by Barry R. Ashpole: Patshitinikutau Natukunisha Tshishennuat Uitshuau (a place for Innu Elders to spend their last days in life). For the Innu, dying in the community, either at home, in a traditional Innu tent, or “out in the country” is preferred to dying in hospital. The image is by Innu artist Mary Ann Penashue.(12)
Indigenous peoples are disproportionately incarcerated, notably in Australia, Canada, New Zealand, and the U.S.(1,2,3) The statistics make for grim reading.
Culturally sensitive healthcare for Indigenous peoples who are incarcerated is steadily gaining traction in the literature.(4,5,6) Less attention, however, has been given specifically to palliative and end-of-life care for those diagnosed with a terminal illness; research focussed on the Indigenous peoples of Australia, Canada and New Zealand is dominant. There has been limited, if any, research on lesser known Indigenous peoples, for example, the Adivasis of India and the Sámi of Sweden.
No matter from what cultural perspective palliative and end-of-life care is viewed, there remains striking similarities in the observations and conclusions drawn in many reviews of the literature from one country to the next, and from one culture to the next.
This article offers a brief overview of the current thinking.
Indigenous peoples compared to non-Indigenous peoples are over-represented in prison populations. For example, in Australia (2,701 vs 208 persons per 100,000), in Canada (426 vs. 40 persons per 100,000, in New Zealand, where 50.9% of the prison population is Māori (528 per 100,000), seven times higher than the general population, and in the U.S. (763 vs 181 persons per 100,000).
The actual number of Indigenous people who are incarcerated is not fully known. In settler colonial constructs, the systems and ideologies that laid the foundation for settler societies, which displaced Indigenous populations and asserted control over their lands (principally in Australia, Canada, New Zealand and the U.S.), have impeded the official identification of every Indigenous person. This underreporting means the scope of the issue is likely greater than statistics suggest.
Such underreporting also limits the ability of all incarcerated people to access appropriate end-of-life care, and it makes the provision of culturally grounded care for Indigenous individuals even more challenging. Clearly, due to the high numbers of Indigenous peoples incarcerated globally, and that are also aging, a cultural lens needs to be applied to future health capacity-building strategies in prisons, particularly in the context of palliative and end-of-life care.(7)
Current Thinking: Selected Studies
For Indigenous peoples in general, healthcare systems are often viewed as inflexible, narrowly focussed, prejudiced, and traumatising, in particular for those incarcerated and nearing the end of life. In Australian prisons, as an example of a positive outlook, Indigenous Hospital Liaison Officers have proved to be a vital cultural link between patients, families and medical staff in navigating correctional healthcare services, and also an equally important link to outside (i.e., community) resources when sought. They facilitate communication and understanding given firmly held cultural beliefs and needs.
In a study published in 2023, researchers at Melbourne’s St. Vincent’s Hospital identified four “overarching themes” in culturally appropriate end-of-life care for Indigenous peoples who are incarcerated:
1) the intersection of cultures (Indigenous peoples, health and palliative care);
2) the need to bridge the cultural divide (the integral role of Indigenous Hospital Liaison Officers);
3) health professionals delegating their responsibility to provide culturally appropriate care; and
4) the need to work towards a more holistic, cul- turally aware provision of palliative care.8
A more recent study at Queensland University of Technology focussed specifically on decision-making regarding healthcare towards the end of life, pointing to important implications for legal and health professionals, and policymakers. Understanding the cultural, historical, social and health factors influencing end-of-life decision-making with Indigenous peoples can support delivery of health and legal services and systems that are culturally aware, safe and responsive. This can also help reduce existing barriers to ac- cessing palliative and end-of-life care. The authors suggest there may be value in education for Indigenous communities-at-large to support enhanced knowledge and awareness of the law and legal rights at the end-of-life.(9)
The Indigenous peoples of many countries express a common wish for what the Aboriginal peoples of Australia term “to die on Country.” Country, purposely spelt with a capital “C,” refers to the culturally defined homelands of Australia’s Aboriginal peoples and the country’s other, distinct Indigenous peoples, Torres Strait Islanders, for whom “Country” is a complex term, encompassing cultural practices, customs, law, place, language, spiritual beliefs, material sustenance, family and identity all in relation to the lands, waterways and seas to which people are connected.(10)
For the Māori of New Zealand, the role of extended families (whānau) is critical in the care and support as end-of-life approaches. A 2022 study at University of Waikato explored how Māori extended families interpret and enact family-based care roles as they navigate their older relative’s palliative care needs, the family needs, and the formal health and support systems. Such navigation is driven by Māori worldviews, systems, and self-determination in addition to colonization-created disruptions where Māori must negotiate foreign norms, values, practices, and systems.
