Rooted in Community, Guided by Tradition: Reimagining Palliative Care for Indigenous Peoples

About two-thirds of all deaths in Canada result from conditions that require palliative care. Indigenous communities often lack autonomy in how they engage in both living and dying. Increasing life expectancy and higher rates of chronic diseases among Indigenous people have led to a pressing need for culturally competent palliative care. Palliative care is a service used to prevent and relieve the suffering of those living with life-limiting illnesses, through early detection and treatment of physical, psychosocial, or spiritual problems.

The lack of palliative care in Indigenous communities is a clear manifestation of health inequity—the presence of avoidable, unfair, and systemic differences in health outcomes, because of historical injustices and ongoing systemic racism. Many indigenous communities still lack formally funded palliative care programs, despite commitments made by the federal government. While investments have been made for co-development of a palliative care framework, knowledge translation has been limited.

A scoping review of studies revealed shared experiences among indigenous people and other stakeholders on end-of-life experiences and palliative care programs. The studies identified three key barriers to access for indigenous communities:

(1) lack of accessible services or home care,

(2) cultural safety, and

(3) delivery of care.

Unfortunately, to receive any palliative care, most indigenous people are transferred to urban hospitals, where they are isolated from the support of loved ones and important traditional practices surrounding death. This lack of cultural safety can lead to emotional distress, spiritual disconnect, and a lack of dignity in the dying process. Additional issues with care delivery are a result of a lack of interpreters, and training around belief systems. Broader concerns focus on poor coordination and fragmented responsibility for Indigenous health services across federal, provincial, and territorial governments, resulting in funding gaps, unclear roles, and limited accountability.

As of now, research in palliative care on Indigenous people in Canada is limited. The findings from this rapid scoping review indicate a strong consensus in the literature that culturally safe, community-led models of palliative care are needed for capacity development. The programs implemented have demonstrated that when palliative care is grounded in community values, traditional teachings, and Indigenous leadership, they can better meet the end-of-life needs of the community.

To meet the ongoing need to monitor and support those in remote communities, digital technologies for virtual consultations were suggested to reduce the burden of travel and have better continuity or preventative care. However, implementation models, the infrastructure and training required, and how care can integrate community preferences remain unclear. To our knowledge, models of palliative care developed have not demonstrated long-term sustainability. Journey mapping and care pathways have been proposed as solutions that have yet to be explored. Broadly, existing research relies on qualitative methods, indicating a gap in mixed-methods or quantitative studies that could offer comparative data on care outcomes.

Most studies found were focused on rural, remote and reserve-based communities. Given the rising indigenous urban population, future research must explore how services can address the unique challenges that arise from contrasting Western medical frameworks. Similar geographic gaps are evident in the Prairies and Atlantic Canada, where limited infrastructure and weak partnerships may contribute to research underrepresentation.

As of now, there is a lack of research on palliative care in Indigenous communities in Canada. Indigenous communities deserve palliative care that is accessible, culturally competent and rooted in Indigenous ways of knowing.

About the Author

Muhammad Saim is a Health Sciences student at the University of Calgary with a passion for health equity and community-engaged research. His interest in this topic grew out of his broader work exploring equity in healthcare systems and the importance of centering marginalized voices in policy and practice.

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This post draws on findings from a range of studies and reports on Indigenous health and palliative care. For those interested in learning more, here are some of the key sources:

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