, а также компетентного надзора. Статья 23 1. Государства- участники признают, что неполноценный в умственном или физическом отношении ре- бенок должен вести полноценную и достойную жизнь в условиях, которые обеспечивают его досто- инство, способствуют его уверенности в себе и облегчают его активное участие в жизни общества. 2. Государства- участники признают право неполноценного ребенка на особую заботу и поощряют и обеспечивают предоставление при условии наличия ресурсов имеющему на это право ребенку и ответственным за заботу о нем помощи, о которой подана просьба и которая соответствует со- стоянию ребенка и положению его родителей или других лиц, обеспечивающих заботу о ребенке. 3. В признание особых нужд неполноценного ребенка помощь в соответствии с пунктом 2 насто- ящей статьи предоставляется, по возможности, бесплатно с учетом финансовых ресурсов роди- телей или других лиц, обеспечивающих заботу о ребенке, и имеет целью обеспечение неполно- ценному ребенку эффективного доступа к услугам в области образования, профессиональной подготовки, медицинского обслуживания, восстановления здоровья, подготовки к трудовой дея- тельности и доступа к средствам отдыха таким образом, который приводит к наиболее полному, по возможности, вовлечению ребенка в социальную жизнь и достижению развития его личности, включая культурное и духовное развитие ребенка. 4. Государства- участники способствуют в духе международного сотрудничества обмену соответ- ствующей информацией в области профилактического здравоохранения и медицинского, пси- хологического и функционального лечения неполноценных детей, включая распространение информации о методах реабилитации, общеобразовательной и профессиональной подготовки, а также доступ к этой информации, с тем чтобы позволить государствам- участникам улучшить Приложение 1. Конвенция о правах ребенка (выдержки) 67 свои возможности и знания и расширить свой опыт в этой области. В этой связи особое внимание должно уделяться потребностям развивающихся стран. Статья 24 1. Государства- участники признают право ребенка на пользование наиболее совершенными ус- лугами системы здравоохранения и средствами лечения болезней и восстановления здоровья. Государства- участники стремятся обеспечить, чтобы ни один ребенок не был лишен своего права на доступ к подобным услугам системы здравоохранения. 2. Государства- участники добиваются полного осуществления данного права и, в частности, принимают необходимые меры для: (a) снижения уровня смертности младенцев и детской смертности; (b) обеспечения предоставления необходимой медицинской помощи и охраны здоровья всем детям, уделяя первоочередное внимание развитию первичной медико- санитарной помощи; (с) борьбы с болезнями и недоеданием, в т. ч. в рамках первичной медико- санитарной помощи, путем, среди прочего, применения легкодоступной технологии и предоставления достаточ- но питательного продовольствия и чистой питьевой воды, принимая во внимание опасность и риск загрязнения окружающей среды; (d) предоставления матерям надлежащих услуг по охране здоровья в дородовой и послеродо- вой периоды; (e) обеспечения осведомленности всех слоев общества, в частности родителей и детей, о здо- ровье и питании детей, преимуществах грудного кормления, гигиене, санитарии среды оби- тания ребенка и предупреждении несчастных случаев, а также их доступа к образованию и их поддержки в использовании таких знаний; (f) развития просветительной работы и услуг в области профилактической медицинской помо- щи и планирования размера семьи. 3. Государства- участники принимают любые эффективные и необходимые меры с целью упразд- нения традиционной практики, отрицательно влияющей на здоровье детей. 4. Государства- участники обязуются поощрять международное сотрудничество и развивать его с целью постепенного достижения полного осуществления права, признаваемого в настоящей статье. В этой связи особое внимание должно уделяться потребностям развивающихся стран. Статья 27 1. Государства- участники признают право каждого ребенка на уровень жизни, необходимый для физического, умственного, духовного, нравственного и социального развития ребенка. 2. Родитель(и) или другие лица, воспитывающие ребенка, несут основную ответственность за обе- спечение в пределах своих способностей и финансовых возможностей условий жизни, необхо- димых для развития ребенка. 3. Государства- участники в соответствии с национальными условиями и в пределах своих возмож- ностей принимают необходимые меры по оказанию помощи родителям и другим лицам, вос- питывающим детей, в осуществлении этого права и, в случае необходимости, оказывают мате- риальную помощь и поддерживают программы, особенно в отношении обеспечения питанием, одеждой и жильем. 4. Государства- участники принимают все необходимые меры для обеспечения восстановления содержания ребенка родителями или другими лицами, несущими финансовую ответствен- ность за ребенка, как внутри государства- участника, так и из-за рубежа. В частности, если ли- цо, несущее финансовую ответственность за ребенка, и ребенок проживают в разных государ- ствах, государства- участники способствуют присоединению к международным соглашениям или заключению таких соглашений, а также достижению других соответствующих договоренностей. 68 Приложение 2 Профилактика рака и борьба с ним в контексте комплексного подхода (выдержки) Резолюция 70-й сессии Всемирной ассамблеи здравоохранения WHA70.12: http://apps.who.int/gb/ebwha/pdf files/WHA70/A70 R12-en.pdf 31 Мая 2017 г. 70-я сессия Всемирной ассамблеи здравоохранения Принимая во внимание доклад, осознавая, что ранняя диагностика и быстрое и надлежащее ле- чение, включая паллиативную помощь и облегчение боли, могут снизить смертность и улучшить ре- зультаты и качество жизни онкологических больных; о профилактике рака и борьбе с ним в контексте комплексного подхода… 1 НАСТОЯТЕЛЬНО ПРИЗЫВАЕТ государства- члены с учетом их контекста и институциональных и правовых рамок, а также национальных приоритетов: (10) разрабатывать и внедрять научно обоснованные протоколы ведения онкологических больных, как детей, так и взрослых, включая паллиативную помощь; (15) обеспечить предоставление обезболивающих средств и оказание паллиативной помощи в соответствии с резолюцией WHA67.19 (2014 г.) о совершенствовании паллиативной ме- дицинской помощи в качестве одного из компонентов комплексного лечения на протяже- нии всего жизненного цикла; (17) содействовать раннему выявлению потребностей пациентов и расширять доступ к мерам реабилитации, в т. ч. в том, что касается трудоустройства, психосоциальной и п аллиативной помощи; (19) продолжать работу по формированию партнерских связей между государственными орга- нами и гражданским обществом, опираясь на помощь неправительственных организаций, занимающихся вопросами охраны здоровья, и организаций, защищающих интересы паци- ентов, и оказывать соответствующую поддержку в предоставлении услуг по профилакти- ке онкологических заболеваний и борьбе с ними, лечению этих болезней и организации ухода за больными, включая паллиативную помощь. 