The End of Autonomy

Attention to end of life care in contemporary bioethics took its initial impetus from the New Jersey Supreme Court's Karen Quinlan decision in 1976, and from this very beginning, there has been a disconnect between theory and reality. In authorizing ventilator removal from Ms. Quinlan, who was in a persistent vegetative state, the court relied on the principle of respect for autonomous choice. It gave no weight to the wishes of Quinlan's parents or her physicians; the only person with any legally recognizable claim was Ms. Quinlan herself. But she was in no position to make any decisions about continued use of the respirator. Before the incident that left her in a persistent vegetative state, she had never expressed any wishes about how she should be cared for if she became ventilator-dependent, and afterwards she was incompetent and had no prospect of ever regaining competence.

The court quickly bypassed the central problem in applying the autonomy ideal to her by positing that if she had been competent, she would have had a right to choose withdrawal, that she should not lose this right "merely" because she was now incompetent, and that her father could exercise this right for her, so long as he acted on the basis of what he believed to be her wishes rather than on his own view of her best interests. From its modern origins in the Quinlan case, then, the autonomy framework for conceptualizing end of life decision-making has had a distinctly artificial cast of mind. It is only thirty years after Quinlan, however, that we can now clearly see what should have been evident from the beginning: the autonomy framework in the context of end of life decision-making simply doesn't fit the facts.

This is not to deny that protecting patient autonomy in end of life care, as in all medical treatment and research, is an important principle. Nor is it to deny that disregard for patient choice has been a longstanding and unjustifiable feature of medical treatment and research. But the facts are that applying the autonomy framework in end of life decision-making has had little practical effect and much fictitious posturing. Efforts to persuade people to create and implement advance directives to protect their autonomy if they should become incompetent have essentially failed. The fictive character of these directives is revealed with special clarity in the laws of some thirty-nine states providing that where an incompetent person has not specified a health care proxy in advance, the state will make that choice itself on the premise that most people would want what the state wants for them—that is, spouse first, adult children second, and so forth.

The explanation for the failure of the advance directive movement emerged with considerable force in the early 1990s, with the empirical findings of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). This study tested the most extensive, rigorous effort that had ever been tried to assist terminally and critically ill patients and their families in making informed choices about end of life care. Notwithstanding the magnitude of this effort toward promoting choice, it produced no effective results. The SUPPORT data instead revealed—in findings that have been subsequently confirmed in other settings—that most patients and their families did not want to make decisions about their end of life care. Though most patients in the study were persuaded to fill out advance directives, a substantial portion of these patients and their families ignored their prior directives as death drew near. They simply did not want to talk about the reality that they were facing death; and most medical professionals returned the favor with equal reluctance to talk about dying.

Two Responses

There are two ways to respond to this consistently confirmed reality. One way—the dominant way for the past thirty years—has been to redouble efforts to promote patient and family choice-making. The second is to turn our attention away from the autonomous choice framework in thinking about end of life decision-making. I think we would be best...