Developing an ethical framework for healthy ageing: report of a WHO meeting, Tübingen, Germany, 18 March 2017

DEVELOPING AN ETHICAL FRAMEWORK FOR HEALTHY AGEING Report of a WHO meeting Tübingen, Germany,18 March 2017

DEVELOPING AN ETHICAL FRAMEWORK FOR HEALTHY AGEING Report of a WHO meeting Tübingen, Germany,18 March 2017

WHO/HIS/IER/REK/GHE/2017.4 © World Health Organization 2017 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. Developing an ethical framework for health ageing: report of a WHO meeting, Tübingen, Germany, 18 March 2017. Geneva: World Health Organization; 2017 (WHO/HIS/IER/REK/GHE/2017.4). Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-partyowned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. Design and layout: Inis Communication – www.iniscommunication.com

Contents Acknowledgements iv Executive summary 1. Background 2. Presentations by experts 2.1 The starting-point: The world report on ageing and health and the Global strategy 2.2 Ageism as a form of discrimination 2.3 Abuse of older people 2.4 Ageism in medical research 2.5 How non-western societies conceptualize ageing and health 2.6 Age-related rationing and priority-setting in health care 2.7 Prevention and early detection of clinical conditions in older people 2.8 Establishing long-term care systems in low-resource settings 2.9 An ethical framework for dealing with dementia 3. Towards an ethical framework for healthy ageing 4. Specific issues in healthy ageing 4.1 Definition of old age: the subject of the framework 4.2 Medical care of older people 4.3 Shaping the environment: enhancing the abilities of older people 4.4 Acting in a complex system 4.5 Existential dimension of older age: a life-course approach 4.6 Reshaping social attitudes towards older age 5. Conclusions 3 4 5 6 6 7 9 10 10 11 13 13 14 17 18 19 21 22 v 1 3

References 23 Annex 1. Agenda Annex 2. Participants 26 27

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USION EQUITY SOLIDARITY LONG-TERM ATION UTILITY RECIPROCITY QUALITY OF ONG-TERM CARE FAIRNESS ETHICS UTILY QUALITY OF LIFE AGEING INCLUSION NESS ETHICS UTILITY NON-DISCRIMINAAGEING INCLUSION EQUITY SOLIDARITY N-DISCRIMINATION UTILITY RECIPROCITY SOLIDARITY LONG-TERM CARE FAIRNESS RECIPROCITY QUALITY OF LIFE AGEING CARE FAIRNESS ETHICS UTILITY NONITY OF LIFE AGEING INCLUSION EQUITY WHO extends its thanks to Hans-Jörg We acknowledge with thanks the additional CS UTILITY NON-DISCRIMINATION UTILITY Ehni, Urban Wiesing and Selma Kadi at the resources provided by Age International USION EQUITY SOLIDARITY LONG-TERM Institute for Ethics and History of Medicine for the meeting and the report. We also ATION UTILITY RECIPROCITY QUALITY OF thank those participants who used their of the University of Tübingen, Germany, ONG-TERM CARE FAIRNESS ETHICS UTILwho were supported by the Institutional own funding to participate in the meeting Y QUALITY OF of LIFE Strategy the AGEING University INCLUSION of Tübingen and contribute to the discussions. (Deutsche Forschungsgemeinschaft, NESS ETHICS UTILITY NON-DISCRIMINA- The Global Health Ethics team thanks 63), for hosting the SOLIDARITY meeting and AGEING ZUK INCLUSION EQUITY Mr Johannes Koehler, intern at WHO, supporting the attendance of several of N-DISCRIMINATION UTILITY RECIPROCITY for carefully reading the manuscript and the participants. The report of the meeting SOLIDARITY LONG-TERM CARE FAIRNESS providing useful comments. The rapporteur was prepared by Dr Laszlo Kovacs and Dr RECIPROCITY QUALITY OF LIFE AGEING of the meeting was Dr Laszlo Kovacs. Hans-Jörg Ehni with support from Dr Abha CARE FAIRNESS UTILITY NONSaxena of theETHICS Global Health Ethics team ITY OF LIFE AGEING INCLUSION EQUITY (Department of Information, Evidence CS UTILITY UTILITY andNON-DISCRIMINATION Research in the Health Systems and USION EQUITY LONG-TERM InnovationSOLIDARITY cluster) at WHO. Dr Andreas Reis (Global Health Ethics team) provided ATION UTILITY RECIPROCITY QUALITY OF critical comments on the final manuscript. ONG-TERM CARE FAIRNESS ETHICS UTILStimulating discussions with Dr John Y QUALITY OF LIFE AGEING INCLUSION Beard, Director of the Department of NESS ETHICS UTILITY NON-DISCRIMINAAgeing and Life Course at WHO, led to AGEING organization INCLUSION EQUITY SOLIDARITY of the meeting, for which the

Acknowledgements

team is grateful.

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Developing an ethical framework for healthy ageing

RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU Today, people live longer than ever. The governments. All are responsible for SOLIDARITY LONG-TERM CARE FAIRNESS ET rising number of older people is leading contributing to ensuring conditions that RECIPROCITY QUALITY OF LIFE AGEING INC to radical social change, including help older people do and be what they CAREvalue. FAIRNESS UTILITY NON-DISCRIM challenges for global health and health These ETHICS conditions are shaped by LIFE AGEING INCLUSION EQUITY SOLIDARIT care systems. This development was many considerations, including changing ITY NON-DISCRIMINATION RECIPRO addressed in the World report on ageing expectations of medical careUTILITY in older age, and health published by WHO in 2015, a just allocation of medical resources, EQUITY SOLIDARITY LONG-TERM CARE FA followed by the Global strategy TION and ensuring real possibilitiesQUALITY for the OF LIF UTILITY RECIPROCITY action plan on ageing and health 2016– participation of older people in ETHICS social life,UTILITY LONG-TERM CARE FAIRNESS 2020, which provides strategies and promoting an age-friendly environment QUALITY OF LIFE AGEING INCLUSION EQUIT policy options for Member States to that supports the functions valued by ETHICS UTILITY NON-DISCRIMINATION UTILI support people in living not only longer older people, ensuring the absence of INCLUSION EQUITY SOLIDARITY LONG-TE but also healthier lives. These documents discrimination and abuse in both personal DISCRIMINATION UTILITY RECIPROCITY QU indicate that some issues of healthy relations and social structures, and having SOLIDARITY LONG-TERM CARE FAIRNESS ET ageing require conceptual and ethical a deep understanding of the life-course, RECIPROCITY QUALITY LIFE age, AGEING INC exploration. For this purpose, a scoping especially the meaningOF of older meeting was organized by WHO on 18 and respect ETHICS for its special existential CARE FAIRNESS UTILITY NON-DISCRIM dimensions. March 2017 at the University of Tübingen, LIFE AGEING INCLUSION EQUITY SOLIDARIT Germany. Various experts in the fields of ITY NON-DISCRIMINATION UTILITY RECIPRO An ethical framework could increase bioethics, gerontology, public health and EQUITY SOLIDARITY LONG-TERM CARE FA awareness of these issues, help to reshape other social and medical sciences were moral and social attitudes to old age TION UTILITY RECIPROCITY QUALITY OF LIF invited. This report presents the content

Executive summary

of the presentations and summarizes the achievements of the meeting. Participants agreed on the first steps towards an ethical framework for healthy ageing. The target groups of the framework are the older persons themselves and the stakeholders responsible for their health and well-being, such as family members, professional carers, institutions, communities and local and national

and provide a tool that could be applied consistently by various stakeholders. The meeting was convened to identify the elements of such an ethical framework.

