Beginning the journey into the spirit world

First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada

Indigenous images

First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada

This resource summarizes factors contributing to First Nations, Inuit and Métis palliative and end-of-life care experiences; identifies 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.

This needs a title

Downloads Roundtable dialogue Full report Conventional cytology Factors influencing First Nations, Inuit and Métis palliative and end-of-life care infographic Promising practices in First Nations, Inuit and Métis palliative and end-of-life care infographic Presentation deck webinar recording
Giving of thanks Overview Shared understandings Indigenous perspectives on palliative and end-of-life care Culture as medicine Braiding Indigenous ways of knowing and biomedical approaches Promising practices

In July 2021, the Canadian Partnership Against Cancer (the Partnership) organized a virtual roundtable discussion with First Nations, Inuit and Métis Elders, Knowledge Carriers, community health professionals and researchers—all of whom have experience and knowledge of Indigenous approaches to palliative and end-of-life care. The objectives of the meeting were to;

  • identify priorities and needs of First Nations, Inuit and Métis Peoples caring for family or community members who require palliative and end-of-life care;
  • identify promising practices in palliative and end-of-life care specific to First Nations, Inuit and Métis Peoples, their families and communities; and
  • discuss opportunities for the Partnership to support and fund self-determined palliative and end-of-life care priorities of First Nations, Inuit and Métis Peoples, their families and communities.

Recommendations from the July 2021 meeting included;

  • gathering information on promising practices in palliative and end-of-life care specific to First Nations, Inuit and Métis Peoples, their families and communities across Canada; and
  • bringing together foundational information on Indigenous approaches to palliative and end-of-life care to foster collaborations and partnerships within and between Indigenous and non-Indigenous organizations to develop programs, resources and strategies in this important field of health care.

In response to the above recommendations, Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada is a foundational background document that readers can adapt, scale and reference in developing strategies, programs and resources that support Indigenous approaches to palliative and end-of-life care. Accompanying this report are infographics and a presentation deck.

Dancing in a circle

Indigenous perspectives and considerations on palliative and end-of-life care

Indigenous Peoples are the fastest growing population in Canada. There is much diversity among First Nations, Inuit and Métis Peoples and communities in languages, lifestyles and teachings. Every Indigenous community across Canada is unique.

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

Culture as medicine

Culture is a complex concept that refers to many aspects of living and being in the world.

Many First Nations, Inuit and Métis communities understand that a way to enhance individual, family and community healing and helping is through culturally congruent practices. When culture is a core component to healing and helping, there are opportunities for programs, policies and broader strategies to honour relationships to land, people and place; Indigenous spirituality and connections with our ancestors; and the role of families, friends and communities.

Braiding Indigenous ways of knowing and biomedical approaches in palliative and end-of-life care

Braiding (or harmonizing) Indigenous and non-Indigenous ways of knowing can be used in a way that is mutually respectful and reciprocal. In this context, braiding palliative and end-of-life care can include

  • Etuaptmumk/two-eyed seeing,
  • trauma-informed care,
  • care across the generations,
  • resilience-informed care, and
  • gender- and 2SLGBTQQIA+ -informed care,
  • relationships and allyship.

Promising practices

There is a need for all health-care providers in various organizational settings across Canada to have both palliative care and cultural safety foundational training as part of their health-care practices and continuous learning. Many organizations have implemented programs to achieve these goals.

Giving of thanks (acknowledgements)

Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada was made possible by a collaboration between the Partnership and an Indigenous management consulting company (Turtle Island Consulti

ng Services Inc.). In addition to this report, other knowledge products (presentation materials and infographics) were developed that recognize diverse learning styles1 that readers can use to find out more about this important topic.

Hand making a heart shape with the sun shining through

All of the knowledge products developed for this project were peer reviewed by individuals with experience and knowledge of palliative and end-of-life care. The peer reviewers represented voices and perspectives from First Nations, Inuit and Métis Peoples and non-Indigenous allies across Canada which reinforces the “braiding” (harmonizing) approach to palliative and end-of-life care that will be further explored in this report.

The peer reviewers ensured that this report and the accompanying knowledge products were timely, relevant, reader friendly, accessible and culturally congruent in nature.

Indigenous approaches to palliative and end-of-life care are for, by and about First Nations, Inuit and Métis Peoples. They are about healing and helping the whole person (physical, mental, emotional, spiritual), not just the physical self.

The Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care knowledge products were created in a way that involved collaboration and modelled the “nothing about us without us” philosophy. Readers are encouraged to develop and implement palliative and end-of-life care programs using our co-development approach.

