The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't treat (...) you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good. (shrink)

The principle of autonomy, through various court rulings, gradually became part of medical practice and tradition in the second half of the 1800s, notably when the emergence of surgical anaesthesia began to raise serious questions regarding informed consent. In fact, surgical anaesthesia was initially used not only to avoid pain but also to combat patients’ resistance to operations.

Principles of research ethics, derived largely from Western philosophical thought, are spreading across the world of higher education. Since 2006 the Japanese Ministry of Education has required universities in Japan to establish codes of ethical conduct and ensure that procedures are in place to punish research misconduct. Drawing on semi-structured interviews with 13 academics in a research-intensive university in Japan, this paper considers how research ethics is interpreted in relation to their own practice. Interviewees articulated a range of ethical issues (...) connected with data gathering and interpretation, applying for and using research funds, relationships with peers and research subjects, and the dissemination of results. The paper also explores the effect of personal values and cultural norms on the Japanese interpretation of research ethics identifying the impact in terms of the treatment of graduate research students and decision-making processes. (shrink)

Empirical studies in bioethics, as well asclinical experience, demonstrate the existenceof inter- and intra-cultural diversity invalues and perspectives on end-of-life issues. This paper argues that while survey researchcan describe such diversity, explaining itrequires ethnographic methodology that allowsordinary people to frame the discussion intheir own terms. This study of attitudestoward euthanasia in Japan found that peopleface conflicts between deeply held values suchas life versus pain, self versus other, andburden versus self-reliance that make itdifficult to rely on a ``rational person''''approach to decision-making. (...) An inductiveethnographic approach grounded in people''s lifeexperiences can indicate the reasons forvariation in responses to surveys, and canclarify the nature of ethical conflict in aparticular cultural setting. (shrink)

This paper analysed the nature of autonomy, in particular respect for autonomy in medical ethics/bioethics in Japan. We have undertaken a literature survey in Japanese and English and begin with the historical background and explanation of the Japanese wordJiritsu (autonomy). We go on to identify patterns of meaning that researchers use in medical ethics / bioethics discussions in Japan, namely, Beauchamp and Childress’s individual autonomy, relational autonomy, and O’Neill’s principled autonomy as the three major ways that autonomy is understood. We (...) examine papers discussing these interpretations. We propose using the term ‘a form of autonomy’ first used by Edmund Pellegrino in 1992 and examine the nature of ‘a form of autonomy.’ We finally conclude that the crux of what Pellegrino calls ‘something close to autonomy,’ or ‘a form of autonomy' might best be understood as the minimization of physician paternalism and the maximization of respect for patient preference. Simultaneously, we introduce a family-facilitated approach to informed consent and respond to criticism by Laura Sullivan. Finally, we discuss cross-cultural approaches and global bioethics. Furthermore, we use the term ‘Bioethics across the Globe’ instead of ‘Global Bioethics’, calling for international scholars to write works to provide an in-depth understanding of each country. We conclude that deep understanding of others is pivotal for dialogue to be of value. We hope this article will deepen the reader’s understanding of Japan and will contribute to the progress of bioethics worldwide. (shrink)

What should Japanese doctors do when asked by a patient for active voluntary euthanasia, when the family wants aggressive treatment to continue? In this paper, we present the results of a questionnaire survey of 366 Japanese doctors, who were asked how they would act in a hypothetical situation of this kind, and how they would justify their decision, 23% of respondents said they would act on the patient’s wishes, and provided reasons for their view; 54% said they would not practice (...) VE, either because they were opposed to VE as such, or because they believed that the wishes of the patient’s family should be respected.Analysis of these responses yielded the following results: Doctors willing to respect the patient’s wishes defended their decision by highlighting the significance of patient autonomy and the patient’s exclusive ownership of his or her life; doctors unwilling to act on the patient’s wishes fell into two broad categories — those who based their reasoning on the family’s objections, and those who provided other reasons for refusing VE. Respondents who said they would not comply with the patient’s wishes because of family objections provided the following kinds of rationale: doctors have serious responsibilities not only to the patient, but also to the patient’s family; the importance of the family-doctor relationship; fear of lawsuits for murder and related criminal offences; the need for agreement among all those affected by the decision, and the belief that the patient’s life is not his or her own, but the family’s. Respondents who gave non-family centred reasons for not complying with the patient’s wishes pointed to values such as the sanctity of life, or the importance of a natural deathIn the remainder of this paper, we discuss the implications of a family-centred approach to VE. (shrink)

