"Choice" in end-of-life decision making: researching fact or fiction?

Abstract

Purpose: The contribution of bioethics to clinical care at the end of life (EOL) deserves critical scrutiny. We argue that researchers have rarely questioned the normative power of autonomy-based bioethics practices. Research on the ethical dimensions of EOL decision making has focused on an idealized discourse of patient "choice" that requires patients to embrace their dying to receive excellent palliative care.

Design and methods: Our critique is based on a comprehensive review of empirical research exploring bioethics practices at the EOL. In addition we will provide a brief review of our own ethnographic, longitudinal study of the decision-making experience of dying patients, their families, and their health care providers.

Results: There is little or no empirical evidence to support the autonomy paradigm of patient "choice" in EOL decision making. What we found is that (a). prognostication at the EOL is problematic and resisted; (b). shared decision making is illusory, patients often resist advance care planning and hold other values more important than autonomy, and system characteristics are more determinative of EOL care than patient preferences; and (c). the incommensurability of medical and lay knowledge and values and the multifaceted and processual nature of patient and family decision making are at odds with the current EOL approach toward advance care planning.

Implications: It is exceedingly difficult to identify, study, and critique normative assumptions without creating them, reproducing them, or obliterating them in the process. However, a fuller account of the morally significant domains of end-of-life care is needed. Researchers and policy makers should heed what we have learned from empirical research on EOL care to develop more sensitive and supportive programs for care of the dying.