Makayla Sault Case Review
“I am writing this letter to tell you that this chemo is killing my body and I cannot take it anymore,” Makayla Sault wrote to her doctors at the McMaster Children’s Hospital in Hamilton.
How could it have come to this? An 11-year old Aboriginal girl, Makayla Sault from New Credit First Nation, who in spite of a promising outcome through treatment with modern medicine, choose to follow traditional medicine, a treatment method unproven to save her life. When we heard Justice Gethin Edward’s decision to allow J.J. to make this very same decision those around me whispered “she’s a dead girl.” What seems to some as heart wrenching is to others an example of holding on to one’s beliefs. As a country that lists in Section 1 of the Charter of Rights; protection of Aboriginal peoples’ rights: freedom to choose care must be protected even when it is against doctor’s orders. Could this situation have been avoided? It is not enough to take Justice Edward’s decision at face value. Behind it resides a careful consideration of historical events and a forecast of the consequences if the girl was forcibly taken by government officers and subjected to treatment. While I am for the doctor’s position seeking ways to continue treatment, there are more appropriate ways to do so than to immediately notify the Child Protection Agency (CPA). More effort must be made in cross-cultural training, especially in Aboriginal populations, since a misunderstanding can cost a child’s life.
In response to Makayla’s decision, the physician in charge notified the CPA. Due to her age, it is reasonable to question her full understanding of the consequences to stop treatment. While this may seem like a reasonable response since forfeiting treatment during induction puts relapse rate at 100% and no traditional medicine exists to counteract cancer or successfully does so, a few other options should have been more seriously considered. Two reasons why contacting CPA was not merited are the issues of neglect on behalf of Makayla’s parents and the historical legacy of taking a child away from a loving Aboriginal family. “Neglect occurs when a parent or caregiver fails to provide a child with basic needs such as… medical treatment… In many cases the caregiver does not intend to be neglectful, but may not be aware of the appropriate care a child requires” (1). However, what was later confirmed by Andrew Koster, Director of Brant Children’s Aid Society was that she was not “a child in need of protection” (2). In fact, it was ruled by the courts that the young girl was living in a loving home and within a supportive community. Furthermore, The Canadian government’s treatment of its Aboriginal people reveals a history of oppression and abuse that a call to CPA would reveal. In the 1840’s the government opened residential schools across the country to assimilate Aboriginal children into western society. It then enforced attendance in 1857 under the Gradual Civilization Act using officers of the state to take children 16 years and under, by force if necessary. Some schools had a mortality rate as high as 30-60% as evaluated by Dr. Peter Bryce from the Department of Indian Affairs in his 1909 report (3). Further tarnishing the government’s name, recently it was revealed that the Canadian government conducted nutritional and medical experiments on Aboriginal infants and adolescents (4). It is examples like these that create distrust of western legal and medical decisions and led to the protection Aboriginal rights within Section 1 of the Charter of Human Right. The extent of this right can be seen when it is contrasted with a 14-year old Jehovah’s Witness, A.C.. In 2008, A.C. was ordered by the court to receive blood transfusion despite her religious belief (5). The judges defended that it was due to “the law’s need to protect the youngest adolescents from their own immaturity and vulnerability,” and provide protection from “subtle and overt coercion” of their belief system, Supreme Court of Canada (5). In contrast, Makayla, who is younger, was not ordered to receive chemotherapy. This example illustrates the dichotomy applied to Aboriginal people but what people often forget is that it reflects a protection of rights that was violated for decades. By ruling against the forced treatment, Justice Edward avoided incident of a family being ripped apart unnecessarily.
Both Makayla and her parents had reasons to stop therapy at the McMaster Children’s Hospital that should be been explored more carefully by the treating physician. Intensive chemotherapy is the first line treatment for acute lymphoblastic leukemia (ALL) in adolescents and holds a cure rate of approximately 80% (6). However, it employs toxic agents meant to kill diseased cells. The aftermath is many healthy-cell casualties. So there is a long list of side effects (7). Treatment complications can be life-threatening and they landed Makayla in the intensive care unit (ICU). After 10 weeks of therapy she requested to terminate treatment with this simple sentence addressed to her doctors at the McMaster Children’s Hospital in Hamilton: “I am writing this letter to tell you that this chemo is killing my body and I cannot take it anymore” (8). It may be easy for doctors to be lured by the high cure rate but complications of ALL treatment such as renal failure, sepsis and bleeding can kill a child before they complete therapy. Makayla’s decision was supported by her parents but motivated in a different way. All the while that Makayla was receiving treatment they were conducting traditional rituals (9). Sonya, Makayla’s mother, noted that during their stay one of the support nurses made a derogatory comment that enraged and convinced her that their rights as Aboriginal people to practice their culture was not met (9). This further fueled her decision to terminate care at the specific hospital and seek care where traditional medicine was not ridiculed. In a 2010 study in Indonesia, “side effects and dissatisfaction with [health care professional],” was the most common cause for chemotherapy abandonment (10). Such was the case for Makayla. Patients need to feel safe. The physician should have taken the time to apologize for the derogatory comment and help create an inclusive environment. Insensitivity can not be tolerated when children’s lives at stake.
