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Eubios Journal of Asian and International Bioethics

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Eubios Journal of Asian and International Bioethics EJAIB Vol. 22 (2) March ISSN Official Journal of the Asian Bioethics Association (ABA) Copyright 2012 Eubios Ethics Institute
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Eubios Journal of Asian and International Bioethics EJAIB Vol. 22 (2) March ISSN Official Journal of the Asian Bioethics Association (ABA) Copyright 2012 Eubios Ethics Institute (All rights reserved, for commercial reproductions). Contents page Editorial Note: End of Life Care Darryl Macer 49 Death with dignity is impossible in contemporary Japan: Considering patient peace of mind in end-of-life care 49 - A. Asai, K. Aizawa, Y. Kadooka, and N. Tanida Three Level Structure Analysis of End of Life Care in Japan 53 - Sawa Kato Advance Directives in Hong Kong: ethical perspective 58 - Wai Yan Law Death Anxiety in University Students 65 - S. Kadioğlu, O. Ögenler, F. Kadioğlu, Mehmet Ali Sungur Bioethics in the Islamic Republic of Iran 69 - Nader Ghotbi Policy Analysis of Measures Taken Against the H1N1 Influenza Virus of Shinya Ueno Bioethical issues and HIV stigma - S. Nithianandam 81 Consideration of issues concerning Physician s Prescriptions in the Practice of Occupational Therapy in Japan 82 - Katsuaki Yamano The Present State of Commercial Surrogacy in India and the Ethical Assessment of Physician in Charge Dr. Nayna Patel Ethical Research concerning Indian Reproductive Medicine, Especially Commercial Surrogacy 85 - Masayuki Kodama ABA membership 91 Editorial Note: End of Life Care The first three issues of EJAIB for 2012 include papers from the Fifth UNESCO-Kumamoto University Bioethics Roundtable, held 3-5 December 2011 in Japan. The March issue focuses on papers on end of life care and advance directives. There are also some papers submitted to EJAIB on related topics, and a couple of other papers on medical ethics issues including H1N1 policy in Japan, and surrogacy tourism and HIV in India. The authors describe different cultural perspectives that affect bioethical decision making, from individual beliefs and experiences to policy and law., and explore ways that ethical principles can be applied to decision making regarding the end of life care and bioethics in Japan, Hong Kong, Turkey and Iran. - Darryl Macer Please renew your Asian Bioethics Association subscriptions for 2012, and submit abstracts to the 13th Asian Bioethics Conference, August 2012 in Kuala Lumpur, Malaysia. Editorial address: Prof. Darryl Macer, Director, Eubios Ethics Institute, c/o Center for Ethics of Science and Technology, Chulalongkorn University, Faculty of Arts, Chulalongkorn University, Bangkok 10330, Thailand Death with dignity is impossible in contemporary Japan: Considering patient peace of mind in end-of-life care - Atsushi Asai, Kuniko Aizawa, Yasuhiro Kadooka, and Noritoshi Tanida - Atsushi Asai (corresponding author), Department of Bioethics, Kumamoto University Graduate School of Medical Science, Kumamoto University, Kumamoto, Honjo, Kumamoto, , Japan Abstract Currently in Japan, it is extremely difficult to realize the basic wish of protecting personal dignity at the end of life. A patient s right to refuse life-sustaining treatment has not been substantially warranted, and advance directives have not been legally enforceable. Unfortunately, it is not until the patient is moribund that all concerned parties start to deliberate on whether or not death with dignity should be pursued. Medical intervention is often perceived as a worthwhile goal to not only preserve life, but also provide psychological benefit to the family, regardless of its effect on the patient. To feel they are doing something, family members tend to act against the imperative Do not inflict on others what you would not wish done to you, and permit extraordinary measures they would not want themselves. Another complication in 50 Eubios Journal of Asian and International Bioethics 22 (March 2012) Japanese culture is the necessity of unanimous decisions for end-of-life care. If there is conflict between a patient and his/her family on accepting medical intervention, the view of the latter is more likely to prevail due to different perceptions of human dignity. As a result, incapacitated patients in Japanese clinical settings often suffer through extraneous medical procedures, particularly during endof-life care. Patient dignity is in danger from a national refusal to accept major bioethical principles such as having respect for patient autonomy, serving the best interests of the patient, doing no harm, and ensuring fairness at the end of life. We argue that more education about human dignity and legislation for death with dignity are necessary. Peace of mind for patients during end-oflife care will never be achieved in this society unless drastic changes take place in medical ethics and law. 1 Introduction 1 A peaceful, natural death, or death with