Journal of General Internal Medicine

, Volume 22, Issue 4, pp 435–441 | Cite as

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

  • John SongEmail author
  • Dianne M. Bartels
  • Edward R. Ratner
  • Lucy Alderton
  • Brenda Hudson
  • Jasjit S. Ahluwalia
Original Article



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.


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


Qualitative study utilizing focus groups.


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


In-depth interviews, which were audiotaped and transcribed.


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.


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.


bioethics homelessness end-of-life care focus groups poverty 



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.


  1. 1.
    National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care December 6–8, 2004. Available at: Accessed March 16, 2006.
  2. 2.
    Burt MR. Homelessness: definitions and counts. In: Baumohl J, ed. Homelessness in America. Phoenix, AZ: Oryx Press, 1996:15–23.Google Scholar
  3. 3.
    Breakey WR, Fischer PJ, Kramer M. Health and mental problems of homeless men and women in Baltimore. JAMA 1989; 262:1352–7.PubMedCrossRefGoogle Scholar
  4. 4.
    Gelberg L, Linn LS. Assessing the physical health of homeless adults. JAMA 1989; 262:1973–9.PubMedCrossRefGoogle Scholar
  5. 5.
    Barrow SM, Herman DB, Cordova PBA. Mortality among shelter residents in New York City. Am J Public Health 1999; 89:529–34.PubMedGoogle Scholar
  6. 6.
    Hibbs JR, Benner L. Mortality in a cohort of homeless adults in Philadelphia. N Engl J Med 1994; 331:304–9PubMedCrossRefGoogle Scholar
  7. 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.PubMedGoogle Scholar
  8. 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. 9.
    King County Public Health 2004. Available at: Accessed January 20, 2006.
  10. 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.PubMedCrossRefGoogle Scholar
  11. 11.
    Gelberg L, Andersen RM, Leake BD. Healthcare access and utilization. Health Serv Res. 2000;34(6):1273–1314.PubMedGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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.PubMedGoogle Scholar
  14. 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.PubMedGoogle Scholar
  15. 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.PubMedCrossRefGoogle Scholar
  16. 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.PubMedCrossRefGoogle Scholar
  17. 17.
    Stewart B. McKinney Homeless Assistance Act (42 U.S.C. 11431 et seq.)Google Scholar
  18. 18.
    Bernard HR. Reseach Methods in Cultural Anthropology. Beverly Hills, CA: Sage Publications 1988.Google Scholar
  19. 19.
    Hill CE, Thompson BJ, Williams EN. A guide to conducting consensual qualitative research. Couns Psychol 1997; 25:517–72.CrossRefGoogle Scholar
  20. 20.
    Singer PA, Martin DK, Kelner M. Quality end of life care: patients’ perspectives. JAMA 1999; 281:163–8.PubMedCrossRefGoogle Scholar
  21. 21.
    Steinhauser KE, Clipp CC. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000; 132:825–31.PubMedGoogle Scholar
  22. 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):1595–601PubMedCrossRefGoogle Scholar
  23. 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.PubMedCrossRefGoogle Scholar
  24. 24.
    Blackhall LJ, Murphy ST, Frank G. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820–5PubMedCrossRefGoogle Scholar
  25. 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.PubMedGoogle Scholar
  26. 26.
    Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation. JAMA 1995;274:826–9.PubMedCrossRefGoogle Scholar
  27. 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.PubMedGoogle Scholar
  28. 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.PubMedCrossRefGoogle Scholar
  29. 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.PubMedGoogle Scholar

Copyright information

© Society of General Internal Medicine 2007

Authors and Affiliations

  • John Song
    • 1
    • 2
    Email author
  • Dianne M. Bartels
    • 1
    • 2
  • Edward R. Ratner
    • 1
    • 2
  • Lucy Alderton
    • 4
  • Brenda Hudson
    • 3
  • Jasjit S. Ahluwalia
    • 2
    • 3
  1. 1.Center for BioethicsUniversity of MinnesotaMinneapolisUSA
  2. 2.Medical SchoolUniversity of MinnesotaMinneapolisUSA
  3. 3.Academic Health CenterUniversity of MinnesotaMinneapolisUSA
  4. 4.Worldwide EpidemiologyGlaxoSmithKlineCollegevilleUSA

Personalised recommendations