A Nunavut perspective for the Virtual Hospice website
There is something powerful about moving calmly through the sky and looking down on the Arctic ocean in the springtime, down at the beautiful patchwork of ice pans, in an infinite array of shapes and sizes: one can feel both exceedingly small and ephemeral but also joyful and emotion filled at the wondrous brief adventure that is human life.
I was invited to write about palliative care in Nunavut and it is the magnitude of the land below me and those lovely fractal ice patterns that have moved me to put pen to paper as this great speeding tube of steel takes me home. Writing is part of how I process experiences, and as a physician, narrative allows one to learn from and marvel at the amazing human stories that we are privileged to be a part of. It can also be a healthy tool to minimize vicarious trauma and to grieve.
Nunavut is vast. Geography and different health systems can profoundly affect the choices available to those that live in any of the small arctic hamlets spread across three time zones. For those that feel loved and adequately supported by community health nurses and their own families, staying home, in places such as Kimmirut or Qikiqtarjuaq, will be the choice of many. However, for some Inuit, and others who have made Nunavut their home, being hours by plane from a hospital is excessively anxiety provoking, and for this and so many other reasons, spending last days or weeks in Iqaluit or even in southern Canada is their choice for palliation.
Since most Canadians would choose to die at home if possible, I have been a little surprised to learn that some families might feel a sense of abandonment in being given that option. Through the lens of history, the colonization of the north created health care services that, while extending life often, patching up ills and doing much good, have also dramatically reduced autonomy and created for some, the sense that sickness and dying always require significant institution based care. The Canadian arctic is a place that, not long ago, ships moved through and scooped up over 5000 Inuit for tuberculosis treatment in the south. Many Inuit never saw their families again and, with poorly kept records, lie buried in places forever and day from where they grew up. Today, cancer care in Nunavut still requires almost everyone to get significant amounts of their diagnosis and treatment in southern provinces.
Those who provide and advocate for improving palliative care in Canada will have seen plenty of press coverage in the past year and we hope that families and communities all over Canada, including the north, are picking up on this and having conversations about end of life. It is to be expected that almost every adult has at some point struggled with thinking about what a loved one with a serious illness or near death would want if they were unable to tell us themselves.
It is deeply troubling to learn, from mainstream media, that many Canadians are uncomfortable with thinking and talking about palliative care and end of life. Was it always so? Is this culture based? Perhaps technology and the medicalization of normal human experience, along with reduced autonomy as mentioned earlier, has made death more uncomfortable and built up stigma. Currently, a northern led partnership of community based research in Nunavut is looking at some of these questions with the goal to improving the experiences of Nunavummiut (the people of Nunavut). As a family doctor, the disconnect between oncology and palliative care that I have seen more than once when patients go to southern Canada for care has been one of the most troubling and disappointing failures of care. We are all on this journey. I am young and well, but it is no less important that my advance directives have been written and shared appropriately – which I most certainly have done.
Apart from being born, dying is one of the only other human experiences that is universally shared and a little bit out of our hands. But wherever a person lives, the hands, and hearts and minds, of caregivers can make such a difference to people who are dying and their families. Trust is so essential to relieving anxiety and suffering: trust in the knowledge and skills but so critically also in the compassion and caring.
We should all aspire to giving and receiving culturally safe care. In Nunavut, the dying person and their family ought to feel respect and trust in their relationship with health care providers who are often non-Inuit. This means more than being flexible and responsive, and giving as much agency as one can to families. All Canadians should know about the history of Inuit, First Nations and Métis and how present day relationships in health care are part of reconciliation. There is no one good way to die. As much as we are able, it should be our goal to help people who are dying to create peace, and to alleviate suffering, with a cloak of skillful caring and kindness.