Homelessness and End of Life Research John Song, M.D., M.P.H., M.A.T. Associate Professor Center for Bioethics University of Minnesota

Homelessness and End of Life Research

John Song, M.D., M.P.H., M.A.T.Associate ProfessorCenter for Bioethics

University of Minnesota

Overview

Analytic model of vulnerabilityHomelessness and vulnerabilityEnd of life research concernsOur qualitative research

Vulnerability

Analytic model of vulnerability Common Rule Protective guardianship NBAC/Kipnis

Financial vulnerabilityMedical vulnerabilitySocial vulnerabilityInstitutional vulnerability

Homelessness

What is homelessness? Stewart B. McKinney Act, 42 U.S.C. § 11301, et seq. (1994): "lacks a

fixed, regular, and adequate night-time residence and... has a primary night time residency that is: (A) a supervised publicly or privately operated shelter designed to provide temporary living accommodations... (B) an institution that provides a temporary residence for individuals intended to be institutionalized, or (C) a public or private place not designed for, or ordinarily used as, a regular sleeping accommodation for human beings."

Transient: A state or condition, not defining traitE.g. “Homeless person” or “person experiencing

homelessness” NOT “The homeless.”

Homelessness: Demographics

3.5 million people are likely to experience homelessness in a given year (Urban Institute 2000).

7.4% of Americans homeless during lifetime (Link, 1994).

1.35 million of them are children (Urban Institute 2000).

42% of these children are under age 5 (Nat’l Law Center on Homelessness and Poverty 2004).

Ages 55 – 64: 6% (Nat’l Law 2004). Women: 22 – 50 % fleeing domestic violence ( ACLU,

Zorza, Nat’l Coalition Against Domestic Violence). 61% increase in homelessness since foreclosure crisis

began in 2007 (Reuters)

Homelessness and vulnerability

Medical vulnerability Baltimore: Women – 9.2 problems / Men – 8.3 problems (Breakey

1989). Hepatitis B: 17%/29%/31% (Beech 2003, Klinkenberg 2003,

Gelberg 2001) Hepatitis C: 12%/22%/30% (Beech 2003, Gelberg 2002,

Klinkenberg 2003) HIV:

Nationwide (16 cities): 3.4% (Allen 1994)San Francisco: 8.5% (Zolopa 1994)Miami: 20% (Fournier 1996)Baltimore: 37% (Song 2000)

Tuberculosis: 32% (Gelberg 2001) 38% (MMWR 2005)


Poverty sample Homeless sample

Derm 21% 32%Seizure d/o 6% 14%Serious vision 12% 22%COPD 11% 21%

(Gelberg 1991)

Health status

Fair, poor health (%)

Health insurance (% distribution)

Medicaid or Medicare

Private or other

None

Regular source of care (%)

Health services utilization

Number of physician contacts/person/year

Number of hospital days/100 persons/year

10 24 37

8 38 23

78 27 12

16 36 66

81 76 44

5.5 6.3 2.9

73.7 125.7 226.9

(Gallagher 1997)

US Total

Population

US Poverty

PopulationHomeless


Financial vulnerability “Poverty and homelessness inextricably linked” (NCH) Median income: $3,600 (NLCHP)

Social vulnerability Hate crimes: Doubled in past 10 years (NCH, 2009) Dignity (Snow 1993, Miller 2001, Hoffman 2008)

Institutional vulnerability Subsistence needs Drop-in shelters; overnight shelters; health care

facilities; soup kitchens; case managers; job programs; substance abuse facilities; legal clinics; day care providers; etc.

End of life research

Qualitative EOL research (Koenig 2003, Reid 2009) Loss of privacy Potential physical discomfort Emotional distress (in perhaps unsafe

environment?) Intense, personal nature of qualitative work Follow-up questions may blur lines

Homelessness and EOL research

Conceptual differences: End of Life Care Most conceptions and interventions for End of

Life care focus on an individual with social support and basic needs being met

EOL research and care typically assumes that basic needs of food, clothing, safety, and shelter are being met

NIH State of the Science (2004)


Concerns: Much of what has been identified as important to good

EOL care are higher order concerns. If one’s life is a daily struggle for existence, how might

this affect one’s view of dying and EOL care? How does social alienation affect views of a dignified

and comfortable death? How does having access to so little affect a time when

many resources are needed?


MortalityPhiladelphia (Hibbs): SMR 3.5New York City (Barrow): SMR 3.9Toronto: Women SMR 10 (Cheung)Average age of death:

Atlanta – 44 SF – 41 Boston – 47


Risks v. BenefitsVulnerability in research setting

Decisional capacity Analytic model of vulnerability

How to conduct responsible research in this setting


MethodsRecruitment: Convenience sample

Recruited from six social service agencies in Minneapolis serving homeless person

Worked with social service providers and community advocates

Publicized via posters and word of mouthCompensation: $20.00Focus groups/audiotaped/transcribed

Conducted by investigators onlyAnalysisDissemination (e.g. NIH restrictions)


Dying, EOL care, and death are important

“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.”


Concerns and fears

“I have lung cancer and I’m not going to live very long. And so will you come and see me, see my body?”


Context of death/ubiquity of death “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…”


Interpersonal relationships “Right now, I have left my folks. They know where

I’m at. I got a brother here and he just saw me…but there’s no love there…But to leave this world, I’ve been here seven years, and have no family to come by and visit me…As I get older, I’m saying, wow, I might die. This dying bit and I don’t have no one. They’ll be there when I’m dead and gone, but who wants to wait till you’re dead to be around.”


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 [my] own family. For me that is considered a family whether I live or not?” 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

Documents

Homelessness and End of Life Research John Song, M.D., M.P.H., M.A.T. Associate Professor Center for Bioethics University of Minnesota