My name is Gail Turner, I am an Inuk from Nunatsiavut. I grew up in Labrador and spent most of my nursing career there. Since retirement, I have continued to advocate for Inuit through boards and advisory committees including my current role as Inuit Advisor to the Canadian Partnership Against Cancer.
As nurses, as we age and witness the deaths of patients, family, and friends, we think more about what constitutes good palliative and end-of-life care.
But…before we can advance policy and practice to support the journey home for seriously ill Inuit, we need to distinguish them and their journey as “unique”; who they are, where they live, how they access health care, what they value, their journey to self-determination, their particular challenges and strengths.
For 5000 years, the people and culture known throughout the world as “Eskimo”, now referred to as Inuit have occupied the Arctic from the Chukotka Peninsula in Russia, east across Alaska, Canada to the shores of Greenland.
In Canada, there are 70,000 Inuit, 75% of whom live in the Inuit homeland – Inuit Nunungat – in 51 coastal communities that are all isolated, accessible by air only in winter and air and sea in summer. The remaining 25% called Urban Inuit, live in major cities such as Montreal, Toronto, Ottawa, St. John’s, Winnipeg.
Inuit Nunungat – “the place where Inuit live” – is a geographic and political space largely unknown to most Canadians. It encompasses 40% of Canada’s land mass and 70% of its coastline. More than 1/3 of the communities have less than 500 people.
There are four distinct regions: the Inuvialuit Settlement Region in the Northwest Territory; Nunavut,a territory since 1999 and home to the majority of Inuit; Nunavik in northern Quebec; and Nunatsiavut in northern Labrador, province of Newfoundland and Labrador.
Inuit never had historical treaties with the Crown, never lived on reserve, and for a very brief time only were under the Indian Act. They co-manage the homeland with federal, provincial, and territorial governments through modern, constitutionally-protected land claim agreements.
Inuit Tapiriit Kanatami (ITK) is tasked with protecting and advancing rights and interests of Inuit in Canada. It operates on Inuit values of consensus in decision-making and working together for the common good. All four land claim regions have representation on ITK’s Board, its committees, and sub-committees.
Inuit are resilient, surviving an environment that many consider to be bleak and inhospitable, surviving colonization, forced resettlement, residential schools, dog slaughter, and tuberculosis epidemics. Inuit with tuberculosis epidemics were sent south for treatment, for long periods of time, many never to return, adding to a growing mistrust of the healthcare system and the fear that going south for treatment could mean never coming home again.
Through all of this, and yet deeply impacted by it, Inuit held on to their language, Inuktitut, they changed the map of Canada, altered how government works with Indigenous people, maintained a strong connection to the land, sea, and ice that defines them. Today they are revitalizing language, reclaiming the lost arts of drumming, throat singing, and tattooing, and are wearing sealskin with pride on the catwalks of Paris and New York.
But Inuit face many challenges, and it will take vision, time, and collective effort to create solutions. Inuit want the same as, not more than human rights enjoyed by the majority of Canadians, and yet; cancer is the second leading cause of death, more significant is the fact that it is often diagnosed later leading to poorer outcomes and increased mortality. Cancer care is delivered in a jurisdictional quagmire which challenges effective communication and coordination. There are limited resources and little infrastructure. There are no hospices, few palliative care beds spread out across Nunungat, and medical and pharmaceutical services are limited to the larger communities only, Iqaluit, Inuvik, Rankin Inlet, Kujuuaq. Nunatsiavut depends on services from Happy Valley-Goose Bay, not in the land claim but in the settlement area.
In the Canadian Cancer Strategy, Inuit identify that their top priority is “care closer to home”, the current reality for Inuit is that the chances of not being home when seriously ill are greater than that of any other Canadian. Geography is a determinant of health and access to care depends on where you live in Canada. Supporting the journey home means improving access to care at home.
The real fear of dying away from home means that Inuit sometimes stoically bear pain, not going to the clinic until it is too late or choosing not to complete treatment. Inuit want to die at home, where they lived, with familiar places, language, food, people, sounds, friends, and culture.
Inuit living longer, means more elders being diagnosed with dementia, often later because of the lack of mental health specialists. We have little data on the incidence of dementia in Inuit Nunungat or the impact on community care needs, but we do know that there are not enough long-term care beds and no protective care units. Currently in a facility in Ottawa, Embassy West, there are 70 Inuit from Nunavut. Lori Idlout, an MP, calls this “a type of exile” and it is often debated in the legislature.
