Dying Without A Home by zhangyun

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									Homeless-Specific
Advance Directives
          Adapted by Dawn Petroskas
                   & Nancy Ulvestad
      John Song, Edward Ratner, Dianne Bartels,
                      Melanie Wall, Lillian Gelberg
     University of Minnesota ~ Center for Bioethics


National Healthcare for the Homeless
                  Conference ~ 2009
Today
   General Overview of Death & Dying and End-
    of-Life Care Among Homeless Populations
   Research at the University of Minnesota -
    Center for Bioethics
   Homeless Specific Advance Directives
   Questions/Sharing Stories or Resources
Death & Dying of Homeless
Populations



   How often does death occur in
    populations suffering from
    homelessness?
Death & Dying of Homeless
Populations

   Standard Mortality Ratios (SMR):

       Number/ratio of deaths in general population
        compared to number/ratio of deaths in homeless
        population

       Adjusted for age
Death & Dying of Homeless
Populations
   Standard Mortality Ratios (SMR):

    o   SMR of 1 = Homeless have the same risk of dying
        as the general population
    o   SMR > 1 = Homeless have a higher risk of dying
    o   SMR < 1 = Homeless have a lower risk of dying
Death & Dying of Homeless
Populations
    Philadelphia                   Copenhagen
        SMR = 3.5                      SMR (men) = 2.8
                                        SMR (women) = 5.6
    New York                       Stockholm
        SMR = 4                        SMR (men) = 4

    Toronto                        Montreal
        SMR (women) = 10               SMR (street youth
                                         ages 14-25) = 11.4



                            (Hibbs; Barrow; Cheung; O’Connell; Roy)
Death & Dying of Homeless
Populations



   How old are people who are
    homeless when they die?
Death & Dying of Homeless
Populations

   U.S. Life Expectancy in 1900 - 47.3 years
   U.S. Life Expectancy today - 77.8 years
   Average Age of Death in Homeless Cohorts
       Atlanta - 44 years
       San Francisco - 41 years
       Boston/Seattle - 47 years
       Philadelphia - 34 years




                                    (CDC; Rousseau, King County Health)
Death & Dying of Homeless
Populations

   The mortality rate is 3-4 times greater in
    homeless populations

   Homeless populations experience premature
    mortality

   Average age of death 42-52 years



                                     (O’Connell, 2005)
Homeless End-of-Life Care



 What  does end-of-life care look
 like for people without a home?
Homeless End-of-Life Care
   Healthcare utilization before death

       Boston (558 people who were homeless prior to death)
           51% no hospitalization in year prior to death
           63% no ED visits
           43% no primary care
           27% no care of any kind




                                                (Hwang, 2001)
Homeless End-of-Life Care
   Barriers to end-of-life care:

       Similar to barriers to health care
         Competing needs
         Adherence
         Access to quality care & hospice care


       Challenging meeting comfort & privacy needs

       Lack of proxy decision makers & social support
Summary


 People who are homeless die
 significantly younger and have a
 high risk of death

 Interventions are needed to improve
 their health and end-of-life care
University of Minnesota Research



   “Dying While Homeless: Is It a Concern
    When Life Itself Is Such a Struggle?”




                             (Song et al., 2005)
University of Minnesota Research
   2003 Wilder Survey:
       “Do you worry about how you would be cared for
        if you were seriously ill or dying?”
            47%


         “Howoften do you think about this?”
          52% said daily or several times a month


    (3,124 people answered the question)
University of Minnesota Research
   2003
       Focus Groups: 53 homeless individuals from service
        sites
   2004
       Interviews: 9 service providers and 11 homeless
        individuals
   2006
       Pilot Study: Survey and an advance directive with 59
        homeless individuals
   2007 - Current
       NIH funded larger study with 300 homeless individuals
University of Minnesota Research
   Results of Focus Groups & Interviews:

       They’re interested and will talk about death,
        dying, and end-of-life care

