Good Decisionmaking for Incompetent Patients

There are two broad research priorities concerning advance directives. One is better understanding the variety and complexity of uses that advance directives now have. But some important empirical research priorities are quite properly shaped by normative or ethical concerns. Are advance directives contributing to improving decisionmaking for incompetent patients? How might they better do so in the future? What other forms of advance care planning and decisionmaking are optimal when patients do not have advance directives? These questions can only be asked against a standard of good decisionmaking for incompetent patients. In this paper I will formulate explicitly, but very briefly, an ethical standard for such decisionmaking that might inform a discussion of methods and priorities for empirical research on advance directives.[1] Who Decides There are two central ethical issues for decisionmaking for incompetent patients: who should decide for the incompetent patient and what standards or principles should guide those decisions. I shall take these issues, sues up in turn, though they are not completely independent. One of the two principal forms of advance directives, durable powers of attorney for health care, specifically addresses the first concern.by enabling persons while competent to designate who will decide for them should they become unable to make their own decisions. The availability of such durable powers of attorney in most states rely resents a policy consensus that the surrogate decisionmaker should be the person whom the patient wanted, and so designated, to be his or her surrogate. The consensus is supported by the value of self-determination or autonomy, which I understand, for present purposes, to be people's interest in making significant decisions about their lives for themselves and according to their own values or conception of a good life. It is by having our self-determination respected by others that we are able to exercise significant control over and responsibility for our lives. Now it might be thought that self@ determination is irrelevant to surrogate decisionmaking for incompetent tent patients, who by hypothesis are unable to make their own decisions. But most incompetent patients have been competent at an earlier time, in which case they can exercise their self-determination by using a power of attorney to select and instruct a surrogate. In the absence of an earlier designation of a surrogate by the now incompetent patient, common practice is to turn to a close family member when one is available. Since a close family member is usually who the incompetent competent patient would want to be the surrogate, this practice too respects the patient's self-determination. Empirical research could tell us the extent to which this is correct, and whether it is possible to predict when it is not. In most cases a close family member also will make the best decisions, although this claim requires both empirical support and a standard for good decisions. In each case, we should think of there being a strong presumption that the designated surrogate or close family member is the appropriate surrogate, understanding that presumption to be rebuttable in particular cases. In the case of a durable power of attorney for health care, the evidence rebutting the presumption for the designated surrogate could be of two kinds - first, the surrogate's decisions are sharply in conflict with either the expressed wishes or, if these are not known, the fundamental interests of the patient; second, due to circumstances that have changed since the surrogate was chosen, there is strong evidence that the designated surrogate is no longer the person whom the patient would want to be the decisionmaker. Empirical research could address the kinds and frequency of cases in which this presumption is rebutted. When a person has chosen to execute a formal document whose purpose is to select and empower a surrogate, the presumption for that person to serve as surrogate should be very strong and difficult to rebut. …