We thank:

Name
Cara Bablitz, BSc, MD, CCFP (PC)
Don Caverley, MSW, LTCOM
Natasha Caverley, PhD, CCC
Tanya Gadsby, BFA
Tom Spetter, Visual Arts (Dipl)
Madeline Walker, PhD

Heritage
Métis Nation of Alberta
Algonquin/Irish; Whitney and Area Algonquins
Algonquin/Jamaican/Irish; Whitney and Area Algonquins
Māori/Ukrainian/Scottish
Tla-o-qui-aht First Nation
German/English/Mixed European

Name
Deborah Dudgeon, MD, FRCPC
Meaghan Hume, BA, MA
Valerie Kearney, BSc, PMP
Alice Muirhead, BHSc, MHA
Raquel Shaw Moxam, BHSc, MHA

Heritage
Scottish and English
Mixed European
European-Canadian
European; English and Scottish
Jamaican; Canadian

Name
Anonymous reviewers
Marygalak Ashoona Bergin, BA (Psychology)
Alexander Kmet, MD, CCFP (FPA) (PC)
Laura McCormick, PSW
Sherry Metcalfe
Jeffrey Moat, B. Comm, CM
Amy Montour, BScN, MSc, MD, CCFP (PC)
Tanya Nancarrow, MSc
Sophie Pamak, RN, CCHN(C)
Elder Ella Paul
Chrystal Toop, RSSW
Elyse Tratt
Lisa Vaughn, RN, MN
Erica Williams

Heritage

Inuk
Métis Nation of Alberta
Northern European
Inuk; family from Nain, Nunatsiavut
Scottish-Canadian
Haudenosaunee, Six Nations of the Grand River Territory
Cornish/Scottish/Irish
Inuk
Mi’kmaw
Anishinaabekwe, Pikwakanagan First Nation
Canadian of French and Unknown Heritage
Métis Nation of Alberta
Gitxsan Nation

The Partnership also extends gratitude to Indigenous and non-Indigenous health-care organizations; First Nations, Inuit and Métis Elders, Knowledge Carriers; and community health professionals and researchers who have and continue to be committed to collaboration and engagement alongside our organization on the topic of palliative and end-of-life care. The Partnership appreciates their ongoing commitment to advancing timely, accessible and culturally congruent palliative and end-of-life care strategies and resources across Canada.

Thanks for sharing stories, experiences and wisdom with us.

Summary of learnings

Indigenous perspectives and considerations on palliative and end-of-life care create pathways towards truth and reconciliation. These pathways enable topics such as identity (loss, healing and reconnection), government laws and policies and the intergenerational effects of these colonial events to be recognized in relation to access to health care and related services and supports for First Nations, Inuit and Métis Peoples, their families and communities.

Through the recognition of the truth and living history of Indigenous Peoples in Canada, resiliencies and strengths can be honoured and documented. This process can aid calls for action in revising or creating new laws, policies and practices that are culturally congruent to First Nations, Inuit and Métis Peoples and that honour ways of knowing and being in areas such as health and wellness, language and culture.

The truth and reconciliation journey is humbling as Canadians come to terms with the historical impacts of colonization and its intergenerational implications over time. Canada is endeavouring to heal as a country.

It will be important for Indigenous governments and organizations to work with and alongside orders of government to advance Indigenous approaches to palliative and end-of-life care.

As is often the case, the galvanizing of local and regional efforts and actions can create catalysts for provincial/territorial and federal levels of government to hear from citizens about Indigenous approaches to palliative and end-of-life care.

This process can commence a transformative shift in changing perspectives, attitudes and behaviours.

Voices from the field: Calls to action in access to palliative and end-of-life care for Indigenous Peoples in Canada

In discussions with the Partnership, some Indigenous palliative and end-of-life practitioners shared the following concerns and calls to action:

  • There are limitations in the post-secondary education system across Canada, whereby there is limited or no training for emerging health-care professionals to build capacity for providing culturally safer palliative and end-of-life care, including grief and bereavement support.

At the specialist palliative care level, there are too few palliative care physicians with advanced palliative care training across Canada. At a generalist level, studies show that too many graduates of medical and nursing schools (and graduates of other health science schools) enter practice without having core palliative care skills.

  • In general, physicians in Canada are exempt from most of the discussions on access (jurisdiction and funding) to palliative and end-of-life care as they are not included in federally-funded systems and are often excluded in First Nations on-reserve discussions on this topic due to the long standing legacy of the federal government not funding physician services. Furthermore, provinces/territories often have limited input into the practice of physicians except through regulatory colleges and/or where doctors are employed in salaried positions. There is a need to hold physicians accountable for culturally appropriate care provided to Indigenous Peoples. The current state of physician services is not meeting the needs of Indigenous Peoples across Canada, particularly in rural, remote and northern regions of the country.
  • The separation and specialization of work based on biomedical and Western science-based designations (e.g., nurse, medical doctor, social worker, psychologist) is creating unnecessary barriers in access to palliative and end-of-life care as Indigenous Peoples are often unaware of the health-care role differences and are looking for support from whomever is involved.
  • Provincial/territorial home care services and federal home care services are often confusing to people with life-limiting illnesses. In some cases, there are multiple providers overlapping each other with poor communication between health-care agencies. This can be overwhelming for people with life-limiting illnesses and their families. We (as a health-care system) decide who goes into a home. Why is the person with the life-limiting illness and their family not allowed to decide who they want in their home/involved in their palliative and end-of-life care?

We can no longer afford to ignore these realities in our health-care system and post-secondary education system in Canada. If we do not call out these disparities, they will not be addressed.

Therefore, more actions are needed across all orders of government to provide access to equitable palliative and end-of-life care for Indigenous Peoples and associated supports and resources for their families and communities.

[1]Preferred learning styles include visual, written, auditory and multi-modal.

Next: Background