By Dr Kelli Stajduhar, UVic Institute on Aging & Lifelong Health
For most Canadians, good palliative care is still not a given, despite its many proven benefits. This is especially true for people who experience poverty, homelessness, disability, racialization, or stigma associated with mental illness or illicit drug use. We wanted to find out who these individuals were, how they lived and died, and what we could do to alleviate suffering and loneliness at the end of their lives. For two years, our team conducted over 300 hours of observations and multiple interviews with 25 homeless and vulnerably housed people, their support persons, and service providers. Interviews with decision-makers in homeless-serving agencies across Canada, the United States, and the UK supplemented our data.
Our study shone a light on complex barriers to care at the end of life (EOL) for homeless and vulnerably housed people. Many had experienced a lifetime of poor treatment and discrimination in healthcare settings, which resulted in avoidance and distrust of mainstream healthcare institutions (e.g., hospitals) and medical professionals. Participants were diagnosed late in their trajectory and many were not identified as in need of palliative care until they were actively dying. Because of the need to survive, palliative care and even discussions about death and dying were simply absent from participants’ everyday realities and the purview of their support persons and community-based service providers.
Homeless and vulnerably housed people must navigate multiple systems to get what they need, like social assistance, shelter and housing, and access to food banks, which became exacerbated at the EOL. Lack of continuity and consistency in palliative-care service providers created barriers to care for this community, where relationships of trust are paramount. Some participants lived in places that were deemed unsafe for home support and/or home-care nurses to attend. A lack of appropriate, affordable, and adequate housing, combined with risk-management policies, meant that people could not age in place and were moved (most often into acute care) as their medical needs increased or as they approached the EOL.
Those supporting homeless and vulnerably housed people experienced unmet need, multiple losses, persistent grief, and vicarious trauma. Mechanisms for providing support to those who care for dying people are inadequate, given the magnitude of loss and injustice witnessed and experienced.
The news was not all bad though. By and large, when people received a “legitimate” (palliative) diagnosis and were assigned to service providers who had an orientation to palliative care and the social determinants of health, services came around them quickly and efficiently. Participants who received this care told us that it was the first time in their life that they had felt heard, valued, and had their needs met by the healthcare system.
Going forward, our team is taking findings from this study to collaborate closely with social-care workers who assist homeless and vulnerably housed people in shelters (hostels), drop-ins, and on the street to adapt palliative approaches to care in their work settings.
Read the full publication here:
Stajduhar K.I., & Mollison, A. (2018). Too little, too late: How we fail vulnerable Canadians as they die and what to do about it. University of Victoria Institute on Aging and Lifelong Health – https://www.uvic.ca/research/groups/peol/home/news/current/final-project-report-released.php
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