Sarah Wiebe discusses the significance of culturally-sensitive care in matters of life and death

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In a video posted to YouTube, the late Makayla Sault read a letter explaining why she declined chemotherapy. In that video, she says that, “This chemo is killing my body and I cannot take it anymore.” Seeing Makayla so full of life in this video is shocking. In Regional Chief of Ontario Stan Beardy’s words, Makayla was “full of spirit and a young warrior who fought her disease on her own terms to the very end.”

My heart goes out to Makayla Sault and her family. I can only imagine how difficult this must be for all those she touched during her eleven years of life. Though I haven’t lost a child, I have held the hands of loved ones struggling to reconcile with cancer and directly witnessed the distress it poses to the mind, body, and soul. Although removed from this immediate situation, Makayla’s story compels me to reflect on and to write about the politics surrounding issues of health, life, and death in Canada.

Last year, Makayla began chemotheraphy to treat her acute lymphoblastic leukemia. After twelve weeks, her family chose to stop that treatment and pursue traditional alternatives. As the widespread media attention and public debate reveal, this action sparked much controversy about the meaning of rights: of the child, of Indigenous peoples and, to the right to choose between life and death.

The events leading up to and following Makayla’s passing raise a fundamental political question: who determines the right to let live and let die? To this day, Western principles and values inform modern politics, which also impact the healthcare field. Makayla’s story powerfully thrusts the private matter of governing one’s body into the public domain. Given the ongoing impact of Residential Schools, Canadians cannot be naïve about the ways in which the disciplinary techniques of these schools sought to sequester and erase the vibrant cultural traditions of an entire population. We should not be shocked when those directly affected by this racist and colonial state policy want to take matters into their own hands.

Moreover, the outpouring of public commentary reveals just how far we have yet to go to obtain culturally-sensitive healthcare that blends diverse knowledge systems and traditions. This is needed to cultivate conditions for health equity. I was reminded of just how far we have to go while recently visiting a dear friend from Aamjiwnaang struggling to receive psychiatric treatment in a healthcare system entrenched with Western values. Unfortunately, this story is one of many disheartening stories involving tensions between Aboriginal and Western values in Canadian healthcare.

Sometimes these tensions find their way to court. Last year, Ontario Court Justice Edward’s controversial and precedent-setting decision ruled that another Aboriginal child, known as J.J., could pursue traditional medicine as an Aboriginal right guaranteed under section 35 of the Canadian Constitution. Similarly, McMaster Children’s Hospital requested that the court intervene on behalf of Makayla. The court’s denial to do so spawned a flurry of public opinions from both academic and medical communities.

We must ask whether the courtroom is the right place to settle such difficult questions. Some say that Makayla died “because she was Aboriginal”. The ethical questions at stake are not just about which body of law – whether Indigenous, provincial or federal – should determine the right to let live or let die. More importantly, this is a matter that interrogates Western assumptions and forces us to evaluate our Western values.

Rather than interpreting Makayla as a helpless victim, we can look at the event as fundamentally political with implications for how we think about agency, choice and freedom. While the issue at play is partially about “rights” – individual or group – it is much more. Significantly, as Canadians with a shared interest in how we live well together on this land, the time is certainly ripe to develop more respectful ways of engaging across diverse health systems. From an approach grounded in respect for treaty relations and aligned with a Two Row Wampum vision of medical ethics, this begins with recognition of and respect for Indigenous healing traditions and practices. We need to be grateful to Makayla, who leaves us with a gift in the form of a much needed conversation about Aboriginal health care and self-determination.

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Sarah Marie Wiebe is a SSHRC Post-Doctoral Fellow and Assistant Teaching Professor in the Department of Political Science at the University of Victoria @smwiebe