After the Patient Self-Determination Act The Need for Empirical Research on Formal Advance Directives

In the past decade, formal advance directives have come to be viewed by nearly all parties as having the potential to be a very important component of medical decisionmaking. For the past year, they have been the main object of a federal initiative under the Patient Self-Determination Act, intended to encourage patients to claim their rights in regard to decisionmaking. The PSDA requires that notice of the possibility of formulating advance directives be given to nearly all patients in the health care system; it also carries substantial requirements for documentation, transfer, clarification of the law, and public education. While theoretical justifications for use of advance directives are easy to marshall,[1] to date little empirical research has been done to assess the merits of advance directives in practice.[2] For all we know, advance directives could be costly, irrelevant, or harmful. If so, encouraging their use would not be good policy. Here we will outline the issues needing to be addressed about formal advance directives and give an overview of what is now known. We will not assess what we could and should know about informal advance directives (oral communications, letters, medical records, etc.). They are both more difficult to measure and have been even less often studied. Nonetheless, we would note that these informal advance directives are probably more important to clinical practice than are formal advance directives. The Rationale for Advance Directives The fundamental claim of mainstream American medical ethics today is, roughly, this: the decisions made in the care of a patient should be those that are expected to deliver the best possible outcome for that patient, as judged by the patient.[3] Although beyond the scope of this article, the merits of this decisionmaking model also could be studied empirically, although virtually no such research has been done. However, when the patient cannot make his or her own assessment of alternative outcomes it is very difficult to make decisions that reflect patient preferences. Especially since illness is now so commonly chronic and incompetence is so often the result of long-term illness in old age, clinicians can anticipate incompetence and enable patients to direct in advance the kinds of treatments and/or outcomes they would prefer. This provides a way to have the patient's nearly absolute authority endure into a period of incompetence and thereby greatly simplifies decisionmaking, both by making it more expeditious and by making it more likely to comport with the patient's own preferences. Having the patient make decisions in advance of incompetence allows others to avoid the often quite difficult and uncertain task of making the choices and provides a way for the patient to continue to bear the responsibility for decisions. Thus, various formal measures have been implemented to effectuate this endeavor. The most common are "living wills" and "durable powers of attorney." These fundamental claims were at the heart of the Patient Self-Determination Act. However, good policy must depend upon effective implementation at least as much as sound argument. How effective has the implementation of advance directives been? Prevalence: Awareness and Completion of Advance Directives Most people now seem to have at least a passing acquaintance with formal advance directives.[4] Support groups for persons with AIDS appear to have been singularly effective in assuring that this population is well informed. Descriptive research to date has shown that advance directives enjoy widespread approval but that the rate at which they are actually written is much lower and varies with the population. In 1988, a public opinion survey conducted by the American Medical Association found that 56 percent of the general population had discussed with family their treatment preferences if they were in a coma. …