Beginning the journey into the spirit world

Background

The Canadian Partnership Against Cancer (the Partnership) is the steward of the Canadian Strategy for Cancer Control (the Strategy). The Partnership works to implement the Strategy to reduce the burden of cancer on Canadians.

The Partnership is committed to advancing truth and reconciliation which includes achieving health equity for First Nations, Inuit and Métis Peoples. As a result, the Partnership has been working with partners from across what is now called Canada to further actions on cancer care priorities expressed by First Nations, Inuit and Métis Peoples, their families and communities.

Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada creates a culturally safer[1] space to amplify First Nations, Inuit and Métis voices on

(1) factors that influence First Nations, Inuit and Métis palliative and end-of-life care; and
(2) promising practices in First Nations, Inuit and Métis palliative and end-of-life care.

Specifically, this report

  • 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
  • is strengths-based in identifying innovative and Indigenous community-based models of care and person-centred approaches to palliative and end-of-life care promising practices, resources and strategies.

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. As such, this report is informed by the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) and the Truth and Reconciliation Commission (TRC) of Canada Calls to Action.

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 reference document for readers (health-care providers and professionals, service providers, orders of government and educators) and the Partnership to guide the development and implementation of strategies, programs and resources—supporting the delivery of high-quality culturally congruent palliative and end-of-life care, specific to the priorities and needs of First Nations, Inuit and Métis Peoples, their families and communities.

In particular, knowledge shared in this report can aid readers to adapt, scale and reference strategies, programs and resources that support Indigenous approaches to palliative and end-of-life care.

What are palliative care and end-of-life care?

Palliative care is a process from diagnosis to end-of-life in relieving symptoms (pain and discomfort) and improving the quality of life for people with life-limiting illnesses (for example, cancer, dementia, heart disease, heart failure, HIV/AIDS, kidney failure, liver failure, lung disease, progressive neurological conditions). 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.[1]

End-of-life care focuses on increasing care and 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.

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.

Many factors influence palliative and end-of-life care for Indigenous Peoples.[1], [2] ,[3] Some of these factors are

  • historical factors, for example, history of colonization, intergenerational trauma, health inequities and stigma associated with life-limiting illnesses, dying and death;
  • jurisdictional factors, for example, access to palliative and end-of-life care based on health-care jurisdiction and funding;
  • cross-cultural factors, for example, cultural resiliency and resurgence; connection or reconnection to land, people, family, place, languages and Indigenous spirituality;
  • capacity building factors, for example, development of knowledge, skills and abilities to participate in any or all aspects of decision-making in communities, regions, provinces/territories and the country as a whole; includes program planning and development to implementation and evaluation intended to enhance holistic palliative and end-of-life care; and
  • resource factors, for example, access to the basic needs in life, high-quality health services, resources and supports.

Special considerations in Indigenous approaches to palliative and end-of-life care include Indigenous social determinants of health, medical assistance in dying, pandemic care and death in crisis.

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.

Culture as medicine recognizes the value of relationships in First Nations, Inuit and Métis communities’ cultures and traditions. Indigenous approaches to healing and helping are often linked to land and place through songs, stories, ceremonies, language and writing. As such, land and place are often important dimensions of cultural identity, healing and helping (physical, mental, emotional and spiritual dimensions) for many Indigenous Peoples across Canada.

Also, strengths and ways of knowing are present in First Nations, Inuit and Métis communities in the form of Elders and Knowledge Carriers, Indigenous healers and helpers, community leaders, families and friends who support relational healing and helping.

Relational healing and helping practices in palliative and end-of-life care facilitate healthy ways to experience grief, loss and bereavement. These practices help people and groups to develop a greater sense of connectedness to self, families, friends, community members, communities (as a whole) and Mother Earth, each of which influences how individuals and groups can understand illness, dying, death and loss.