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RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU SOLIDARITY LONG-TERM CARE FAIRNESS ET RECIPROCITY LIFE AGEING INC are healthy, OF meaningful and According to the WHO World report on older people QUALITY CARE FAIRNESS ETHICS NON-DISCRIM will society asUTILITY a whole benefit ageing and health (1, p. 3), the number of dignified from their full potential. EQUITY SOLIDARIT LIFE INCLUSION people over the age of 60 is expected to AGEING double by 2050. This will result in radical ITY NON-DISCRIMINATION UTILITY RECIPRO In order to ensure that adults live not only societal change. Dr Margaret Chan,EQUITY the SOLIDARITY LONG-TERM CARE FA longer but also healthier lives, the Sixtyformer Director-General of WHO, said, TION ninth UTILITY RECIPROCITY QUALITY World Health Assembly adopted OF LIF LONG-TERM CARE FAIRNESS ETHICS in May 2016 a comprehensive GlobalUTILITY today, most people, even in the poorest action plan on ageing and EQUIT countries, are living longer lives. ButQUALITY this strategy OF and LIFE AGEING INCLUSION is not enough. We need to ensure these health 2016–2020 and a related resolution UTILI ETHICS UTILITY NON-DISCRIMINATION extra years are healthy, meaningful INCLUSION and (2). This EQUITY strategy is based on the 2015 SOLIDARITY LONG-TE dignified. Achieving this will not just be World report on ageing and health (1). DISCRIMINATION UTILITY RECIPROCITY QU good for older people, it will be good Its aim is for every country to commit SOLIDARITY LONG-TERM CARE FAIRNESS ET to action on healthy ageing. Some of for society as a whole. RECIPROCITY QUALITY OF LIFE AGEING INC the fastest demographic changes are This statement summarizes the startingCAREoccurring FAIRNESS ETHICS UTILITY NON-DISCRIM in low- and middle-income point of the meeting. A global increase LIFE AGEING EQUITY SOLIDARIT countries.INCLUSION Promoting healthy ageing, in average life expectancy is a major including addressing age discrimination ITY NON-DISCRIMINATION UTILITY RECIPRO achievement, but the risk and the burden in various forms, andLONG-TERM building systems EQUITY SOLIDARITY CARE FA of chronic diseases rise with increasing to meet the needs of older adults will be TION age (1, p. 39) and can contribute to UTILITY RECIPROCITY QUALITY OF LIF

1.

Background

negative stereotypes and discrimination of older people. It will be crucial to maintain good health throughout the lifecourse and prevent diseases if older people are to engage in meaningful activities. In so far as chronic diseases in advanced age cannot be fully prevented, the health needs of older people must be met, such as in long-term care, to protect their dignity. And, as Dr Chan rightly highlighted, only if the lives of

sound investments in a future in which older people have the freedom to be and to do what they value and to develop and maintain “the functional ability that enables well-being in older age” (1). In addition, the Health Assembly requested WHO to prepare an action plan on dementia, and this has been approved by the Executive Board. The World report on ageing and health (1) lists seven basic abilities of older people

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that should be respected: to meet basic needs, to learn, to grow intellectually and socially and make decisions, to be mobile, to build and maintain relationships and to contribute to society. In the context of health, each of these abilities raises diverse issues that require conceptual and ethical exploration. Immediate issues are those associated with dementia, assistive medical technology, use of digital media in the care of older people and intergenerational ethics. The entire range of issues should be explored in order to construct an appropriate ethical framework for stakeholders including decision-makers, care providers and carers, so that they can decide on the most urgent, important issues for further analysis. For this purpose, a meeting was organized in March 2017, with the support of colleagues at the University of Tubingen, Germany and Age International. The meeting was attended by leading philosophers of health, wellbeing and ageing and experts in the fields of bioethics, gerontology, public health, health promotion, human rights, sociology and psychology. The meeting was held immediately after a workshop organized by the University of Tubingen on 16–17 March 2017 on the ethics and theory of healthy ageing in order to identify areas for further research. The objective of the meeting was to discuss the need for and the potential structure of an ethical framework to promote the ethical values and principles of the World report that would: best respond to the challenges of health during ageing and in old age; contribute to

decreasing discrimination of older people; strengthen the rights-based agenda for improving the health of the ageing population; and support policy-makers in devising and implementing strategies for healthy ageing. A further aim was to identify topics in the area of ageing that require additional ethical guidance. While some areas stand out immediately, such as health care rationing, assistive devices and healthy environments, others might be identified and eventually prioritized for further elaboration. While well-known ethical frameworks in clinical practice, research and in public health exist and could be used as a starting point for developing a framework for healthy ageing, the important differences and nuances relevant to ageing must first be identified and explored. The report is structured to reflect the agenda, describing the content of the presentations of invited experts and general points raised during the discussions. The last section provides a summary of the discussions, identifies open questions and proposes actions that could be taken by stakeholders, such as decision-makers, care providers, carers, communities and certain population groups.

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RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU SOLIDARITY LONG-TERM CARE FAIRNESS ET RECIPROCITY QUALITY OF LIFE AGEING INC threats of the future development of society 2.1 The starting-point: The CAREshould FAIRNESS NON-DISCRIM lead toETHICS measuresUTILITY to provide older world report on ageing LIFE AGEING EQUITY aSOLIDARIT people (asINCLUSION well as other generations) fair and health and the ITY NON-DISCRIMINATION chance for pursuing a good life. UTILITY RECIPRO Global strategy EQUITY SOLIDARITY LONG-TERM CARE FA The health of older people is key to TION UTILITY RECIPROCITY QUALITY Ritu Sadana, of the Ageing and Life ensuring mutual benefits for both older OF LIF LONG-TERM CARE FAIRNESS ETHICS and younger generations. Poor health inUTILITY Course Department at WHO, introduced people has negative implications EQUIT LIFE AGEING INCLUSION the meeting by presenting the QUALITY key olderOF not UTILITY only for them but also for their families messages in the World report on ageing ETHICS NON-DISCRIMINATION UTILI and carers and for society as a whole. and health and the recently approved INCLUSION EQUITY SOLIDARITY LONG-TE If the extra years gained are spent in Global strategy on the same topic. DISCRIMINATION UTILITY RECIPROCITY QU good health, older people may have LONG-TERM CARE FAIRNESS ET She recalled the rising numberSOLIDARITY of the opportunity to contribute to society RECIPROCITY QUALITY OF AGEING INC older people worldwide and noted and to do what they value. LIFE The World that gains in extra years are not only CAREreport FAIRNESS ETHICS UTILITY NON-DISCRIM on ageing and health states that a prolongation of individual lives LIFE but AGEING INCLUSION EQUITY SOLIDARIT “Comprehensive public health action on also result in demographic transitions, population ageing is urgently needed. ITY NON-DISCRIMINATION UTILITY RECIPRO with fundamental implications for both This will require fundamental shifts, not EQUITY SOLIDARITY LONG-TERM CARE FA societies and individuals. The predictable just in the things we do, but in how we TION UTILITY RECIPROCITY QUALITY OF LIF changes will affect not only demographic

2.

Presentations by experts

statistics but also the relationships among individuals, groups and cohorts; they will indirectly reshape images of old age and attitudes towards older people. New commitments to and expectations of older people and of society will be made. With new technology, older people may achieve new functions and contribute differently to society, although they are also likely to become vulnerable in new ways. Awareness of the chances and the

think about ageing itself” (1). The report includes a framework to foster healthy ageing, built around the new concept of “functional ability”. Investing in the support of functional ability will bring valuable social and economic returns in terms of both the health and the wellbeing of older people and their continuing participation in society. The report proposes three areas for action, which will require fundamental shifts in the

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way society thinks about ageing and older people. • Make the places we live in friendlier to older people. • Realign health systems to the needs of older people. This will require a shift from systems designed for curing acute disease to systems that also provide continuing care for the chronic conditions that are more prevalent in older people. • Develop long-term care systems to reduce inappropriate use of acute health services and to ensure that people live their last years at home and with dignity. Families should therefore be given professional support in providing care. Thus, women, who are often the main carers of older family members, are freed to play broader roles in society. The report proposes several means to achieve these objectives. It notes, however, that, although the health needs of older people are fairly consistent throughout the world (1), preparedness to meet them and how they are delivered varies among and within countries, depending on socioeconomic development, the degrees of inequity and inequality in the country and current policies in this area.