       They raise unique concerns and have unique
        experiences with death and dying
University of Minnesota Research
   Conceptual Differences:
       Personal: Fears, Uncertainties, & Concerns

           “It’s definitely a concern for people, so if I die in the
            shelter, if I die in a ditch someplace, probably what’s
            going to happen is that I’ll go to the coroner, they’ll put
            me in a cardboard box, and stick me in the ground
            someplace with my name on it. Nobody will be there.”
University of Minnesota Research
   Conceptual Differences:
       Personal: Fears, Uncertainties, & Concerns

           “Another guy asked me to make sure that I come to
            see his body if he should die. And I said why are you
            asking me? Are you ill? And he said yes, I have lung
            cancer and I’m not going to live very long. ‘And so will
            you come and see me, see my body?’
University of Minnesota Research
   Conceptual Differences:
       Relational: Interpersonal Relationships

           “Homeless people, or street punks, whatever you call them,
            whatever is right for them, prostitutes or whatever,
            sometimes these type of people…seems more like a family
            member than their own family. For me that is considered a
            family member…my living will says my family will have no
            say or discussion of what is done. Basically, they don’t
            know me, so why should they have a say in whether I live
            or not?”
University of Minnesota Research
   Conceptual Differences:
       Environmental: Context & Ubiquity of Death

           “I think six people have died in the last eight months;
            two, like one right across the hall, and one kiddie-
            corner, and one right next to me, so it’s like three
            deaths right in this hallway, so it just reeks of death.”
University of Minnesota Research
   Conceptual Differences:
       Environmental: Context & Ubiquity of Death

           Homeless person: “We… are like buffalo in the
            hunting days…There’s this big herd of buffalo and
            they’re all standing there chewing on grass and all of a
            sudden you hear a shot ring out and the buffalo
            standing right next to you goes, oh, hits the dirt
            because he’s been shot. And the other buffalo look
            over there and turn back and keep right on eating the
            grass…”
University of Minnesota Research


   Desire for Advance Care Planning!

        “You gotta have it wrote down, or else they’ll do just
         what they want.”
   What are advance health care
    directives?
University of Minnesota Research
   Pilot 2006 - Survey & opportunity to complete
    an advance directive

       Two Groups:
           Guided Intervention (GI) - one-on-one assistance
           Minimal Intervention (MI) - no individual assistance
University of Minnesota Research
   Pilot Results:
                                            Advance Directive Completion
       GI - 59%                                by Intervention Arm
       MI - 30%
                                       25
                                               AD Completion                   21
                                               No AD Completion
                                       20
                   Number of Persons




