Equitable Access to Care Study
For most Canadians, good palliative care is still not a given, despite its many proven benefits that add up to a longer, more comfortable time before death. Access to the services involved, from medical to social to psychological, is uneven across the country and is not universally funded. This report explores findings from a recent research project on equitable access to palliative care in Victoria, British Columbia (BC). Our participants belonged to a vulnerable segment of Canadian society – those in poverty, homeless or barely housed, disabled, racialized, mentally ill, using illicit drugs. To capture this group clearly and without attaching blame or promoting stigma, we have come to describe them as a population who are “structurally vulnerable.” 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.
The main objectives of the study were to:
Provide a detailed contextual description of the experiences of homeless and barely housed individuals in accessing health care services at the end-of-life in Victoria, BC;
Identify barriers and facilitators to promoting quality palliative care for this population;
Review promising programs and practices; and 4. Develop recommendations for improving access to end-of-life care for structurally vulnerable people.
What we did
This study was ethnographic, a kind of research that describes humans in their various cultures. For two years, over 300 hours of observations were conducted with 25 homeless and vulnerably housed people, their support persons (e.g., people they choose to act as family), and service providers. A total of 147 interviews were conducted with these groups as well as key informants including managers, medical directors, executive directors, and policy makers. Interviews with representatives of organizations supporting people at end-of-life across Canada, in the United States, and the United Kingdom supplemented our data as well as community knowledge exchange forums to share preliminary findings, gain feedback, and identify any potential data gaps.
Stajduhar, K.I., Giesbrecht, M., Mollison, A., Dosani, N., & McNeil, R. (2020). Caregiving at the margins: An ethnographic exploration of ‘family’ caregivers’ experiences providing care for structurally vulnerable populations at the end-of-life. Palliative Medicine, 1-8.
Stajduhar, K., Mollison, A., Giesbrecht, M., McNeil, R., Pauly, B., Reimer-Kirkham, S., Dosani, N., Wallace, B., Showler, G., Meagher, C., Kvakic, K., Gleave, D., Teal, T., Rose, C., Showler, C., & Rounds, K. (2019). “Just too busy living in the moment and surviving”: Barriers to accessing health care for structurally vulnerable populations at end-of-life. BMC Palliative Care, 18(11).
Giesbrecht, M., Stajduhar, K., Mollison, A., Pauly, B., Reimer-Kirkham, S., McNeil, R., Wallace, B., Dosani, N., & Rose, C. (2018). Hospitals, clinics, and palliative care units: Place-based experiences of formal healthcare settings by people experiencing structural vulnerability at the end-of-life. Health and Place, 53(September), 43-51.
Stajduhar, K.I., Mollison, A., Gleave, D., & Hwang, S.W. (2017). Editorial: When cancer hits the streets. Current Oncology, 24(3), 1-2.
Reimer-Kirkham, S., Stajduhar, K., Pauly, B., Giesbrecht, M., Mollison, A., McNeil, R., & Wallace, B. (2016). Death is a social justice issue: Perspectives on equity-informed palliative care. Advances in Nursing Science, 39(4), 293-307.