2.2 Ageism as a form of discrimination A major challenge to achieving the objectives described above is ageism, a form of discrimination against individuals or groups on the basis of their age. “Ageism” was first described by Robert Butler (3) in an analogy to sexism and racism; it has been suggested that it is the most neglected of the three. Ageism can be seen as a process of systematic stereotyping of and discrimination against people because they are old, just as racism and sexism accomplish this for skin colour and gender. Old people are categorized as senile, rigid in thought and manner, old-fashioned in morality and skills (4). Mira Schneider currently at the Ethox Centre, University of Oxford, United Kingdom, introduced ageism, summarizing the key concepts and the findings of research. She pointed out that people may express idealized positive attitudes to old age but in everyday life act according to hidden negative attitudes towards older people (5) . A comparison of perceptions in various countries showed that many people consider that older people are not adequately respected, especially in high-income countries (6), and lack of respect for older people has been diagnosed empirically in these countries (7) . Discrimination against older people is often based on pervasive negative stereotypes and on implicitly (subconscious) or explicitly (conscious) held views on cognitive, affective and

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Developing an ethical framework for healthy ageing

behavioural stereotypes. Implicit and explicit ageism is well established in health care settings: health care professionals commonly hold more negative attitudes towards older patients (8). Older people generally receive less screening and preventive care, poorer management and treatment and are the subjects of less research because of their age (9). Ageism can be externalized (e.g. by younger people towards older people) or internalized (by older people towards themselves). In the latter case, older people may feel that they are a burden and perceive their lives as less valuable because of their age; they are therefore at higher risk for depression and social isolation. Ageism can manifest at the micro level (intrapersonal and interpersonal), meso level (community and society) and macro level (instructional and policy) (10). At the micro level, internalized ageism has been associated with reduced life expectancy and higher rates of mortality and morbidity, as negative selfstereotypes appear to modify the severity of and recovery from morbidity in older age (11–13).

2.3 Abuse of older people In his presentation, Yongjie Yon, WHO Regional Office for Europe, emphasized the vulnerability of older people to abuse. “Elder abuse” has been defined by WHO as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person” (14). It can take the form of psychological, physical, emotional, sexual or financial abuse, or neglect, which can be passive or active. Passive neglect, which is very common, consists of unintentional failure to provide the necessary care, such as nutrition, medication or cleaning. Active neglect is intentional disregard of older people. Elder abuse, especially psychological and financial, is a major, worldwide public health problem (15). It constitutes a violation of human rights (8). There are promising interventions for preventing elder abuse (16), including interventions by carers, money management programmes, helplines, emergency shelters and dedicated multidisciplinary teams. Elder abuse is not necessarily the result of evil intentions. In some cases, it is due to a poorly considered value judgement, e.g. on the priority of safety over the autonomy of an older person, due to a perception that the older people in general lack appropriate judgement, i.e. implicit ageism.

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2.4 Ageism in medical research Antonio Cherubini, University of Perugia, Italy, gave another clear example of explicit and implicit ageism, which is the exclusion of older people from medical research. Medical journals regularly report the results of randomized clinical trials (e.g. on heart failure, hypertension, Alzheimer’s disease, colorectal cancer and depression) from which older patients are excluded by an explicit upper age limit and various other criteria (17). Their exclusion is regularly justified for pragmatic reasons (18): older people are a heterogeneous group, so that it is difficult to interpret the study results; it is more difficult to obtain their consent than that of younger patients; older people are at higher risk of becoming sick or immobile during a trial, compromising their continuing participation and resulting in a higher drop-out rate. The inclusion and continuing participation of older people in research is often associated with higher costs in terms of time and other elements, e.g. transport. Their higher risk for adverse drug effects, which are related to changes with age, and the higher prevalence of multimorbidity and consequent polypharmacy are also used to justify their exclusion. Geriatricians are calling for the inclusion of older people in clinical trials, as the results of trials performed in younger populations are not necessarily applicable to older people because of differences in physiology, multimorbidity and polypharmacy and in their lifestyles and

values. Their exclusion from such trials may result in inappropriate prescriptions, waste of resources and adverse events, as many drugs and nonpharmacological interventions have not been tested to determine whether they affect agerelated problems like falls, cognitive function, frailty and multimorbidity. This is an example of implicit ageism, which has negative implications not only for the individuals concerned but also for health care and society. To reduce discrimination of older people in clinical research, a European Union-funded project, PREDICT, produced a “Charter for the rights of older people in clinical trials” (17), which has been widely endorsed by gerontological and geriatric associations as well as nongovernmental associations such as Age Platform.

2.5 How non-western societies conceptualize ageing and health Kavita Sivaramakrishnan, Columbia University, USA, pointed out that nonwestern societies are coping with two developments at the same time: ageing and rapidly changing social structures (19). Formerly agrarian economies are no longer sustainable, and older people are unfamiliar with the new social structures; some even actively oppose modernity. Economic modernity has resulted in migration away from the family and hence a breakdown of traditional family relationships and family solidarity. Women go to work and are unable to care for the

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older people in their families. The family remains important as a social institution but has a different meaning. It is no longer the large family, with several generations, including grandparents, uncles and others, living together, but is a nuclear family, consisting of an adult couple and their children. Traditionally, support for older parents was part of family life. Sons earned money and paid for health care (there was no health insurance), while daughters-in-law cared for the older people. Today, the system has changed: supporting older parents is still an important cultural expectation, but it has become more difficult, especially when the offspring are employed far away, unemployed or underemployed. Even well-employed adults have to decide how to support both their children and their older parents. The changes are occurring too fast for the older generation, which has therefore been unable to prepare or adapt itself to the new conditions of life. This generation is frequently the loser in this competition and often has to take a back seat. How can the problem of caring for older people be solved? The rapidity of the change in structures challenges solutions; besides, western solutions are not readily applicable to African and Asian populations. One possibility is to support the traditional family care concept, with some modifications. Caregiving family members could receive professional assistance and support for informal long-term care, such as paid leave from work, with government subsidies. This solution would respect valuable

family relationships but ignores poverty and migration. Informal care will not be adequate to manage all the long-term care needs of older people. Another possibility would be to extend the formal care system, for instance by training traditional health care workers in longterm care. These services would not replace the family totally but would fill gaps left by nonprofessional carers. One problem is that professional carers usually act only in the formal sector, whereas some older people are not covered by health insurance and are “invisible” to the authorities, slipping through the institutional framework of formal solutions. The combination of the two solutions that is appropriate for communities and societies and covers everybody in need will depend on the social and cultural structure in each setting.

2.6 Age-related rationing and priority-setting in health care Hans-Jörg Ehni, University of Tübingen, Germany, presented an overview of ethical justifications for age-based rationing of health care and their shortcomings. Agebased rationing rests on the premise that population ageing leads to an increase in health care costs and an increase in the proportion of health care resources spent on older people. Therefore, some ethicists have argued that, under certain conditions, chronological age can be used as a morally permissible criterion for rationing health care. This has generated

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extensive discussion. Two arguments are frequently used to justify use of chronological age to ration health care: • maximizing utility and • “fair innings”. Maximizing utility This argument is based on a utilitarian calculus for health care. The utility of the resources spent on health care should be maximized, for instance measured as quality-adjusted life–years (QALYs). As older people have a shorter average life expectancy than younger people, giving priority to younger people will maximize the QALYs. This calculation could be amended by assuming that older people have a lower quality of life and therefore the QALYs of an older person should be rated lower. As older people have fewer expected life–years, they lose in comparison with younger adults (e.g. QALYs, and see the critique of Nord et al. (20)). Both assumptions – shorter life expectancy and poorer quality of life – can be used to justify setting age thresholds for particularly cost-intensive treatments. The argument of maximizing utility has, however, several weaknesses. Judgements about age are based on negative stereotypes. The argument ignores individual differences and considers that older people are uniform in all respects (even with regard to expected life years). Additionally, this argument negates the equal moral value of all human beings and emphasizes morally irrelevant differences.

