restricted access A Notable Discrepancy between Principle and Practice in Family Decision-Making
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A Notable Discrepancy between Principle and Practice in Family Decision-Making

Our original interest in presenting the case lay in the fact that the family barely spoke of the patient’s preference or best interests. Our experience shows that the case is, in this respect, not unusual in Japan. This might lead one to ponder on a dominant view in bioethics literature; it is maintained that the family of an incompetent patient should be invested with decision-making authority because the family is usually best situated to know the patient’s preferences and best interests. The principle and the rationale are supposedly applicable to cases where the patient has no prospect of recovering competence as well. (See for example, T. Beauchamp and J. Childress, Principles in Biomedical Ethics, Sixth Edition, Oxford University Press, 2008: Ch. 4 and 5; A. Buchanan and D. Brocsk, Deciding for Others, Cambridge University Press, 1990: 136–7.)

Relevant court decisions and professional medical guidelines in Japan agree with this view. For instance, the court decision from the Tokai University Hospital Euthanasia Case (東海大学附属病院安楽死事件, Yokohama district court, 1995) specifies conditions for termination of treatments with an incompetent patient as follows. “It is allowed to presume the patient’s will, based on the family’s expressed opinions. […] [F]or this purpose it is necessary that the family who expresses opinions knows the patient’s character, values and views of life well so that they are suited to presume the patient’s will correctly. […] And the family’s expressed opinion must be based on sincere considerations from the patient’s perspective (§2. 2).”

Statements of the same spirit can also be found in the Guideline on Decision Making Procedure for Terminal Care published by Japanese Ministry of Health, Labour, and Welfare in 2007 (厚生労働省「終末期医療の決定プロセスに関するガイドライン」). [End Page 157] As regards incompetent patients, the guideline states that “[w]hen the family can presume the patient’s will, the basic procedure is to honor this presumed will in determining the treatment policy that is in the patient’s best interest. […] When the family cannot presume the patient’s will, the basic procedure is to discuss well with the family to determine the treatment policy that is in the patient’s best interest (Part 2. (2) ①&②).”

These recommendations, if valid, should pose a challenge to the decision-making authority of the family of our case. While the family in general had little to say about treatment policy, there was indeed no mention in their opinions of what the patient would want or her preferences. Opinions of some family members, especially of the older brother, may well be understood as expressing consideration of the patient’s best interests, but even this much is not very clear.

More importantly, the recommendations appear rather foreign to the minds of medical staff in Japan. The case was sent to the hospital’s ethics team for consultation. Later it was presented and discussed at a training workshop for the hospital’s staff (in which the authors of this commentary participated as organisers). On both occasions, the family’s decision-making authority was not doubted on the basis that the family did not think in terms of the patient’s wishes or interests. Nor was it ever clearly suggested that the attending physician should discuss further with the family in order to ensure that treatment choices would accord well with the patient’s values and character. More attention was paid to both psychological and financial interests or burdens of the family members.

In the terminal care context in Japan, unconscious patients’ “real wishes”, “interests” and “character” do not seem to be the only, or even the major, considerations for many families. And medical staff are not usually accustomed to encourage the family to consider in these terms. We do not know if this is peculiar to our culture, but in any case, the visible discrepancy between principle and practice requires treatments one way or the other.

Hitoshi Arima

Hitoshi ARIMA is Associate Professor of Moral Philosophy and Applied Ethics at Yokohama City University Graduate School of Urban Social and Cultural Studies, Yokohama, Japan. He is also a member of the ethics committee of...