The authors of the University of Waikato document three culturally centred care roles carried out by whānau members providing palliative care: whānau as
1) holders and protectors of Māori knowledge;
2) weavers of whānau spiritual connection; and,
3) navigators in different worlds.
To discuss these roles, they must be situated within the dynamics of Te Ao Māori. Within Te Ao Māori, the roles facilitate the dying whānau member’s passing from life to death. The roles also facilitate the transition of responses to care needs as they first dawn in world of potential (Te Kore), become (Te Po) and are then enacted in the lived world of light (Te Ao Mārama). The roles also support whānau connectedness that strengthens their capacity to care.(12)
The Innu of Canada have a rich culture that contributes to the health, care, and overall well-being of Innu peoples approaching the end of life. Western medicine is often seen as beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account; for example, the Innu’s strong ties to family, friends, community, home, and the land. When care is provided without regard for the traditional needs of the Innu, then it can do harm. The findings of one study point to ways in which the healthcare system can work with the community to provide culturally safer end-of-life care to the Innu of Sheshatshiu.(11)
Canada’s Healing Lodges
Correctional Service Canada established what is termed “healing lodges,” specifically (but not exclusively) for Indigenous peoples who are incarcerated. They offer culturally appropriate services and programs in a way that incorporates Indigenous values, traditions and beliefs. At a healing lodge, the needs of Indigenous peoples are addressed through teachings and ceremonies, contact with Elders and interaction with nature. Emphasis is placed on spiritual leadership and the value of the life experiences of staff and community members who act as role models.(13)
The origins of healing lodges in the Canadian correctional system can be traced back to the late 1980s, when prison and community advocates proposed the concept of a healing lodge as a way to begin decolonizing the correctional system. Healing lodges are based on the traditional Medicine Wheel and the Four Directions in the Circle of Life – Spiritual (East), Emotional (South), Physical (West) and Mental (North) – guided by the original teachings, ceremony, and instructions. Healing lodges were envisioned as places where Indigenous peoples serving federal sentences could feel safe to heal, on the land, ideally near pure natural running water, with the support from Elders, community, and families. Most importantly, they would be located away from the oppressive and punitive penitentiary environment.(14)
Not an isolated case
Closing this short review of the literature is the personal experience of an associate professor at Universi- ty of Sydney which illustrates the impact and potential consequence of a lack of cultural sensitivity:
I’ve come to know an Aboriginal family whose loved one was diagnosed with a terminal illness in prison. The process for his release was under way, but there were gaps in communications and decisions between prison officials and his family. He was so immobile and frail it was hard to believe he was still ultimately seen as a threat to community safety. He died alone in prison, despite his family having community-based end-of-life care arrangements approved on the traditional Country of his ancestors, according to their protocols. His case notes were minimal, and there was no evidence of cultural care. The autopsy report still causes major confusion and trauma for his family, and they have had no support. The family has lost all trust for governments, who they believe betrayed their own policies about culturally safe care.(15)
There appears to be a serious lack of studies that directly examine end-of-life care for Indigenous prison populations. This absence in itself is telling. There is an urgent need for future research that centers Indigenous voices and experiences in correctional healthcare, which will be explored in Part 2 of this article.
