Abstract
Objective
Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.
Participants
Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.
Measurements and main results
Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.
Conclusions
Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.
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References
McCue JD. The naturalness of dying. JAMA.1995;273:1039–43.
Uhlmann RF, Pearlman RA, Cain KC. Physicians’ and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol. 1988;43:M115–21.
Reilly BM, Magnussen R, Ross R, Ash J, Papa L, Wegner M. Can we talk? Inpatient discussions about advance directives in a community hospital: attending physicians’ attitudes, their inpatients’ wishes, and reported experience. Arch Intern Med. 1994;154:2999–3008.
Teno J, Fleishman J, Borck DW, Mor V. The use of formal prior directives among patients with HIV-related diseases. J Gen Intern Med. 1990;5:490–4.
The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA. 1996;274:1591–8.
Sontag S. AIDS and Its Metaphors. New York, NY: Farrar, Straus and Giroux; 1989.
Wachter RM, Luce JM, Hearst N, Lo B. Decisions about resuscitation: inequities among patients with different diseases but similar prognoses. Ann Intern Med. 1989;111:525–32.
Centers for Disease Control and Prevention Update: mortality attributable to HIV infection among persons aged 25–44—United States, 1991 and 1992. MMWR. 1993;42:869–72.
Jonsen A, Stryker J. The Social Impact of AIDS. Washington, DC: National Academy of Science; 1993.
Curtis JR, Park DR, Krone MR, Pearlman RA. Use of the medical futility rationale in do-not-attempt-resuscitation orders. JAMA. 1995;273:124–8.
Tulsky J, Cassileth B, Bennett C. The effect of ethnicity on ICU use and DNR orders in hospitalized AIDS patients. J Clin Ethics. 1997;8:150–7.
Haas JS, Weissman JS, Cleary PD, et al. Discussion of preferences for life-sustaining care by persons with AIDS. Arch Intern Med. 1991;153:1241–8.
Steinbrook R, Lo B, Moulton J, Saika G, Hollander H, Volberding PA. Preferences of homosexual men with AIDS for life-sustaining treatment. N Engl J Med. 1986;314:457–60.
Foley K. Competent care for the dying instead of physician-assisted suicide. N Engl J Med. 1997;336:54–8.
Lo B. Improving care near the end of life: why is it so hard? JAMA. 1995;274:1634–6.
Centers for Disease Control and Prevention. Revision of the CDC surveillance case definition for acquired immunodeficiency syndrome. MMWR. 1987;36:1–15S.
Lincoln YS, Guba EB. Naturalistic Inquiry. Beverly Hills, Calif: Sage; 1985:235.
Hanson LC, Tulsky JA, Danis M. Can clinical interventions change care at the end of life? Ann Intern Med. 1997;126:381–8.
Schneiderman LJ, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of offering advance directives on medical treatment and costs. Ann Intern Med. 1992;117:599–606.
Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med. 1991;324:882–8.
Pfeifer MP, Sidorov JE, Smith AC, et al. The discussion of end-of-life medical care by primary care patients and physicians: a multi-center study using qualitative interviews. J Gen Intern Med. 1994;9:82–8.
Morrison RS, Morisson EW, Glickman DF. Physician reluctance to discuss advance directives: an empiric investigation of potential barriers. Arch Intern Med. 1994;154:2311–8.
Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation: benefit or harm? JAMA. 1995;274:826–9.
Schade SG, Muslin H. Do not resuscitate decisions: discussions with patients. J Med Ethics. 1989;15:186–90.
Tulsky JA, Chesney MA, Lo B. How do medical residents discuss resuscitation with patients? J Gen Intern Med. 1995;10:436–42.
Tulsky JA, Chesney MA, Lo B. See one, do one, teach one? House staff experience discussing do-not-resuscitate orders. Arch Intern Med. 1996;156:1285–9.
McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11:651–6.
Garrett J, Harris R, Norburn J, Patrick D. Life-sustaining treatments during terminal illness: who wants what? J Gen Intern Med. 1993;8:361–8.
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Supported by The Picker/Commonwealth Scholars Program, which provided salary support for Dr. Curtis, and by the University of Washington Royalty Research Fund.
The opinions expressed here are those of the authors and not necessarily those of the funding agencies.
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Curtis, J.R., Patrick, D.L. Barriers to communication about end-of-life care in AIDS patients. J GEN INTERN MED 12, 736–741 (1997). https://doi.org/10.1046/j.1525-1497.1997.07158.x
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DOI: https://doi.org/10.1046/j.1525-1497.1997.07158.x