dignity, is of great interest in contemporary Japan. The deaths of famous people are frequently reported in detail by news media, and special feature articles and issues on ideal ways of dying are popular. Some physicians have even raised questions about end-of-life care in books with impressive titles such as Peaceful Death (Heion-shi), Satisfactory Death (Manzoku-shi), and Time to Die for the Japanese (Nihonjin no Shinidoki). (1-3) These authors argue that a longer life span does not necessarily result in a happier life and makes it more difficult to die with peace and satisfaction. They claim that current endof-life care in Japan needs reform. We argue that the preferences of patients and the Japanese public towards end-of-life care have not been sufficiently respected and that inappropriate medical intervention severely damages human dignity in the final stages of life. Both UNESCO s Universal Declaration on Bioethics and Human Rights and the World Medical Association Declaration of Lisbon on the Rights of the Patient clearly state that a patient s human dignity must be protected and respected (4, 5). Nonetheless, factors other than ethical disagreement can obstruct decisionmaking and lead to difficult situations. In this paper, we point out the psychological, social, legal, and ethical dimensions of terminating medical intervention as related to death with dignity in contemporary Japan. Human dignity and death with dignity are discussed, and their current trends and difficulties are described. We also introduce practical questions and answers on termination of medical intervention formulated by American bioethicist E.J. Emanuel (2011) (6) and consider problematic circumstances specific to Japan. Finally, six underlying causes for current attitudes on death with dignity are suggested. We conclude that present end-of-life care in Japan damages human dignity and requires urgent reform through education and legislation to promote peace of mind for all concerned parties. 1 This paper is based on presentation at the 5 th. UNESCO- Kumamoto University Bioethics Roundtable (December, 2011, Kumamoto, Japan) and is a shortened form of an original article, Imano Nippon deha songenshi wa fukano written in Japanese, to be published in the Journal of Hospice care and Home care, Human dignity and death with dignity The concept of human dignity has become the basis for ethical, legal, and social judgments, as well as criticisms of medical treatments and research. The Declaration of Helsinki states that, it is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy, and confidentiality of personal information of research subjects (7). Section 10 of the Declaration of Lisbon similarly states that the patient's dignity and right to privacy shall be respected at all times in medical care and teaching, as shall his/her culture and values (5). Gastmans et al. argue that clinical ethicists must interpret clinical reality in the light of human dignity, thus placing the concept at the root of clinical ethics (8). The meaning of human dignity is ambiguous, however, with various proposed definitions. The first definition acknowledges that dignity is part of human existence itself (9). Christianity recognizes human values on the basis of being created in God s image; therefore, dignity is considered a fundamental concept and source of personal freedom and human rights (10). Dignity is an absolute value people possess as long as they are human, and it has been argued that everyone should have mutual respect for the dignity of others (11). Consistent with this school of thought, human dignity is given the highest priority and should never be opposed by secular, selfish considerations. A second school of thought suggests that dignity is a part of human attributes such as a rational mind, autonomy, and self-selection. Socrates and Aristotle believed that human dignity resided in deep thinking, self-consciousness, and the ability to choose freely (12). Some moral and ethical viewpoints consider dignity as a collection of intangible, distinctly human goods (13). In addition, some authors list virtue, consistency, and pride as part of an individual s dignity (11). They define dignity as humanness, being free, not feeling miserable or humiliated, or living without losing human pride (14). Others may disagree with those definitions; in fact, many would argue that people who lack the above characteristics still possess human dignity. A different perspective reveals at least two unique concepts of dignity; one is inherent dignity, where every person has as a universal and inalienable moral quality which cannot be earned or taken away, and the second is individualistic dignity, which is tied to personal goals or social circumstances and can be enhanced or diminished depending on circumstances. These concepts of dignity can be assaulted by events outside the control of the person involved, such as a debilitating disease (15). A commentator has also proposed dignity of identity as the dignity we attach to ourselves as integrated and