Autonomy, Medical Decision-Making, Ethics Committees, Bioethics Teaching and the Story of “Uncle Fred”

“Autonomy” is a word that continues to be used so equivocally that it is truly helpful to see more scholars writing to give it clarity and hopefully, better and more nuanced understanding. In this issue, Hiroyuki Nagai makes a contribution in this regard in the article entitled “Autonomy from the Family: A History of Public Policy on Medical Decision-Making in Japan”. Nagai presents an approach to informed consent that takes into account two steps reflecting: (1) the ethical implications of patients autonomously providing their families with permission to make decisions on their behalf and (2) the legal implications of preventing families from refusing treatments that patients previously consented to based on their own free will. By digging into the history of medical decision-making in Japan, the author elucidates the role of consent among patients and family members, taking note of the diversity of medical practices that inform the exercise. The author takes the view that comparing the traditional informed consent model with the family consent model allows for a deeper understanding of medical decision-making in a way that avoids excessive reliance on the ethical and legal capacity for judgment of either the patient or family.

The study by Hui et al. also deals with decision-making, but more specifically in relation to providing medical information and the use of Advance Directives by Chinese cancer patients in Hong Kong. A key finding is that Chinese cancer patients in Hong Kong want to be informed of their medical condition and treatment options in order to make decisions and adjustments. This appears to indicate how wary one has to be of the often cited view that terminally ill oriental patients need to be protected from knowledge of their imminent death, or more specifically, that cancer patients in Eastern countries prefer non-disclosure of information and non-involvement in decision-making, in keeping with their cultural traditions.

The study also shows that patients hold healthcare professionals responsible for providing information to them directly, even indicating a preference for specialists rather than general practitioners to do it. This preference appears to signal more limitations to the family’s involvement in decision-making, especially if we take into account the additional finding that patients think doctors should not disclose information to the family without the patient’s permission, or withhold information from a patient at his family’s request. However, the desire to assert an individual patient’s right to be informed and make self-affecting medical decisions has to be understood in the context of overlapping findings that “patients want to participate and be listened to rather than make decisions”; that patients affirm “that disclosing medical information to family promotes communication and trust”; and that “patients remain reluctant to sign … [Advanced Directives], preferring to leave oral instructions or appoint family as proxy decision-makers”. The totality of findings offer interesting nuances that are discussed further in the paper and illustrate a complicated but enriching account of what autonomy entails in different situations.

Patel, Sridharan and Patel’s “Barriers to the Ethics Committee in India: Ethical and Quality Issues” takes off from the continuing collaboration between economically well-developed sponsor countries and India, thereby maintaining the latter’s role as a hub for clinical trials. Notwithstanding the tough regulations implemented in the country concerning clinical trials, transnational collaboration continues to raise concerns about the potential exploitation of developing country patients. The survey of clinical health professionals in India regarding their perceptions of the country’s ethical review process and of the performance of independent Indian institutional research ethics committees identifies pertinent ethical issues and challenges in clinical research. While the study confirms that most respondents have had formal research ethics training, it also reveals a number of significant challenges. For example, there are tricky conflicts of interest characterised by a lack of awareness of the need for independence of ethics review committees in safeguarding patient safety, and a tendency to rely (without independent verification) on explanations provided by the sponsors, clinical research organisations or investigators in reply to ethics committee inquiries. This...