In the last few blog posts, we analyzed some of the ethical issues surrounding the beginning and end of an individual’s life. We also focused on the concept of decision-making and what happens when an individual cannot openly express their personal wishes. This week, I want to shift focus toward what happens when the wishes of the patient directly oppose the attending physician.
Module 5 of the Health Ethics, Law and Policy course presented at Queens University discusses the cases of two 11-year-old girls named JJ and Makayla. Their stories became highly publicized and provide an excellent case study for how to manage discrepancies between traditional and Western medicine.
JJ was a Mohawk girl diagnosed with acute lymphoblastic leukemia (ALL). ALL is the most common form of childhood cancer and with chemotherapy, JJ’s prognosis was assessed at 90-95%. The hospital’s pediatric oncologists are not collectively aware of any survivors without this treatment. A few days into JJ’s treatment, her mother withdrew consent with the intent to pursue traditional aboriginal medicine.
The pediatric oncologist disagreed with this decision and opted to file a report to the local children’s aid society, Brant Family and Children’s Services. When Children’s Aid chose not to intervene, the hospital filed an application. JJ’s doctor believed that the current situation violated subsection 37(2)e of the Child and Family Services Act:
“the child requires medical treatment to cure, prevent or alleviate physical harm or suffering and the child’s parent or the person having charge of the child does not provide, or refuses or is unavailable or unable to consent to, the treatment.”
As often seen with legal issues that make headlines, both sides were in complete opposition with little common ground to compromise. On the one side, JJ’s mother believed she was making an informed decision about the medical care of her daughter. On the other, JJ’s doctor felt that her family was withholding lifesaving medicine.
This case was brought in front of The Honorable Justice GB Edward and can be read HERE. He dismissed the application on the grounds that it is legally within the rights of JJ’s SDM to pursue traditional medicine as outlined under section 35 of the Constitution Act:
“The existing aboriginal and treaty rights of the aboriginal peoples of Canada are hereby recognized and affirmed.”
The media’s focus on this case was exacerbated as the situation closely paralleled that of Makayla Sault. Similarly aged to JJ, Makayla was a young Ojibwe girl suffering from the same condition. She was being treated with chemotherapy at McMaster’s Children’s Hospital in Hamilton, ON. As the physical and emotional side effects worsened, she asked her parents to discontinue her treatment. Her mother supported her request and sought alternative traditional treatment. Her heartbreaking address to the public can be found on YouTube HERE.
Without previous media precedent, the plight of Makayla wasn’t received as easily as seen with JJ. The controversy surrounding the events are largely due to its presentation by mainstream media. The story being shared with the world caused Makayla’s family so much distress that they felt obligated to share their personal accounts of the events. Their side of the story as reported by CBC can be read HERE.
When disagreements happen, especially ones that are highly publicized, it is important to remember what the “truth” really is. While an objective truth does exist, it’s important to recognize that all individuals see that truth through their own paradigm. We approach situations with the knowledge of our unique experiences and personal biases. It’s quite common for two people to be looking at the same event, but “seeing” it remarkably different.
I believe that Makayla’s situation highlights the need to recognize our epistemological differences when approaching health-related issues. To better illustrate what I mean, we must consider the lenses that both sides are seeing the objective truth through.
Many physicians are extremely selfless and spend years pursuing medical degrees with the goal of helping others. As they commence their journey with the end in mind, they can develop consequentialist paradigms such as the theory of utilitarianism. Utilitarianism is a philosophical standpoint that suggests the morally best course of action is the one that yields the most happiness. Although this may share similarities with the risk-benefit analysis seen in bedside medicine, it is more appropriately applied to populations instead of individuals.
It’s also important to recognize that what may be happiness to one, may not be to another. This theme was seen when we discussed end-of-life care and is applicable to Makayla as well. Although the attending physicians may be focused on the end goal, it’s important to consider the amount of suffering that must be accomplished to achieve this.
Perhaps a deontological stance influenced by Immanuel Kant may be more appropriate. Kant suggested that people should never be treated as a means to an external end, but always respected as individuals with their own interests, values, and goals. Makayla and her family were suffering. Together, they made the decision to end Makayla’s treatment. I can only imagine how difficult a decision this must have been and am confident it’s not one they took lightly. It’s important to recognize that we will never be able to truly see the situation from their perspective.
As members of the Ojibwe community, Makayla’s family was part of a culture older than our country. This culture is full of traditions, values, and beliefs that ultimately influenced their decision. They opted to minimize Makayla’s suffering as they saw this as their version of happiness.
Even though the physicians at McMaster’s Children’s Hospital disagreed with the decision of Makayla’s family, I believe that all parties involved had good intentions in mind. As previously seen with the case of JJ, when conflicts arise regarding health care, it often falls on law and policy to resolve the situation. Unfortunately, Makayla passed away before her case had the opportunity to come to fruition.
The cases of JJ and Makayla provide an excellent case study for the requirement of health law and policy. I believe that Justice Edward made the best decision in advocating for the patient’s autonomy. In Canada, the Health Care Consent Act encourages autonomous decision-making as long as an individual is assessed as capable. Under subsection 4(1), capacity is defined as:
“A person is capable with respect to a treatment, admission to a care facility or a personal assistance service if the person is able to understand the information that is relevant to making a decision about the treatment, admission or personal assistance service, as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.”
JJ, Makayla, and their families experienced chemotherapy and its effects to an extent that gives them a more thorough understanding than most. The seriousness with which these decisions were made and the agreement between the pediatric patients and their respective SDM’s demonstrated that they were not made without consideration of the consequences. To me, this demonstrates that the patient (under their SDM) has sufficient capacity to choose their own medical treatment.
I believe it’s also important to recognize the stigma associated with traditional medicine. To those in favor of Western medicine, the alternative option elected by both girls and their families may seem like lower quality of care. It’s important to recognize that this treatment is extremely different and cannot directly be compared to a treatment like chemotherapy.
In conclusion, Justice Edward acted as a strong advocate for the individual rights of two young girls who could not adequately defend themselves. He recognized that the medical professionals may not have seen the situation from the patient’s paradigm and protected their rights to pursue traditional medicine as outlined in both the Constitution Act and the Health Care Consent Act. Moving forward, we should all strive to consider the reality of others and recognize that what might be best for us is not always best for them.
Michael
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