When doctors and daughters disagree: twenty-two days and two blinks of an eye

A cornerstone of American medical ethics is the right to say, "Keep your hands off of me," to decline medical treatment. A central problem is how to decide about individuals who have become incapacitated and can no longer request or refuse potentially life-sustaining treatment. An advance directive is a formal attempt to protect people's right to autonomy when they are no longer autonomous. As such, it assumes that previously expressed wishes are precise and immutable, but many families make decisions together, and individuals may negotiate, compromise, and modify their genuine preferences, especially when novel threats arise, and the stakes are high. The current article describes a case in which two daughters overruled a patient's explicit preference to refuse life-sustaining treatment, leading to burdensome illness before death. In the end, the mother seemed to understand her children's needs and seemed willing, at least in retrospect, to have met those needs. After the death of this individual, we continued to talk with the daughters and videotaped an interview in which they shared their perspectives on the case. The daughters consented to be videotaped and to share the video with the medical community (available in online version of article). Their forceful devotion to their mother and their search in retrospect for what could have been done differently has completely changed our understanding of events. We believe that the daughters' behavior is not the indefensible breach of respect for person that it seemed to be. Their mother's true wishes might well have included a desire to help her children during her own dying. Family members' preferences are likely to be important considerations for many people, although the possibility of coercion has to be acknowledged as well. Accommodating this level of decision-making complexity is highly problematic for our understanding of advance directives.