Fair innings The fair innings argument refers to justice. It is based on the moral intuition that death is always a misery but in young years is also a tragedy, i.e. even worse. Therefore, the lives of older people should not be prolonged at the cost of the lives of younger people. For example, Daniel Callahan argues (21) for a threshold of 70 years, which he considers to be a “natural human life span” that would allow a sufficiently fulfilled life. For the proponents of this theory, the priority in health care for people below the age of 70 should be to avoid premature death; for those over 70, the focus should be on palliative care. This argument also has weaknesses. First, there is no agreement on the length of a natural, sufficiently satisfying life. Furthermore, the underlying concept of “a good life” is not convincing, as it assumes that people over 70 do not have truly valuable years of life because they have reached an objective threshold of satisfaction. Norman Daniels has proposed another version of the fair innings argument: the prudential life span account (22). This argument is based on the assumption that rational distribution of resources throughout the life-course would give priority to younger people, as they wish to reach old age. This is a contractarian argument based on the preferences of older people themselves. It therefore appears to avoid ageism and negative stereotypes of old age. The argument, however, also has several problems. First, it is not clear that everyone would

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distribute resources for health care throughout the life-course in the same way. Secondly, the general argument is too indeterminate to justify a decision to ration and should be amended by additional assumptions. As these different ethical arguments for justifying age-based rationing fail or are at least problematic, alternative strategies to reduce rising health care costs may be preferable. As the highest costs in any person’s life are usually generated during the last year of life and many people prefer not to be treated aggressively at any cost, limiting life-prolonging treatment according to individual preferences might be an acceptable strategy. Another strategy would be to focus on healthy ageing and disease prevention throughout the life-course in order to prevent chronic illness in late life.

can detect more abnormalities or detect them at an earlier stage; however, there is no evidence that all “abnormalities” must be treated. Some may be irrelevant for patients, especially for older people, or diagnostic instruments or algorithms may produce misleading empirical data because the normal physiological values of older people vary widely. Thus, in highincome countries, older people undergo more diagnostic tests and, consequently, appear to need more health care, even though their physiological and functional capacities are within the normal range. In contrast, some conditions, such as frailty, are not diagnosed as diseases but should be considered just as relevant for medical care and prevention. Frailty is a health state related to ageing in which multiple body systems lose their reserves and the risk for developing dependence and death increases (23). The individual body parts may not be diseased, but lack of reserves makes the body vulnerable. Older people must therefore receive comprehensive geriatric assessments, focusing on function rather than on disease. Thus, a health care system for older people is inadequate if it is based on a “single disease” or “chronological age” approach without taking into account the complexity of biologically aged people. We should shift to novel, integrated models of care that focus on meaningful outcomes for patients, such as function instead of disease.

2.7 Prevention and early detection of clinical conditions in older people Medical care focuses primarily on disease. This may have been justifiable in the nineteenth century, when acute illnesses were the main concern of the medical fraternity. Today, however, the incidence of chronic illnesses and nonspecific complaints is increasing, due not only to an actual increase in incidence but also to better diagnostic ability. Matteo Cesari, University of Toulouse, France, pointed out in his presentation that, by using better diagnostic instruments, we

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2.8 Establishing long-term care systems in lowresource settings Long-term care infrastructure has been established in several countries to change the focus on disease and to provide care for frailty and the other special health needs of older people. Puangpen Chanprasert, Ministry of Public Health, Thailand, presented an example of good practice in Thailand, a lowresource setting. The national plan, law, policy and integrated implementation of long-term care in Thailand have been organized at all institutional levels: national, provincial, district and community. At the national level, the Older Person Act entered into force in 2003, a national committee for older people was established, and a second national plan was introduced in 2009. The national policy and guideline provided criteria and an implementation strategy for use at provincial and district levels, including evaluation of implementation, monitoring and supervision. At community and subdistrict levels, health funds finance the long-term care infrastructure. Integrated care is provided in existing facilities by volunteers, health professionals, care managers, carers, an older persons’ club and civil society. Several ministries cooperate and network at all levels. A pilot project was conducted, and several good models for implementation were chosen in preparation for extension of the programme. Although establishment of long-term care in Thailand is a success, several problems remain: volunteers have

multiple, unclarified roles; the reporting system could be improved; and the quality of training for carers is still a challenge.

2.9 An ethical framework for dealing with dementia Julian Hughes, Nuffield Council on Bioethics, United Kingdom, presented the report of the Council on dementia (24), which identifies areas of concern for carers of people with dementia and for the people with dementia themselves. As most of the concerns were ethical, the Council published an ethical framework, which has six main components: a case-based approach to ethical decisions; beliefs about the nature of dementia; beliefs about the quality of life with dementia; the importance of promoting the interests of both persons with dementia and those who care for them; the requirement to act in accordance with solidarity; and recognizing the “personhood”, identity and value of people with dementia. These components provide a helpful framework for tackling the ethical problems that may arise in caring for a person with dementia. Strech et al. (25) highlighted specific ethical issues that arise in the context of dementia, including difficulties associated with an inability to make decisions, which characterizes all cases of dementia at some time.

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Developing an ethical framework for healthy ageing

RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU SOLIDARITY LONG-TERM CARE FAIRNESS ET RECIPROCITY QUALITY OF LIFEwould AGEING INC The presentations and discussion ethical framework for healthy ageing CAREinclude FAIRNESS ETHICS UTILITY NON-DISCRIM highlighted several situations and cases the relevant ethical principles LIFE INCLUSION EQUITY SOLIDARIT in which healthy ageing is a challenge for AGEING described in the World report systematically both individuals and society. Although and, if necessary, complement them with ITY NON-DISCRIMINATION UTILITY RECIPRO ageism and the related issue of elder other frameworks, as discussed at the EQUITY SOLIDARITY LONG-TERM CARE FA abuse are clearly unethical, they are so beginning the meeting. TION UTILITY of RECIPROCITY QUALITY OF LIF entrenched and ubiquitous in society that LONG-TERM CARE FAIRNESS ETHICS The participants described a numberUTILITY their relevance as fundamental barriers of ethical frameworks thatINCLUSION cover areas EQUIT QUALITY OF LIFE AGEING to promoting healthy ageing policies and broader than ageing and health. ETHICS UTILITY NON-DISCRIMINATION UTILI health care might not be appreciated. Beauchamp and Childress (26) INCLUSION EQUITY SOLIDARITY LONG-TE An ethical framework to address these introduced four principles for general DISCRIMINATION UTILITY RECIPROCITY QU challenges adequately and consistently biomedical dilemmas, framing ethical is therefore both timely and necessary. SOLIDARITY LONG-TERM CARE FAIRNESS ET analysis of clinical issues and issues in The framework could build on the ethical RECIPROCITY QUALITY OF LIFE AGEING INC medical research. Frameworks for public principles contained implicitly or explicitly CAREhealth FAIRNESS ETHICS UTILITY NON-DISCRIM ethics are more closely related in the World report on ageing and health LIFE AGEING EQUITY to healthy INCLUSION ageing, but they are stillSOLIDARIT not (1), which addresses the specific health specific enough to the problems of old ITY NON-DISCRIMINATION UTILITY RECIPRO needs of older people and how they can age, SOLIDARITY because the ageing population EQUITY LONG-TERM CARE FA be met by states, societies, institutions, introduces the issues of intergenerational TION communities and health care systems. In UTILITY RECIPROCITY QUALITY OF LIF

3.

Towards an ethical framework for healthy ageing

the first chapter, the authors refer to basic ethical values and principles, including individual diversity, inequity, stereotypes and the rights of older people. Individual freedom, equality, non-discrimination and human rights are ethical and legal concepts relevant to these topics. The section “Towards an age-friendly world” describes a comprehensive approach to ensuring the well-being of older people that encompasses five basic abilities. An

fairness and resource allocation, which must also be addressed.

The participants discussed the Nuffield Council ethical framework for dementia in detail. As dementia is most prevalent in old age, some of the principles in the framework have been recognized as applicable to healthy ageing. The approach of the framework to normalization of people with dementia and their carers was considered a good

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example, and participants commended the way in which the dementia framework had been developed, which could be applied to an ethical framework for healthy ageing. Fear of losing one’s memory and cognitive functions, which are strong determinants of identity and autonomy, are major concerns during ageing. Nevertheless, the ethical framework on dementia was considered too specific for all the issues of healthy ageing. Although dementia affects many older individuals, it is only one of many chronic diseases that are more prevalent in older people. An ethical framework for healthy ageing should also include a life-course approach to include the overall social changes in an ageing society, which, understandably, was not part of the dementia framework. Furthermore, the relationships between people with dementia and their carers may differ substantially from those between older people in general and their relatives or their society.

The ethical framework for healthy ageing should apply to all the individual and social challenges of older people and should provide a transparent approach to decision-making, to answer questions like: Who is accountable for which actions? What autonomy do older people have? Which moral rules should guide interventions and justify them? The focus on “healthy ageing” should not divert attention from other areas of care that are important for older people, including those in very advanced age, such as longterm care, prevention and management of disability in old age, an age-attuned, friendly health care environment and, once people reach the end of their lives, appropriate end-of-life care.

