Homeless-Specific Advance Directives Adapted by Dawn Petroskas & Nancy Ulvestad John Song, Edward...
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Transcript of Homeless-Specific Advance Directives Adapted by Dawn Petroskas & Nancy Ulvestad John Song, Edward...
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 dyingo SMR < 1 = Homeless have a lower risk of dying
Death & Dying of Homeless Populations
Philadelphia SMR = 3.5
New York SMR = 4
Toronto SMR (women) = 10
Copenhagen SMR (men) = 2.8 SMR (women) = 5.6
Stockholm SMR (men) = 4
Montreal 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 care & hospice care
Challenging meeting comfort & privacy needs
Lack of proxy decision makers
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%
“How often 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: GI - 59% MI - 30%
Advance Directive Completion by Intervention Arm
17
9
12
21
0
5
10
15
20
25
Number of Persons
AD Completion
No AD Completion
Guided Intervention Minimal Intervention
University of Minnesota Research
Current Study: Pilot study only larger scale (300 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
How can we improve end-of-life care and bring ADs to other homeless communities?
Practical Tips
Advance care planning is a process - can be as simple as getting an emergency contact number
Include discussion on housing intake
Prepaid burial plans
Grief care for ‘neighbors’ / friends / housing staff
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. 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.
King County Public Health 2004. Available at: http://www.metrokc.gov/HEALTH/hchn/2004-annual-report-HD.pdf.
References/Literature 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 [email protected]
Dawn Petroskas [email protected] http://www.SELPH.umn.edu
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