Bioethics in a Liberal Society: The Political Framework of Bioethics Decision Making

3. Patient Responsibility for Decision Making

3 PATIENT RESPONSIBILITY FOR DECISION MAKING Many of the most important advancements in providing humane and responsible health care in recent decades can be traced to an increased emphasis that has been placed on patient autonomy. As might be expected, the greater focus on informed consent has been accompanied by a set of problematic cases. We wish to recognize the autonomy of “competent” patients (and thus their corresponding rights), but we also have had to face cases in which allegedly “incompetent” patients seem unable or unwilling to make, or uninterested in making, “good” decisions on important issues with profound ramifications. A 55-year-old man with advanced leukemia has undergone several rounds of chemotherapy. Despite treatment, the leukemia has not gone into remission. During this hospital stay, the man indicates that he will no longer agree to aggressive treatments, and he demands to be discharged home. Physicians are very optimistic about his prognosis with treatment, however, and are concerned that he is not making a “good” decision. Eventually, he is transferred to a psychiatric unit on an involuntary basis because of threats to “jump out of the window.” The patient’s demands to be discharged home became more and more pronounced . A combined ethics-psychiatric consult was requested. Discussions with the patient disclosed that he felt “imprisoned” in the hospital. When asked about his threats to jump out of a window, he replied, “Yes, I told the doctor that I don’t want to be imprisoned. I want to go home. If they don’t discharge me, I’ll jump out of a window and go home.” Discussions also revealed an alert, oriented, lucid man, who had given much thought to his decision and had even prepared by “getting my things in order for my death” before this admission. He accurately volunteered the physician’s prognosis should he not accept continued treatment. In all, the patient’s decision seemed a reasoned decision that had taken into account all consequences of refusal. Nonetheless, physicians disagreed, continuing to point to an optimistic prognosis with treatment. When others agree with a decision we make, we do not need to appeal to our right to make autonomous decisions. It is only when others disagree with us and we are unable to convince them of our decision that the right to autonomy is important. But it is precisely in these cases that we are most likely to be considered “incompetent.” Because of this, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983) decided that judgments of competence should not be made on the basis of outcomes or content. Despite this, I will argue that the “standards for competency” offered in the biomedical ethics literature often “smuggle” concerns about the merit of a patient’s decision into the idea of competency, preempting the patient’s judgment by assessing that the patient lacks the capacity to make decisions because the patient’s decision is not a “good” decision. This leaves patients in the precarious position of being deemed “incompetent” when their decisions do not conform to values re- flected in these modified notions of competency and autonomy. I argue that a standard of competency should not test the merit of a decision in this way. Indeed, absent a privileged point of view, it cannot do so. The concerns that motivate the weight we attach to autonomy require a test of type that identifies the patient as eligible to assume the kind of role we reserve for autonomy; but this, as we shall see, is much different from a test of merit. The distinction between testing the merit, or “quality,” of a decision and testing the type of reasoning exhibited is quite important. Many standards of competency employed in the medical ethics literature inappropriately test “quality” in ways that, to various degrees, render patient self-determination meaningless. In the medical ethics literature, a common strategy for dealing with patient decisions deemed “ill-advised” has been to refine our understanding of autonomy so that we might understand why certain decisions made by Patient Responsibility for Decision Making 33 “incompetent” patients should not carry the weight prescribed by respect for patient autonomy. In this, the standards of competency have moved from the capacity to make one’s own decisions and direct one’s own life to the ability to make “good” decisions. That is, standards...