In Search of a Good Death: Observations of Patients, Families, and Providers
- Karen E. Steinhauser, PhD;
- Elizabeth C. Clipp, PhD, MS, RN;
- Maya McNeilly, PhD;
- Nicholas A. Christakis, MD, PhD, MPH;
- Lauren M. McIntyre, PhD; and
- James A. Tulsky, MD
- From the Durham Veterans Affairs Medical Center, Duke University, and the Institute for Multiculturalism, Durham, North Carolina; and University of Chicago, Chicago, Illinois.
Abstract
Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants—including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members—were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice.
Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying.
Although there is no “right” way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
Article and Author Information
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Disclaimer: The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
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Acknowledgments: The authors thank Ginette Nachman for transcription support; Aileen Ward for focus group facilitation; and the 75 patients, family members, and health care providers who graciously shared their experiences of care at the end of life.
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Grant Support: By the Veterans Affairs Health Services Research and Development (96-006). Dr. Tulsky and Dr. Christakis were Project on Death in America Soros Faculty Scholars. Dr. Tulsky is supported by a Veterans Affairs Health Services Research Career Development Award and a Robert Wood Johnson Generalist Physician Faculty Scholars Award.
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Requests for Single Reprints: Karen E. Steinhauser, PhD, Veterans Affairs Medical Center (152), 508 Fulton Street, Durham, NC 27705; e-mail, karensteinhauser{at}mindspring.com.
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Requests To Purchase Bulk Reprints (minimum, 100 copies): the Reprints Coordinator; phone, 215-351-2657; e-mail, reprints{at}mail.acponline.org.
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Current Author Addresses: Drs. Steinhauser, Clipp, McIntyre, and Tulsky: Veterans Affairs Medical Center (152), 508 Fulton Street, Durham, NC 27705.
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Dr. McNeilly: Duke University Medical Center, Box 3003, Durham, NC 27710.
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Dr. Christakis: University of Chicago, 5841 South Maryland Avenue, MC2007, Chicago, IL 60637.
- Copyright ©2004 by the American College of Physicians
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