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 Ulves009@umn.edu

Dawn Petroskas deexx017@umn.edu http://www.SELPH.umn.edu

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