The Gerontologist
 QUICK SEARCH:   [advanced]


This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow Alert me when this article is cited
Right arrow Alert me if a correction is posted
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Download to citation manager
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Drought, T. S.
Right arrow Articles by Koenig, B. A.
Right arrow Search for Related Content
Right arrow PubMed Citation
Right arrow Articles by Drought, T. S.
Right arrow Articles by Koenig, B. A.
The Gerontologist 42:114-128 (2002)
© 2002 The Gerontological Society of America

"Choice" in End-of-Life Decision Making

Researching Fact or Fiction?

Theresa S. Drought, PhD, RNa and Barbara A. Koenig, PhD, RNb

a Kaiser Permanente, Oakland, CA
b Stanford Center for Biomedical Ethics, Stanford, CA

Correspondence: Theresa S. Drought, PhD, RN, Kaiser Permanente, Northern California Ethics Department, 1800 Harrison, Suite 410, Oakland, CA 94612. E-mail: theresa.drought{at}

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.

Key Words: End-of-life care • Palliative care • Advance care planning • Death & dying • End-of-life decision making • Limits of patient autonomy • Prognostication

This article has been cited by other articles:

Home page
GerontologistHome page
D. P. Waldrop
At the Eleventh Hour: Psychosocial Dynamics in Short Hospice Stays
Gerontologist, February 1, 2006; 46(1): 106 - 114.
[Abstract] [Full Text] [PDF]

Home page
GerontologistHome page
R. A. Pruchno, E. P. Lemay Jr., L. Feild, and N. G. Levinsky
Spouse as Health Care Proxy for Dialysis Patients: Whose Preferences Matter?
Gerontologist, December 1, 2005; 45(6): 812 - 819.
[Abstract] [Full Text] [PDF]

Home page
D. Lacey
Predictors of social service staff involvement in selected palliative care tasks in nursing homes: An exploratory model
American Journal of Hospice and Palliative Medicine, July 1, 2005; 22(4): 269 - 276.
[Abstract] [PDF]

Home page
G. M. Reisfield and G. R. Wilson
Advance care planning redux: It's time to talk
American Journal of Hospice and Palliative Medicine, January 1, 2004; 21(1): 7 - 9.

Home page
Ann Fam MedHome page
A. F. Jerant, R. S. Azari, T. S. Nesbitt, and F. J. Meyers
The TLC Model of Palliative Care in the Elderly: Preliminary Application in the Assisted Living Setting
Ann. Fam. Med, January 1, 2004; 2(1): 54 - 60.
[Abstract] [Full Text] [PDF]

Home page
JAMAHome page
K. Lorenz and J. Lynn
Moral and Practical Challenges of Physician-Assisted Suicide
JAMA, May 7, 2003; 289(17): 2282 - 2282.
[Full Text] [PDF]

All GSA journals Journals of Gerontology Series A: Biological Sciences and Medical Sciences Journals of Gerontology Series B: Psychological Sciences and Social Sciences
Copyright © 2002 by The Gerontological Society of America.