Serving Patients Who May Die Soon and Their Families

The Role of Hospice and Other Services

Published in: JAMA, The Journal of the American Medical Association, v. 285, no. 7, Feb. 21, 2001, p. 925-932, 1-2

Posted on RAND.org on January 01, 2001

by Joanne Lynn

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The case story of a 47-year-old man with advanced rectal carcinoma illustrates the professional services and care system strategies available to help clinicians serve patients coming to the end of life. For this patient, who understands his prognosis, primary care physician services include (1) prevention and relief of symptoms, (2) assessment of each treatment before and during implementation, (3) ensuring that the patient designates a surrogate decisionmaker and makes advance plans, and (4) preparation of patient and family for the time near death. Good care may entail enduring unavoidably difficult times with patients and their families. Enrollment in a hospice program requires that decisionmakers confront the prognosis and their uncertainties about it, consider the desirability of other services, recognize variations among available hospice programs, address financial issues, and weigh the distress of patients and loved ones at being labeled as dying. Hospice provides competent, continuous, and reasonably comprehensive care, but it has some constraints. Function and symptoms for those living with serious chronic illness at the end of life generally follow 1 of 3 trajectories: (a) a short period of obvious decline at the end, which is typical of cancer; (b) long-term disability, with periodic exacerbations, and unpredictable timing of death, which characterizes dying with chronic organ system failures; or (c) self-care deficits and a slowly dwindling course to death, which usually results from frailty or dementia. Effective and reliable care for persons coming to the end of life will require changes in the organization and financing of care to match these trajectories, as well as compassionate and skillful clinicians.

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