Parents' decisionmaking discretion is not absolute, and pediatricians view themselves as having a professional obligation to look after the best interest of their patients (AAP, 1995). In some cases, their conclusions may conflict with those of the patients' families. Some of the most difficult cases arise from parents' demands for what clinicians regard as "futile" or "inhumane" care. The possibilities for resolving conflict include sensitive conversations between the child's physician and the parents; involvement by social workers, ethicists, pastoral counselors, or others trained in working with grief-stricken families; mediation by a hospital ethics committee; or recourse to the legal system. The latter is widely viewed as a last resort because of the burden it places on families, the stress it creates for clinicians, and the potential for negative publicity for families and institutions.

The Patient Self-Determination Act (PSDA) was enacted by Congress in 1990 and went into effect in December 1991 (White and Fletcher, 1991; GAO, 1995b). The PSDA requires health care institutions that receive Medicare or Medicaid funds to provide written information to adult patients about state laws regarding advance directives. It also requires those institutions, among other things, to note any advance directive in a patient's file, not to discriminate between patients on the basis of whether they have an advance directive, and to educate staff and community about the availability of advance directives.

The purpose of the PSDA was to encourage greater awareness and use of advance directives so that situations of ambiguity, as illustrated by the Nancy Cruzan case, might be avoided. In that 1990 case, the United States Supreme Court recognized a competent patient's right to refuse life-sustaining treatment, but left it to the lower courts to determine whether testimony of Nancy Cruzan's previously expressed oral wishes was persuasive. In Cruzan v. Director, Missouri Health Department, Justice Sandra Day O'Connor suggested in a concurring opinion that written advance directives could dispel such ambiguity. That year, Congress passed the PSDA.

The law, however, appears to have had modest effects (Teno, Lynn et al., 1994; Morrison et al., 1994; Emanuel, 1995a; see also Chapter 3). There are no national studies on the rates of persons completing advance directives, but studies of discrete populations (e.g., nursing home residents or hospital patients) conducted both before and after passage of the PSDA show rates between 5 percent and 29 percent (GAO, 1995b; Yates and Glick, 1995). The SUPPORT investigators found a small increase of seriously ill patients having an advance directive since the PSDA went into effect (from one in five to one in four), but this increase did not translate