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Minority Populations and Advance Directives: Insights from a Focus Group Methodology

Published online by Cambridge University Press:  03 August 2009

Joshua M. Hauser ,
Sharon F. Kleefield ,
Troyen A. Brennan  and
Ruth L. Fischbach
Joshua M. Hauser
Affiliation:
A first-year resident in the Department of Medicine at the Brigham and Women's Hospital in Boston, Massachusetts. He was affiliated with the Harvard School of Public Health at the time of this study.
Sharon F. Kleefield
Affiliation:
Director of Quality Improvement in the Department of Quality Measurement and Improvement, Brigham and Women's Hospital, Boston, Massachusetts.
Troyen A. Brennan
Affiliation:
Professor of Law and Public Health at the Harvard School of Public Health, professor of medicine at Harvard Medical School, and Executive Directive of Brigham and Women's Hospital Physician Hospital Organization.
Ruth L. Fischbach
Affiliation:
Assistant professor of Social Medicine in the Department of Social Medicine at Harvard Medical School, with appointments in the Division of Medical Ethics and the Division on Aging.
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Extract

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding the concept of advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we used a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure.

Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 6 , Issue 1 , Winter 1997 , pp. 58 - 71
Copyright
Copyright © Cambridge University Press 1997

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References

Notes

1. Emanuel, LL, Barry, MJ, Stoeckle, JD et al. , Advance directives for medical care—A case for greater use. NEJM 1991;324:889–95.CrossRefGoogle ScholarPubMed

2. Reilly, BM, Magnussen, CR, Ross, J et al. , Can we talk? Inpatient discussions about advance directives in a community hospital. Archives of Internal Medicine 1994;154:2299–2308.CrossRefGoogle Scholar

3. Joos, SK, Reuler, JB, Powell, JL et al. , Outpatients' attitudes and understanding regarding living wills. Journal of General Internal Medicine 1993;8:259–63.CrossRefGoogle ScholarPubMed

4. Brunetti, LL, Carperos, SD, Westlund, RE. Physicians' attitudes towards living wills and cardiopulmonary resuscitation. Journal of General Internal Medicine 1991;6:323–9.CrossRefGoogle ScholarPubMed

5. Johnson, SC, Pfeifer, MP, McNutt, R. The discussion about advance directives: Patient and physician opinions regarding when and how it should be conducted. Archives of Internal Medicine 1995;155:1025–30.Google Scholar

6. Layson, RT, Adelman, HM, Wallach, PM et al. , Discussions about the use of life-sustaining treatments: a literature review of physicians' and patients' attitudes and practices. Journal of Clinical Ethics 1994;5:195–201.Google ScholarPubMed

7. Navarro, V. Race or class versus race and class: mortality differentials in the United States. The Lancet 1990;336:1238–40.CrossRefGoogle ScholarPubMed

8. American Medical Association, Council on Ethical and Judicial Affairs. Black-white disparities in health care. JAMA 1990;263:2344–46.CrossRefGoogle Scholar

9. Ayanian, JZ. Race, class and the quality of medical care. JAMA 1994;271:1207–8.CrossRefGoogle ScholarPubMed

10. Kahn, KL et al. , Health care for black and poor hospitalized Medicare patients. JAMA 1994:271:1169–74.CrossRefGoogle ScholarPubMed

11. Sugarman, L, Weinberger, M, Swayer, G. Factors associated with veterans' decisions about living wills. Archives of Internal Medicine 1992;152:343–7.CrossRefGoogle ScholarPubMed

12. Haas, JS, Weissman, JS, Cleary, PD et al. , Discussion of preferences for life-sustaining care by persons with AIDS: predictors of failure in patient-physician communication. Archives of Internal Medicine 1993;153:1241–48.CrossRefGoogle ScholarPubMed

13. Teno, J, Lynn, J, Phillips, R et al. , Do advance directives save resources? Clinical Research 1993;41: 551A.Google ScholarPubMed

14. Garrett, JM, Harris, RP, Norburn, JK et al. , Life-sustaining treatments during terminal illness: who wants what? Journal of General Internal Medicine 1993;8:361–8.CrossRefGoogle Scholar

15. Caralis, PV, Davis, B, Wright, K et al. , The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatment and euthanasia. Journal of Clinical Ethics 1993;4:155–65.Google ScholarPubMed

16. Klessig, J. The effect of values and culture on life-support decisions. In: Cross-cultural medicine—A decade later [Special Issue]. Western Journal of Medicine 1992;157:316–22.Google Scholar

17. Davidson, MN, Devney, P. Attitudinal barriers to organ donation among Black Americans. Transplantation Proceedings 1991;23:2531–2.Google ScholarPubMed

