Library and Academic Services: Palliative and End of Life Care: Indigenous Perspectives

Indigenous Perspectives - Introduction

Indigenous Perspectives - End of Life Care

The need for palliative care services for First Nations people is increasing due to an aging population and the high burden of chronic and terminal diseases amongst this population. Many First Nations people want the opportunity to die in the communities where they have lived all of their lives; however people in First Nations communities have limited access to culturally relevant and formalized palliative care programs. Providing equitable access to health services for all Canadians is a compelling social obligation that includes developing accessible palliative care programs for First Nations people.

This page is part of the Indigenous Health and Well-being Guide.

Toolkits & Collections

Canadian Virtual Hospice - Tools for practice - Indigenous Peoples
A collection of tools, training documents, websites, videos and articles about working with indigenous populations in palliative or end of life care.
Improving End-of-Life Care in First Nations Communities
The need for palliative care services for First Nations people is increasing due to an aging population and the high burden of chronic and terminal diseases amongst this population. Many First Nations people want the opportunity to die in the communities where they have lived all of their lives...
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CBC Article about the project
Developing Palliative Care Programs in First Nations Communities: A Workbook an 85-page PDF document accompanied by 83 educational, administrative and program development tools and resources.
Palliative Care Toolkit for Indigenous Communities (Cancer Care Ontario)
This toolkit includes resources and reference material for First Nations, Métis and Inuit families and communities. It can be used to help support people with cancer who have palliative care needs. These education materials can be used by anyone in the community.

Video

Indigenous People (Canadian Virtual Hospice YouTube Playlist)

The Canadian Virtual Hospice provides 19 videos on the various aspects of the end of life from indigenous perspectives.
Topics in this playlist include:

Completing the Circle Healing Words About End of Life Spoken to Aboriginal Families - Part 1 & 2
Aboriginal Traditions Part 1: What Health Providers are Asking; Part 2: Importance of Family and Community; Part 3: Why are there 40 people in the room?
What is Grieving Like for Aboriginal people?
Role of Elders at End of Life
Providing quality care to First Nations: A holistic approach; Gaps in Palliative Care Capacity in First Nations Communities and Improving end of life in First Nation communities; and An innovative model for engaging First Nations in developing community Care Services

Completing the Circle (video series)
Completing the Circle: End of Life Care with Aboriginal Families
In this video, Saskatchewan Elders share their experiences and beliefs about death and dying in the Aboriginal World. They send messages to health care providers that help to create understanding of the end of life health care needs of Aboriginal families when a family or community member is dying. We welcome you into the circle to join the journey through the end of life process.
Other videos in the series include:
* Completing the Circle: Healing Words About End of Life Spoken to Aboriginal Families
* Completing the Circle: Youth and Grieving
* Completing the Circle: Diverse Voices of Protocol and Health
In Our Own Voices: Aboriginal Perspectives on Hospice Palliative Care (Pallium Foundation of Canada YouTube Channel)
A collection of 8 video clips of sociodrama-based scenarios from the Pallium Project's, Aboriginal Relations instructional communications video series entitled, In Our Own Voices: Aboriginal Perspectives on Hospice Palliative Care.
The complete video is available via DVD from the Library.

