Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients

Published in: Annals of Internal Medicine, v. 126, no. 2, Jan. 15, 1997, p. 97-106

Posted on RAND.org on January 01, 1997

by Joanne Lynn, Joan M. Teno, Russell S. Phillips, Albert W. Wu, Norman A. Desbiens, Joan Harrold, Michael T. Claessens, Neil S. Wenger, Barbara Kreling, Alfred F. Connors, Jr.

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BACKGROUND: Alleviating the problems faced by dying persons and their families has drawn substantial public attention, but little is known about the experience of dying. OBJECTIVE: To characterize the experience of dying from the perspective of surrogate decision makers, usually close family members (89%). DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PATIENTS: Persons who had one of nine serious medical conditions or were 80 years of age or older who died and for whom a surrogate decision maker completed an interview about the death. MEASUREMENTS: Medical records were reviewed and surrogate decision makers were interviewed. RESULTS: 4124 of 9105 seriously ill patients died (46%); 408 of 1176 elderly patients died (35%). The patients' family members were interviewed after 3357 persons (73%) had died. Of 1541 patients who survived the enrollment hospitalization, 46% died during a later hospitalization. In the last 3 days of life, 55% of patients were conscious. Among these patients, pain, dyspnea, and fatigue were prevalent. Four in 10 patients had severe pain most of the time. Severe fatigue affected almost 8 in 10 patients. More than 1 in 4 patients had moderate dysphoria. Sixty-three percent of patients had difficulty tolerating physical or emotional symptoms. Overall, 11% of patients had a final resuscitation attempt. A ventilator was used in one fourth of patients, and a feeding tube was used in four tenths of patients. Most patients (59%) were reported to prefer a treatment plan that focused on comfort, but care was reported to be contrary to the preferred approach in 10% of cases. CONCLUSIONS: Most elderly and seriously ill patients died in acute care hospitals. Pain and other symptoms were commonplace and troubling to patients. Family members believed that patients preferred comfort, but life-sustaining treatments were often used. These findings indicate important opportunities to improve the care of dying patients.

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