A Study of the Deaths of Persons A Study of the Deaths of Persons who are Homeless in Ottawa: A who are Homeless in Ottawa: A Social and Health InvestigationSocial and Health Investigation

Manal Guirguis-Younger

Tim Aubry

Vivien Runnels

Study PartnersStudy Partners

Saint Paul University

University of Ottawa (Centre for Research on Community Services and the Institute of Population Health.)

Funded by the City of Ottawa through the Supporting Communities Partnership Initiative, Government of Canada

Study PartnersStudy Partners

Community Groups and Organizations

City of OttawaHomelessness Initiative TeamsAlliance to End Homelessness

Research TeamResearch Team

Saint Paul University– Manal Guirguis

Younger– Vivien Runnels

Royal Ottawa Hospital – Susan Farrell

University of Ottawa Centre for Research on

Community Services

– Tim Aubry

University of Ottawa

– Jeff Turnbull– Tiina Podymow– Peter Tugwell

Community Advisory CommitteeCommunity Advisory Committee

Judy Taylor Pam Oickle Bruce Ransome Donna Pettey Denise Vallely Donna Lougheed Susan Brandt Manal Guirguis Younger (Principal Investigator) Vivien Runnels (Research Coordinator)

Why look at Deaths?Why look at Deaths?

A large number of studies show that individuals who are homeless have a mortality rate that is 2 to 10 times higher than the general population

Homelessness is a way of being rather than a single demographic

Strong impact on all aspects of persons life

Why look at Deaths?Why look at Deaths?

Must examine untimely deaths of persons who are homeless in the context of homelessness

What can we learn about the lives and deaths of individuals who are homeless? And what preventive strategies can we recommend?

BackgroundBackgroundLiterature ReviewLiterature Review

Study of best practices & current research: San Francisco/Hwang et al.

– Multiple approaches to studying deaths Coroner’s studies Special Populations (e.g., First Nations) Common Features (e.g., age, SES) Deaths occurring at the same time (e.g., heat

wave)

Purposes of the StudyPurposes of the Study

This investigation aims to:

Develop a sustainable methodology to study deaths occurring among persons who are homeless in Ottawa

Provide an initial study to assess the methodology -- using an empirically-based approach to methodology development

Purposes of the Study Purposes of the Study ((continued)continued)

Provide information regarding long and short term health and social factors contributing to the deaths of persons who are homeless in Ottawa.

Provide recommendations regarding preventive strategies that would potentially reduce the mortality rate within the homeless population

Methodology: Carrying out a Methodology: Carrying out a Social Autopsy on Persons Social Autopsy on Persons

who are Homelesswho are Homeless

No clear precedent for methodology

Complications No systematic way to identify homelessness at the time of

death

Consent – permission to collect information about persons who are deceased

– Next of kin consent

Methodological ModelMethodological Modelsetting the stagesetting the stage

Identifying Community Organizations (> 40 organizations that are involved in service provision with homeless persons)

Providing project information and asking for collaboration: letters, phone calls

Meeting with the leaders of target organizations

Methodological ModelMethodological Modelsetting the stagesetting the stage

Presentation to community groups

Attending memorial services

Attending events addressing housing issues in Ottawa

MethodologyMethodologyIssues of DisclosureIssues of Disclosure

Confidentiality– Deceased person (identity and personal

information)

– Family members (flow of information)

MethodologyMethodologyIssues of DisclosureIssues of Disclosure

– Service providers/organizations: Ontario Freedom of Information and Protection of Privacy Act (Ch F. 31, part II, s. 21. e, R.S.O, 1990).

MethodologyMethodologyToolsTools

Sources of Information Three groups of individuals, each requiring a

different semi-structured interview

– Service provider interviews– Friends and acquaintances – Families– Open ended interview

MethodologyMethodologyService ProvidersService Providers

Interview protocol with service providers includes the following areas:

– Personal profile of the deceased– Housing/Shelter information– Daily challenges/Daily activities– Income– Social participation– Mental and physical health– Substance use– Events prior to death– Relationship with family*

MethodologyMethodologyFamily MembersFamily Members

Interview protocol with family members includes the following information:

– Developmental history covering areas such as physical and mental health, education, social participation, contact with the law, absence from home, etc.

– Other information surrounding the deceased person’s recent situation and circumstances of death

MethodologyMethodologyFriendsFriends

Interview protocol with friends/acquaintances includes the following information:

– Social relationships and networks– Support– Significant others– Spirituality (e.g., connection with spiritual leaders

etc.)– Desires, wishes, and aspirations.

