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15 January 1997 | Volume 126 Issue 2 | Pages 97-106
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.
Author and Article Information
For the SUPPORT Investigators*.
ARTICLE
Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients
Note: The opinions and findings presented here are those of the authors and do not necessarily represent the views of the study sponsors.
Grant Support: In part by the Robert Wood Johnson Foundation's Program on the Care of Critically-Ill Hospitalized Adults (SUPPORT [the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments] and HELP [Hospitalized Elderly Longitudinal Project]).
Requests for Reprints: Joanne Lynn, MD, Center to Improve Care of the Dying, George Washington University Medical Center, 1001 22nd Street, Suite 820, Washington, DC 20037.
Current Author Addresses: Drs. Lynn, Teno, Harrold, and Kreling: Center to Improve Care of the Dying, George Washington University Medical Center, 1001 22nd Street, Suite 820, Washington, DC 20037.
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