Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients
Ezekiel J. Emanuel, M.D., Ph.D., Diane L. Fairclough, D.P.H., Julia Slutsman, B.A., Hillel Alpert, M.P.M., DeWitt Baldwin, M.D., and Linda L. Emanuel, M.D., Ph.D.
Background In addition to medical care, dying patients oftenneed many types of assistance, including help with transportation,nursing care, homemaking services, and personal care. We interviewedterminally ill adults and their care givers in six randomlyselected areas of the United States (five metropolitan areasand one rural county) to determine how their needs for assistancewere met and the frequency with which they received such assistancefrom family members and paid and volunteer care givers.
Methods The patients, whose physicians estimated them to haveless than six months to live and who had clinically significantillness other than human immunodeficiency virus infection orthe acquired immunodeficiency syndrome, were referred to thestudy by their physicians. Of the 1131 eligible patients, 988(87.4 percent) consented to a detailed in-person interview conductedin English, as did 893 of the 915 eligible primary care givers(97.6 percent).
Results Of the 988 terminally ill patients, 59.4 percent wereover the age of 65 years, and 51.5 percent were women. The mostfrequent terminal illness was cancer (in 51.8 percent of thepatients), followed by heart disease (18.0 percent) and chronicobstructive pulmonary disease (10.9 percent). Four percent ofthe patients were in an institution, such as a nursing home,residential hospice, or hospital; the rest were living in aprivate residence. A need for assistance was reported by 86.8percent of the patients; they required help with transportation(reported by 62.0 percent), homemaking services (55.2 percent),nursing care (28.7 percent), and personal care (26.0 percent).Of the care givers, 72.1 percent were women. Primary care giverswere family members in 96.0 percent of cases; only 4.0 percentwere unrelated. Most patients relied completely on family membersand friends for assistance. A total of 15.5 percent of patientsrelied only on paid assistance for more than half of the typesof care that they needed. Volunteers (that is, unpaid helperswho were not family members or friends) provided less than 3percent of all care.
Conclusions In our survey of terminally ill patients, familymembers, usually women, provided the majority of assistancewith nonmedical care. Although many people received assistancefrom paid care givers, very few had assistance from volunteers.
Source Information
From the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, Md. (E.J.E.); the Center for Research Methodology and Biometrics, Cancer Research Center, American Medical Center, Denver (D.L.F.); the Department of Health Policy and Management, School of Hygiene and Public Health, Johns Hopkins University, Baltimore (J.S.); Vital Science and Health, Newtonville, Mass. (H.A.); and the Institute of Ethics, American Medical Association, Chicago (D.B., L.L.E.).
Address reprint requests to Dr. Ezekiel J. Emanuel at the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, MD 20892-1156.
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