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RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU SOLIDARITY LONG-TERM CARE FAIRNESS ET RECIPROCITY QUALITY OF LIFE AGEING INC and sociologists now often distinguish a For an ethical framework, special attention CARE FAIRNESS ETHICS NON-DISCRIM age range, 65–80 UTILITY years (“younger should be paid to the gerontology of third INCLUSION EQUITY SOLIDARIT old”) and a fourth group of 80 and older older people’s life and health as LIFE well AGEING as to their social roles and functions. (“older old”) (27) . Participants commented ITY NON-DISCRIMINATION UTILITY RECIPRO The World report on ageing and health that chronological age is too simple CARE a EQUITY SOLIDARITY LONG-TERM FA (1) contains a substantial body of such way of defining groups of older people, TION UTILITY RECIPROCITY QUALITY OF LIF knowledge. Referring to the report and to particularly in view of global differences in LONG-TERM CARE FAIRNESS ETHICS UTILITY other additional sources, participants at health and life expectancy. The definition QUALITY OF LIFE AGEING INCLUSION EQUIT the meeting identified a number of core of older people used in the World report ETHICS NON-DISCRIMINATION UTILI issues of older age concerning health, (1) UTILITY is “a person whose age has passed INCLUSION EQUITY SOLIDARITY LONG-TE comprising physical, mental and social the average life expectancy at birth UTILITY RECIPROCITY QU issues and specific existential issues DISCRIMINATION that for that country”. It also describes the occupy many older people as a result of diversity of older people, as chronological SOLIDARITY LONG-TERM CARE FAIRNESS ET their life course. In this part of the report, age alone does not sufficiently reflect RECIPROCITY QUALITY OF LIFE AGEING INC we summarize the achievements ofCARE the the problems of a particular age group. FAIRNESS ETHICS UTILITY NON-DISCRIM meeting and identify open questions LIFE and AGEING Some people are very physically fit until INCLUSION EQUITY SOLIDARIT areas for further research. a very advanced age and are not limited ITY NON-DISCRIMINATION UTILITY RECIPRO in any physical functions, while others EQUITY SOLIDARITY LONG-TERM CARE FA have severe consequences of ageing, TION including UTILITY RECIPROCITY QUALITY 4.1 Definition of old age: physical and mental decline and OF LIF

4.

Specific issues in healthy ageing

the subject of the framework

Before discussing the problems of older people, a definition of the “older person” is required. Various thresholds have been established by the scientific community. The statistical analysis in the WHO Report on ageing and health is based on studies in which 60, 65 or 70 years was used as the threshold. Demographers

disability before they reach the proposed threshold. As biological ageing is a result of an accumulation of a wide variety of molecular and cellular damage over time, biological age might be informative about the health of individuals; however, there is no reliable biomarker of biological age. Chronological age plays a crucial role in the social support systems in many countries, such as the age threshold

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for pensions; however, chronological age is also a possible trait for social discrimination: people who retire because of their chronological age may be accused of contributing less to society (or less than they could) than working people. Demographers have suggested that the average life span be used to define age groups instead of the same threshold for different people and societies. But, this could be too simplistic. The participants recognized that a definition of old age should be discussed. The definition would influence how people think about older people and their specific needs, which social stereotypes are supported, who is left out and how older people see themselves. The question is not only which chronological threshold should be selected (60 or 70 years or more) but finding the best criteria of old age in different contexts (e.g. chronological, biological, social or subjective age) and taking into account the implications of the choice. How this should be done remains an open question. An ethical framework should not only propose a definition but also include the moral trade-offs that are made when selecting one threshold over another.

4.2 Medical care of older people While there is general agreement in the scientific community about the goals of medical care, three questions were posed at the meeting.

Can age-based rationing be justified on the basis of projections that older age groups will require a steeply rising, disproportionate amount of health care and health care spending? There is public and scientific discourse on limiting expensive health care for older people. The participants discussed two of the best-known arguments for such limitations and for excluding older people from full health care coverage: maximizing utility and fair innings. Participants supported equal health care coverage for all, including older people, according to their medical needs and not according to age. The demand for age-based rationing might be tempered by the fact that questions of rationing arise in practice more between older people than between younger and older patients. Nevertheless, there is evidence that health care is rationed on the basis of age (28). Other ways of decreasing health care costs that would be preferable to rationing include reducing waste, promoting prevention and examining the reasons for the high cost of end-of-life care, taking into consideration the preferences of the older persons themselves. The consensus of the participants was a valuable outcome of the meeting. An ethical framework on healthy ageing should include the moral reasons for a model of resource allocation for this group that includes guidance on which trade-offs are ethically acceptable and which are not. How can the participation of older people in clinical research be increased in order to ensure appropriate medical technologies and care models? The established ideal

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of medical research is the single-disease model, in which means are sought to treat the disease as a unique entity. This model is fundamentally flawed for application to older people, many of whom suffer from more than one condition (29). Participants argued against this ideal model, as most older persons in the real world are usually treated for a number of conditions, thus necessitating knowledge about polypharmacy and the effects of different treatments on multiple diseases and on the person (30). The concepts that guide medical research should be changed; and, despite practical difficulties, most, ideally all, older people should be able and empowered to participate in studies. An ethical framework should make the normative reasons for changing the established one-disease orientation more explicit and include the ethical consequences of alternative approaches and an alternative taxonomy of outcome. Older people are also systematically excluded from clinical research by the age limits commonly used as exclusion criteria in trial protocols. Such age limits are another sign of negative stereotypes of old age, as they imply that people over a certain age might not be healthy enough to be included in a trial. A related point is that the taxonomy of outcomes typically used in clinical trials is mis-specified when there is multimorbidity. Investment in the taxonomy of outcomes should be pursued if such research is conducted. Research methods should also be adapted to take into account the diversity of older subjects, and not vice versa, i.e. the denial of diversity and homogenization of

all older people towards healthier ones, who are easier to study with current methods. How can the established approach to medical care, which stresses diseaserelated outcomes such as morbidity and mortality, be changed into the more appropriate approach of life goals that are more relevant for older people, such as autonomy and quality of life? The participants not only questioned established research concepts but also the goals of therapy in old age. Sometimes, the best available medical care does not meet the needs of older people, as they may find it more acceptable to live with a certain disease or with suboptimal physiological values as long as they have intrinsic capacity than to undergo extensive treatment. The current focus on diseases and related outcomes, such as morbidity and mortality, should be replaced by a focus on outcomes that are more relevant for older people, such as the ability to continue to do what they value (e.g. mobility, meeting basic needs, learning and taking decisions) and thus preserving or improving their quality of life.1 The framework should elaborate these outcome criteria. Abilities, however, remain to be defined. Enhancing the abilities of older people does not mean that they have to perform more or better in general human functions. Objective or universally accepted definitions of “normal” or “optimal” functioning are 1 Several instruments are available for measuring outcomes such as function and quality of life, e.g. measures of ability to perform activities of daily living and the 36-item short form survey (SF 36) of the Rand Corporation.

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of limited validity in older age because subjective expectations and socially accepted functions change. The framework should take a critical position towards general terms like “normality”. Older people’s interest in certain functions may differ from that of younger patients. Older patients may have good reason to value a different sort of performance, such as their social role, memories and existential issues, which may play a more important role in their lives than in those of younger patients, who may be more interested in e.g. physical performance. An ethical framework should outline the values that physicians might consider when discussing health or medical conditions with older people, such as the functions that should be given priority in decision-making and how well they should be able to perform them. As different people value different things and may wish to give greater priority to the same health problem, older patients should not be considered a uniform group. Similarly, treatment of every single morbid condition may be the wrong goal. Instead, targeting the problems that limit valued abilities the most might be appropriate. Not treating every diagnosed disease can be considered a responsible act of identifying priorities rather than maleficent negligence. The appropriate ethical justification is that withdrawing or withholding treatment is motivated not by an intention to ration treatment for older people but by respect for the complexity of their medical conditions and an understanding that healthy ageing is possible even when the person is not free

of disease and disability. This normative attitude is implicit in the WHO World report on ageing and health (1), which defines healthy ageing as “developing and maintaining the functional ability that enables well-being in older age”. This attitude nevertheless requires better, fuller elaboration. A focus on actual capacities and abilities does not, however, justify a minimalist approach to physical and mental health. Function may be endangered by overall low performance of the body, described as frailty. As frailty is a condition that confers a high risk for severe health conditions, falls and injuries, it should be considered an indication for preventive measures, even if there is no health condition that would legitimate a direct medical intervention and functional ability is not severely limited. Denying acceptable support to older people to sustain their functional ability could be interpreted as maleficence. The discussions at the meeting focused mainly on high-income countries. Participants identified traditional and ideological obstacles to applying ethical principles of medical care to older people and gave examples of the enduring dilemmas. The development of an ethical framework could systematize the arguments and facilitate decision-making in the face of conflicting values and different socioeconomic conditions, such that the perspectives of high-, middleand low-income countries and different cultures are adequately addressed.