69 Приложение 3 Медицина, доброжелательная к ребенку: памятка для медицинских работников (выдержки) Инициатива «Медицина доброжелательного отношения к ребенку» (МДОР) http://www.cfhiuk.org/publications/cfhi manual/cfhi manual.pdf Введение Это руководство по оценке и внедрению программы «Дружественное ребенку здравоохране- ние» (CFH), написанное для медицинских работников, которые планируют, организуют, предостав- ляют или оказывают помощь детям и их семьям. В руководстве дается определение CFH путем из- менения статей Конвенции ООН о правах ребенка (UNCRC) в простые «Стандарты» CFH, которые можно применять в повседневной практике. Он предоставляет собой метод и процесс оценки, а так- же простую структуру для внесения любых желаемых или необходимых улучшений для того, чтобы дети и их семьи могли получить «наилучшее возможное» медицинское обслуживание независимо от обстоятельств. «Инициатива по внедрению дружественной детям системы здравоохранения» (CFHI) — это программа по повышению здоровья детей, которая была разработана Childhealth Advocacy International (CAI), Charity No: 1 071 486, в сотрудничестве с Детским фондом ООН (ЮНИСЕФ), Департаментом здравоохранения детей и подростков и Департаментом развития ВОЗ, Королевской коллегией по педиатрии и здоровья детей (RCPCH), Королевской коллегией медсестер (RCN), Великобритания. Что «лучше всего» из возможного для системы здравоохранения? Применение стандартов CFH в их лучшем виде. Лучшее, что возможно: ƒ Принимает во внимание «лучшие интересы» ребенка ƒ Охватывает профилактические, лечебные и паллиативные аспекты медицинской помощи с уче- том самой современной доказательной базы на каждом этапе оказания медицинской помощи ƒ Доступно и эффективно ƒ Приемлемо, принимая во внимание имеющиеся ресурсы (человеческие и материальные) и технологии, а также потребности других детей ƒ Ориентируется на ребенка Приложения70 СТАНДАРТ 7: Распознание и облегчение боли и дискомфорта «Медицинские работники, организации и отдельные работники здравоохранения разделяют между собой ответственность за защиту детей и снижение страха, беспокойства и страданий детей и их семей путем обеспечения того, что они смогли распознать, оценить и облегчить физическую и психологическую боль и дискомфорт детей». Поддерживающие критерии 1. Лечение боли и других симптомов/службы паллиативной помощи с ведущими медицинскими работниками и/или многопрофильной бригадой. 2. Системы ухода, руководства и рабочие пособия (например, инструменты по оценке и облегчению боли), которые помогают распознать и оценить симптомы и назначить необходимые мероприятия. 3. Использование по возможности доказанных рекомендаций для облегчения симптомов, которые включают протоколы по облегчению различных типов боли и других симптомов (как физиче- ских, так и психологических), а также информацию о том, как использовать нефармакологические и фармакологические обезболивающие методы в разных возрастных группах. 4. Материальные ресурсы, в т. ч.: ƒ Надежная и безопасная поставка бесплатных или доступных по цене основных лекарственных средств для снятия болевых симптомов, которые включают опиоиды и не опиоиды; ƒ Игрушки для отвлечения ребенка и другие возможности, которые можно использовать в качестве нефармакологического облегчения боли и других страданий. 5. Использование индивидуальных планов боли (и других симптомов), составленных самостоятельно детьми и их родителями/лицами, осуществляющими уход. 6. Психосоциальная поддержка детей, семей и медицинских работников. Обсуждение Пилотный проект выявил, что в странах- участницах имеется большое количество детей, кото- рые страдают от неконтролируемой боли и других неприятных симптомов, как физических, так и психологических. Новые технологии и потенциальные достижения в области лечения не всегда защищают или улуч- шают лечение этих симптомов, а могут, наоборот, иногда выступать в виде их причины. Рутинные про- цедуры (без обезболивания), такие как перевязка ран, являются частыми причинами неоправданной боли и страданий для ребенка. В некоторых странах ребенок может быть парализован препаратами или частично успокоен без одновременного и надлежащего облегчения боли. Государство должно играть свою роль в улучшении положения детей, не ограничивая и не блоки- руя доступ к жизненно важным анальгетикам (включая опиоиды) из-за проблем безопасности или устаревших и ошибочных представлений об их пригодности для использования у детей и неуместных опасений по поводу риска наркомании. В странах, где имеются в наличии опиоиды, может возникнуть нежелание их использования из-за этих ошибочных убеждений, а также из-за отсутствия понимания того, как их использовать. Однако сле- дует понимать, что проблемы со здоровьем влияют на ребенка и его семью намного хуже, чем на ме- дицинского работника, когда он не может помочь детям, особенно если у ребенка хроническое или неизлечимое заболевание или любое другое состояние, ограничивающее жизнь. Это является этически неправильным и расценивается как невыполнение своих обязанно- стей по отношению к ребенку, страдающему от неконтролируемой боли или других симптомов. Особенно это касается детей с инвалидностью, которая связана с хроническими симптомами, или Приложение 3. Медицина, доброжелательная к ребенку: памятка для медицинских работников… 71 детей с неизлечимыми заболеваниями и находящихся в терминальном состоянии. Облегчение бо- ли и неприятных