“Where do you want to die?” comes across as a rather direct question, but it is one our research team asked 2500 Canadians in a survey right before the pandemic. We wanted to collect this data to challenge a common assumption that dying at home is the best and universally preferred option for people with terminal conditions.
We presented three hypothetical scenarios to survey respondents. In the first one, we asked them to imagine having severe symptoms at the end of life, no family support and very limited access to health care services. In the second, symptoms were mild and family support and services were available. The final scenario presented an in-between option.
Do Canadians prefer dying at home in all these circumstances? The answer is no. Our results show that preferences depend on symptoms and availability of adequate supports at home. While most would prefer dying at home if circumstances permit, respondents tended to prefer palliative care units or hospices (and in some cases, even hospitals) when presented with the first scenario.
These findings are important because those whose life circumstances make dying at home a less-than-ideal or impossible scenario are often left out of the public and policy conversations. We need to ask ourselves what ‘home’ may mean to precariously housed people, those living in communities with limited access to support services, and those without a full-time caregiver or resources to hire supplementary private care.
Home is not universally the preferred place for dying. Some people may not want to die at home to spare family members from care provision responsibilities. For others, being socially integrated within a community may be more important than home as a specific location. For instance, dying in a local hospital where fewer services may be available but where staff might include friends and neighbours may be more appealing to rural residents than relocating to a city at the end of life.
Research we have conducted for this project reminds us that our common assumptions about dying at home may not consider what it means or looks like for different people. Conversations must continue between policymakers, health care providers, caregivers and ill or aging persons so that public policy can adequately respond to the complexities surrounding this issue.
As governments across Canada continue working towards improving end-of life care, efforts to promote dying at home must consider people with various life circumstances and must go hand-in-hand with adequate investment in hospices, palliative care, and community-based support services.
This research is funded by the Social Sciences and Humanities Research Council of Canada. To learn more about the project and the research team: http://www.dyingathome.ca/
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