Beginning the journey into the spirit world

Why is it important for healthcare professionals and caregivers to provide culturally informed, community-based palliative and end-of-life care for First Nations, Inuit or Métis patients? What are some of the historical, social, political and spiritual factors to keep in mind in designing and providing palliative and end-of-life care to Indigenous communities?

These are some of the important questions animating Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada, a resource created in response to recommendations from First Nations, Inuit and Métis Elders, Knowledge Carriers, community health professionals, and researchers.

Beginning the journey into the spirit world summarizes factors contributing to palliative and end-of-life care experiences for First Nations, Inuit and Métis; highlights areas for action in palliative and end-of-life care based on priorities, gaps, challenges and needs expressed by First Nations, Inuit and Métis Peoples and communities; and identifies innovative and Indigenous community-based models of care and person-centred approaches to palliative and end-of-life care.

Palliative care is a process from diagnosis to end-of-life in relieving symptoms (pain and discomfort) and for improving the quality of life for people with life-limiting illnesses such as cancer. Palliative care includes physical, emotional, mental and spiritual support and focuses on the whole person and their families. For some First Nations, Inuit and Métis Peoples, families and communities, the term palliative care means comfort care.

End-of-life care focuses on meeting the goals of people within their last hours, days, weeks or months of life. End-of-life care includes supporting their families through the life-limiting illness and after-death and is part of palliative care.

For many First Nations, Inuit and Métis Peoples, their families and communities, dying and death are not only about biomedical and physical processes. It is also about an individual’s transition to the spirit world – a social and spiritual event to be honoured and celebrated as a collective.

As healthcare providers, we have a responsibility to emphasize personhood and dignity in the face of illness, to be with people and hear their stories, and to provide not just physical care for the body, but mental, spiritual and emotional care for the mind, heart and spirit.

– Alexander Kmet, President, Yukon Medical Association

Beginning the journey into the spirit world was created in a way that emphasizes collaboration and models the “nothing about us without us” philosophy. The resource was informed by considerations and shared understandings such as braiding (harmonizing), distinctions-based approach¹, empowerment and validation, person-centred approach, and culture as medicine.

The resource includes examples of promising practices implemented by various organizations across Canada that honour and promote Indigenous perspectives and self-determination. It also includes testimonies and stories from community members such as Mi’kmaw Elder Ella Paul, who shared her experience of losing her husband when she was 25 years old (he was 29).

While my husband was dying, he was surrounded by his family, friends, prayers and traditional medicine. We brought in a traditional Indigenous medicine person who carries out sweats and he brought in traditional medicine. We also had a (non-Indigenous) preacher visit us – he was a good friend of the family.

As my husband was beginning his journey (to the spirit world), it was like somebody just turned down the volume. It was also like I could almost physically see the door that my husband was preparing to go through. I could almost see it. It was like clearer and clearer space. I could almost see him go through that space. But it was like I knew I couldn’t go there.

The next morning, my husband went. It was very peaceful for him but very lonely for me.

– Ella Paul, Mi’kmaw Elder

“[This resource] will be useful for healthcare providers as well,” added Elder Paul. “Sometimes it seems like healthcare providers get so wrapped up in providing care that they forget about the person. Or they are so overworked and burned out that they lose empathy and patience. Healthcare providers and facilities can make a difference in a patient’s palliative care experience by supporting smudging or other cultural practices. It’s so important to be respectful of the person and their family.”

“Beginning the journey into the spirit world was made possible because of the dedicated and generous support of so many contributors,” says Erika Nicholson, Vice-President of Cancer Control at the Partnership. “We are profoundly indebted to them for generously sharing their stories, expertise and wisdom, for their commitment to improving care for First Nations, Inuit and Métis Peoples, and for holding us firmly in our obligation to truth and reconciliation.”

Learn more about Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada.

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_{[1] Acknowledges that each community has a unique culture, territory, history, and relationship with the Government of Canada, as well as unique strengths to build on and challenges to face. A distinction-based+ approach means working independently with First Nations Peoples, Inuit, Métis Peoples and Intersectional Peoples in recognition of their unique attributes. (Source)}