симптомов не всегда связано с излечением, а иногда лишь с тем, чтобы сделать нынешнюю жизнь более терпимой (т. е. улучшить качество оставшейся жизни). Новые техноло- гии и потенциальные достижения в области медицины не всегда позволяют улучшить лечение этих симптомов. Рутинные процедуры (без обезболивания), такие как перевязка ран, являются частыми причинами ненужной боли и страданий для ребенка. В некоторых странах ребенок может быть па- рализован препаратами или частично успокоен без одновременного и надлежащего облегчения боли. Государство должно играть свою роль в улучшении положения для детей, не ограничивая и не бло- кируя доступ к жизненно важным анальгетикам (включая опиоиды) из-за проблем безопасности или устаревших и ошибочных представлений об их пригодности для использования у детей и неуместных опасений по поводу риска наркомании. Эффективность облегчения боли и других неприятных симптомов от рождения до совершеннолетия можно улучшить, если работники здравоохранения: ƒ будут более осведомлены о страданиях и дискомфорте, которые могут испытывать все дети (включая новорожденных) из-за боли и других симптомов; ƒ всегда будут предвидеть боль у ребенка и другие тревожные симптомы; ƒ будут уделять более пристальное внимание облегчению боли и других неприятных симптомов у каждого ребенка; ƒ будут более широко использовать анальгетики, как наркотические, так и ненаркотические; ƒ будут понимать и использовать простые нефармацевтические методы, которые могут помочь (поддерживающие, когнитивные, поведенческие и физические); ƒ будут больше знать обо всех вещах, которые могут усугубить боль или другие симптомы, и предвидеть их. Для «улучшения ситуации» необходимо, чтобы у работников здравоохранения была возможность основного (во время начальной подготовки) и регулярного обучения/тренинга по выявлению, оценке и лечению боли и других симптомов. Также оптимальной практике способствует наличие квалифици- рованных медицинских работников, которые обеспечивают контроль за лечением боли и других сим- птомов. Известно, что наличие междисциплинарной команды, специализирующейся на облегчении симптомов и других аспектах паллиативной помощи, и использование стандартизованных руководств по лечению боли и других неприятных симптомов являются эффективными способами улучшения помощи и обмена передовым опытом. Рядовой медицинский работник, работающий с ребенком и его опекунами (которые знают ребенка лучше всего), зачастую может уменьшить боль и другие симптомы путем: ƒ планирования ухода за каждым отдельным ребенком, поскольку каждый ребенок по-разному реагирует на боль и другие неприятные симптомы; ƒ возможности предвидеть боль и принимать эффективные меры и/или давать препараты до по- явления симптомов, например, перед процедурой или операцией. Дети с рецидивирующими симптомами стресса не должны ждать, пока симптомы снова появятся, прежде чем получить медикаментозную терапию; ƒ использования инструментов оценки боли/симптомов для того, чтобы распознать и оценить симптомы и обеспечить тот уход, в котором нуждается ребенок; ƒ предписания препаратов таким образом, чтобы не причинять еще больше боли и страданий. Препараты зачастую по-прежнему вводятся болезненным для ребенка способом, например, внутримышечно. Те же самые лекарственные средства часто доступны и одинаково эффективны во внутривенной или пероральной формах, часто по более низкой цене; ƒ отстаивания интересов ребенка, если они сами не в состоянии это сделать. Приложения72 Перед использованием лекарственных препаратов или в местах, где они недоступны, можно сделать многое, чтобы облегчить страдания и сделать процедуры более терпимым, например: ƒ быть честным с ребенком и готовить его к тому, что процедура может быть болезненной, а так- же рассказать, что может помочь справиться с ситуацией. Недоверие к медицинским работни- кам усугубляет проведение манипуляций; ƒ использование игр, отвлекающих детей, что может помочь в купировании боли и других симптомов; ƒ использование тепла, холода, прикосновений и других мер по обеспечению комфорта, т. к. они иногда могут помочь уменьшить боль и другие симптомы; ƒ оказание психологической поддержки, быть добрым и вовлекать родителей и других знакомых лиц ребенку, где это возможно. 73 Приложение 4 Резолюция 67-й сессии Всемирной ассамблеи здравоохранения WHA67.19 по укреплению паллиативной помощи как одного из компонентов комплексного лечения на протяжении всего жизненного цикла 24 мая 2014 г. 67-я сессия Всемирной ассамблеи здравоохранения Рассмотрев доклад об укреплении паллиативной помощи в качестве одного из компонентов ком- плексного лечения на протяжении всего жизненного цикла;1 Ссылаясь на резолюцию WHA58.22 о профилактике рака и борьбе с ним, особенно в отношении упоминаемой в ней паллиативной помощи; Принимая во внимание резолюции Комиссии по наркотическим средствам Экономического и Социального Совета ООН 53/4 и 54/6 соответственно о содействии обеспечению наличия доста- точного количества контролируемых на международном уровне наркотиков законного происхожде- ния для использования в медицинских и научных целях и предупреждения их утечки и злоупотребле- ния ими и о содействии обеспечению наличия достаточного количества контролируемых на между- народном уровне наркотиков и психотропных веществ для использования в медицинских и научных целях и предупреждения их утечки и злоупотребления ими; Принимая к сведению специальный доклад Международного комитета по контролю за наркотиками о наличии психоактивных средств, находящихся под международным контролем: обеспечение надлежа- щего доступа для медицинских и научных целей,2 и руководство ВОЗ об обеспечении сбалансирован- ности национальной политики в отношении контролируемых веществ: рекомендации по обеспечению наличия и доступности контролируемых лекарственных средств;3 Принимая во внимание также резолюцию 2005/25 Экономического и социального совета ООН «Обезболивание при помощи опиоидных анальгетиков», памятуя о том, что паллиативная помощь является подходом, позволяющим улучшить качество жизни пациентов (детей и взрослых) и их семей, столкнувшихся с проблемами, связанными с опасным для жизни заболеванием, путем предотвращения и облегчения страданий благодаря раннему выявлению, правильной оценке и лечению боли и других проблем — физических, психосоциальных или духовных; Признавая, что паллиативная помощь, если она показана, имеет исключительно важное значение для улучшения качества жизни, ощущения благополучия, комфорта и человеческого достоинства от- дельных людей, являясь эффективной социально ориентированной услугой здравоохранения, кото- рая придает высокую значимость удовлетворению потребности пациентов в получении адекватной информации о состоянии своего здоровья с учетом личностных и культурных факторов, а также их центральной роли в принятии решений о получаемом лечении; 1 Документ 67/31. 