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4.3 Shaping the environment: enhancing the abilities of older people The participants observed that “healthy ageing” as defined in the WHO report is focused on ability (physical and mental; a person is “dis-abled”) and the physical and social environment and the adequacy of the latter in enabling people to do what they have reason to value. These reflect the capability approach and the idea of social justice, with constraints imposed on individuals by the environment. For example, several limitations in older age can be mitigated not only by good medical care but also by a conducive environment, such as age-friendly pedestrian paths and open spaces for recreation. The quest for an age-friendly environment is a positive contribution to health; it includes support for functioning and autonomy and mitigation of negative health risks due to poor living conditions and other social determinants. Participants argued that it is unethical to deny an age-friendly environment for older people, as it is as crucial as health care for their functioning. Ensuring the mobility of older people, age-friendly communication technologies and the support of the social environment, such as family carers, were mentioned as examples of positive environmental contributions to the health of older people. Health of older persons can be enhanced by changing the environment according to their health needs.

This is not a new idea. People have always adapted their environment to their needs. Somewhat newer is the idea that ageing societies should reshape their environment, their social living spaces, to the needs of older people and to general life-course needs. Especially in older age, people experience a decline in their capacities. In order to maintain a life of dignity and autonomy, they depend on a supportive environment, such as transport with easy access, parks with benches and places for recreation and accessible health care institutions, in addition to the special needs of more disadvantaged older people, such as wheelchairaccessible paths and lifts. Human rights and equity would be violated by exposing people with special needs to the environmental standards of healthy young adults (see the United Kingdom Disability Discrimination Act (31)). The participants agreed that equity demands that more be done for disadvantaged older people so that they can take part in social life. Various stakeholders have a role to play. If older people have such support, they can continue to be active and contribute to their community; this is part of the broader notion of health. An age-friendly environment is a requirement for human rights and equity, because it allows older people to do and be what they value. Some older people do not recognize threats to their health from environmental health hazards and make risky choices. Family members, carers and social institutions can diminish or lower the risk factors by changing the living conditions of older people and limiting their free

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choice. An important ethical question in this context is the degree to which the autonomous choices of older people should be influenced by family members, carers or social institutions, and whether and under which conditions older people should have special protection against environmental health risks. Environmental health risks can do more than influence decisions about the autonomy of individuals, as they often have a structural dimension. For example, discrimination based on age is often built into politicoeconomic structures, such as institutions that have a meritocratic perception of people’s value based on their age. In this respect, discrimination against older people by their social environment has been described as a particular concern and a form of abuse. An ethical framework on healthy ageing should address all these issues.

problems are addressed by health care institutions and others by social workers or families. The participants agreed that recent developments in the care of older people had led to inappropriate segregation of care, resulting in coexisting over- and under-supply in various dimensions of care, with an over-supply of care for some needs and an undersupply for others.2 Harmonization of services is a high priority, as public health specialists must orchestrate the creation of a supportive social and technical environment for the needs of older people. Decision-makers and strategic actors who want to reduce inappropriate use of expensive health care services and help families to spend their resources in an “efficient way” often sense an ambiguity, however, as “appropriate” services must also respect the cultural traditions of a community. The first chapter of the World report on ageing and health (1) stresses that “more of the same will not be enough”. The experience in Thailand of long-term care planning is an excellent example of a complex institutional answer to the needs of older people, even with few resources. The country integrated professionals in various fields, nonprofessionals and family members into care for older people. Although few resources are required, the example is not easy to transfer to other countries and cultures. Further research

4.4 Acting in a complex system Societies that wish to promote universal, equal application of human rights and equity for all people can take various courses of action. Any combination of solutions for the care of older people has advantages and drawbacks. A number of initiatives that address some of the most urgent issues in care of older people include the example of long-term care practice in Thailand (section 2.7) and the WHO Global network of age-friendly cities and communities, which has included more than 250 cities and communities worldwide since 2010 (32) . Some

2 The over-supply of carers for people with minor restrictions in activities of daily living and the under-supply for instance of carers for mobility, incontinence and feeding has been verified, especially in the western context. See reference (33).

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Developing an ethical framework for healthy ageing

should be conducted on the extent and conditions in which the experience of one country can be transferred to another with a different health care system, another culture and, potentially, another legal framework, and the underlying ethical values and normative assumptions should be analysed. Participants suggested further that, in stating underlying values and normative assumptions, researchers should be aware of the continuous changes in the values of modern societies. Families have traditionally been important in providing care for older people, but the availability of younger family members in modern society is limited by urbanization and mobility for work reasons, and they have less intense relationships and contact with their older relatives. Furthermore, the care of older people requires more and more professional knowledge, which may disqualify family members from becoming carers. Nevertheless, emotional relationships and better knowledge of the life history and personal values of older people, despite changing social structures, make family members important carers. Societies should find a balance between helping family members to provide care and easing their burden by making professional care available. Decision-makers should consider the importance of bilateral support between generations. The ethical framework should address respect for the principle of intergenerational solidarity in the modern world and what this would require from different actors in practice.

4.5 Existential dimension of older age: a lifecourse approach An ethical framework to address the particular needs of older people must include a reflection on the possible meaning of old age for a flourishing human life and the conditions that this phase of life represents for a good human life as a whole. This relates on the one hand to different gerontological concepts of ageing well, such as “successful”, “active” or “healthy” ageing; on the other hand, it relates to the conceptions of different cultures about the meaning of old age, such as intergenerational transfer of knowledge or experience, reflection on and fulfilment of a life’s achievements and reflections on human finitude. The importance of health and functioning for older people should be understood in this more general context. A harmonious system of care is built on a clear understanding of what it means to be old. Although the needs and health challenges of older people are diverse and heterogeneous, old age has some consequences that should be considered in all systematic decisions. There is extensive literature on the physical and mental processes of old age, but determining what older people really need and what is important for them requires a comprehensive evaluation that includes the social and existential dimensions of life in older age. Cultural and social expectations of agerelated norms shape our life-course, our opportunities and our behaviour. Some are

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codified, such as the legal requirement for education in childhood, the minimum age for marriage, the maximum age for some jobs and the age of retirement. Other agerelated norms are not regulated legally but are culturally deeply rooted (34), for example, in most western societies, adults are expected to live independently from their parents, to live in a partnership and to have children after a certain age. Individuals who do not meet these social expectations sometimes have to give extensive justifications. Older people also have culturally rooted life-course expectations. In most parts of the world, they are expected to dress and behave in an age-appropriate manner (35); and they are assumed to have certain capacities and to lack others. In certain eastern societies, such as India, older people are expected to give up family and social responsibilities and “retire” from active life. The main expectations and assumptions are subject to traditional stereotypes: old age is sometimes characterized as conferring special wisdom, knowing how to achieve a long life, being interested in the past and particularly not in the future, being burdened by new technologies and being unable to change deep-rooted habits. Such traditional agerelated stereotypes often lack an empirical foundation and do not respect the diversity of older people. Stereotypes and social acceptance do not change automatically as older people change. In ageing societies, especially in those that enjoy better health, the social images and roles of older people have changed. They are able to participate and to shape everyday social life, and they

also change their life expectations. The first years after retirement are increasingly years full of activity, and postponing some important life goals to this phase of life appears to be rational. In later years, if biological functions become more limited, older age may provide an opportunity for self-reflection, deeper understanding and re-interpretation of one’s history. This can result in life fulfilment, authenticity, the realization of deeply subjective values, re-evaluation of earlier occurrences in life and religious and spiritual experiences (36). Some of these reflections are manifested and supported in the form of social and cultural expectations, while others are not. Old age has some distinct aspects, such as increasing confrontation with the limits of life, approaching death, managing health issues, changing social and family roles and a personal relationship to diminished bodily capacity. These life-course changes shape not only the activities of older people but also their relationships with other generations, their strengths and weaknesses, their needs and their power when encountering other generations. As the traditional roles and meanings of older age change, philosophical, anthropological and social research should address the new meaning of old age in the life-course and its consequences for our societies (37).