From the very few studies on palliative and end-of-life care in Nunavik and Nunavut I learned that community caregiving, sharing of food, respect, providing for family and community are values that have enabled Inuit to survive and are passed down orally and by the way they live. When Inuit were nomadic, before colonization, they would re-organize themselves creating temporary settlements to care for the sick and dying. For them, extended family is an important part of culture, especially at the beginning and end of life.
Home-based care is and will continue to be how palliative care and end-of-life care will be delivered in Inuit Nunungat, given the lack of options, especially in the smaller communities. We need to ask what is working well and build on it. We need to ask what further support including education is needed. We need to rebuild the caring communities of the past.
My mom was palliated by choice, a very practical woman, and a devout Anglican, she had her funeral planned to the last detail. The hymns were especially important and when we would go to funerals together she would say, ”I don’t want that hymn at my service.” On the morning of her death when, as a nurse, I could tell it was imminent, we called for the Anglican minister, a woman she was very fond of. We sang the hymns she had chosen, read the passages selected, and after a closing prayer, she died. The minister was visibly moved and said she had never seen such a peaceful death.
A holistic approach to palliative and end-of-life care includes spirituality. It is a very personal choice, and we need to acknowledge all choices. Statistics Canada tells us that the majority of Inuit in Canada self-identify as Christian, with numbers and denominations varying across Nunungat. Youth are more likely to question faith but, for older Inuit, they find comfort in familiar hymns and passages at the end of life. Inuit are very adaptive. They can have faith in God and still hold on to and celebrate their traditional myths like Sedna as part of their culture. They can accept that Christianity was part of colonization while taking the part of religion that is meaningful to them while leaving the rest. For some, Inuit simply being on the land is spiritual, or eating country food, hearing or being part of throat singing or drumming.
A sharing circle was held in Inuvik in 2021 to talk about cancer in very general terms. One of the takeaways from the meeting was how long it took for Inuit attending to feel comfortable discussing this topic. Building trust was essential. Initiating conversation about palliative and end-of-life care must be done with great care and sensitivity. Talking about such things is not easy for Inuit. For generations they have lived in survival mode; how to stay safe on the land, how to heat the family home and feed the family were and are still for so many of paramount concern.
They are strong, patient, and private. Sharing thoughts about “what may be” is not natural or easy.
Language has to be considered, both the language used and the acceptance that many elders are unilingual. Family and interpreters need the knowledge and skills in these sensitive areas to be the go-between for Inuk patients and the healthcare system.
We know that improving access to mental health services in Inuit Nunungat is a priority. For palliative and end-of-life care it is an essential component. In small communities the nurse/and or home support worker may be related, they certainly know each other well. Death impacts a whole community.
Many Inuit are carrying intergenerational trauma and layers of grief. We need to be very cognizant of this.
Inuit know what works best for them and their community. This is the premise of the Inuit Nunungat Policy adopted in 2022 by ITK and the Government of Canada. It sets out how work is to be done with Inuit, an Inuit-specific approach recognizing the great differences between Inuit and the other Indigenous Peoples of Canada.
We have so much experience, wisdom, and knowledge in this room, over the next two days we need to listen and learn together.
I am humbled and honoured to be here.
Thank you, Merci, Naakumek.
Gail Turner is Inuit and a beneficiary of the Labrador Inuit Land Claim. She retired in 2012 from the position of Director of Health Services for the Nunatsiavut Government, Northern Labrador. She holds a Bachelor of Nursing degree from Memorial University of Newfoundland, a Master’s of Adult Education from St. Francis Xavier University, and many additional certificates in health and administration through distance programs.
Her early career was spent in acute care nursing in Ontario and the United Kingdom. For the last twenty- six years she has been working in Labrador with Inuit, Southern Inuit of NunatuKavut, settlers, and First Nations, and since 2004 exclusively with the Inuit. She has presented on Inuit health at provincial, regional, national, and international meetings, and symposiums, including the World Cancer Congress in 2011.
Her work has been focused on public health, but she has also managed remote community clinics and continuing care. She is passionate about the North and the need for First Nations, Inuit, and Métis to be heard and truly engaged in the planning of their health care and the promotion of optimal health. Her growing interest is in health equity and the pressing need for innovative and community-based solutions for bringing health care services to the people.
Ms. Turner has served as the Indigenous Director on the Board of the Canadian Partnership Against Cancer. She is a recent recipient of the Labradorians of Distinction Award for services to health and community. As a senior, she has a growing interest in senior wellness, access to appropriate home care and long-term care when needed, and aging in place.