2 Документ E/INCB/2010/1/Supp.1. 3 Обеспечение сбалансированности национальной политики в отношении контролируемых веществ: рекомен- дации по обеспечению наличия и доступности контролируемых лекарственных средств. Женева: Всемирная организация здравоохранения; 2011 г. Приложения74 Подтверждая, что доступ к паллиативной помощи и основным лекарственным средствам для меди- цинских и научных целей, изготовленным из контролируемых веществ, включая опиоидные анальгети- ки, такие как морфин, в соответствии с тремя конвенциями ООН по международному контролю за нар- котиками,4 способствует реализации права на обладание наивысшим достижимым уровнем здоровья и благополучия; Признавая, что оказание паллиативной помощи является одной из этических обязанностей систем здравоохранения и что нравственным долгом работников здравоохранения является облегчение бо- ли и страданий — физических, психосоциальных или душевных — независимо от того, поддается ли за- болевание или патологическое состояние излечению, и что помощь отдельным лицам в конце жизни является одним из важнейших компонентов паллиативной помощи; Признавая, что в настоящее время более 40 млн человек ежегодно нуждаются в паллиативной по- мощи, прогнозируя возрастание потребности в паллиативной помощи в условиях старения населе- ния и роста распространенности неинфекционных и других хронических заболеваний во всем ми- ре, принимая во внимание важное значение паллиативной помощи детям и в этой связи отмечая, что государства- члены должны располагать оценками количества требуемых лекарственных средств, на- ходящихся под международным контролем, включая педиатрические формы лекарственных средств; Осознавая неотложную необходимость включения паллиативной помощи в процесс непрерывно- го оказания помощи, особенно на уровне первичной медико- санитарной помощи, признавая, что не- адекватная интеграция паллиативной помощи в системы здравоохранения и социального обеспече- ния является одним из основных факторов, являющихся причиной отсутствия справедливого доступа к такой помощи; Отмечая, что наличие и надлежащее использование лекарственных средств, находящихся под меж- дународным контролем, для медицинских и научных целей, особенно для облегчения боли и страда- ний, остается на недостаточно высоком уровне во многих странах, и подчеркивая необходимость в том, чтобы государства- члены, при поддержке со стороны Секретариата ВОЗ, Управления ООН по нарко- тикам и преступности и Международного комитета по контролю за наркотиками, обеспечивали, что- бы усилия, направленные на предупреждение утечки наркотических средств и психотропных веществ, находящихся под международным контролем в соответствии с конвенциями ООН по международно- му контролю за наркотиками, не приводили к возникновению ненадлежащих регулятивных барьеров для доступа к таким лекарственным средствам в медицинских целях; Принимая во внимание, что страдания от симптомов, поддающихся лечению, которых можно избе- жать, усугубляются в связи с отсутствием знаний о паллиативной помощи, и подчеркивая необходи- мость непрерывного образования и адекватной подготовки для всех провайдеров медицинской по- мощи в стационарных и амбулаторных учреждениях и других лиц, осуществляющих уход, включая ра- ботников неправительственных организаций и родственников; Признавая наличие различных эффективных с точки зрения затрат и действенных моделей оказания паллиативной помощи, принимая во внимание, что при оказании паллиативной помощи применяет- ся междисциплинарный подход к удовлетворению потребностей пациентов и их семей, и отмечая, что предоставление качественной паллиативной помощи вероятнее всего может быть реализовано при наличии сильных структур взаимодействия между профессиональными провайдерами паллиативной помощи, провайдерами поддерживающей помощи (включая духовную поддержку и консультирова- ние), добровольцами и затронутыми семьями, а также между местным сообществом и провайдерами помощи в случае острых заболеваний и помощи пожилым людям; 4 Единая конвенция ООН о наркотических средствах, 1961 г., с поправками, внесенными в соответствии с про- токолом 1972 г.; Конвенция ООН о психотропных веществах, 1971 г.; Конвенция ООН о борьбе против незаконного оборота наркотических средств и психотропных веществ, 1988 г. Приложение 4. Резолюция 67-й сессии Всемирной ассамблеи здравоохранения WHA67.1.... 75 Признавая также необходимость оказания паллиативной помощи при различных группах забо- леваний (неинфекционные заболевания и инфекционные болезни, включая ВИЧ-инфекцию/СПИД и туберкулез с множественной лекарственной устойчивостью) и во всех возрастных группах; Приветствуя включение паллиативной помощи в определение всеобщего охвата услугами здравоох- ранения и подчеркивая необходимость того, чтобы службы здравоохранения предоставляли комплекс- ную паллиативную помощь на справедливой основе в целях удовлетворения потребностей пациентов в условиях всеобщего охвата услугами здравоохранения; Признавая необходимость адекватных механизмов финансирования программ паллиативной по- мощи, в т. ч. в отношении лекарственных средств и продукции медицинского назначения, особенно в развивающихся странах; Приветствуя включение действий и показателей, касающихся паллиативной помощи, в комплекс- ную глобальную систему мониторинга ВОЗ для профилактики неинфекционных заболеваний и борь- бы с ними и глобальный план действий ВОЗ по профилактике неинфекционных заболеваний и борьбе с ними на 2013–2020 гг.; Отмечая с удовлетворением включение лекарственных средств, необходимых для устранения боли и симптомов при оказании