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      In Search of a Good Death: Observations of Patients, Families, and Providers

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          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.

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          Most cited references16

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          Index for rating diagnostic tests.

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            Quality End-of-Life Care

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              Advance directives for medical care--a case for greater use.

              BACKGROUND. Advance directives for medical care and the designation of proxy decision makers to guide medical care after a patient has become incompetent have been widely advocated but little studied. We investigated the attitudes of patients toward planning, perceived barriers to such planning, treatment preferences in four hypothetical scenarios, and the feasibility of using a particular document (the Medical Directive) in the outpatient setting to specify advance directives. We surveyed 405 outpatients of 30 primary care physicians at Massachusetts General Hospital and 102 members of the general public in Boston and asked them as part of the survey to complete the Medical Directive. Advance directives were desired by 93 percent of the outpatients and 89 percent of the members of the general public (P greater than 0.2). Both the young and the healthy subgroups expressed at least as much interest in planning as those older than 65 and those in fair-to-poor health. Of the perceived barriers to issuing advance directives, the lack of physician initiative was among the most frequently mentioned, and the disturbing nature of the topic was among the least. The outpatients refused life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent), with small differences between widely differing types of treatments. Specific treatment preferences could not be usefully predicted according to age, self-rated state of health, or other demographic features. Completing the Medical Directive took a median of 14 minutes. When people are asked to imagine themselves incompetent with a poor prognosis, they decide against life-sustaining treatments about 70 percent of the time. Health, age, or other demographic features cannot be used, however, to predict specific preferences. Advance directives as part of a comprehensive approach such as that provided by the Medical Directive are desired by most people, require physician initiative, and can be achieved during a regular office visit.
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                Author and article information

                Journal
                Annals of Internal Medicine
                Ann Intern Med
                American College of Physicians
                0003-4819
                May 16 2000
                May 16 2000
                : 132
                : 10
                : 825
                Affiliations
                [1 ]From the Durham Veterans Affairs Medical Center, Duke University, and the Institute for Multiculturalism, Durham, North Carolina; and University of Chicago, Chicago, Illinois.
                Article
                10.7326/0003-4819-132-10-200005160-00011
                10819707
                0b265e57-c513-43f6-be8d-401ea81a094b
                © 2000
                History

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