The Two Row Wampum: "We will not be like Father and Son, but like Brothers. [Our treaties] symbolize two paths or two vessels, travelling down the same river together. One, a birchbark canoe, will be for the Indian People, their laws, their customs, and their ways. The other, a ship, will be for the white people and their laws, their customs, and their ways. We shall each travel the river together, side by side, but in our own boat. Neither of us will make compulsory laws nor interfere in the internal affairs of the other. Neither of us will try to steer the other'svessel."
Last August, while on a course in Massachusetts, I met a Native American elder from the Wampanoag tribe in Aquinnah. We spoke for awhile. He was an artisan and kindly gifted me with a Wampam pendant on a string made of cowhide, and stated it represented strength and respect. I purchased another one for a loved one. He described the Two Row Wampum story, its significance as one of the oldest treaty relationships between European settlers and the Onkwehon: we (original) people, and its importance to the preservation of native ways. I didn't realize this would become a point of debate a few months later -- one that would hit very close to home and which would be particularly important to me.
On November 14, 2014, the medical community and many others were rocked after Judge Gethin Edward ruled that an 11-year old girl from Six Nations named "J.J." was not in "need of protection" from her parents who had opted out of continuing very efficacious chemotherapy for her Acute Lymphoblastic Leukemia (ALL). Citing Section 35 of the Constitution Act, the ruling stated the family had a "right" to pursue their traditional treatment instead. The details of the case are described here and it has been difficult to find published aboriginal perspectives on the issue other than here and here.
This ruling sets an unfortunate precedent by encouraging a two-tier system of medical care for aboriginal children, who already have poor access to the social determinants of health. At this moment the floodgates are open for any parent -- aboriginal or not -- to refuse life-saving treatment on the premise of cultural conflict or personal beliefs. Careful examination of the case does, however, lend itself to addressing the underlying issues that may afford other more meaningful solutions -- for J.J. and any child that comes after her. Because there will be others.
Ethics
First, this case illustrates that ethical duties, some of which have been detailed here, can be in opposition. The physicians carried out their ethical duty of beneficence (doing what's in the best interests of the patient viz-a-viz chemotherapy) and non-maleficience (by preventing harm of opting out of standard care). However, this was held against the ethical duty of autonomy. Autonomy is closely linked to consent and capacity -- both are governed by the Healthcare Consent Act and have to be determined for each healthcare decision. In pediatrics, Substitute Decisions Makers (SDMs) often make these decisions, as outlined in the Substitute Decisions Act. Indeed, it becomes difficult if an SDM halts treatment partway -- the argument that they are incapable or lack the best interests of the patient cannot readily be made if they were deemed capable to consent (and to have her best interests in mind) a priori to halting treatment. As Philip Hebert argues, refusing treatment on personal or cultural grounds cannot alone be a reason to deem someone incapable. The very fact that her parents brought J.J. to the hospital in the first place is some indication that they have her best interests in mind; a similar argument can be made for their earnest decision to seek other options. However, best intentions do not always lead to the best outcome, as this case so clearly elucidates.
Legislation
J.J.'s case illustrates that relevant legislation can be diametrically opposed and this was a case where one lawyer has even argued that there was a "misapplication" of the law. Judge Edward referenced Section 35 of the Constitution Act, a law that while it mentions "culture," is rarely, if ever, used for health purposes. In fact, the cases documented have illustrated that the law has been applied primarily to land rights (R vs. Calder) and fishing rights (R. vs Sparrow). Contrast this law with the pillar of Universality in the Canada Health Act (CHA), an act founded on equity, which governs how healthcare is delivered for both aboriginal and non-aboriginal peoples. The CHA has also been extended to include the Non-Insured Health Benefits for First Nations and Inuit as an attempt to "support First Nations people and Inuit in reaching an overall health status that is comparable with other Canadians." The ruling speaks to the fact that the CHA cannot be enforced, or may even be overruled by Section 35, paving the way for a "two-tiered" system of healthcare which already exists with water and sanitation, income, and education. Indeed, the ruling brings to mind the key principle of "separate is not equal" first described in 1954 and most recently echoed in differences in child welfare funding -- a case currently before the Human Rights Tribunal.
Jordans Principle or the "Child First" legislation is relevant here in that it illustrates a curious parallel with J.J.'s case. Jordan River Anderson, a young aboriginal boy with a neuromuscular condition, ended up being the subject of a government dispute about payment for his care. The dispute was between the federal and provincial government, and he died before it was resolved. In December 2007, the House of Commons presented the "Child First Principle" (or "Jordans Principle") to prevent similar disputes between the federal and provincial government. Similarly, J.J.'s case reminds us that there is a child in the middle of this - her health and well-being should be held above the politics.