паллиативной помощи, в 18-й Типовой перечень ВОЗ основных лекарствен- ных средств и 4-й Типовой перечень ВОЗ основных лекарственных средств для детей, и высоко оцени- вая усилия Сотрудничающих центров ВОЗ по проблеме боли и паллиативной помощи для расширения доступа к паллиативной помощи; Отмечая с удовлетворением усилия неправительственных организаций и гражданского общества, ко- торые продолжают подчеркивать важное значение паллиативной помощи, включая адекватное наличие и надлежащее использование веществ, находящихся под международным контролем, для медицинских и научных целей, как предусмотрено конвенциями ООН по международному контролю за наркотиками; Признавая факт наличия ограниченного объема услуг паллиативной помощи во многих районах мира и широких масштабов страданий миллионов пациентов и их семей, которых можно было бы из- бежать, и подчеркивая необходимость создания или усиления, в соответствующих случаях, систем здравоохранения, включающих паллиативную помощь как неотъемлемый компонент лечения людей в процессе непрерывного оказания помощи: 1. ПРИЗЫВАЕТ государства- члены:5 ƒ разрабатывать, усиливать и осуществлять, в соответствующих случаях, меры политики в от- ношении паллиативной помощи в целях содействия всестороннему укреплению систем здра- воохранения для интеграции основанных на фактических данных, эффективных с точки зре- ния затрат и предоставляемых на справедливой основе услуг по оказанию паллиативной по- мощи в процесс непрерывного оказания помощи на всех уровнях, уделяя особое внимание первичной медико- санитарной помощи, оказанию помощи на уровне местных сообществ и на дому, а также программам обеспечения всеобщего охвата; ƒ обеспечить адекватное внутреннее финансирование и распределение кадровых ресурсов, в соответствующих случаях, для осуществления инициатив в области паллиативной помощи, включая разработку и осуществление мер политики в отношении паллиативной помощи, об- учение и подготовку кадров и инициативы по повышению качества, а также способствовать обеспечению наличия и надлежащего использования основных лекарственных средств, вклю- чая контролируемые лекарственные средства для симптоматической терапии; ƒ предоставлять основную поддержку, в т. ч. межведомственную, семьям, местным сообще- ствам, добровольцам и другим лицам, осуществляющим уход, под наблюдением квалифи- цированных специалистов, в соответствующих случаях; 5 И, в соответствующих случаях, региональные организации экономической интеграции. Приложения76 ƒ стремиться к включению паллиативной помощи в качестве неотъемлемого компонента в про- граммы непрерывного обучения и подготовки, предлагаемые лицам, осуществляющим уход, в соответствии с их функциями и обязанностями, согласно следующим принципам: (a) основная подготовка и непрерывное обучение в области паллиативной помощи должны быть интегрированы в качестве обязательного элемента во все программы профессио- нальной подготовки врачебного и среднего медицинского персонала, а также программы повышения квалификации лиц, осуществляющих уход, по месту работы на уровне первич- ной медико- санитарной помощи, включая работников здравоохранения, лиц, осуществля- ющих уход, удовлетворяя духовные потребности пациентов, и социальных работников; (b) программы подготовки промежуточного уровня должны предлагаться всем работникам здравоохранения, которые на регулярной основе работают с пациентами, страдающими опасными для жизни заболеваниями, включая лиц, работающих в области онкологии, инфекционных болезней, педиатрии, гериатрии и внутренних болезней; (c) должны быть разработаны программы специализированной подготовки в области палли- ативной помощи для обучения работников здравоохранения, которые будут оказывать комплексную помощь пациентам, нуждающимся в получении помощи более высокого уровня, чем обычная симптоматическая терапия; ƒ оценивать потребности в оказании паллиативной помощи в стране, включая потребно- сти в лекарственных средствах для устранения боли, и предпринимать совместные уси- лия для обеспечения адекватного запаса основных лекарственных средств, не допуская их дефицита; ƒ изучать и, при необходимости, пересматривать национальное и местное законодательство и меры политики в отношении контролируемых лекарственных средств на основе методи- ческого руководства ВОЗ6 о расширении доступа и рационального использования обезбо- ливающих лекарственных средств в соответствии с конвенциями ООН по международному контролю за наркотиками; ƒ обновлять, при необходимости, национальные перечни основных лекарственных средств с учетом недавнего добавления разделов, касающихся лекарственных средств в отношении боли и паллиативной помощи, в Типовой перечень ВОЗ основных лекарственных средств и Типовой перечень ВОЗ основных лекарственных средств для детей; ƒ способствовать развитию партнерских связей между органами государственного управле- ния и гражданским обществом, включая организации пациентов, для поддержки, в соответ- ствующих случаях, предоставления услуг пациентам, нуждающимся в паллиативной помощи; ƒ осуществлять действия, предусмотренные глобальным планом действий ВОЗ по профилакти- ке неинфекционных заболеваний и борьбе с ними на 2013–2020 гг., и проводить мониторинг; 2. ПРЕДЛАГАЕТ Генеральному директору: ƒ обеспечить, чтобы паллиативная помощь являлась неотъемлемым компонентом всех со- ответствующих глобальных планов по борьбе с болезнями и укреплению систем здра- воохранения, в т. ч. касающихся неинфекционных заболеваний и всеобщего охвата услу- гами здравоохранения, а также ее включение в планы сотрудничества на уровне стран и регионов; ƒ обновить или разработать, в соответствующих случаях, научно обоснованные рекомендации и средства в отношении паллиативной помощи, в т. ч. возможные средства устранения боли 6 Обеспечение сбалансированности национальной политики в отношении контролируемых веществ: рекомен- дации по обеспечению наличия и доступности контролируемых лекарственных средств. Женева: Всемирная организация здравоохранения; 2011 г. Приложение 4. Резолюция 67-й сессии Всемирной ассамблеи здравоохранения WHA67.1.... 