The recent death of Makayla Sault, the 11-year old Ontario First Nation girl who refused treatment for acute lymphoblastic leukemia (ALL), has highlighted questions about diversity and cultural competence in health care and when authorities should overrule a pediatric patient’s or family’s wishes regarding potentially life-sustaining treatment.
After 11 weeks of chemotherapy, Makayla and her family decided to discontinue treatment to pursue traditional and alternative therapies, despite the prediction of the girl’s care team at McMaster Children’s Hospital in Hamilton, Ontario that she had a 75-90% chance of survival with chemotherapy.
The hospital referred her case to the Brant Children's Aid Society, who investigated and decided this was a case of health care consent, not child protection. They determined that Makayla was not in need of protection, thus they would not apprehend her in order to continue chemotherapy treatment.
In Canada, a parent has the primary rights of decision-making for a child up to the age of 16. According to Canadian common law, as well as provincial child-welfare statutes, the state has both a right and a responsibility to intervene if a child is abused or neglected, or if a parent fails to provide the necessities of life. In a situation where a family is rejecting medical treatment that would likely save a child's life, Canadian courts have the power to take the decision-making away from the parents and give it to child protection authorities or health-care professionals caring for the child.
Courts will often take into account the wishes of mature children who are deemed "competent minors". However, the Supreme Court has ruled that the more serious the health consequences of a minor rejecting a given treatment, the less weight is given to those wishes.
Historically, courts have often ruled in favour of compelling the family to agree to a prescribed treatment, but this is not always the case. Leniency has been shown in cases where the prescribed treatment has the potential for severe side effects or complications and may not significantly improve the life expectancy of the child.
A recent editorial(1) and numerous follow-up letters(2) in the Canadian Medical Association Journal discuss a similar case in which a health care team referred to court the case of an 11-year old Ontario First Nation girl (“J.J.”) who stopped chemotherapy after 10 days to turn to traditional Aboriginal healing. The case was overturned on the basis that compelling the child to receive chemotherapy treatment would violate the parent’s constitutional rights as an Aboriginal person.
The editorial agrees with this ruling, asserting that there is no inherent conflict between medical science and Aboriginal tradition and that respecting Aboriginal healing traditions - including traditional medicines, healing ceremonies, multiple dimensions of health and relationships between the patient, environment and community – is not political correctness, but patient-centered care. The authors state that Canadian Aboriginal patients face racism, stereotyping, and lack of cultural respect when accessing the health care system. These current experiences, coupled with historical trauma in medical and educational institutions, may lead to distrust of the health care system, which could be further exacerbated by removing Aboriginal children from the care of their parents. The authors assert that fostering health care relationships with Aboriginal patients and families that are based on trust and respect for tradition will prevent having to refer other similar cases to court.
The letters in response to this CMAJ editorial disagree with this assessment, explaining that the ruling refers to a section of the Constitution Act that guarantees the rights of Aboriginal people, interpreted by the judge to include the use of traditional healing and granted to the mother, who would be within her rights to discontinue her own treatment. Yet, since this ruling does not extend traditional rights to giving Aboriginal parents complete authority over their children (i.e. exemption from the possibility of court mandated health care decisions and/or removal from parental care as described above), the mother should not have been granted the authority to discontinue her daughter’s treatment in favour of traditional medicine.
The respondents agree with the editorial that it is important to ensure respect for Aboriginal peoples and cultures and recognize that traditional healing can be complementary to modern medicine. However, they emphasize that this does not imply that the individual beliefs and wishes of an Aboriginal parent should supersede all other considerations in such cases. Further, they stress that it is sometimes essential to access the legal system in order to reconcile conflict when patients, families and health care teams disagree on what is in a pediatric patient’s best interest. These authors worry that the ruling about J.J.’s care sends a message to the Aboriginal community that their children will not receive the same standard of care and protection as other Canadian children.
Some Relevant Ethics Questions
These cases are laden with complex ethics questions, including:
● Who should determine a child's best interest when making health care decisions? Is this influenced by a family's culture or ethnicity?
● Should the constitutional rights of Aboriginal people be interpreted as including the right to decline medical treatment for their children to practice traditional medicine instead?
● To what extent does the historical trauma experienced by Aboriginal communities impact current health care relationships and decisions?
● How should the health care system best foster relationships with Aboriginal patients and communities in order to allow traditional healing practices to complement modern medicine?
● What factors determine if declining a health care treatment for one's child is abuse, neglect or failing to provide the necessities of life? Are there/ should there be different criteria for Aboriginal patients?
● What factors determine if a child is a competent minor?
● Are there limits to "patient-centered care"?
● Are there limits to cultural sensitivity in health care decisions?
● Would the rulings in these cases would have been different if the families involved were not Aboriginal? Should they be?
● What implications do these rulings have for future cases involving difficult decisions related to modern medicine and traditional Aboriginal healing?
1 - Richardson, L. & Stanbrook, M. (January 17, 2015) Caring for Aboriginal patients requires trust and respect, not courtrooms. Canadian Medical Association Journal. http://www.cmaj.ca/content/early/2015/01/26/cmaj.141613
2 – Letters in reply to above article. Canadian Medical Association Journal
In October 2014, representatives from the health districts, IWK, NSHEN and Dalhousie University Department of Bioethics met in Liverpool for a preliminary discussion about ethics in the new Nova Scotia Health Authority (NSHA). As recommended at that meeting, in November and December 2014, each district ethics committee/ service completed an inventory of their structure, membership, activities, strengths, areas for improvement and vision for moving forward under the NSHA. Thank you to everyone who contributed to this valuable assessment. Please contact your district ethics committee or NSHEN to view the results of this inventory.
Using the inventory feedback as a starting point, NSHEN coordinated a meeting on January 22, 2015 in Truro NS with representatives from the DHAs, IWK, NSHEN and Department of Bioethics to develop a set of recommendations regarding how ethics services should be structured and delivered in the NSHA. After a productive day of innovative, reflective, and collaborative planning, the group developed a potential structure for province-wide ethics structures, services, and resources. A proposal has been drafted by this working group and is available to ethics committees for feedback. Once finalized, the proposal will be submitted to the NSHA for consideration.
In collaboration with NSHEN and over 70 participating organizations across Canada, the Canadian Bioethics Society is coordinating the 2nd annual National Health Ethics Week, taking place March 2- 8, 2015.
Many of the participating organizations have made their events available via webcast, telehealth and teleconference, which is a great resource for organizations who were unable to coordinate local events. To view details of the events submitted to the CBS, please visit http://www.bioethics.ca/2015ethicsweekevents (This listing will be updated over the next week as details are provided.)
National Health Ethics Week is a time set aside for health and educational institutions, ethics committees, health care professionals, community organizations, businesses and members of the general public to host and take part in educational events that explore health ethics issues. For more info about the initiative, please visit http://www.bioethics.ca/ethicsweek
In recognition of the 2nd Annual National Health Ethics Week, NSHEN invites you to attend an interactive discussion about the book Being Mortal by Atul Gawande.
Tuesday March 3, 2015, 12 - 1 pm, Room BA-3, Tupper Building, Dalhousie University, 5850 College Street
The discussion will broadly address ethics issues at the end of life, so those who haven’t read the book are encouraged to attend!
Unfortunately, this event is not be available via Telehealth. If you would like to host your own Book Club event to discuss this book, please contact NSHEN for suggested discussion questions.
For more info, please visit http://www.nshen.ca or contact Krista at 902.494.4038 or Krista.MleczkoSkerry@iwk.nshealth.ca
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