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

4. Advance Directives: Extending Autonomy for Patients

4 ADVANCE DIRECTIVES Extending Autonomy for Patients Although a competent patient has the right to refuse treatment necessary to sustain life, for many end-of-life decisions we lack direct access to the wishes of a competent patient. Some treatment decisions near the end of life involve patients with severely diminished mental capacity (e.g., those with Alzheimer disease), some involve patients who are unable to communicate (e.g., some stroke victims), and some involve patients who are simply unable or unwilling to participate in decision making owing to the nature or severity of their illness. Most states now recognize the extension of a competent patient’s right to refuse treatment through advance directives, which allow a competent person to specify in advance an approach to treatment decision making for use when she is unable to participate directly in the decision. This extension of a patient’s rights has been recognized at the federal level through the Patient Self-determination Act (1990). A question remains concerning how far this extension of the right to refuse treatment should be recognized through advance directives. In particular, how literally should the wishes expressed in an advance directive be taken? An elderly woman named Claire is largely unresponsive and unable to swallow as the result of a stroke. Her overall prognosis, though guarded, is reasonably good. Because she is unable to swallow, she needs a feeding tube. However, Claire has an advance directive in which she indicates that she does not wish to receive artificial life support, including mechanical ventilation or artificial nutrition and hydration. This has been indicated by Claire’s initialing a “standard statement” (one of three statements that indicate different “approaches to treatment” on the advance directive form). The patient’s daughter insists that her mother did not wish to refuse nutrition and hydration. “I helped her fill this form out, and we discussed which statement to initial . We chose only this statement because, of the three options, it was the closest to her wishes. The statement does not reflect her wishes exactly. She doesn’t want to be kept alive on a ventilator, but she does want to be fed—especially if she has a decent chance of recovery.” Indeed, examination of the advance directive document shows three options for “approaches to treatment” which a patient might initial. These options are preworded standard statements , and no option exists that refuses mechanical ventilation but does not refuse nutrition and hydration. The case of Claire illustrates a fundamental difference between the wishes expressed through an advance directive and wishes expressed by a competent patient. Because advance directives apply when a patient is unable to participate in decision making, in cases like that of Claire we are unable to ask for further clarification of the patient’s wishes. For this reason, we should not recognize advance directives as equivalent to the decisions made by a competent patient. I believe there are good reasons to recognize advance directives in many (perhaps even most) circumstances, but I also believe there are good reasons to recognize the important differences between advance directives and the direct decisions of a competent patient, and through these to require that additional criteria be met before advance directives become operative in treatment decision making. Many discussions of advance directives and self-determination focus on the question of personal identity (see Buchanan 1988; Buchanan and Brock 1989; Radden 1992): If the advance directive is to reflect patient autonomy, we must address the question of the identity of the person who issues the advance directive and her relation to the person who is to receive (or not receive ) treatment through application of the advance directive. Although this is an important question, it is not the focus of this chapter. Rather, I consider Advance Directives 55 whether, given the resolution of problems concerning personal identity, the advance directive could be considered to embody patient autonomy. Ultimately , I argue that it cannot. That is, even if the patient who is to receive treatment under the advance directive can be said to be the same person who issued the directive, because of certain defining characteristics of the application of advance directives, such application must be seen as “binding” the patient in a way that is incompatible with the patient’s autonomy. An advance directive might take several forms. The living will and durable power of attorney are the...