77 у взрослых и детей, включая разработку рекомендаций ВОЗ по фармакологическому лечению боли, и обеспечить их адекватное распространение; ƒ обновить и усилить, в соответствующих случаях, научно обоснованные рекомендации по ин- теграции паллиативной помощи в национальные системы здравоохранения в отношении раз- ных групп заболеваний и уровней помощи, обеспечивающие адекватное соблюдение этиче- ских принципов, касающихся оказания всесторонней паллиативной помощи, таких как спра- ведливый доступ, помощь, ориентированная на пациента и обеспечивающая его уважение, и участие местного сообщества, а также обеспечить информационную основу для обучения методам устранения боли и симптомов и психосоциальной поддержки; ƒ продолжать, в рамках Программы ВОЗ по обеспечению доступа к контролируемым ле- карственным средствам, оказывать поддержку государствам- членам в изучении и совер- шенствовании национального законодательства и мер политики в целях обеспечения ба- ланса между предупреждением неправильного использования, утечки и незаконного распространения контролируемых веществ и надлежащим доступом к контролируемым ле- карственным средствам в соответствии с конвенциями ООН по международному контролю за наркотиками; ƒ изыскивать возможные пути расширения наличия и доступности лекарственных средств, используемых для оказания паллиативной помощи, путем консультаций с государствами- членами, соответствующими сетями и гражданским обществом, а также с другими между- народными заинтересованными сторонами, в соответствующих случаях; ƒ сотрудничать с Международным комитетом по контролю за наркотиками, Управлением ООН по наркотикам и преступности, министерствами здравоохранения и другими соответствую- щими органами для расширения наличия и обеспечения сбалансированного контроля за кон- тролируемыми лекарственными средствами для устранения боли и симптомов; ƒ продолжать сотрудничество с Международным комитетом по контролю за наркотиками для оказания содействия государствам- членам в проведении точных оценок, с тем чтобы обеспе- чить наличие лекарственных средств для устранения боли и оказания паллиативной помо- щи, в т. ч. путем более эффективного выполнения рекомендаций Руководства по исчислению потребностей в веществах, находящихся под международным контролем;7 ƒ сотрудничать с ЮНИСЕФ и другими соответствующими партнерами в расширении и оказа- нии паллиативной помощи для детей; ƒ осуществлять мониторинг ситуации в отношении паллиативной помощи в мире, оцени- вая прогресс, достигнутый в рамках различных инициатив и программ в сотрудничестве с государствами- членами и международными партнерами; ƒ работать с государствами- членами в целях содействия адекватному финансированию и улуч- шению сотрудничества для программ и научных инициатив в области паллиативной помощи, в частности в странах с ограниченными ресурсами, в соответствии с Программным бюдже- том на 2014–2015 гг., в котором затрагиваются вопросы паллиативной помощи; ƒ оказывать содействие проведению научных исследований в отношении эффективных моделей оказания паллиативной помощи в СНСУД, принимая во внимание примеры передового опыта; ƒ представить доклад в 2016 г. 69-й сессии Всемирной ассамблеи здравоохранения о ходе выполнения этой резолюции. 7 Международный комитет по контролю за наркотиками, Всемирная организация здравоохранения. Руководство по вычислению потребностей в веществах, находящихся под международным контролем. Нью- Йорк: ООН; 2012 г. 78 Приложение 5 Примеры типовых учебных планов по паллиативной помощи детям Пример А. Основная учебная программа для подготовки врачей, клиницистов, помощников врачей, практикующих медсестер Первый день 1.1. Базовый курс по паллиативной помощи детям: цели и повестка дня Слайд-презентация 1.2. Эпидемиология серьезных угрожающих жизни проблем со здоровьем у детей в стране Слайд-презентация 1.3. Паллиативная помощь детям: определение, принципы, доступность и моральный долг Слайд-презентация/обсуждение в группе 1.4. Этические проблемы и связь между врачом и пациентом при оказании паллиативной помо- щи детям Слайд-презентация/обсуждение в группе 1.5. Оценка паллиативной помощи детям Слайд-презентация 1.6. Рост и развитие детей, нуждающихся в паллиативной помощи Слайд-презентация 1.7. Помощь детям в том, чтобы справиться с заболеванием в медицинских условиях Слайд-презентация/обсуждение в группе Второй день 2.1. Оценка боли и ее лечение у детей Слайд-презентация 2.2. Нефармакологические подходы к обезболиванию у детей Слайд-презентация 2.3. Подготовка ребенка к проведению медицинских процедур Слайд-презентация 2.4. Рассмотрение клинических случаев у детей Обсуждение в небольших группах Третий день 3.1. Оценка и лечение одышки Слайд-презентация/обсуждение 3.2. Оценка и лечение тошноты/рвоты Слайд-презентация 3.3. Оценка и лечение запоров/диареи Слайд-презентация 3.4. Психологический стресс у тяжело больных детей: депрессия, беспокойство, бессонница Слайд-презентация Приложение 5. Примеры типовых учебных планов по паллиативной помощи детям 79 3.5. Измененный психический статус: бредовые состояния у детей Слайд-презентация Четвертый день 4.1. Ведение разговора с родителями и детьми о тяжелом заболевании Презентация/обсуждение в большой группе 4.2. Потеря, горе и тяжелая утрата Слайд-презентация/обсуждение в большой группе 4.3. Психосоциальные страдания и поддержка Слайд-презентация/обсуждение в большой группе 4.4. Ролевая игра: психосоциальная поддержка 4.5. Психоустойчивость медицинских работников и помощь самим себе Краткая лекция и обсуждение в большой группе 4.6. Поминальная церемония Групповая деятельность Пятый день 5.1. Оптимальное использование жизнеобеспечивающего лечения Слайд-презентация/обсуждение в большой группе. 