University of Toronto M.D. Candidate 2017
Benefits and Barriers to the Homeless by In-Shelter Palliative Care: A Qualitative Study

Authors: Anton Nikouline BMSc; Naheed Dosani MD, MD, CCFP, BSc

Introduction

In 2002, an estimated 32,000 people slept in a Toronto homeless shelter1. In Toronto, homeless persons have high rates of early mortality from AIDS, cancer and hepatitis diseases2. The mean age at death in this population is reported to be 34-47 years, with age-adjusted death rates 2-4 times higher than the general population in North American and European cities2. Despite their poor health status, more than half of homeless individuals did not have a family doctor, more than a third felt judged or treated with disrespect by their health care doctor and 1 in 5 had a negative experience with hospital security3

An in-shelter hospice program in Ottawa showed a savings of $1.39 million to the health care system by instituting an in-shelter palliative care program3. Many shelter attendees expressed wishes to die within the shelter system rather than moving to a tertiary or palliative hospital3. However, in Toronto, 34-59% homeless persons are still dying in acute care settings4. The objective of the present study is to determine the benefits and barriers of in-shelter palliative care and possible enablers to future implementation in Toronto. 

Methods

Using snowball sampling, shelter-based social service providers were interviewed from three distinct Toronto shelters. In order to assess the palliative care needs for homeless persons within the shelter system, three specific questions were asked of each provider: 1) What are the perceived benefits to in-shelter palliative care? 2) What are the barriers to delivering palliative care in shelter? And,3) What are strategies for overcoming these barriers and enabling implementation?

Five transcripts were obtained from case workers, social support workers and shelter managers using semi-structured interviews lasting approximately one hour each. Using thematic analysis, transcripts were unified and themes were distilled and defined.  

Results

Thematic analysis of the five interviews yielded themes that fell under three broad categories: Benefits, Barriers and Enablers.

Benefits of In-Shelter Palliative Care Programs

“If you’re diagnosed while living in a shelter and you have these supports here, then all of a sudden those supports are gone, you don’t see the same faces. Their lifestyle is important to them.” 

Choice – Shelter staff unanimously agreed on the importance of affording homeless individuals the choice of where to die.  There was concern that once homeless persons entered a hospice or hospital setting, all choice would be taken from them. In a population devoid of resources, having flexibility regarding end-of-life options, such as a shelter-based death, affords better quality of life.  

Staying In-shelter – In giving an individual the choice to die where he or she pleases, it is important that individuals be given the option to stay in a shelter at the end of life. Shelter staff stated that many patients with mental health issues had difficulty adjusting when admitted to hospice or hospital care. The new settings, new people, and the loss of their previous lifestyle so suddenly caused great stress at a very vulnerable time in their lives. As such, the ability to continue palliative care within a shelter is vital.  

Barriers to In-Shelter Palliative Care

“There are some that are so paranoid and distrustful that they won’t see a doctor. They are afraid…..We have had a few cases where [clients] have been dying… just totally running from seeing a doctor, not wanting to visit a hospice…” 

Resources - Shelter staff were worried that a new palliative care program would mean more work for them and a greater burden for a workforce already stretched thin.  They did not believe there to be sufficient space to reserve beds for those with palliative needs. Lastly, they described little opportunity or funding for training shelter staff in palliative care.

Trust - The largest barrier distilled from the transcripts was the patient population’s distrust of medical care. As a result of a long history of exploitation and discrimination, homeless persons often do not wish to seek medical care, even in end-of-life. They are more afraid of the medical system than they are of dying.

Enablers to In-Shelter Palliative Care

“This is an issue of death and the community themselves or people themselves need to actually be able to voice and raise the opinion that it is important to them.” 

Communication – Palliative care programs utilizing health practitioners with strong communication skills were appreciated by patients. Strong and frequent communication demonstrated reliability and commitment to the homeless population and shelter staff. Being available through multiple modalities (e-mail, phone, etc.) improved communication. 

Community Involvement – Participants stressed the importance of the involvement of the homeless population in pushing this issue forward. In order for such a palliative care program to succeed, this population would need to voice their approval. Due to the distrust of medical care, shelter staff felt that the population itself needed to advocate for the importance of palliative care in-shelter.  

Discussion  

The interviews in this study demonstrate the need for in shelter palliative care programs, but also highlight many of the significant barriers to the success of such programs, and some of the pieces that will needed in order to make this a reality.

First, the kind of program instituted will have to be specifically tailored to this unique population.  The resources that will be required for an in-shelter palliative care program to succeed go beyond funding. A mobile and flexible program is needed for this fluid population. The lack of space that many shelters face must be dealt with by a palliative care team that is able to make use of limited space, operate in many different locations and provide flexible treatment options. This type of adaptability and resourcefulness would be paramount in caring for refugee patients, patients without provincial health coverage, and in providing continuity of care for the patients who choose to leave the shelter system. 

One of the largest barriers demonstrated in the study is establishing trust with the population.  Strong communication is a strategy necessary to overcome this barrier. The health care team needs to be available to both the clients and shelter staff through e-mail, phone call or text to build a sense of security and commitment. Support from the homeless community is also vital in developing trust. This will require both community members advocating for their palliative care needs and the healthcare staff advocating for the community. Support and education of shelter staff would also garner more trust with the community. There is very little training in palliative care for shelter workers and burnout rates of staff are high. A palliative care team would need to be supportive to shelter staff in order to be viewed as a help rather than an extra burden. Finally, there needs to be support after death for both shelter occupants and staff, including bereavement groups and memorial services from friends and family. It is important not to end the care at death, since many in the community may be affected and need ongoing support. 

Conclusion 

While the sample size for the study was very small, nevertheless the findings indicate that appropriate palliative care for the homeless is an issue that deserves serious attention.

There was an overwhelming expression by respondents that palliative care for the homeless population needs to be improved, and shelter staff were receptive to in-shelter palliative care. They expressed that clients of palliative care would benefit from an increase in choice and ability to remain in-shelter. There was a concern by respondents about a lack of resources and distrust by the shelter clients and staff in implementing these programs. Strong communication and community support were seen as enablers to implementation.
 

References

1. City of Toronto, Shelter, Support and Housing Administration. 2013. 20013 Street Needs Assessment: Results and Key Findings. Toronto: City of Toronto. Available at:http://www.toronto.ca/legdocs/mmis/2013/cd/bgrd/backgroundfile-61364.pdf
2. Street Health. The Street Health Report 2007. September 2007.
3. Podymow T, Turnbull J, Coyle D. Shelter-based palliative care for the homeless terminally ill. Palliat Med. 2006;20(2):81-86.
4. Hwang SW. Mortality Among Men Using Homeless Shelters in Toronto, Ontario. JAMA. 2000;283(16):2152-2157.