THE PROMISE OF ADVANCE DIRECTIVES
Heralded as the Miranda warning for persons considering the EOL (Sloane, 1990), the Patient Self-Determination Act (PSDA) was passed by the U.S. Congress in 1990 with high expectations for what many thought would be a new day in which people would be able to exercise personal control of the dying process.
The PSDA required hospitals and nursing homes to ask people at the time of admission if they had advance directives (ADs) (a living will
specifying which procedures or treatments they wanted or did not want at EOL and a durable power of attorney for health care matters or proxy, in which they would name someone to make decisions on their behalf if the patient could no longer speak for himself/herself). The act requires admitting personnel to provide forms for patients to fill out and document that these procedures had been followed.
The hope was that completing living wills and appointing proxies would lead to a better dying in which individuals' preferences would be granted in their final days. Guided by a strong commitment to the ethical principle of autonomy and the deeply held ideology of individualism so embedded in U.S. culture (see, e.g., Chapple, 2010; Holstein, Parks, & Waymack, 2011; Kaufman, 2005), ADs were seen as an extension of personal control on unto death, after the individual could no longer speak for himself/herself.
By the mid-1990s the rosy glow only half a decade old had begun to dim, and scholars and practitioners began to question whether this initiative had had the results it had intended. The comprehensive intervention project and research report, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), found that the PSDA had made little difference in whether patients' preferences were upheld at the time of death (Teno et al., 1997). Surgeon Tonelli (1996) argued that it was “time to pull the plug” on living wills, as studies began to indicate that the documents had not fulfilled their promise and that dying patients did not experience a better death for having completed them. Fagerlin and Schneider (2004) asserted:
A crescendoing empirical literature and persistent clinical disappointments reveal that the rewards of the campaign to promote living wills do not justify its costs. Nor can any degree of tinkering ever make the living will an effective instrument of social policy. (p. 30)
At the same time, Fagerlin and Schneider did not call for the elimination of living wills. Living wills are appropriate, they said, for some patients; persons who have a high need for control should be informed about living wills and proxies. But the PSDA was bad policy, they argued, and we should “abjure programs intended to cajole everyone into signing living wills” (Fagerlin & Schneider, 2004, p. 39).
In an editorial in the prestigious Annals of Internal Medicine, Harvard professor and physician Joan Teno said it was “time to move on,” citing the empirical literature showing that having a living will had not reduced hospital costs at EOL. Nevertheless, Teno stated she didn't “mean to imply that advance directives are unimportant” (Teno, 2004, p. 59).
Proxies, by which persons give someone else the legal authority to make health care decisions for them if they cannot speak for themselves,
have fared somewhat better. The body of research shows, however, that too often the surrogates chosen by the individual either do not know they have been given this responsibility, are poor predictors of what their family member or friend would want, or refuse to act when difficult decisions are required (Covinsky, Fuller, & Yaffe, 2000; Emanuel, 1995; Tonelli, 1996).
So, 20 years after the PDSA, where are we now and where are we going? In the wake of strong concerns on the part of practitioners and schol-
ars about the effectiveness of ADs, conversations about EOL planning have shifted from product to process (Hammes, 2003; Wenger, Shugarman, & Wilkinson, 2008), from a focus on completion of documents to a focus on ADs as tools to stimulate communication between patients and families and their health care providers about EOL care. Advance care planning (ACP) has come to be seen part of a comprehensive and ongoing approach to educate ourselves and our communities about dying and death and to provide knowledge that can help us prepare ourselves, our families, and our society for a better way to die.