DECISIONAL CONFLICT AND TERMINOLOGIES

Decisional Conflict and Terminologies Used For End of Life Decision Making

Abstract

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. 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. 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. 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.

Decisional Conflict and Terminologies Used For End of Life Decision Making

The Contributions of Bioethics

Bioethics has developed a set of practices to provide guidance when confronting decisions about medical care before death; these practices include informed consent, advance directives, selecting a surrogate decision maker, and orders to forgo life-sustaining treatment or resuscitation (President Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1982Citation, President Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1983Citation). The current models of biomedical care, influenced by these bioethics practices, require the individual to confront numerous overt decisions about letting go of the physical life—often presenting the individual with mixed messages of hope, possibility, and speculation about what may be the right thing to do.

These practices are predicated on the widely accepted, yet unproven, notion that the individual can be an active, informed, and involved participant in medical care, even at a time of profound personal vulnerability—a vulnerability both existential and physical (Wolpe 1998Citation). These bioethics practices were derived from complex ethical theories of moral integrity, individual rights, duties, virtues, and fairness. In turn, they have become accepted as the ethics of end-of-life care—instead of providing a framework of allowable actions, they have become prescriptive mandates in the clinical ...