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Developing an ethical framework for healthy ageing

4.6 Reshaping social attitudes towards older age Changes to everyday practice often require changes to general attitudes. In some previous discourses, older age has been framed as the period of life when people require costly care and cannot contribute to the national economy; therefore, they are a burden on society. This makes older people into scapegoats, by setting an unfair framework (38). First, it contrasts older people as a cohort with the rest of society (exclusion), judges older people in an overall manner (ignoring diversity) and exposes them to discrimination. Secondly, it regards this period of life as dominated by a need for care. All people need some care, even if older people usually require not only a different kind but also more care than younger people. But being cared for does not dominate life in older age. The kind of care and how much care older people need depend on several inherited, cultural, environmental and social conditions and not only on chronological age. Thirdly, the frame considers mainly economic functions and monetary contributions as valuable. Evaluations of contributions to society should include non-economic values, such as relationships, life experience, wisdom, reflectiveness and sources of identity (e.g. through family history). Older people can contribute to some of these values in precious ways.

Human rights protect all people with no difference according to age or other individual properties. Equity, equality and nondiscrimination are basic principles that guide our ethical reflection about every human being. The frame described above negates these principles. To overcome the weaknesses of the frame, countries and communities should find a culturally appropriate frame for older age that reflects the true qualities of older people in the present time and an appreciation of their value.

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USION EQUITY SOLIDARITY LONG-TERM ATION UTILITY RECIPROCITY QUALITY OF ONG-TERM CARE FAIRNESS ETHICS UTILY QUALITY OF LIFE AGEING INCLUSION NESS ETHICS UTILITY NON-DISCRIMINAAGEING INCLUSION EQUITY SOLIDARITY N-DISCRIMINATION UTILITY RECIPROCITY SOLIDARITY LONG-TERM CARE FAIRNESS RECIPROCITY QUALITY OF LIFE AGEING CARE FAIRNESS ETHICS UTILITY NONITY OF LIFE AGEING INCLUSION EQUITY CS UTILITY NON-DISCRIMINATION UTILITY USION EQUITY SOLIDARITY LONG-TERM Participants at the WHO meeting comparable strategies on ageing and ATION UTILITY RECIPROCITY OF health. The framework should include contributed to designing QUALITY a framework ONG-TERM CARE ETHICS for ethics inFAIRNESS healthy ageing, usingUTILthe questions such as, how should societies WorldOF report on ageing and health to find treat older people? Do older people have Y QUALITY LIFE AGEING INCLUSION appropriate principles, interpretations NESS ETHICS UTILITY NON-DISCRIMINA- any special claims or obligations due to and justifications. The aim of the meeting their age, and, if so, why? How should AGEING INCLUSION EQUITY SOLIDARITY was to initiate discussions on international resources be allocated to achieve the N-DISCRIMINATION UTILITY RECIPROCITY ethical guidance for decision-makers, goal of universal health coverage? What SOLIDARITY LONG-TERM CARE FAIRNESS care providers and carers that could be guidance can be given to policy-makers RECIPROCITY OFnationally. LIFE AGEING adapted QUALITY and adopted The about acceptable and unacceptable CARE FAIRNESS ETHICS UTILITY NON- trade-offs in resource allocation? Is discussions focused on ethical problems ITY OF LIFE AGEING INCLUSION EQUITY arising in the context of the health needs there inequality among older people of older people, how to define them, how that demands social action? How should CS UTILITY NON-DISCRIMINATION UTILITY to reflect differences between individuals USION EQUITY SOLIDARITY LONG-TERM intergenerational justice be understood? and cultures, the appropriate social ATION UTILITY RECIPROCITY QUALITY OF What aspects of the quality of life of older and medical services for older people ONG-TERM CARE FAIRNESS ETHICS UTIL- people in different societies and cultures and examples of good practice. The raise concern about fairness or injustice? Y QUALITY OF LIFE AGEING INCLUSION participants identified many ethical issues An open, transparent, rational discussion NESS ETHICS UTILITY NON-DISCRIMINAand topics related to ageing and health of these questions and their normative AGEING INCLUSION EQUITY systematically. SOLIDARITY implications presupposes philosophical that should be addressed

5.

Conclusions

They agreed that the World report was a good starting-point for an ethical framework but should be complemented by a systematic approach to addressing the association between those principles and additional ones such as solidarity and reciprocity. The systematic approach could also include the ethical issues addressed at the meeting to illustrate possible difficulties in use of the strategies proposed in the World report and

and ethical reasoning. Such reasoning will also strengthen the case for a rightsbased approach, as proposed in the World report. The meeting did not attempt to supply definite solutions or objective statements but suggested topics for further discussion and confirmed certain issues, basic values and principles that should guide further research and action.

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RECIPROCITY QUALITY OF LIFE AGEING INC CARE FAIRNESS ETHICS UTILITY NON-DISCRIM LIFE AGEING INCLUSION EQUITY SOLIDARIT ITY NON-DISCRIMINATION UTILITY RECIPRO EQUITY SOLIDARITY LONG-TERM CARE FA TION UTILITY RECIPROCITY QUALITY OF LIF LONG-TERM CARE FAIRNESS ETHICS UTILITY QUALITY OF LIFE AGEING INCLUSION EQUIT ETHICS UTILITY NON-DISCRIMINATION UTILI INCLUSION EQUITY SOLIDARITY LONG-TE DISCRIMINATION UTILITY RECIPROCITY QU World report on ageing and health. Geneva: World Health Organization; 2015 (http:// SOLIDARITY LONG-TERM CARE FAIRNESS ET apps.who.int/iris/bitstream/10665/186463/1/9789240694811_eng.pdf?ua=1, accessed 6 November 2017). RECIPROCITY QUALITY OF LIFE AGEING INC Multisectoral action for a life course CARE approach to healthy ageing: draft global strategy and FAIRNESS ETHICS UTILITY NON-DISCRIM plan of action on ageing and health. Report by the Secretariat) (document A69/17). Geneva: LIFE AGEING INCLUSION EQUITY SOLIDARIT World Health Organization; 2016 (http://apps.who.int/gb/ebwha/pdf_files/WHA69/A69_17-en. ITY NON-DISCRIMINATION UTILITY RECIPRO pdf?ua=1, accessed 6 November 2017). EQUITY SOLIDARITY LONG-TERM CARE FA Butler RN. Age-ism: another form of bigotry. Gerontologist. 1969;9:243–6. TION UTILITY RECIPROCITY QUALITY OF LIF Butler RN. Why survive? Being old in America. Baltimore (MD): Johns Hopkins University LONG-TERM CARE FAIRNESS ETHICS UTILITY Press; 1975:35. QUALITY OF AGEING Discrimination and negative attitudes about ageing are LIFE bad for your health.INCLUSION Geneva: World EQUIT Health Organization; 2016 (www.who.int/mediacentre/news/releases/2016/discriminationETHICS UTILITY NON-DISCRIMINATION UTILI ageing-youth/en/, accessed 6 November 2017). INCLUSION EQUITY SOLIDARITY LONG-TE Officer A, Schneiders ML, Wu D, Nash P, Thiyagarajan JA, Beard JR. Valuing older people: DISCRIMINATION UTILITY RECIPROCITY QU time for a global campaign to combat ageism. Bull World Health Organ. 2016; 94:710–A. SOLIDARITY LONG-TERM CARE FAIRNESS ET Pillemer K, Burnes D, Riffin C, Lachs MS. Elder abuse: global situation, risk factors, and RECIPROCITY QUALITY OF LIFE AGEING INC prevention strategies. Gerontologist. 2016;56(Suppl. 2):S194–205. CARE FAIRNESS ETHICS UTILITY NON-DISCRIM Kydd A, Fleming A. Ageism and age discrimination in health care: Fact or fiction? A narrative LIFE AGEING INCLUSION EQUITY SOLIDARIT review of the literature. Maturitas. 2015;81:432–8. ITY NON-DISCRIMINATION UTILITY RECIPRO Nicolas JA, Hall WJ. Screening and preventive services for older adults. Mt Sinai J. Med. EQUITY SOLIDARITY LONG-TERM CARE FA 2011;78:498–508. TION UTILITY RECIPROCITY QUALITY Iversen TN, Larsen L, Solem PE. A conceptual analysis of ageism. Nordic Psychol. 2009;61:4. OF LIF

11. Levy BR, Slade MD, Murphy TE, Gill TM. Association between positive age stereotypes and recovery from disability in older persons. JAMA. 2012;308:1972–3. 12. Levy BR, Slade MD, Kunkel SR, Kasl SV. Longevity increased by positive self-perceptions of aging. J Personality Social Psychol. 2002;83:261. 13. Allen JO. Ageism as a risk factor for chronic disease. Gerontologist. 2016;56:610–4. 14. Missing voices: views of older persons on elder abuse. A study from eight countries: Argentina, Austria, Brazil, Canada, India, Kenya, Lebanon and Sweden. Geneva: World Health Organization; 2002 (www.who.int/ageing/projects/elder_abuse/missing_voices/en/, accessed 6 November 2017). 15. Community survey of elder maltreatment: a report from the former Yugoslav Republic of Macedonia. Copenhagen: World Health Organization Regional Office for Europe; 2014.

