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Medline ® Abstract for Reference 31

of 'Palliative care delivery in the home'

31
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Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.
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Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL
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Ann Intern Med. 2000;132(6):451.
 
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<or = 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.
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Department of Clinical Bioethics, National Institutes of Health, Bethesda, Maryland 20892-1156, USA.
PMID