5.2. Комплексные медицинские и этические проблемы при уходе за умирающим ребенком Обсуждение в большой группе 5.3. Современное состояние паллиативной помощи детям в стране Слайд-презентация 5.4. Стратегическое планирование паллиативной помощи: что вы можете сделать в своем учреждении? Групповая работа и обсуждение Заключительный экзамен Источник: Глобальная программа Центра паллиативной помощи Гарвардской медицинской школы при Массачусетской больнице, 2017 г. Пример B. Основная учебная программа для подготовки медсестер Первый день 1.1. Что такое паллиативная помощь? Определение и принципы Лекция/обсуждение 1.2. Нынешняя ситуация с паллиативной помощью в стране Лекция/обсуждение 1.3. Команда паллиативной помощи Лекция/обсуждение 1.4. Роль медсестер при оказании паллиативной помощи Лекция/обсуждение 1.5. Этика медсестер в паллиативной помощи Лекция/обсуждение 1.6. Оценка качества оказания паллиативной помощи и подход к пациенту Лекция/дискуссия/ролевые игры Приложения80 Второй день 2.1. Основные принципы купирования боли Лекция/обсуждение 2.2. Побочные эффекты обезболивающих препаратов Лекция/обсуждение 2.3. Обучение пациентов и их родственников правильному употреблению морфина Лекция/обсуждение 2.4. Подкожные инъекции и инфузии Лекция/демонстрация 2.5. Обсуждение клинических случаев Обсуждение в небольшой группе Третий день 3.1. Одышка: оценка и лечение Лекция/обсуждение 3.2. Обсуждение клинических случаев одышки Обсуждение в небольшой группе 3.3. Раны, отеки и проблемы с кожей: оценка и лечение Лекция/обсуждение/демонстрация 3.4. Тошнота/рвота: оценка и лечение Лекция/обсуждение 3.5. Запор/диарея: оценка и лечение Лекция/обсуждение 3.6. Другие симптомы: потеря аппетита, кахексия, лихорадка Лекция/обсуждение 3.7. Желудочно-кишечные симптомы Обсуждение в небольших группах Четвертый день 4.1. Психологические/психиатрические проблемы: оценка и лечение Лекция/обсуждение 4.2. Волнение пациента Обсуждение в большой группе 4.3. Отношения пациент- медсестра, общение и сообщение плохих новостей Лекция/обсуждение 4.4. Обсуждение диагноза и прогноза с пациентом или его семьей Ролевые игры в небольших группах 4.5. Потеря, горе, тяжелая утрата Лекция/обсуждение 4.6. Эмоциональная поддержка умирающих пациентов и их семей Лекция/обсуждение/ролевая игра 4.7. Самопомощь медицинских работников Лекция/обсуждение/групповая деятельность Пятый день 5.1. Имеющиеся в стране сложности при купировании боли Лекция/обсуждение Приложение 5. Примеры типовых учебных планов по паллиативной помощи детям 81 5.2. Внедрение паллиативной помощи по уходу в домашних условиях Лекция/работа в группах/обсуждение Заключительный экзамен Источники: Университет медицины и фармации г. Хошимин, Вьетнам, и Глобальная программа Центра паллиативной помощи Гарвардской медицинской школы при Массачусетской больнице, 2017 г. Пример С. Основная учебная программа по обучению медико- социальных работников (МСР) 4 ч: 8 занятий по 30 мин 1. Что такое паллиативная помощь Краткая презентация/обмен опытом о неизлечимых заболеваниях в семье/друзьях 2. Обязанности медицинских работников перед пациентом Краткая презентация/обсуждение 3. Определение медицинского, психосоциального и духовного статуса пациента Презентация/обсуждение 4. Знать, как общаться с пациентом, и уметь его поддержать Презентация/обсуждение 5. Знать, как распознать неконтролируемый симптом Презентация/вопросы и ответы 6. Знать, когда и как обращаться к за помощью Презентация/вопросы и ответы 7. Психологическая устойчивость и забота о себе Краткая презентация/обсуждение 8. Облегчение скорби и страданий Краткая презентация/обсуждение Источник: Institute of Palliative Medicine. Palliative Care: A Workbook for Carers. Calicut, Kerala, India: WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care, 2017. 82 Приложение 6 Ссылки Практическое руководство по паллиативной помощи детям: для врачей и медсестер из любой точки мира http://www.icpcn.org/a-really- practical-handbook-of-childrens- palliative-care/ Африканская ассоциация паллиативной помощи https://www.africanpalliativecare.org/ Сообщество паллиативной и хосписной помощи Азиатско- Тихоокеанского региона http://aphn.org/ Центр развития паллиативной помощи. Руководство по паллиативной помощи детям: каталог ресурсов, инструментов и тренингов для интеграции инноваций, развития и роста ППД https://www.capc.org/topics/pediatric- palliative-care/ Проект по паллиативной/хосписной помощи детям (ChiPPS), программа Национальной организации хосписного и паллиативного ухода США https://www.nhpco.org/chipps-e-journal Консорциум сестринского образования по обеспечению ухода пациентам, уходящим из жизни (ELNEC) https://elnec.academy.reliaslearning.com/ Европейская ассоциация паллиативной помощи (EAPC) http://www.eapcnet.eu/ Европейская ассоциация паллиативной помощи (EAPC) Основная группа первичной медицинской помощи http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCReferenceGroups/PrimaryCare.aspx Программа электронного обучения ICPCN http://www.icpcn.org/icpcns- elearning-programme/ Международная ассоциация хосписной и паллиативной помощи https://hospicecare.com/home/ Международное сообщество паллиативной помощи детям http://www.icpcn.org/ Латиноамериканская ассоциация паллиативной помощи http://www.cuidadospaliativos.org/ Приложение 6. Ссылки 83 Стандарты практики NHPCO по паллиативной и хосписной помощи детям https://www.nhpco.org/childrenspediatricschipps/pediatrics- professional-resources Группа по изучению боли и политики http://www.painpolicy.wisc.edu/ Паллиативная помощь младенцам, детям и молодежи: документ для медицинских работников и политиков. Подготовлено Целевой группой EAPC по паллиативной помощи детям http://www.eapcnet.eu/LinkClick.aspx?fileticket = DeiV2yhtOZA%3D Руководство по паллиативной помощи «Плюс» http://book.pallcare.info/ Паллиативная помощь детям: рекомендации по лечению симптомов в Нидерландах https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4634793/ «Вместе за короткие жизни»: основы контроля симптомов при паллиативной помощи детям http://www.togetherforshortlives.org.uk/professionals/resources Когда дети умирают: улучшение паллиативной помощи и ухода за умирающими детьми https://www.nap.edu/catalog/10390/when-children-die-improving- palliative-and-end-of-life-care Руководство ВОЗ по фармакологической терапии персистирующей боли у детей с соматическими заболеваниями http://www.who.int/medicines/areas/quality safety/guide perspainchild/en/ ВОЗ Программа паллиативной помощи http://www.who.int/palliativecare/en/ Рекомендации по лечению персистирующей боли у детей http://www.who.int/medicines/areas/quality safety/guide perspainchild/en/ Планирование и внедрение паллиативной помощи: руководство для руководителей программ http://www.who.int/ncds/management/palliative-care/palliative care services/en/ Глобальный атлас по паллиативной помощи у умирающих пациентов