                                                 17

                                       15
                                                         12

                                       10                              9


                                       5


                                       0
                                             Guided Intervention   Minimal Intervention
University of Minnesota Research
   Current Study:
       Pilot study only larger scale (314 people)
       Audit hospital records at 18 months
   Results:
       High rates of AD completion in GI group
       Catalyst for conversation
       Well received by homeless individuals and larger
        community
My Living Will:
  A Healthcare Directive
Determining Capacity
   Determining Capacity
       Formal Assessment
           Hopkins Competency Assessment Test
       Professional Judgment
           Do they understand the information and how it applies
            to them and their future?
           Is there rational or irrational processing of discussion?
           Do they have the ability to express a consistent
            choice/preference?
       Never rule out an entire group of people
National Homeless Persons’ Memorial Day
December 21st - Winter Solstice
References/Literature
   Barrow, S., Herman, D., Cordova, P., & Struening, E. (1999). Mortality among
    homeless shelter residents in New York City. American Journal of Public Health,
    89(4), 529-534.
   Bartels, D.M, Ulvestad, N., Ratner, E., Wall, M., Uutala, M., & Song, J. (2008).
    Dignity matters: Advance care planning for people experiencing homelessness. The
    Journal of Clinical Ethics, 19(3), 214-222.
   Cheung, A., & Hwang, S. (2004). Risk of death among homeless women: A cohort
    study and review of the literature. CMAJ, 13, 1243-1247.
   Gibson R. (2001). Palliative care for the poor and disenfranchised: A view from the
    Robert Wood Johnson Foundation. Journal of the Royal Society of Medicine, 94,
    486–489.
   Hibbs, J., Benner, L., Klugman, L., Spencer, R., Macchia, I., Mellinger, A., & Fife, D.
    (1994). Mortality in a cohort of homeless adults in Philadelphia. The New England
    Journal of Medicine, 331(5), 304-309.
   Hwang, S., Lebow, J., Bierer, M., O’Connell, J.J., Orav, J., & Brennan, T. (1998). Risk
    factors for death in homeless adults in Boston. Archives of Internal Medicine,
    158(13), 1454-1460.
   Hwang, S., Orav, J., O’Connell, J.J., Lebow, J., & Brennan, T. (1997). Causes of
    death in homeless adults in Boston. Annals of Internal Medicine, 126(8), 625-628.
   Hwang, S., O’Connell, J.J., Lebow, J., Bierer, M., Orav, E, & Brannan, T. (2001).
    Health care utilization among homeless adults prior to death. Journal of Health Care
    for the Poor and Underserved, 12(1), 50-58.
References/Literature
   King County Public Health 2004. Available at:
    http://www.metrokc.gov/HEALTH/hchn/2004-annual-report-HD.pdf.
   Kushel, M., & Miaskowski, C. (2006). End-of-life care for homeless patients: “She
    says she is there to help me in any situation.” JAMA, 296(24). 2959-2966.
   Moller, D. (2005). None left behind: Urban poverty, social experience, and rethinking
    palliative care. Journal of Palliative Medicine, 8(1). 17-19.
   Norris, W., Nielse, E., Engelberg, R., & Curtis, R. (2005). Treatment preferences for
    resuscitation and critical care among homeless individuals. CHEST, 127(6). 2180-
    2187.
   O’Connell, J.J. (2005). Premature mortality in homeless populations: A review of the
    literature. Nashville, TN: National Health Care for the Homeless Council.
   O’Connell, J.J. (2007). The need for homelessness prevention: A doctor's view of life
    and death on the streets. The Journal of Primary Prevention, 28(3-4), 199-203.
   Rousseau, P. (1998). The homeless terminally ill and hospice & palliative care.
    American Journal of Hospice & Palliative Care, 15(4), 196-197.
   Roy, E., Haley, N., Leclere, P., Sochanski, B., Boudreau, J.F., & Boivin, J.F. (2004).
    Mortality in a cohort of street youth in Montreal. JAMA, 292(5), 569-574.
References/Literature
   Song, J., Bartels, D., Ratner, E., Alderton, L., Hudson, B., & Ahluwalia, J. (2007).
    Dying on the streets: Homeless persons’ concerns and desires about end of life care.
    Journal of General Internal Medicine, 22. 435-441.
   Song, J., Ratner, E., & Bartels, D., (2005). Dying while homeless: Is it a concern
    when life itself is such a struggle? The Journal of Clinical Ethics, 16(3), 251-261.
   Song, J., Ratner, E., Bartels, D., Alderton, L., Hudson, B., & Ahluwalia, J. (2007).
    Experiences with and attitudes toward death and dying among homeless persons.
    Journal of General Internal Medicine, 22, 427-434.
   Tarzian, A., Neal, M., & O’Neil, A. (2005). Attitudes, experiences, and beliefs affecting
    end-of-life decision-making among homeless individuals. Journal of Palliative
    Medicine, 8(1). 36-48.
   Wright R.D., Jones A., Wright S. (1999). Dying homeless but not alone: Social
    support roles of staff members in homeless shelters. Illness, Crisis & Loss, 7(3), 233–
    251.
Contact
   Nancy Ulvestad
       ulves009@umn.edu

   Dawn Petroskas
       deexx017@umn.edu

   SELPH Website
       http://www.SELPH.umn.edu

								
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