Aboriginal Self-Determination and Institutional Healthcare: Building Trust and Collaboration

Posted By Lauren Hanon

On November 14th, 2014, Justice Gethin Edward delivered a significant judgement concerning constitutionally protected aboriginal rights and family services in Ontario: Hamilton Health Science Corps. v. D.H. In a case concerning the health and wellness of an 11-year-old Haudenosaunee girl, J.J., from the Six Nations Band, Justice Edward recognized the existence of aboriginal and treaty rights in Canada by upholding section 35 of the Constitution Act, 1982,. The girl, J.J., suffered from acute lymphoblastic leukemia (A.L.L.), and was undergoing chemotherapy treatment at McMaster Children’s Hospital for a short time in the month of August, 2014, before her mother withrew her from treatment. J.J.’s mother, D.H., believed that traditional medicinal practices were more suitable treatments for her daughter than chemotherapy. Hamilton Health Sciences disagreed, and filed a claim against J.J.’s parents on the grounds of child protection under the Child and Familly Services Act. They believed that J.J. had a 90-95% chance of being cured with chemotherapy, and that terminating this procedure would put J.J’s life at risk. At court, D.H. and J.J. won the right to forego chemotherapy and practice traditional aboriginal medicine instead.

This case follows that of Makayla Sault, an 11-year-old Ojibwe girl and member of New Credit First Nation in Ontario. Makayla, like J.J., had A.L.L. She decided to stop her chemotherapy treatment in favour of traditional medicine. She passed away in January of 2015.

These two cases are strikingly similar. Many people have attempted to characterize the complexities here as issues between life and death, or, even more crudely, between aboriginal rights and death, which is a terribly simple, paternalistic and colonial way of framing the difficult situation that these girls and their closed ones have to face. Shauna Van Praagh, a law professor at McGill University, suggests that what is needed moving forward is “trust and collaboration.” Van Praagh reframes the question as one of who has rights over the child. The parents of Makayla and J.J., it must be remembered, only wanted the best for their children, and cared and loved them deeply. We cannot assume that the parents were motivated by anything but love and concern for their children. With this in mind, we can see how looking at this problem as a “tug of war over institutional governance of youth well-being” does not acknowledge how we could get to a state of such distrust and disrespect between the parties involved. A question that seems important to explore here is whether the case of J.J. ought to have been a legal question in the first place. Had there been trust and collaboration in the first place, D.H. and the hospital and other actors could have worked together in the best interest of J.J. from the beginning.

Further, according to Lisa Richardson, the Director of the CDC’s Division of Cancer Prevention and Control, and Matthew Stanbrook, a health policy professor at the University of Toronto, the key to building trust is in respect. Imagine what would have happened to J.J. had the court ordered her to be apprehended and forced to undergo chemotherapy, which involves harsh chemicals and the risk of extremely adverse side effects. The common understanding in medical sciences that chemotherapy is the only effective treatment for patients like J.J. contributes to the immense distrust in government institutions that many aboriginal people have, especially in light of the residential schools legacy. Instead of engaging with J.J. and her family as to why they decided to stop the chemotherapy, the hospital determined that the best course of action was to force her into treatment without collaborating with the family in an attempt to agree on a treatment plan that was satisfactory for all parties.

Richardson and Stanbrook highlight key components of traditional aboriginal medicine: “plant-based medicines, culture and ceremony, multiple dimensions of health (physical, emotional, mental, and spiritual), and relationship between healer, patient, community, and environment.” If these values meet your expectations of healthcare, and given the fact that they are not inherently opposed to conventional medical treatment, then respecting and providing for these expectations is just good patient-centered care. When these expectations are dismissed and disrespected, it is easy to see how a person, and even entire communities, could come to distrust a hospital and conventional medicine. A major issue that needs to be solved is how to built trust and collaboration in these circumstances moving forward.

J.J. went into remission from leukemia. However, seven months after J.J.’s initial diagnosis and withdrawal from chemotherapy, the cancer returned. Justice Edward reviewed his initial, ground-breaking judgement at the request of the parties’ lawyers in order to clarify that the child’s best interests must be paramount in all decisions. The judge spoke to J.J., her parents, the lawyers, and healthcare officials separately and modified his original ruling. J.J. and her family had decided that she should return to chemotherapy, in conjunction with traditional medicinal treatments. The hospital treament and the traditional treatments are working together in order to serve J.J., her family, and her community, in the best way possible. This collaboration is a step forward towards building trust between Aboriginal communities and the medical community, and hopefully, we can continue on this path in order to have better and more respectful healthcare for everyone.

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