Papers and Reports

Completing the Circle: End of Life Care with Aboriginal Families (Canadian Virtual Hospice)
Previous research suggests that cultural barriers can discourage ethnic minority patients from using services based on a palliative care philosophy. Palliative care philosophy promotes the idea of a “good death” : a patient-centred approach to relieving symptoms and meeting the goals of terminally-ill people for their end-of- life care1. The research suggests that Aboriginal families in Canada are a group that particularly needs these services. ...
First Nations, Caring for the terminally ill - Honouring the choices of the People (PDF)
This book is designed to support aboriginal people and their caregivers in rural and remote communities living
with life threatening illness.
Indigenous perspectives on death and dying - University of Toronto (PDF)
Describes Aboriginal traditions, as they are practiced today. You will be able to recognize aspects of them, ask about them tactfully, and accommodate them respectfully, if you know some of the basic beliefs and practices. Your sensitivity, degree of empathy, and skill at questioning to retrieve the required answers will determine how well you will interact with the patient and family to provide end-of life-care.
PowerPoint slides to accompany the paper.
Preparing for the Journey - Caring for Indigenous people who are seriously ill - Lakehead University (PDF)
Preparing for the Journey: Caring for Indigenous People who are Seriously Ill is a resource manual to help build and enhance capacity in Indigenous communities to care for community members.
The purpose of this manual is to provide Indigenous health and social care providers, family, and community members with practical guidance and support on caring for people with serious illnesses.
Anderson, M., & Woticky, G. (2018). The End of Life is an Auspicious Opportunity for Healing: Decolonizing Death and Dying for Urban Indigenous People. International Journal of Indigenous Health, 13(2), 48–60.
The majority of Indigenous peoples on Turtle Island (North America) now live in urban settlements, and likely may die in urban spaces. Based upon academic and grey literature searches in 2018 of Indigenous death, dying, grieving, and palliative care in Canada, there is a near absence of information exploring this pivotal life event in the urban context. ...
Bablitz, C., Ahnadzadeh, A., & MacLeod, S. (2018). Dying alone: An Indigenous man’s journey at the end of life. Canadian Family Physician, 64(9), 667–668.
Palliative care is an approach to improving the quality of life for patients with life-threatening illnesses. It focuses on the whole person, including physical, emotional, mental, and spiritual health. There has been a recent focus on the disparity of palliative care resources in underserved areas, including First Nations reserves. This article outlines a case study of an 70 year old indigenous man.
Fruch, V., Monture, L., Prince, H., & Kelley, M. (2016). Coming Home to Die: Six Nations of the Grand River Territory Develops Community-Based Palliative Care. International Journal of Indigenous Health, 11(1), 50–.
This paper describes the development and implementation of a community-based palliative care program in Six Nations of the Grand River Territory, Ontario. Six Nations innovative program is grounded in their vision to provide access to quality palliative care at home and incorporate Haudenosaunee Traditional teachings. ...
Hampton, M., Baydala, A., et al. (2010). Completing the circle: elders speak about end-of-life care with aboriginal families in Canada. Journal of Palliative Care, 26(1), 6–14.
In this article, we share words spoken by Aboriginal elders from Saskatchewan, Canada, in response to the research question, "What would you like non-Aboriginal health care providers to know when providing end-of-life care for Aboriginal families?" Our purpose in publishing these results in a written format is to place information shared by oral tradition in an academic context and to make the information accessible to other researchers. ...
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Despite being a bit older - this article is considered an important inclusion.
Kaufert, J., Putsch, R., & Lavallée, M. (1999). End-of-life decision making among Aboriginal Canadians: interpretation, mediation, and discord in the communication of “bad news.” Journal of Palliative Care, 15(1), 31–38.
This paper examines the problems of interpretive work and cultural mediation in end-of-life decisions among Aboriginal patients in urban hospitals. Alternative link to article
Schill, K., & Caxaj, S. (2019). Cultural safety strategies for rural Indigenous palliative care: a scoping review. BMC Palliative Care, 18(1), 21–13
There is little scholarship on culturally safe approaches to palliative care, especially for rural Indigenous clients. Thus, it is important to articulate how cultural safety can be enacted to support rural Indigenous Peoples and communities at end of life. We sought to identify strategies described in existing literature that have potential to deepen our understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada.
Shahid, S., Taylor, E., Cheetham, S., Woods, J., Aoun, S., & Thompson, S. (2018). Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review. BMC Palliative Care,
Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care.

Library resources

Religious Understandings of a Good Death in Hospice Palliative Care by Howard Coward; Kelli I. Stajduhar (Editor)
Publication Date: 2012
Explores how religious understandings of death are experienced in hospice care.

Chapter 11 --
Kaufert, J.M. (2012). Seeking Physical, Cultural, Ethical, and Spiritual “Safe Space” for a “Good Death”; The Experience of Indigenous Peoples in Accessing Hospice Care. In Religious Understanding of a Good Death in Hospice Palliative Care (pp. 231-255). New York: SUNYPress.
Onigamiising: Seasons of an Ojibwe Year by Linda LeGarde Grover
Location: eBook
In Onigamiising Linda LeGarde Grover accompanies us through this cycle of the seasons, one year in a lifelong journey on the path to Mino Bimaadiziwin, the living of a good life. In fifty short essays, Grover reflects on the spiritual beliefs and everyday practices that carry the Ojibwe through the year and connect them to this northern land of rugged splendor.
The Knowledge Seeker: Embracing Indigenous Spirituality (Cree) by Blair Stonechild
Location: E 99 .C88 S83 2016 (Located at NDC)
Chapter 3: "The Great Principle is that we are spirit beings embarked on a temporary physical journey. As spirit beings, we ultimately seek to find our way back to the spirit world, our true world where we continue our evolution."
In our own voices aboriginal perspectives on hospice palliative care by Pallium Project; Canadian Hospice Palliative Care Association.; Primary Health Care Transition Fund
Location: R 726.8 .I56 2006 (Located at NDC)
An instructional DVD of sociodrama-based scenarios with 11 4-to-8-minute segments. Includes companion teaching points designed to promote critically reflective dialogue about providing quality Hospice Palliative Care within the social and historical context of Canada's Aboriginal peoples.