Acknowledgements
For their constructive advice and helpful comments, the author extends his sincere appreciation to Tosha Big Eagle MS, a Legally Liberated Indigenous Scholar and PhD graduate student with the Prevention Science Program at Washington State University; Susan Byrne, community social worker and Vice- President of the Bawaajigewan Aboriginal Community Circle in Ontario; and, Mar’yana Fisher RN, CHPCN(C), PhD(c), Clinical Nurse Specialist, Chronic Conditions & Palliative Care Team with British Co- lumbia’s First Nations Health Authority.
References:
- Anthony, T., Wilson, K. ‘First Nations imprisonment is already at a record high. Unless gov- ernment policy changes, it will only get worse,’ The Conversation (May 2024). https://bit.ly/4lUDup4
- Beaver C. ‘Why are Indigenous people over-incarcerated in Canada?’ TVO Today (June 2024). https://bit.ly/4lU8hm8
- Fox, DL., Hansen, CD, Miller AM. ‘Over-Incarceration of Native Americans: Roots, Inequities, and Solutions,’ Safety & Justice Challenge (January 2023). https://bit.ly/4mFrskH
- ‘The National Review of First Nations Healthcare in Prisons (2023-2024),’ Department of Health & Aged Care, Government of Australia. https://bit.ly/4gqz7Qk
- ‘Help shape the future of high quality, culturally safe, people-centred healthcare and services in federal correctional facilities,’ Health Standards Organization (Canada) (August 2024). https://bit.ly/3yqYjpO
- Moore, A., McCann, J. ‘Healthcare barriers for incarcerated Indigenous populations in the U.S. prison system,’ Weitzman Institute (November 2024). Full text: https://bit.ly/3YQ2Ex5
- Hooper, M., Virdun, C., Phillips, JL. ‘Capacity-building strategies that support correctional and justice health professionals to provide best-evidenced based healthcare for people in prison: A systematic review,’ International Journal for Equity in Health (April 2025). https://bit.ly/4gc3wTS
- Panozzo, S., Bryan, T., Mason, T., et al. ‘Bridging cultures in palliative care: A qualitative study of the care of Indigenous Australians with advanced illness,’ Palliative Medicine, 2023;37(4):498-507. https://bit.ly/3HanhuR
- Neller, P., Feeney, R., White, BP., et al. ‘Australian Indigenous people and treatment decision- making at end-of-life,’ Alternative Law Review, 2024;49(2):104-113. https://bit.ly/3ZFaZ5I
- Carlson, B., Day, M., O’Sullivan S., et al. ‘The Routledge Handbook of Australian Indigenous Peoples and Futures’ (2003): https://bit.ly/3RrIUeM
- Simpson, ML., McAllum, K., Reddy, R. ‘Māori elders’ perspectives of end-of-life family care: Whānau carers as knowledge holders, weavers, and navigators,’ Palliative Care & Social Practice (September 2022). https://bit.ly/3JIhi4m
- Dawe, R., Penashue J., Beneun, MP., et al. ‘Patshitinikutau natukunisha tshishennuat uitshuau (a place for elders to spend their last days in life): A qualitative study about Innu per- spectives on end-of-life care,’ BMC Palliative Care (May 2024). https://bit.ly/4bFk2Ik
- ‘Indigenous Healing Lodges,’ Correctional Service Canada (2024). https://bit.ly/46bkQU4
- Zinger, I. ‘Ten Years since Spirit Matters: A Roadmap for the Reform of Indigenous Correc-
tions in Canada,’ Office of the Correctional Investigator (July 2023). https://bit.ly/3HUJZdS
- Williams M. ‘Comprehensive Indigenous health care in prisons requires federal funding of community-controlled services,’ The Conversation (May 2021). https://bit.ly/42pcgA6
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BARRY R. ASHPOLE is an educator and communications consultant living in Ontario, Canada. Now semi-retired, he has been involved in palliative and end-of-life care since 1985. He established the End of-Life Care Behind Bars website (https://bit.ly/4dU4qmi), an advocacy, teaching and research “tool” to inform and, hopefully, affect a seismic shift in society’s attitudes towards the health and well-being of the incarcerated. Regular postings on the website include annotated listings of current articles, reports, etc., culled from the professional literature, the news media and other sources.
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