Information and self-determination

12 World Health • 49th Yeor, No. 5, September-october 1996 Information and self· determ.ination Kazumasa Hoshino Probably only one-third- or certainly less than a half- of cancer patients in Japan are likely to be informed by their physi- cians of their true diagnoses and prognoses. For the remaining pa- tients , the truth is most probably told not directly to them but to someone in their family. This is a long-stand- ing social custom in Japan, and the Japanese people have not found it easy to change the practice even after ethical and legal concepts of in- formed consent and their practical importance in the patient-physician relationship have been introduced. Needless to say, some people in Japan- including bioethicists- have been critical of tbis custom. There seems to be no tradition of autonomous self-determination, either in daily life or in decision- making about health care. Indeed, decisions made by family members often override the patients ' own decisions. Although more than 70 000 people have made living wills as members of the Japanese Society for Death with Dignity, these written statements on medical measures to be terminated or not instituted are not legally protected in Japan. Indeed, no form of advance directives on procedures before or after death has yet been legalized, and laws are still in force which allow the patients' family to disregard advance direc- tives given by the deceased. The Cornea and Kidney Transplant Act of 1979 offers a good example. Even though th~ deceased person may have become a member When physicians in Japan ask patients to make a decision about their health care, the patients often hesitate to resolve any serious matter without consulting their family or close friends. of an eye bank or a kidney bank and thus have explicitly expressed the wish to donate organs, no action can be taken without the written agree- ment of the surviving family. There is no Jaw in Japan which determines a hierarchy of authority among family members. Therefore, if any member of the surviving family disagrees with this living will of the deceased, no removal of either cornea or kidney is legally permissi- ble. In general, the Japanese public pays no attention to these matters. Given the rather rigid social environ- ment, it seems obvious that people do not feel actively motivated to seek legal protection of their rights to autonomy and self-determination. When physicians ask patients to make a decision about their health care, the patients often hesitate to resolve any serious matter without consulting their family or close friends . Because the family normally looks after any sick member, they are used to taking medical factors as well as their own convenience into con- sideration before the sick person can take his or her own decision . Family ties are still very strong in Japan, and since the responsibilities taken by the remaining members of the family are very heavy, it is nec- essary for them to know directly from the physician the whole truth about the patient's medical condition in order to take the decision that seems best to them. Japan is still a collectivist society and has never experienced anything like the move- ment which campaigned in the United States in the 1960s to protect the rights of patients. As a bioethicist I hope that be- fore too long the Japanese will pay much more attention to individual rights, autonomy, self-determination and the privacy of any sick member of the family, especially as regards decision-making, and also that the wishes, dignity and quality of life of the individual will be more formally recognized and respected. • Dr Kazumasa Hoshi no is Professor Emeritus at Kyoto University, japan, and President of the )opan Association of Bioethics. His address is International Bioethics Research Center, Kyoto Women's University, 35 Kita-Hiyoshi-cho, lmakumano, Higashiyama-ku, Kyoto 605, )apon.