Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.

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.