autonomous people with a history, future, and relationships to other human beings (16). This dignity is strongly associated with self-respect and feelings of worth (17). Human dignity thus appears to have no definite characteristics that are universally agreed on. There is no consensus as to what human dignity really is, what conditions are considered to be dignified, and what constitutes a violation of human dignity. Nonetheless, Eubios Journal of Asian and International Bioethics 22 (March 2012) 51 individuals usually feel they possess some form of dignity; they have a sense of their own importance, pride, virtue, and a belief that there is something important in their lives. One could speculate that most individuals have some notion of their own dignity, if not a clear-cut definition. Another important connotation to consider is that people should respect others human dignity as something everyone should mutually respect in each other. The Dignity Principles from the British Medical Association Ethics Department explain that patients should be treated with respect and courtesy, and their social and cultural values should be respected (18). Inconsistency between one s own dignity and the evaluation of others dignity becomes a serious problem related to end-of-life care. For example, a person may lose their dignity and thus hope to die; however, others might feel there is still dignity and forcibly prolong the individual s life. These two perspectives of human dignity - what people actually feel about themselves and what others identify in them - thus stand independent of each other. We believe human dignity is defined as values in spirit, morality, and character that humans possess precisely because they are humans, and which people can take pride in and stand on. We would also argue that death with dignity is a way of dying that allows a terminal individual to feel and maintain dignity until the final moments. For those who suffer consciousness disturbance, death with dignity could be a way of dying that convinces a sympathetic family that the patient s dignity was appropriately respected. We feel that what is most important for an individual receiving medical care is the feeling that his or her dignity is protected and respected. It is also important to avoid situations where a patient feels they would rather die. Finally, the patient s dignity outlook must be given priority over the outlooks of others. We believe human dignity is the most important value a patient has in the clinical setting. 3 Domestic social tendencies and ethically difficult situations For a long time, Japanese clinical settings have confronted several difficult situations with discontinuing life support. Police investigated doctors over the past twenty years who removed coma patients from respirators at the end of their life, and all cases resulted in the issuance of judicial documents. No physician has been prosecuted so far, but concerns among healthcare professionals on the discontinuation of artificial respiration remain great. Hospital ethics committees in Japan have given priority to legal concerns rather than ethical ones and tend to propose policies that do not admit to cancellation of medical intervention procedures such as artificial respiration or tube feeding. We argue that this represents timidity and avoidance of ethical judgment, which can lead to ignoring the human rights of the patient. Even if an expert in clinical ethics judges the cancellation of life support to be ethical, an ethics consultant would then have to explain the current legal concerns in Japan to the medical professionals. Because the withdrawal of artificial respiration by a doctor to respect patient wishes was substantially impossible and the ethics committee could not reach a conclusion, a tragic incident occurred when a family member turned off her son s artificial respiration instead and was found guilty of murder (19). Kodama wrote that the medical person who performed cancellation and withholding of life support has been judged for murder after the fact without being shown legal judgment beforehand. I cannot but feel the absence of the law, and this situation is absurd (20). Actually, no laws against cancellation of life-sustaining procedures have ever existed in Japan. The courts tend to apply criminal law on assisted suicide and murder selfrighteously and forcibly, even though death with dignity differs from euthanasia. We cannot regard Japan as a constitutional state in this context. Table 1 Practical questions by Emanuel and current situations concerning end-of-life care in both the United States (6) and Japan (by the authors) Is there a legal right to refuse medical interventions? US YES JPN Uncertain (substantially none) What interventions can be legally and ethically terminated? US ANY and ALL JPN Probably none of lifesustaining interventions Is there a difference between withholding life-sustaining interventions and withdrawing them? US NO JPN YES (withdrawing is unacceptable in principle. Or both might be unacceptable