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16. European report on preventing elder maltreatment. Copenhagen: World Health Organization Regional Office for Europe; 2011. 17. Crome P, Cherubini A, Oristrell J. The PREDICT (increasing the participation of the elderly in clinical trials) study: the charter and beyond. Expert Rev Clin Pharmacol. 2014;7:457–68. 18. Cherubini A, Del Signore S, Ouslander J, Selma T, Michel JP. Fighting against age discrimination in clinical trials. J Am Geriatr Soc. 2010;58:1791–6. 19. Sivaramakrishnan K. Coming of age: experts and the global politics of aging. Boston (MA): Harvard University Press; 2018. 20. Nord E, Daniels N, Kamlet M. QALYs: some challenges. Value Health. 2009;12(Suppl. 1): S10–5. 21. Callahan D, Gaylin W. How long a life is enough life? Hastings Cent Rep. 2017;47:16–8. 22. Daniels N. Just health care. Cambridge: Cambridge University Press; 1985. 23. Fit for frailty. Consensus best practice guidance for the care of older people living with frailty in community and outpatient settings. London: British Geriatric Society; 2014. 24. Dementia: ethical issues. London: Nuffield Council on Bioethics; 2009 (http://nuffieldbioethics. org/project/dementia, accessed 6 November 2017). 25. Strech D, Mertz M, Knüppel H, Neitzke G, Schmidhuber M. The full spectrum of ethical issues in dementia care: systematic qualitative review. Br J Psychiatry 2013;202:400–6. 26. Beauchamp TL, Childress JF. Principles of biomedical ethics, 7th edition. New York (NY): Oxford University Press; 2013. 27. Laslett P. A fresh map of life, the emergence of the third age. London: Weidenfeld and Nicholson; 1989. 28. Brockmann H. Why is less money spent on health care for the elderly than for the rest of the population? Health care rationing in German hospitals. Soc Sci Med. 2002;55:593–608. 29. Tinetti ME, Fried T. The end of the disease era. Am J Med. 2004;116:179–85. 30. Kuluski K, Peckham A, Williams AP, Upshur REG. What gets in the way of person-centered care for people with multimorbidity? Lessons from Ontario, Canada. Healthcare Q. 2016;19:17–23. 31. Disability Discrimination Act 1995. London: Her Majesty’s Government (http://www.legislation. gov.uk/ukpga/1995/50/contents/enacted, accessed 6 November 2017). 32. Global network of age-friendly cities and communities. Geneva: World Health Organization; 2017 (http://www.who.int/ageing/projects/age_friendly_cities_network/en/, accessed 6 November 2017). 33. The over-supply of carers for people with minor restrictions in activities of daily living and the under-supply for instance of carers for mobility, incontinence and feeding has been verified, especially in the western context. See reference (32). Lahmann NA, Suhr R, Kuntz S, Kottner K. Over- and undersupply in home care: a representative multicenter correlational study. Aging Clin Exp Res. 2015;27:209–19. 34. Neugarten DA, editor. The meanings of age. Selected papers of Bernice L. Neugarten. Chicago (IL): University of Chicago Press; 1996.

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35. Twigg J. Fashion and age. Dress, the body and later life. London: Bloomsbury Academic Publishing; 2003. 36. Hughes JC. The physiology and psychology of aging: Should aging be successful or authentic? In: Scarre G, editor. The Palgrave handbook of the philosophy of aging. Basingstoke: Palgrave Macmillan; 2016:49–68. 37. Schweda M. “A season to everything”? Considering life course perspectives in bioethical and public health discussions on aging. In: Schweda M, Pfaller L, Brauer K, Adloff F, Schicktanz K, editors. Planning later life. Bioethics and public health in ageing societies, Abingdon: Routledge; 2017:11–30. 38. Binstock R. The aged as scapegoat: the Donald P. Kent Memorial Lecture. Gerontologist. 1983;23:136–43.

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Annex 1. Agenda Time 08:30–09:00 09:00–09:30 Title Introduction and background Presentation of the World report and the Global strategy on ageing and health Ageism and issues related to ageism 09:30–09:45 09:45–10:00 10:00–10:15 10:15–10:45 10:45–11:00 Ageism, an introduction Elder abuse is ‘fraud’ with ethical tensions The exclusion of older people from health research and its consequences Moderated discussion Coffee break Socio-economic policies influencing care and support to ageing populations 11:00–11:15 11:15–11:30 11:30–12:00 12:00–13:15 How societies conceptualize ageing. Global diversity in conceptualization of ageing Age-related rationing and priority setting Moderated discussion Lunch Health system approach to ageing 13:15–13:30 13:30–13:45 13:45–14:15 Prevention and early detection of clinical conditions in older people Establishing long-term care systems in low resource settings Moderated discussions Caring and carers 14:15–14:30 14:30–14:45 14:45–15:15 15:15–15:30 Creative care for caregivers in the community: the evidence from India Dependence and caregiving in older age: Nigeria experience Moderated discussion Coffee Clinical, medical and health issues related to ageing 15:30–15:45 15:45–16:15 Dementia and ethical issues Moderated discussion Defining an ethical framework 16:15–17:15 Potential elements of an ethical framework for ageing and well-being. What values and principles. Moderated discussion Wrap up and next steps Sridhar Venkatapuram Julian Hughes Alessandro Blasimme Amit Dias (by Webex) Richard Uwakawa Rachel Albone Matteo Cesari Puangpen Chanprasert Hans-Jörg Ehni Kavita Sivaramakrishnan Hans-Jörg Ehni Sridhar Venkatapuram Mira Schneiders Yongjie Yon Antonio Cherubini Sridhar Venkatapuram Ritu Sadana (by Webex) Speaker

17:15–17:30

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Annex 2. Participants Albone, Rachel Blasimme, Alessandro Cesario, Matteo Chanprasert, Puangpen Cherubini, Antonio Dias, Amit (by Webex) Ehni, Hans-Joerg Foster, Liam Gibson, Jennifer (by Webex) Hofmann, Bjorn Hughes, Julian Kadi, Selma László Kovács Luna, Florencia (by webex) Rangel de Almeida, João Schneiders, Mira Schweda, Mark Sivaramakrishnan, Kavita Spindler, Mone Upshur, Ross (by Webex) Uwakwa, Richard Venkatapuram, Sridhar Wiesing, Urban World Health Organization Mekonnen Gebremariam, Kebadu Sadana, Ritu (by Webex) Saxena, Abha Yon, Yongjie Help Age International, United Kingdom University of Zurich, Switzerland Université de Toulouse, France Bureau of International Cooperation Department of Health, Ministry of Public Health Bangkok Thailand University of Perugia, Italy Goa University, India Institute for Ethics and History of Medicine, Eberhard Karls University, Tübingen, Germany University of Sheffield, United Kingdom University of Toronto Joint Center for Bioethics, Canada Centre for Medical Ethics, University of Oslo, Norway University of Bristol, United Kingdom Institute for Ethics and History of Medicine, Eberhard Karls University, Tübingen, Germany Institute for Ethics and History of Medicine, Eberhard Karls University, Tübingen, Germany University of Beunos Aires, Facultad Latinoamericano de Ciencias Sociales, Argentina Wellcome Trust, United Kingdom Ethox Centre, University of Oxford, United Kingdom Institute for Ethics and History of Medicine, Göttingen University, Germany Columbia University, United States of America International Centre for Ethics in the Sciences and Humanities, University of Tubingen, Germany University of Toronto Joint Center for Bioethics, Canada College of Health Sciences, Nnamdi Azikiwe University, Nigeria King‘s College, London, United Kingdom Institute for Ethics and History of Medicine, Eberhard Karls University, Tübingen, Germany

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