Journal of the American Geriatrics Society

Racial/Ethnic Preferences, Sex Preferences, and Perceived Discrimination Related to End-of-Life Care

Sonia A. Duffy PhD, RN

From the *Center for Practice Management and Outcomes Research, Ann Arbor Veterans Affairs Hospital, Ann Arbor, Michigan†Departments of Otolaryngology and Psychiatry, ‡School of Nursing, University of Michigan, Ann Arbor, Michigan§School of Nursing, Oakland University, Rochester, Michigan∥College of Nursing, Wayne State University, Detroit, Michigan.

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Frances C. Jackson PhD, RN,

Frances C. Jackson PhD, RN

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Stephanie M. Schim PhD, RN,

Stephanie M. Schim PhD, RN

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David L. Ronis PhD,

David L. Ronis PhD

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Karen E. Fowler MPH,

Karen E. Fowler MPH

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Sonia A. Duffy PhD, RN,

Sonia A. Duffy PhD, RN

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Frances C. Jackson PhD, RN,

Frances C. Jackson PhD, RN

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Stephanie M. Schim PhD, RN,

Stephanie M. Schim PhD, RN

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David L. Ronis PhD,

David L. Ronis PhD

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Karen E. Fowler MPH,

Karen E. Fowler MPH

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First published: 08 November 2005

https://doi.org/10.1111/j.1532-5415.2005.00526.x

Citations: 87

Address correspondence to Sonia A. Duffy, PhD, RN, Ann Arbor Veterans Affairs Hospital (11H), Center for Practice Management and Outcomes Research, PO Box 130170, Ann Arbor, MI 48113. E-mail: [email protected]

This research was jointly funded by the Michigan Department of Community Health, Blue Cross/Blue Shield of Michigan (774.11), and the Department of Veterans Affairs. Data from this manuscript were presented to the Michigan Hospice and Palliative Care Organization, Kalamazoo Michigan, August 2004, and at the Eighth International Congress of Behavioral Medicine, Mainz, Germany, August 27, 2004.

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Abstract

This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age±standard deviation was 67±8.5 (range 50–83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues.

Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient “bad news.” Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying.

As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.

References

1 Noggle BJ. Identifying and meeting needs of ethnic minority patients. Hosp J 1995; 10: 85–93.
2 Eleazer GP, Hornung CA, Egbert CB et al. The relationship between ethnicity and advance directives in a frail older population. J Am Geriatr Soc 1996; 44: 938–943.
3 Caralis PV, Davis B, Wright K et al. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1993; 4: 155–165.
4 National Institutes of Health. National Institutes of Health State-of-the-Science Conference Statement: Improving End-of-Life Care. Bethesda, MD, December 6–8, 2004 [on-line]. Available at http://consensus.nih.gov/ta/024/024EndOfLifepostconfINTRO.htm Accessed April 25, 2005.
5 Gordon AK. Hospice and minorities: A national study of organizational access and practice. Hosp J 1996; 11: 49–70.
6 Talamantes MA, Lawler WR, Espino DV. Hispanic American elders. Care giving norms surrounding dying and the use of hospice services. Hosp J 1995; 10: 35–49.
7 Hornung CA, Eleazer GP, Strothers HS 3rd et al. Ethnicity and decision-makers in a group of frail older people. J Am Geriatr Soc 1998; 46: 280–286.
8 Sarhill N, LeGrand S, Islambouli R et al. The terminally ill Muslim: Death and dying from the Muslim perspective. Am J Hosp Palliat Care 2001; 18: 251–255.
9 Mebane EW, Oman RF, Kroonen LT et al. The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. J Am Geriatr Soc 1999; 47: 579–591.
10 Blackhall L, Murphy S, Frank G et al. Ethnicity and attitudes toward patient autonomy. JAMA 1995; 274: 820–825.
11 Burns S. Spiritual care at the end of life. Health Prog 1998; 79: 45, 46, 49.
12 Blackhall LJ, Frank G, Murphy ST et al. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med 1999; 48: 1779–1789.
13 Cicirelli V. Elders' end-of-life decisions: Implications for hospice care. Hosp J 1997; 12: 57–72.
14 Bookwala J, Coppola KM, Fagerlin A et al. Gender differences in older adults' preferences for life-sustaining medical treatments and end-of-life values. Death Stud 2001; 25: 127–149.
15 Johnson MF, Lin M, Mangalik S et al. Patients' perceptions of physicians' recommendations for comfort care differ by patient age and gender. J Gen Intern Med 2000; 15: 248–255.
16 Carmel S, Mutran E. Preferences for different life-sustaining treatments among elderly persons in Israel. J Gerontol B Psychol Sci Soc Sci 1997; 52B: S97–S102.
17 Wenger NS, Pearson ML, Desmond KA et al. Epidemiology of do-not-resuscitate orders. Disparity by age, diagnosis, gender, race, and functional impairment. Arch Intern Med 1995; 155: 2056–2062.
18 Morgan DL. The Focus Group Guidebook: Focus Group Kit 1. Thousand Oaks, CA: Sage Publications, Inc., 1998.
19 Krueger RA. Developing Questions for Focus Groups: Focus Group Kit 3. Thousand Oaks, CA: Sage Publications, Inc., 1998.
20 Tulsky JA. Understanding What Is Important at the End of Life, 2000 [on-line]. Available at: http://hsrd.durham.med.va.gov/palliative/downloads/finalsurveypatients.doc Accessed March 2001.
21 Krueger RA. Analyzing and Reporting Focus Group Results: Focus Group Kit 6. Thousand Oaks, CA: Sage Publications, Inc., 1998.
22 O'Brien LA, Siegert EA, Grisso JA et al. Tube feeding preferences among nursing home residents. J Gen Intern Med 1997; 12: 364–371.
23 Hopp FP, Duffy SA. Racial variations in end-of-life care. J Am Geriatr Soc 2000; 48: 658–663.
24 Hines SC, Glover JJ, Babrow AS et al. Improving advance care planning by accommodating family preferences. J Palliat Med 2001; 4: 481–489.
25 Jackson F, Schim S, Seely S et al. Barriers to hospice care for African Americans. Problems and solutions. J Hosp Palliat Nurs 2000; 2: 65–72.
26 Hamel MB, Lynn J, Teno JM et al. Age-related differences in care preferences, treatment decisions, and clinical outcomes of seriously ill hospitalized adults: Lessons from SUPPORT. J Am Geriatr Soc 2000; 48: S176–S182.
27 Hallenbeck JL. Intercultural differences and communication at the end of life. Prim Care 2001; 28: 401–413.
28 BD Smedley, AY Stith, AR Nelson, eds. Unequal Treatment. Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press, 2003.

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Volume54, Issue1

January 2006

Pages 150-157

Racial/Ethnic Preferences, Sex Preferences, and Perceived Discrimination Related to End-of-Life Care

Abstract

References

Citing Literature

References

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