As outlined in the Health Care Consent Act, it is up to the doctor proposing the treatment to assess capacity but there are also resources available for supplemental help. Makayla was reported to have said “I know that what I have can kill me but … Jesus came into my room and told me not to be afraid, so if I live or if I die, I am not afraid” (8). Visual hallucinations could be a side effect of her treatment or due to an unexamined underlying cause. In a Finnish study, visual hallucinations were seen in children during induction of chemotherapy (12). If the doctor were to find that she was not competent and her mother was resolute, there are still resources to contact before contacting CPA. The physician could have contacted the hospital ethicist or the Consent and Capacity Board. These are two independent tribunals specialized in assess capacity and consent all the while balancing public health needs. They would be able to provide specialized training in assessing capacity and communicating sensitive material. Instead CPA was notified and as a repercussion the Aboriginal community rebelled. The whole community of New Credit First Nation was ready to create a human barricade to resist the CPA from gaining access (8). As a nation they have not forgotten the history of abuse and also believe in the benefits of traditional medicine, irrespective of its validity in the western community. In my opinion, Justice Edward avoided an uproar in the Aboriginal community when he made his decision. The role of the physician is to seek for the best treatment and advocate when barriers present themselves but through the appropriate channels. Alternative resources could have been employed for Makayla due to the backlash from the Aboriginal community due to the involvement of government officials.
The medico-legal circumstances of Makayla Sault’s care required conflict management with cross-cultural competency. Derogatory comments have no place in the healthcare setting. It pushes patients away and leaves them vulnerable to unvalidated therapy. The physician was right in seeking ways to continue treatment. However, alternative methods could have been applied before contacting CPA. Physicians should be more aware of their resources such as the Consent and Capacity Board to help maintain communication and trust. Furthermore, special programs such as the Indigenous Cultural Competency Training Program could be included in medical education in order to prepare physicians for expectations of Aboriginals using health care (11). Due to the historical legacy and dire state of health amongst Aboriginal communities it is more important than ever that the trust between the medical world and the Aboriginal community be maintained.
- Ontario Association of Child Abuse Socite. [Internet]. Toronto. Available from: http://www.oacas.org/childwelfare/signs.htm
- Walker, C. Makayla Sault will not be apprehended by Children’s Aid, CBC news [Internet]. 2014 May. Available from: http://www.cbc.ca/news/aboriginal/makayla-sault-will-not-be-apprehended-by-children-s-aid-1.2648562
- Bryce, P. The story of a national crime : being an appeal for justice to the Indians of Canada ; the wards of the nation, our allies in the Revolutionary War, our brothers-in-arms in the Great War, Ottawa, Canada. 1922. Available from: http://www.archive.org/stream/storyofnationalc00brycuoft/storyofnationalc00brycuoft_djvu.txt
- Weber, B. Canadian Government Tested TB Vaccine on Natives in 1930s: research. The Canadian Press [Internet]. 2013 Jul. Available from: http://metronews.ca/news/canada/750517/government-tested-tb-vaccine-on-natives-research/
- Girl’s forced blood transfusion didn’t violate rights: top court. CBC.news [Internet]. 2009 Jun. Available from: http://www.cbc.ca/news/canada/girl-s-forced-blood-transfusion-didn-t-violate-rights-top-court-1.858660
- Acute lymphoblastic leukaemia.Pui CH1, Robison LL, Look AT. Lancet. 2008 Mar 22;371(9617):1030-43.
- Rivera, G. et al. Treatment of Acute Lymphoblastic Leukemia: 30 Years’ Experience at St. Jude Children’s Research Hospital. The New England Journal of Medicine. 1993 Oct; 329(18): 1289-5.
- Walker, C. First Nations girl chooses traditional medicine over chemo. CBC.news [Internet]. 2014 May. Available from: http://www.cbc.ca/news/aboriginal/first-nations-girl-chooses-traditional-medicine-over-chemo-1.2644637
- Toronto, Ontario. Indigenous Health Conference. 2014 Nov.
- Sitaresmi, M. et al. Treatment refusal and abandonment in childhood acute lymphoblastic leukemia in Indonesia: an analysis of causes and consequences. Psycho-Oncology. 2009 May;19(4):361-7.
- Provincial Health Services Authority in BC. Indigenous Cultural Competency Training Program Available from: http://www.culturalcompetency.ca/training/ontario
Pihko, H. et al. Transient ischemic cerebral lesions during induction chemotherapy for acute lymphoblastic leukemia. Journal of Pediatrics. 1993 Nov;123(5):718-24.