[A] man does not consist of memory alone. He has feeling, will, sensibilities, moral being…. And it is here … that you may find ways to touch him.—A. R. Luria1.

When patients have progressive and incurable dementia, should their advance directives always be followed? Contra Dworkin, Dresser argues that when patients remain able to enjoy and participate in their lives, directives to hasten death should sometimes be disregarded.

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that (...) the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients. (shrink)

According to bioethics orthodoxy, the question, “What would the patient choose?” is a question about the patient's autonomy. is at stake. In fact, what underpins the moral force of that question is a value different from either autonomy or best interests. This is the value of doing things in a way that is authentic to the person.

This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, a number of practical (...) shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject. (shrink)

According to bioethics orthodoxy, the question, “What would the patient choose?” is a question about the patient's autonomy. is at stake. In fact, what underpins the moral force of that question is a value different from either autonomy or best interests. This is the value of doing things in a way that is authentic to the person.

People who lack decision‐making capacity may be able to communicate preferences, which can and should inform surrogate decision‐making on their behalf. It is unclear whether making a further distinction about “capacity for preferences,” as Jason Wasserman and Mark Navin propose in this issue of the Hastings Center Report, would improve the process of surrogate decision‐making. Anyone who is regularly involved in surrogate decision‐making or who has worked to articulate decision‐making standards and processes can think of cases in which a patient's (...) voice was ignored or his or her preferences and ability to communicate them overlooked. However, we can also think of cases in which it was unclear whether information provided by a patient, recently or in the past, should have been characterized as a preference relevant to a medical decision that the patient lacked the capacity to make. We should also recognize that clear preferences of a patient who lacks decision‐making capacity may conflict with the limits of another person or of a family's resources such that these preferences cannot guide a surrogate's decision. This patient will not get what he wants. A situation in which preferences are known and make sense but cannot be applied in a feasible way demonstrates the limits of the medical decision‐making framework concerning care that is not covered by medical insurance. (shrink)