http://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/ Всемирный альянс по паллиативной и хосписной помощи http://www.thewhpca.org/ Всемирная организация национальных коллегий, академий и академических ассоциаций врачей общей практики/семейных врачей (WONCA) http://www.globalfamilydoctor.com/ 84 Приложение 7 Глоссарий Всеобщий охват медико- санитарными услугами Охват медицинскими услугами, который предоставляет людям доступ к медицинским услугам, в которых они нуждаются, и финансовую защиту. Дети Лица, не достигшие 18 лет (ООН). Здоровье Состояние полного физического, психического и социального благополучия, а не просто отсут- ствие болезней или недостатков (преамбула к Уставу ВОЗ, принятая на Международной конферен- ции по здравоохранению, Нью- Йорк, 19–22 июня 1946 г., была подписана 22 июля 1946 г. представи- телями 61 государства- члена [Официальный отчет ВОЗ, № 2, стр. 100] и вступила в силу 7 апреля 1948 г. Определение не менялось с 1948 г.). Интегрированные медицинские услуги Медицинские услуги, которые осуществляются таким образом, чтобы люди имели непрерыв- ный доступ к укреплению здоровья, профилактике заболеваний, диагностике, лечению заболева- ний, реабилитации и паллиативной помощи, на разных уровнях и местах оказания помощи в системе здравоохранения, что соответствует их потребностям на протяжении всей жизни. Медико- санитарный работник (МСР) Лица, которые оказывают медицинскую помощь в своих общинах, должны нести ответственность пе- ред людьми за свою деятельность, должны иметь поддержку от системы здравоохранения, но не обяза- тельно быть частью ее организации, и проходить более короткий срок обучения, чем профессиональные работники. Межотраслевые действия Включение в процесс других отраслей, помимо здравоохранения, при разработке и реализации государственной стратегии, направленной на улучшение здравоохранения и качества жизни. Неинфекционные заболевания Заболевание или состояние, которое не является инфекционным и не передается от человека к че- ловеку, например, ишемическая болезнь сердца, инсульт, онкология, диабет и хроническое заболевание легких. Некоммерческие организации Независимые от правительства структуры, такие как неправительственные организации (НПО) и правозащитные группы, независимые активисты и правозащитники, религиозные объединения, благотворительные организации, университеты, профсоюзы, правовые ассоциации, семьи и кланы. Неправительственная организация (НПО) Организация, которая функционально независима от правительства или государства и не представляет их интересы. Приложение 7. Глоссарий 85 Ориентированная на человека медицинская помощь Медицинская помощь, которая направлена на удовлетворение интересов отдельных лиц, семей и об- щин. Она основана на убежденности в том, что отдельные лица, семьи и общины являются участниками, а также нуждающимися в системе здравоохранения, и реагирует на их потребности и предпочтения гу- манным и целостным образом. Ориентированная на людей помощь требует того, чтобы люди имели обра- зование и поддержку, в которых они нуждаются, а также возможность принимать решения и участвовать в собственном лечении. Помощь организована вокруг потребностей и ожиданий людей, а не болезней. Первичная медико- социальная помощь Первичная помощь основывается на практических, научно обоснованных и социально приемлемых ме- тодах и технологиях. Она несет центральную функцию и является основным направлением системы здраво- охранения страны, имеет важнейшее значение для общего социально- экономического развития общества, является первым уровнем контакта с национальной системой здравоохранения и обеспечивает максималь- но возможный контакт здравоохранения с населением. Она должна быть общедоступной для отдельных лиц и семей в обществе и доступной для общества и страны на каждом этапе их развития. Поддержка при утрате Психологическое, духовное консультирование или другая эмоциональная поддержка людей, скорбящих после смерти любимого человека. Социальные детерминанты здоровья Условия, в которых люди рождаются, растут, живут, работают и стареют. Эти обстоятельства опре- деляются финансированием, властью и ресурсами на глобальном, национальном и местном уровнях, и они являются основной причиной неравенства при оказании медицинской помощи. Это несправед- ливые и предотвратимые различия в состоянии здоровья, наблюдаемые как внутри отдельной страны, так и между странами. Тяжелые страдания, обусловленные проблемами со здоровьем Страдания, обусловленные проблемами со здоровьем, возникают при заболевании или травме. Тяжелыми называют страдания, которые нельзя купировать без медицинского вмешательства и кото- рые ставят под угрозу физические, социальные или эмоциональные функции. Паллиативная помощь должна быть направлена на облегчение тяжелых страданий, вызванных ограничивающими жизнь или угрожающими жизни состояниями, а также концом жизни. Укрепление потенциала Процесс, посредством которого люди, организации и общества развивают способность индивиду- ально и коллективно выполнять функции, решать проблемы, ставить цели и достигать их. Улучшение системы здравоохранения Процесс выявления и осуществления изменений в политике и практике в системе здравоохране- ния страны для того, чтобы страна могла лучше реагировать на имеющиеся проблемы в здравоохра- нении. Сюда относят любые инициативы и стратегии, которые улучшают одну или несколько функций системы здравоохранения и ведут к улучшению здоровья посредством улучшения доступа, охвата, качества или эффективности. Хоспис Организация или учреждение, целиком и полностью посвященные оказанию стационарной или амбулаторной паллиативной помощи умирающим пациентам. Научно-практическое издание ИНТЕГРАЦИЯ ПАЛЛИАТИВНОЙ ПОМОЩИ В ПЕДИАТРИЧЕСКУЮ ПРАКТИКУ Рецензент — д. м. н. Э.В. Кумирова Главный редактор канд. мед. наук Д. Д. Проценко Редактор И. Р. Балдано Корректор И. Ф. Козлова Макет, верстка В. С. Чукашев Подписано в печать 03.06.2020 Формат 70 × 1001/16. Объем 5,34 авт. л. / 5,5 п. л. Тираж 2000 экз. Заказ Издательство «Практическая медицина». 119146, Москва, 2-я Фрунзенская ул., 7. Тел. +7 (495) 324-93-29. E-mail: medprint@mail.ru (редакция). Тел. +7 (495) 981-91-03. E-mail: opt@medprint.ru (отдел реализации) WWW.MEDPRINT.RU