MethodologyMethodologyDuration and number of casesDuration and number of cases

Time sample: 6 months (July 2003 – January 2003)

Total number of cases: 25 cases

AnalysesAnalyses

Descriptive data: demographics, and cause of death if known

Qualitative analysis of social and health themes/patterns leading to the possibility of untimely death.

FindingsFindings

Findings are based on group data

Information was organized in terms of major themes that emerged from the intensive interviews and from observations

Who were the people?Who were the people?Immediate causes of DeathImmediate causes of Death

Health picture is quite complex, with multiple diagnoses of serious disease

Figure 2. Primary Health Conditions Causing Death in a Sample of Homeless Persons

15%

30%

20%

10%

5%

15%

5%

Liver Disease

HIV/AIDS

Cancer

Heart Problems

Diabetes

Other Conditions

Overdose

Immediate Causes of DeathImmediate Causes of Death

Negligible proportion of the deaths were directly related to violence

None of the deaths were caused by

exposure

Long-Term Contributors to Homelessness and Long-Term Contributors to Homelessness and DeathDeath

Life Course Development and Life Style

-Presence of emotional/physical/sexual abuse were frequently cited as triggers that may have led to homelessness

-Unaddressed learning disabilities, and visible or invisible disabilities were identified as negatively impacting on schooling, employment, and relationships

Long-Term Contributors to Homelessness and DeathLong-Term Contributors to Homelessness and Death

- Unexamined sudden changes in behaviour, e.g., withdrawal, delinquency

- Difficult life events, death of a parent, alienation from family

- High-risk life style-practices that increase risk of communicable disease

- High-risk life-style practices contribute to inability to maintain housing

Long-Term Contributors to Homelessness and DeathLong-Term Contributors to Homelessness and Death

Experiences with Housing and Shelter

-Difficulty coping with housing requirements

-Safety issues; especially for women

-Incarceration/detention

Long-Term Contributors to Homelessness and DeathLong-Term Contributors to Homelessness and Death

Experiences with Health Care

Homelessness undermines the effectiveness of health care

Issues of trust

Mental illness as a barrier, difficult to offer or implement treatment

Long-Term Contributors to Homelessness and Long-Term Contributors to Homelessness and DeathDeath

Substance abuse: unavailability of suitable programs, readiness, deeper emotional issues

Poor social support: isolation/little support from others

Preventive Strategies to Untimely DeathPreventive Strategies to Untimely Death

Service Provision

-Basic needs: significant challenges

-Shelter systems

-Targeting special populations

Preventive Strategies to Untimely DeathPreventive Strategies to Untimely Death

Service providers as agents

-Support

-Link for re-engagement, implementation of services

Limitations of the StudyLimitations of the Study

Initial information regarding deaths: must rely on the community and service providers to forward the information, with possible misses

Definitions of homelessness

A Study of the Deaths of Persons A Study of the Deaths of Persons who are Homeless in Ottawa: A who are Homeless in Ottawa: A Social and Health InvestigationSocial and Health Investigation

Homelessness has been described as “a very fluid social problem.” (Fitzgerald, Mack, Dail, 2001). From a research perspective the study of homelessness and death requires a fluid methodology.

Future DirectionsFuture Directions

Implementation of the social autopsy methodology to follow the impact of homelessness on death

Feasible implementation of Sustainable Methodology based on limited but random number of cases

Multiple Sites

Methodology as a program evaluation tool

Future Directions: Themes for ResearchFuture Directions: Themes for Research

The Quality of Dying: Palliative Care for those who are homeless

– A home to die: A unique form of Palliative care– An essential service: meeting the challenge.

Future Directions: Follow-up Studies Future Directions: Follow-up Studies The Quality of DyingThe Quality of Dying

Challenges and Best Practices Providing a safe and trusting environment to die

Recreating a home: The special needs of persons who are homeless

Addressing the complex medical care of this special population

Future Directions: Quality of DyingFuture Directions: Quality of Dying

There is a need of a model of best practices

Local example: Home Hospice at the Mission

Multi-site applications in other communities

Future DirectionFuture Direction

Research looking at the role of outreach workers– Role/training– Bridge access to services– Help support persons who are homeless to

reconnect with the community– Facilitate transitional housing, employment,

social situations

Ending RemarksEnding Remarks

Many Questions Remain

Commendable efforts are in place but we must continue to tackle the challenge

We need to move beyond the local findings and begin to look more to the mobilization of knowledge across Canada