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Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

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Abstract

Background

There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved.

Objective

Explore the concerns and desires for EOL care among homeless persons.

Design

Qualitative study utilizing focus groups.

Participants

Fifty-three homeless persons recruited from agencies providing homeless services.

Measurements

In-depth interviews, which were audiotaped and transcribed.

Results

We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged.

Conclusions

Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.

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References

  1. National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care December 6–8, 2004. Available at: http://www.consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm. Accessed March 16, 2006.

  2. Burt MR. Homelessness: definitions and counts. In: Baumohl J, ed. Homelessness in America. Phoenix, AZ: Oryx Press, 1996:15–23.

    Google Scholar 

  3. Breakey WR, Fischer PJ, Kramer M. Health and mental problems of homeless men and women in Baltimore. JAMA 1989; 262:1352–7.

    Article  PubMed  CAS  Google Scholar 

  4. Gelberg L, Linn LS. Assessing the physical health of homeless adults. JAMA 1989; 262:1973–9.

    Article  PubMed  CAS  Google Scholar 

  5. Barrow SM, Herman DB, Cordova PBA. Mortality among shelter residents in New York City. Am J Public Health 1999; 89:529–34.

    PubMed  CAS  Google Scholar 

  6. Hibbs JR, Benner L. Mortality in a cohort of homeless adults in Philadelphia. N Engl J Med 1994; 331:304–9

    Article  PubMed  CAS  Google Scholar 

  7. Cheung AM, Hwang SW. Risk of death among homeless women: a cohort study and review of the literature. CMAJ 2004; 170(8):1243–7.

    PubMed  Google Scholar 

  8. Hwang SW, Orav EJ, O’Connell JJ, Lebow JM, Brennan TA. Causes of death in homeless adults in Boston. Ann Intern Med 1996; 126:625–8.

    Google Scholar 

  9. King County Public Health 2004. Available at: http://www.metrokc.gov/HEALTH/hchn/2004-annual-report-HD.pdf. Accessed January 20, 2006.

  10. Gallagher TC, Andersen RM, Koegel P, Gelberg L. Determinants of regular source of care among homeless adults in Los Angeles. Med Care 1997; 35(8):814–30.

    Article  PubMed  CAS  Google Scholar 

  11. Gelberg L, Andersen RM, Leake BD. Healthcare access and utilization. Health Serv Res. 2000;34(6):1273–1314.

    PubMed  CAS  Google Scholar 

  12. Gelberg L, Thompson L. Competing priorities as a barrier to medical care among homeless adults in Los Angeles. Am J Public Health 1997; 87:217–20.

    Article  PubMed  CAS  Google Scholar 

  13. Hwang SW, O’Connell JJ, Lebow JM, Bierer MF, Orav EJ, Brennan TA. Health care utilization among homeless adults prior to death. J Health Care Poor Underserved 2001 Feb; 12(1):50–8.

    PubMed  CAS  Google Scholar 

  14. Song J, Ratner E, Bartels D. Dying while homeless: Is it a concern when life itself is such a struggle? J Clin Ethics. Fall 2005;16(3):251–61.

    PubMed  Google Scholar 

  15. Tarzian A, Neal M, O’Neil J. Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals. J Palliat Med. Feb 2005, Vol. 8, No. 1: 36–48.

    Article  PubMed  Google Scholar 

  16. Norris W, Nielson E, Engelberg R, Curtis JR. Treatment preferences for resuscitation and critical care among homeless persons. Chest 2005; 127(6):2180–7.

    Article  PubMed  Google Scholar 

  17. Stewart B. McKinney Homeless Assistance Act (42 U.S.C. 11431 et seq.)

  18. Bernard HR. Reseach Methods in Cultural Anthropology. Beverly Hills, CA: Sage Publications 1988.

    Google Scholar 

  19. Hill CE, Thompson BJ, Williams EN. A guide to conducting consensual qualitative research. Couns Psychol 1997; 25:517–72.

    Article  Google Scholar 

  20. Singer PA, Martin DK, Kelner M. Quality end of life care: patients’ perspectives. JAMA 1999; 281:163–8.

    Article  PubMed  CAS  Google Scholar 

  21. Steinhauser KE, Clipp CC. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000; 132:825–31.

    PubMed  CAS  Google Scholar 

  22. Vig EK, Pearlman RA. Quality of life while dying: a qualitative study of terminally ill older men. J Am Geriatr Soc 2003 Nov; 51(11):1595–601

    Article  PubMed  Google Scholar 

  23. Born W, Greiner KA, Sylvia E, Butler J. Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004 7(2): 247–56.

    Article  PubMed  Google Scholar 

  24. Blackhall LJ, Murphy ST, Frank G. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820–5

    Article  PubMed  CAS  Google Scholar 

  25. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1993;4(2):155–65.

    PubMed  CAS  Google Scholar 

  26. Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation. JAMA 1995;274:826–9.

    Article  PubMed  CAS  Google Scholar 

  27. Daneault S, Labadie J. Terminal HIV disease and extreme poverty: a review of 307 home care files. J Palliat Care 1999; 15:6–12.

    PubMed  CAS  Google Scholar 

  28. Degenholtz HB, Thomas SB, Miller MJ. Race and the intensive care unit: disparities and preferences for end-of-life care. Crit Care Med. 31(5 Suppl):S373–8, 2003 May.

    Article  PubMed  Google Scholar 

  29. Cleeland CS, Gonin R, Baez L et al. Pain and treatment of pain in minority patients with cancer. Ann Intern Med 1997;127:813–6.

    PubMed  CAS  Google Scholar 

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Acknowledgements

The authors would like to thank the clients and staff of St. Stephen’s shelter; Holy Rosary Church; Listening House; Hennepin County Outreach Services; Health Care for the Homeless, Minneapolis; and Our Saviors Church who were so generous with their time, thoughts, and dedication to serving others. We would also like to thank LeeAnne Hoekstra for administrative support, Tybee Types for transcription, and Karen Howard for manuscript preparation. This study was funded by the National Institute of Nursing Research, National Institutes of Health, grant RO3 NR008586-02.

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Authors and Affiliations

  1. Center for Bioethics, University of Minnesota, N504 Boynton, 410 Church Street S.E., Minneapolis, MN, 55455, USA

    John Song MD, MPH, MAT, Dianne M. Bartels RN, MA, PhD & Edward R. Ratner MD

  2. Medical School, University of Minnesota, Minneapolis, MN, USA

    John Song MD, MPH, MAT, Dianne M. Bartels RN, MA, PhD, Edward R. Ratner MD & Jasjit S. Ahluwalia MD, MPH, MS

  3. Academic Health Center, University of Minnesota, Minneapolis, MN, USA

    Brenda Hudson MS & Jasjit S. Ahluwalia MD, MPH, MS

  4. Worldwide Epidemiology, GlaxoSmithKline, Mail Stop UP4305, Collegeville, PA, 19426-0989, USA

    Lucy Alderton MPH

Authors
  1. John Song MD, MPH, MAT
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  2. Dianne M. Bartels RN, MA, PhD
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  3. Edward R. Ratner MD
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  4. Lucy Alderton MPH
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  5. Brenda Hudson MS
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  6. Jasjit S. Ahluwalia MD, MPH, MS
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Corresponding author

Correspondence to John Song MD, MPH, MAT.

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None disclosed

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Song, J., Bartels, D.M., Ratner, E.R. et al. Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care. J GEN INTERN MED 22, 435–441 (2007). https://doi.org/10.1007/s11606-006-0046-7

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  • DOI: https://doi.org/10.1007/s11606-006-0046-7

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