First Nations, Inuit and Métis cultures support resiliency in terms of the ability of people, their families and communities to flourish and adapt to situations and/or environments with minimal negative effects during hardships or crises and/or after a change. From a healing and helping perspective, resilience emphasizes a person’s and/or group’s ability to effectively draw on strengths and capabilities rather than focus on weaknesses or pathologies. [1], [2]

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

Indigenous images

    • Etuaptmumk/two-eyed seeing,
    • trauma-informed care,
    • care across the generations,
    • resilience-informed care, and
    • gender- and 2SLGBTQQIA+[1] -informed care,
    • relationships and allyship.

Palliative care competencies and Indigenous promising practices

Working with partners across Canada, including the Palliative and End-of-life Care National Network and Health Canada, the Partnership developed The Canadian Interdisciplinary Palliative Care Competency Framework in response to the Action Plan on Palliative Care (2019)[4], which called for the development of a pan-Canadian, interdisciplinary palliative care competency framework that documents essential skills, knowledge and abilities for health-care workers.

The Canadian Interdisciplinary Palliative Care Competency Framework outlines a clear and common vision of the minimum standards that people (for example, caregivers, health-care providers) need to demonstrate to deliver high-quality, safe and ethical palliative and end-of-life care programs and services in Canada. There are 12 national palliative and end-of-life care competencies in Canada:

  1. Principles of palliative approach to care
  2. Cultural safety and humility
  3. Communication
  4. Optimizing comfort and quality of life
  5. Care planning and collaborative practice
  6. Last days and hours
  7. Loss, grief and bereavement
  8. Self-care
  9. Professional and ethical practice
  10. Education, evaluation, quality improvement and research
  11. Advocacy
  12. Virtual care

For more information about the palliative care competency framework, visit
https://www.partnershipagainstcancer.ca/topics/palliative-care-competency-framework/background.

To meet the current and future needs in palliative and end-of-life care for First Nations, Inuit and Métis Peoples with life-limiting illnesses, their families and communities, it is important to have a set of nationally-recognized competencies and accompanying promising practices and support tools to recruit, develop and retain a skilled group of helpers (in particular, Indigenous skilled helpers) using Indigenous approaches in palliative and end-of-life care.

These above competencies consist of knowledge, skills and abilities that are considered necessary for helper effectiveness in palliative and end-of-life care which are integral to the learning and development in this important health-care area.

Further engagement with First Nations, Inuit and Métis Peoples, governments, communities and organizations is needed to (1) identify gaps and opportunities in service delivery and (2) inform the development of Indigenous core competencies in palliative and end-of-life care.

Conclusion

As Murray Sinclair[5] stated, “The road we travel is equal in importance to the destination we seek. There are no shortcuts. When it comes to truth and reconciliation we are forced to go the distance.”[6]

As a framework for reconciliation, the implementation of the United Nations Declaration on the Rights of Indigenous Peoples and the Truth and Reconciliation Commission of Canada Calls to Action with Aboriginal title and rights case law positions First Nations, Inuit and Métis Peoples with opportunities to amplify their voices in advocating for and advancing Indigenous approaches to palliative and end-of-life care programs and services across Canada.

Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada is intended for readers

  • who are interested in developing palliative and end-of-life care programs, resources and strategies specific to the priorities and needs of First Nations, Inuit and Métis Peoples, their families and communities;
  • who are interested in applying for funding available through the Partnership on specific needs and priorities of First Nations, Inuit and Métis Peoples relative to palliative and end-of-life care; and
  • who are engaged in or would like to engage in Indigenous approaches to palliative and end-of-life care.

The Partnership will also use this report as a main reference document when funding initiatives to ensure alignment with identified palliative and end-of-life care priorities, needs and promising practices specific to First Nations, Inuit and Métis Peoples, their families and communities.

In closing, we hope to build trust by upholding Indigenous cultural values and worldviews while engaging First Nations, Inuit and Métis Peoples, their families and communities as equals to biomedical research and practice.
Our purpose is to improve informed decision-making and the quality of Indigenous approaches to palliative and end-of-life care.