This paper argues that the concept of paternalism is currently overextended to include a variety of actions that, while resembling paternalistic actions, are importantly different. I use the example of Japanese physicians’ non-disclosures of cancer diagnoses directly to patients, arguing that the concept of maternalism better captures these actions. To act paternalistically is to substitute one's own judgement for that of another person and decide in place of that person for his/her best interest. By contrast, to act maternalistically is to (...) decide for another person based on a reasonable understanding of that person's own preferences. The concept of maternalism allows for a more thorough assessment of the moral justification of these types of actions. I conclude that it is possible, at least in principle, to justify Japanese physicians’ non-disclosures, and that this justification must be based on an understanding of these actions as maternalistic. (shrink)

In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. A self-administered questionnaire was sent via mail (...) to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (shrink)

This paper examines two topics in Japanese medical ethics: non-disclosure of medical information by Japanese physicians, and the history of human rights abuses by Japanese physicians during World War II. These contrasting issues show how culture shapes our view of ethically appropriate behavior in medicine. An understanding of cultural context reveals that certain practices, such as withholding diagnostic information from patients, may represent ethical behavior in that context. In contrast, nonconsensual human experimentation designed to harm the patient is inherently unethical (...) irrespective of cultural context. Attempts to define moral consensus in bioethics, and to distinguish between acceptable and unacceptable variation across different cultural contexts, remain central challenges in articulating international, culturally sensitive norms in medical ethics. (shrink)

1The opinions expressed are solely those of the author and not those of the New York State Task Force on Life & the Law, nor of New York State government.

Akabayashi and Slingsby's (2006) article reminds us that the North American emphasis on individualistic autonomy is not universal. As the authors explain, personal identity in Japan is not construc...

Variation in decision-making about end-of-life care among ethnic groups creates clinical conflicts. In order to understand changes in preferences for end-of-life care among Japanese who immigrate to the United States, we conducted 18 focus groups with 122 participants: 65 English-speaking Japanese Americans, 29 Japanese-speaking Japanese Americans and 28 Japanese living in Japan.Negative feelings toward living in adverse health states and receiving life-sustaining treatment in such states permeated all three groups. Fear of being meiwaku, a physical, psychological or financial caregiving burden (...) on loved ones, was a prominent concern. They preferred to die pokkuri (popping off) before they become end stage or physically frail. All groups preferred group-oriented decision-making with family. Although advance directives were generally accepted, Japanese participants saw written directives as intrusive whereas Japanese Americans viewed them mainly as tools to reduce conflict created by dying person's wishes and a family's kazoku no jo– responsibility to sustain the dying patient. These findings suggest that in the United States Japanese cultural values concerning end-of-life care and decision-making process are largely preserved. (shrink)

Southern African countries have the highest HIV infection rates in the world. In most of the countries in the region, the rate among adults is at least 10%. The fight against HIV/AIDS has mostly been inadequate owing to the lack of proper consideration of ethical and cultural issues. In this article, the authors discuss the ethical and cultural dilemmas concerning HIV/AIDS, with Malawi as a case in point. It is argued that increasing financial resources alone, as exemplified by the Global (...) Fund to Fight AIDS, Tuberculosis and Malaria initiative, without proper attention to ethical issues, morals and appropriate legal obligations, are unlikely to reduce the spread of HIV in southern Africa. (shrink)

Informed consent honors the autonomous decisions of patients, and family consent places importance on decisions made by their families. However, there is little understanding of the relationship between these two medical decision-making approaches. Both approaches exist in Japan as part of its truth disclosure policy. What is the status of family consent in the United States, from which Japan introduced informed consent? This paper compares the situation in the United States with that in Japan, where family consent has been combined (...) with informed consent. It then explains the history of policy development through which family consent was added to informed consent in the United States. Based on this analysis, the paper suggests that the relationship between informed consent and family consent in the United States was established on the basis of a family model that places more importance on trust-based relationships than it does on blood ties. (shrink)