Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers

Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers

From National Institutes of Health, Bethesda, Maryland; AMC Cancer Research Center, Denver, Colorado; Johns Hopkins University, Baltimore, Maryland; and the Institute of Ethics, American Medical Association, Chicago, Illinois.

Abstract

Background: Terminal illness imposes substantial burdens—economic and otherwise—on patients and caregivers. The cause of these burdens is not understood.

Objective: To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions.

Design: In-person interviews of terminally ill patients and their caregivers.

Setting: Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado.

Participants: 988 terminally ill patients and 893 caregivers.

Measurements: Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide.

Results: Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P ≤ 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens.

Conclusions: Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.

Article and Author Information

Acknowledgments: The authors thank Drs. DeWitt Baldwin, Marion Danis, Lee Goldman, and Russell Phillips for critical review of the manuscript. They also thank Erica Omundsen for research assistance and Alma Kuby and the National Opinion Research Council for conducting the patient and caregiver interviews.
Grant Support: In part by grants from the Commonwealth Fund and the Nathan Cummings Foundation.
Requests for Single Reprints: Ezekiel J. Emanuel, MD, PhD, Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892-1156.
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Current Author Addresses: Dr. E.J. Emanuel: Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Building 10, Room 1C118, Bethesda, MD 20892-1156.
Dr. Fairclough: Center for Research Methodology and Biometrics, AMC Cancer Research Center, 1600 Pierce Street, Denver, CO 80214.
Ms. Slutsman: Department of Health Policy and Management, Johns Hopkins University School of Hygiene and Public Health, 615 North Wolfe Street, Baltimore, MD 21205.
Dr. L.L. Emanuel: Institute of Ethics, American Medical Association, 515 North State Street, Chicago, IL 60610.
Author Contributions: Conception and design: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.
Analysis and interpretation of the data: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.
Drafting of the article: E.J. Emanuel, D.L. Fairclough, J. Slutsman, L.L. Emanuel.
Critical revision of the article for important intellectual content: E.J. Emanuel, D.L. Fairclough, L.L. Emanuel.
Final approval of the article: E.J. Emanuel, D.L. Fairclough, J. Slutsman, L.L. Emanuel.
Statistical expertise: D.L. Fairclough.
Obtaining of funding: E.J. Emanuel, L.L. Emanuel.
Administrative, technical, or logistic support: J. Slutsman.
Collection and assembly of data: E.J. Emanuel, J. Slutsman.