18. Thomas, SB, Quinn, SC. The Tuskegee Syphilis Study, 1932–72: implications for HIV education and AIDS risk reduction programs in the Black community. American Journal of Public Health 1991;81:1498–505.CrossRefGoogle Scholar

19. Guinan, ME. Black communities' belief in “AIDS as genocide”: a barrier to overcome for HIV prevention for Black Americans. Annals of Epidemiology 1993;3:193–5.CrossRefGoogle Scholar

20. Gamble, A. Legacy of distrust: African-Americans and medical research. American Journal of Preventive Medicine 1993;9(Suppl 6):35–8.CrossRefGoogle ScholarPubMed

21. Fischbach, RL. The Tuskegee legacy. Harvard Medical Alumini Bulletin 1992–1993;66(Winter):25–8.Google Scholar

22. Edgar, H. Twenty years after: The legacy of the Tuskegee Syphilis Study. Outside the community. Hastings Center Report 1992;22(6):32–5.CrossRefGoogle Scholar

23. Emanuel, LL. Advance directives: what have we learned so far? Journal of Clinical Ethics 1993;4:8–16.Google ScholarPubMed

24. Malloy, TR, Wigton, RS, Meeske, J et al. , The influence of treatment descriptions on advance medical directive decisions. Journal of the American Geriatrics Society 1992;40:1255–60.CrossRefGoogle ScholarPubMed

25. Brunetti, , Carperos, , Westlund, 1991. See note 4.Google Scholar

26. Schneiderman, LJ, Kaplan, RM, Pearlman, RA et al. , Relationship of general advance directive instructions to specific life-sustaining treatment preferences in patients with serious illness. Archives of Internal Medicine 1992;152:2114–22.CrossRefGoogle ScholarPubMed

27. Wolf, SM, Boyle, P, Callahan, D et al. , Sources of concern about the Patient-Self Determination Act. NEJM 1991;325:1666–71.CrossRefGoogle ScholarPubMed

28. Johnson, SC, Pfeifer, MP, McNutt, R. The discussion about advance directives: patient and physician opinions regarding when and how it should be conducted. Archives of Internal Medicine 1995;155:1025–30.Google Scholar

29. Emanuel, LL, Emanuel, EJ. Decisions at the end of life: guided by communities of patients. Hastings Center Report 1993;23(5):6–14.CrossRefGoogle ScholarPubMed

30. Leape, LL, Freshour, MA, Yntema, D et al. , Small-group judgment methods for determining resource-based relative values. Medical Care 1992;30 (11 Supplement):N528–39.CrossRefGoogle ScholarPubMed

31. Shmerling, A, Schattner, P, Piterman, L. Qualitative research in medical practice. Medical Journal of Australia 1993;158:619–22.Google ScholarPubMed

32. Elder, NC, Schneider, FD, Zweig, SC et al. , Community attitudes and knowledge about advance care directives. Journal of the American Board of Family Practice 1992;5:565–72.Google ScholarPubMed

33. Gray-Vickrey, P. Gerontological research: use and application of focus groups. Journal of Gerontological Nursing 1993;19:21–27.CrossRefGoogle ScholarPubMed

34. Schattner, P, Shmerling, A, Murphy, B. Focus groups: a useful research method in general practice. Medical Journal of Australia 1993;158:622–5.Google ScholarPubMed

35. Morgan, DL. Doctor-caregiver relationships: An exploration using focus groups. In Crabtree, and Miller, , Eds., Doing Qualitative Research. Newbury Park, Calif.: Sage, 1992.Google Scholar

36. Strauss, AL. Qualitative Analysis for Social Scientists. Cambridge: Cambridge University Press, 1987.CrossRefGoogle Scholar

37. Silverman, HJ, Fry, ST, Armistead, N. Nurses' Perspectives on implementation of the Patient Self-Determination Act. Journal of Clinical Ethics 1994;5:30–7.Google ScholarPubMed

38. Orona, CJ, Koenig, BA, Davis, AJ. Cultural aspects of nondisclosure. Cambridge Quarterly of Healthcare Ethics 1994;3:338–46.CrossRefGoogle ScholarPubMed

39. Blackball, LJ, Murphy, ST, Frank, G et al. , Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820–5.CrossRefGoogle Scholar

40. Dula, A. African-American suspicion of the healthcare system is justified: What do we do about it? Cambridge Quarterly of Healthcare Ethics 1994;3:347–57.CrossRefGoogle Scholar

41. Dula, A. The life and death of Miss Mildred, an elderly Black woman. Clinics in Geriatric Medicine 1994;10:419–30.CrossRefGoogle ScholarPubMed

42. Navarro, 1990. See note 7.Google Scholar

43. AMA Council on Ethical and Judicial Affairs 1990. See note 8.

44. Emanuel, , Emanuel, 1993. See note 29.Google Scholar