Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers
- 21 March 2000
- journal article
- Published by American College of Physicians in Annals of Internal Medicine
- Vol. 132 (6), 451-459
- https://doi.org/10.7326/0003-4819-132-6-200003210-00005
Abstract
Terminal illness imposes substantial burdens—economic and otherwise—on patients and caregivers. The cause of these burdens is not understood. To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions. In-person interviews of terminally ill patients and their caregivers. Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado. 988 terminally ill patients and 893 caregivers. 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. 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. 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.This publication has 21 references indexed in Scilit:
- Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill PatientsThe New England Journal of Medicine, 1999
- Attitudes of Patients with Amyotrophic Lateral Sclerosis and Their Care Givers toward Assisted SuicideThe New England Journal of Medicine, 1998
- The promise of a good deathThe Lancet, 1998
- Euthanasia and physician-assisted suicide: attitudes and experiences of oncology patients, oncologists, and the publicThe Lancet, 1996
- Euthanasia and other medical decisions concerning the end of lifeThe Lancet, 1991
- Performance of a Five-Item Mental Health Screening TestMedical Care, 1991
- An Examination of the Concrete Service Needs of Advanced Cancer PatientsJournal of Psychosocial Oncology, 1987
- An alternative in terminal care: Results of the national hospice studyJournal of Chronic Diseases, 1986
- Caregiver Weil-Being: A Multidimensional Examination of Family Caregivers of Demented AdultsThe Gerontologist, 1986
- Appraisal of methods for the study of chemotherapy of cancer in man: Comparative therapeutic trial of nitrogen mustard and triethylene thiophosphoramideJournal of Chronic Diseases, 1960