Who Decides

An eleven year old girl died last week. She died of a stroke. Even in the USA with a population ten times as large as Canada, such cause of death would be unusual (EurekAlert!). However, the cause of her death was not why it was national story.

Makayla Sault was a member of the New Credit First Nation. She first reached national attention when she, after 11 weeks of treatment for her leukemia, asked to be taken off of the invasive procedures. Her parents supported her wishes and the local CAS decided not to pursue the matter further. Ms. Sault's form of cancer, according to doctors, had an 80% survivable rate with treatment (National Post). The family decided to use an alternative form of therapy that included an expensive stay at a Florida clinic and a treatment regime of using "lasers, colon hydrotherapy and a strict diet of raw food and wheat grass" (National Post). The family defended their choice of treatment modalities as being " indigenous remedies".

While I am somewhat cynical about these particular forms of indigenous remedies (given that none of the remedies are indigenous to south western Ontario or any other area, and that the person who runs the Florida clinic sounds like a snake oil salesman), I am fully prepared to believe that there is more than one way to cure a disease. Given how intrusive, disruptive and sometimes unsuccessful the current "cures" are, I understand why people would look for alternatives. We need to have people who have the courage and wisdom to explore alternatives. In spite of the fact that Ms. Sault died, this may have been the right treatment for her. It may be that the mother is right is stating that her daughter died because her system was weakened due to the previous chemotherapy treatments (CBC). We will never know. What I am concerned about is the double standard the medical and child protection agencies are perpetuating.

If Ms. Sault's parents had been members of the Jehovah's Witnesses and had therefore refused to have their daughter be given a potential life saving blood transfusion, the local agencies and the courts would have quickly taken away all parental rights in terms of medical choices. The Supreme Court two decades ago made it clear that a child's medical needs supersede the parent's religious values, and that the medical profession were the appropriate bodies to decide what a child's medical needs (National Post). Five years ago, a court case in Manitoba confirmed the State's right to ignore the wishes of a 14 year old girl who wanted to refuse a transfusion because of her faith (CBC) . So the question that begs to be asked is - why did the medical and child protection system in Ontario not assume control over Ms. Sault's medical treatment? The obvious answer is that because Ms. Sault was a member of a First Nation. A child from any other culture or National group would have remained, rightly or wrongly, in chemotherapy.

In a post modernist society where many citizens accept that the medical profession may not have all (any?) of the answers; in a culture where new, not-scientific medicines flourish just at the boundary between mainstream and alternative life styles, and in a country where we are rightly consumed by the sins of our fathers and are apparently unable to address the consequences of their actions, it is not surprising that we as a collective are inconsistent in our decisions around how to interact or relate to those who are First Nations. It is perhaps equally unsurprising that we are incapable of even acknowledging that our inability to discuss the problem, is in itself, a significant problem.

I do not know what the correct course of treatment should have been for Ms. Sault. I am not sure that an eleven year old girl is fully emotionally competent to make life affecting decisions or that the average Canadian, I am also not sure, no matter how caring they are, that parents are intellectually capable of deciding what the best treatment is, and I am certainly not sure how the courts or the child protection system can possible decide when either the child or the parent should or should not have the control. But regardless of how we decide to make those decisions - we need to ensure that a child's ethnic, cultural or national status does not give them special status or place limits on them.

Oh..... I forgot...that is what is already happening for First Nation children in terms of access to medical attention, education, jobs, housing or support. Maybe we should fix that too.