How do people experiencing homelessness get palliative care?

Canadian Observatory on Homelessness/Homeless Hub: York University
July 22, 2016
Categories: Ask the Hub

As Canada’s aging population and rates of chronic and terminal illnesses rise, palliative and end-of-life care services will be more and more in demand.

Palliative care helps people live the best lives they can while facing life-threatening illness. It focuses on relieving pain, easing confusion, and considers the emotional and spiritual needs of the patient and their families. As Dr. Dosani pointed out in his blog post a few years ago, there’s increasing evidence that early palliative care (upon diagnosis) should be a priority for everyone.

According to research by Donna Wilson and others, most Canadians want to die at home, or in places that feel like home (cabins, somewhere in nature, etc.), with only a small percentage of people saying they want to die in a hospital or nursing home (where most people do end up dying). This discrepancy has inspired much conversation about the rising importance of hospices, palliative care, and making it more affordable for people to die at home. But what happens to someone who is terminally ill and doesn’t have a home?

People experiencing homelessness, especially chronically, are more likely to have a wide range of health issues and a much lower average mortality age than people who are housed. Despite having high needs, many have a hard time accessing mainstream health services due to stigma, discrimination, past negative experiences, inflexible programming, and location. While there isn’t much research on people experiencing homelessness and palliative care, we know that many are interested in advanced care planning and choosing location of death. One 2007 study found that among its 53 participants:

  • Many had experiences with death (of friends, family and other street-involved people).
  • There was a lot of interest in advance directives and end-of-life care, but participants felt that programs were inaccessible.
  • Many echoed the same sentiments about dying that have come up in other studies with the general population (being reunited with family), but others had more unique concerns, like dying anonymously, alone or undiscovered.

Despite expressing a desire for choice, most people experiencing homelessness die in acute-care settings.

Barriers to palliative care

A 2013 Toronto-based study assessed how people experiencing homelessness accessed palliative care. The participants, nurses and outreach workers, highlighted the following as important barriers:

  • Housing sector staff are rarely trained in end-of-life care, and don’t have sufficient access to medical professionals.
  • Many people experiencing homelessness have had past negative experiences in healthcare and don’t feel comfortable seeking it.
  • Many echoed the same sentiments about dying that have come up in other studies with the general population (being reunited with family), but others had more unique concerns, like dying anonymously, alone or undiscovered.

In another study, participating housing workers outlined four main recommendations to help improve access to palliative care: “(1) increasing positive interaction between the health care system and the homeless, (2) training staff to deal with the unique issues confronting the homeless, (3) providing patient-centered care, and (4) diversifying the methods of delivery.”  

Types of palliative care

There’s a few different ways people experiencing homelessness can get palliative care, depending on where they’re located:

Shelter-based programs

Some hostels and shelters coordinate with other organizations and medical staff to provide palliative care when needed, though there are limitations to what can be offered in many cases. Many residents are expected to leave during the day for cleaning – not a possibility for the very ill – and guests are often only allowed within specific timeframes. Exceptions can be made but it is at the discretion of shelter staff.

Even so, there is evidence that this model is not only effective at reducing pain, improving comfort and – sometimes – helping patients reconnect with friends or family, but is also more cost effective than if patients sought treatment elsewhere. In one 2006 study, 28 patients who were terminally ill and homeless were admitted to and died in a hospice.  Researchers compared the hospice to other care locations and projected $1.39 million in savings for these patients’ care.

One of the challenges of these programs is that partnerships with health professionals aren’t always strong enough, resulting in role confusion and a burden of work placed on shelter workers. Another is the devaluing of end-of-life and palliative care in general, resulting in unpaid overtime and heavy emotional stress for shelter workers. The participants of Webb’s U.K-based study all identified situations in which they’d gone beyond the call of duty for residents:

‘That weekend when I spent 17 hours at the hospital it was in my own time.’ Participants had even visited dying residents while they were off duty in order to meet their emotional needs. Two had worked unpaid in order to be there for the resident’s final moments of life and one staff member described a scenario where she took complete responsibility for arranging the resident’s funeral (p. 242).

While it’s wonderful that there are people willing to provide such care, these stories speak to a greater need for funding and training for end-of-life care in the hostels and shelters that provide them.

Mobile programs

Another less common, but more flexible model of palliative care is mobile programs, which meet people in need whether they be on the street or sheltered. In Toronto, PEACH (Palliative Education and Care for the Homeless) is one such program (its principles listed below). In May of this year, The Toronto Star ran a story about nurse Namarig Ahmed, who coordinates PEACH, and secured a bed for a man dying of cancer in the shelter he spent most of his time in. Though PEACH is doing much to give people experiencing homelessness the dignity of choosing how to die and minimizing their pain, there is much more work to be done. As Alex Newman wrote in the article:

Although the PEACH program is “one step closer to dying with dignity, and with as little pain or discomfort as possible, we’re still trying to find better way to deal with this,” Ahmed says. “Having conversations with other health-care providers is a vital first step to find a solution and make this care accessible to all."

PEACH Principles


Improving access to palliative care

Of course, both shelter- and mobile-based programs are usually only available to people living in urban centres. Hospices, shelters, and hostels are in much smaller supplies in rural and remote areas. There, people almost always need to go to hospitals or pay for personal care – options which are often unavailable to people experiencing homelessness.

As the writers of this 2015 literature review point out, we need more models of intervention for advanced care planning, palliative care, and end-of-life care that address the needs of people experiencing homelessness. More importantly, as Huynh, Henry and Dosani proposed in a recent article, a national strategy is needed to “address this glaring gap in our healthcare provision,” and promote policy development around ensuring everyone has access to palliative and end-of-life care.  

This post is part of our Friday "Ask the Hub" blog series. Have a homeless-related question you want answered? E-mail us at thehub@edu.yorku.ca and we will provide a research-based answer.

Graphic credit: Juxta Magazine

Emma Woolley is a 2016 graduate of York University's Bachelor of Social Work program with a background in publishing, freelance writing and digital communications. Her interest in affordable housing, homelessness, 2LGBTQ rights, and social justice led her to work with The Homeless Hub. Emma is now pursuing her Master of Social Work at The University of Toronto, where she is focusing on anti-oppressive, strengths-based, recovery-oriented, and critical approaches to mental health care.

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