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Karen E. Steinhauser, PhD; Nicholas A. Christakis, MD, PhD, MPH; Elizabeth C. Clipp, PhD, MS, RN; Maya McNeilly, PhD; Lauren McIntyre, PhD; James A. Tulsky, MD

JAMA. 2000;284:2476-2482.

Context  A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.

Objective  To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.

Design and Setting  Cross-sectional, stratified random national survey conducted in March-August 1999.

Participants  Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).

Main Outcome Measures  Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.

Results  Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.

Conclusions  Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.

Author Affiliations: Program on the Medical Encounter and Palliative Care (Drs Steinhauser and Tulsky), Center for Health Services Research in Primary Care (Drs Steinhauser, McIntyre, and Tulsky), and Geriatric Research Education and Clinical Center (Dr Clipp), Durham Veterans Affairs Medical Center, Department of Medicine (Drs Steinhauser, Clipp, and Tulsky), Center for the Study of Aging and Human Development (Drs Steinhauser, Clipp, McNeilly, and Tulsky), and Institute on Care at the End of Life (Dr Tulsky), Duke University, and the Institute for Multiculturalism (Dr McNeilly), Durham, NC; and the Departments of Medicine and Sociology, University of Chicago, Chicago, Ill (Dr Christakis).

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November 15, 2000
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