depending on the kind of interventions) Whose view about terminating life-sustaining interventions prevails if there is a conflict between the patient and family? US The views of a JPN Case-by-case, and competent adult patient prevail. collective decision-making is predominant Who decides about terminating life-sustaining interventions if the patient is incompetent? US Appointed proxy or JPN Family members a legally designated hierarchy: (1) spouse, (2) adult children, (3) parents, (4) siblings, and (5) without clear hierarchy or border, depending on power balance among the members available relatives. Are advance care directives legally enforceable? US YES JPN no laws of this matter exist 4 Six factors that hinder death with dignity in contemporary Japan Table 1 displays current situations concerning end-oflife care in both the United States and Japan (6). Six factors in particular could prevent death with dignity as defined above for end-of-life care in Japan. 4-1 Absence of law As previously discussed, no written legal regulation concerning termination of medical intervention has existed to date in Japan, and healthcare professionals are uncertain about which actions are forbidden. The Tokyo High Court declared in the Kawasaki Kyodo Hospital case that patient self-determination, family 52 Eubios Journal of Asian and International Bioethics 22 (March 2012) surrogate decision, or the limits of a physician s obligation to treat were not decisive grounds to support a legitimate termination of life support. They also claimed that withdrawal of life support would go against laws prohibiting murder at the victim s request and assisted suicide (21). In addition, no legally enforceable advance directives have existed in Japan so far. A relevant bill was once presented to the Diet in 2007, but no further discussions have occurred. 4-2 Certainty of impending death When death is not immediate, the right to refuse lifesustaining treatment is not considered at all in contemporary Japan. The certainty of impending death appears to have become the main prerequisite for respecting patient decisions. In addition, no court, legislation, or guidelines have ever presented a clear time limit or precise definition of impending. The Yokohama High Court argued that the possibility of recovery always exists, and a doctor should continue medical intervention unless the chance of survival is absolutely zero. That a physician should do his/her best and everything possible to save a patient even with slim odds of survival is not only a medical duty, but could also be a broader and non-professional obligation (21). We believe the attitude of the court influences all ethical judgments about death with dignity from the start. Their decisions do not consider the principle that medical treatment is determined by the patient. Regardless of death, medical treatment should ultimately be an arbitrary power matter for the patient or their decision-making caretaker. However, death with dignity is currently recognized only after it becomes useless for anyone, and human dignity is stained thoroughly. We cannot understand why the degree of terminal prognosis is connected to the permissibility of death with dignity. Such thinking equates to a position that accepts the sanctity of life as a firm premise, with no reflection or questioning of the death with dignity argument. A judicial requirement of certainty for imminent death forgets that medical care is fundamentally fraught with uncertainty. There is a strong possibility that definite determination of impending death makes death with dignity in Japan extremely difficult. 4-3 Problematic distinctions In general, the termination of medical intervention has become a great social issue with accompanying attention. The police investigate, and then media tend to rush to a hospital and report that euthanasia was performed. Attitudes on withholding life-prolonging treatment are not clear, although there are big social and legal differences compared to withdrawal. The difference does not ethically exist, however, since both actions have the same effect from a patient s perspective. Death with dignity is compatible with many ethical guidelines worldwide and the views of most bioethics scholars, but healthcare professionals bear a heavy psychological burden if their society does not consider the act to be just. Distinction issues also exist between ordinary intervention measures and extraordinary ones. 4-4 Unanimous decisions When the opinion of the family differs from that of the patient, patient intent may not be given priority in Japan. Life-prolonging measures may thus continue at the request of the family even when death becomes certain because medical treatment policies give more weight to unanimous decisions rather than self-determination. The Principle of Harmony (Wa no Seishin) overshadowed respect for autonomy in most human interactions, including clinical ones, until now (22). When a patient has strong family relations and/or ve
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