Is the living will dead? Advance directives and the psychology of end-of-life decision making

Proc Amer Assoc Cancer Res, Volume 46, 2005 SY32-3 There has been an important shift in American medicine toward acknowledging the fundamental right of seriously ill individuals to make their own choices about the use of life-sustaining medical treatment. The landmark legal decisions marking this shift were prompted by severely injured individuals seeking relief from persistent vegetative states, but nowhere does this change have more important implications than in the treatment of individuals in advanced stages of cancer. Near the end of life, cancer patients often endure intense pain, fatigue, delirium, agitation, and a host of other symptoms that can severely diminish their quality of life. Although few individuals are inclined to take active steps to end their life in these conditions, many more express a desire to forego medical treatment that will serve only to prolong life in such low quality states. And yet, in asserting their right to make their own medical decisions at the end of life, cancer patients face a dilemma that confronts many seriously ill individuals. The mental and physical effects of end stage cancer often render people unable to make decisions for themselves. For this reason, cancer patients, like other seriously ill individuals, are encouraged to complete instructional advance directives (i.e., living wills) to guide their end-of-life medical care. On the surface, the solution seems elegant in its simplicity. If wishes for the use of life-sustaining treatment are recorded prior to incapacitating illness in a living will, then patients’ ability to influence the medical care they receive can be maintained even after they have lost the ability to speak for themselves. Testifying to the intuitive power of this idea, it has taken little more than a decade for living wills to be institutionalized in American medicine. All 50 states and the District of Columbia have legislation that authorizes the use of advance directives and their use is advocated by virtually every relevant organization (e.g., the American Medical Association, the American Association of Retired Persons) and reinforced at the federal level by the Patient Self-Determination Act. Policy and law encouraging the use of living wills, however, has developed almost completely uninformed by empirical data questioning a number of key psychological assumptions underlying their use. In this paper, a psychological analysis of end-of-life medical decision making will be presented making explicit a series of steps that must necessarily take place if living wills are to honor the wishes of incapacitated patients. I will then focus on a few key steps in the analysis and review relevant research from the medical and psychological literatures. In each case, this research raises serious questions about the psychological assumptions underlying the effective use of living wills in end of life decision making. Discussion will focus on the need for policy and law guiding the use of advance directives to be informed by empirical research in general, and basic psychological research on judgment and decision making processes in particular.