Aboriginal History
It goes without saying that J.J.'s case is cloaked in the issue of historic and contemporary injustices -- the term "institutional racism" may be more appropriate -- that have affected aboriginal peoples since Western settlement. Our nation was founded at the expense of immense oppression and attempted cultural genocide towards the aboriginal people -- the residential school systems playing a large role. More recently, the ongoing violence and abduction against aboriginal women, inequitable access to social determinants of health, and the Northern Pipeline project shows there is much more to be done to ensure that aboriginal peoples have the same rights as other Canadians. This is contrasted with a number of recent advances, for instance with aboriginal child welfare , revisiting the use of aboriginal slurs in professional sports, and the potential inherent in the Canadians for a New Partnership declaration.
While there was no overt suggestion that parental custody of J.J. would be revoked, the case proceedings brought many of us back to the history of residential schools, where children were forcibly plucked from their homes and into the hands of Western institutions. Further, the legal proceedings were excessively stressful for the family, which did little to help ease tensions on both sides. Of note, the selective visiting of the Six Nations communities by the Hippocratic Health Institute (HHI) in the months prior to J.J.'s hospital admission, brings to mind missionary-style approaches and manipulation that are historically significant -- this has been overlooked in discussions of the role of HHI in her care, particularly as it has been painted as a model that is more aligned with J.J.'s family's wishes.
Aboriginal Medicine and Healing
The last key issue underlying this case is that of traditional aboriginal healing and medicine -- both are distinct concepts, as healing can encompass much more than remedies for various maladies. Many aboriginal traditions use the medicine wheel -- which often represents the four parts of the person (physical, mental, emotional, spiritual) -- when formulating a treatment plan. While the HHI does not deliver traditional aboriginal medicine, they present themselves as a centre that models a similar "holistic" approach; this is likely why it resonated with J.J.'s family and community.
It's salient to recognize that this may be particularly important in cancer cases. Dr. Tierona Low-Dog, a physician of Native American descent, has cited that patients of Native descent may be diagnosed later and have higher mortality. This might been linked to individual and intergenerational mistrust, poor access to treatment, and dissatisfaction with unclear physician explanations. Indeed, J.J.'s mother did at least once refer to the chemotherapy as "poison," and has since clarified that she will try alternative therapies until she herself sees them to be ineffective. This may speak to difficulty comprehending the course of treatment (and the importance of treating ALL early) and the balance of benefit and side effects.
The unfortunate part is that while it might be argued that some alternative treatments may be helpful in restoring wellness, via an "integrative approach" -- seen in many centres such as the Ottawa Integrative Cancer Centre -- it should never be used as a substitution for conventional treatments that have an excellent risk: benefit profile. Integrative medicine seeks to blend evidence-based conventional treatment with alternative therapy, the latter which often has a role on restoring wellness. In J.J.'s case, an integrative healing approach would be essential -- one that blends chemotherapy (which offers a 90-95 per cent cure rate for ALL) and alternative methods aimed at restoring wellness and building resilience against the side-effects of chemotherapy. This approach may also be better received by her family.
In his book "Coyote Healing" Dr. Lewis Mehl-Madrona, a physician of Native American descent, writes "Healing takes place in the context of relationships and community, which means that what happens in the relationship with the healer matters. The beginning of the treatment establishes the relationship between patient and healer; we create a community of patients and healers. We must then teach the patient that we are there for her, that we will not abuse or explore her and that we hold her best interests at heart."
Indeed, it may be helpful to revisit how the Canadian medical care system can better address the needs of aboriginal patients. The medical education system has taken a step in this regard -- University of Ottawa and University of Toronto are two of many. As J.J.'s case has now been referred to another centre, it is crucial to find ways to re-build the partnership between the family and the providers -- both who are key players in the healthcare team. For instance, involving spiritual care (from their community), involving aboriginal practitioners, discussing any concerns or misconceptions with sensitivity and clear information, offering a chance for the family to speak with aboriginal children and families who had successfully undergone the same treatment, and assessing the comfort level of the care team in incorporating aboriginal healing practices such as smudge ceremonies. These are all key components in J.J.'s care, all of which speak to her case as a unique coalescence of history, tradition, law, medicine, and ethics.
Separate is not equal. In this case separate is not even equitable, as currently J.J. has different access to effective treatment compared to other children in Canada with ALL. This is why placing the "child first" is crucial, and should transcend politics and well-intentioned, but harmful, personal preferences.
Simply put, in this present moment, we have an 11-year-old child with a form of cancer that is curable, and she is at this moment not being treated with the most effective intervention. To quote the famous military commander and warrior of the Sioux nation tribe, Chief Sitting Bull, "Let us put our minds together and see what life we can make for our children."
Indeed it is time for the Two Row Wampum proverbial ship and canoe to come together, place their differences aside and place the child -- aboriginal or not -- first. In this case her life, and those of the many others that will surely follow, depends on it.