A few weeks ago, young Canadian girl who was removed from chemotherapy by her parents, died. She was 11 years old and suffered from acute lymphoblastic leukaemia; her parents, both pastors, removed her from hospital care in favour of alternative treatments, including traditional indigenous forms of care (the family is a member of the New Credit First Nation) and treatment at the Hippocrates Health Centre, a naturopathic therapy centre in Florida. A few weeks following this decision, the family of another girl in the New Credit First Nation also elected to stop chemotherapy for a similar cancer in favour of indigenous medicine and treatment at the Hippocrates Health Centre. In this case, McMaster Children’s Hospital, where she was being treated, filed a court order to get Children’s Aid Society to intervene and bring the girl back into treatment. The court ruled that the hospital cannot force her to return to chemotherapy because the Canadian Constitution protects her family’s right to use traditional indigenous medicine.
The complexity and tragedy of these cases have prompted a number of conversations regarding the role of families in deciding care, the importance of a child’s autonomy in health decisions, and in particular the nuances and potential problems with the concepts of ‘evidence-based medicine’. Evidence-based medicine describes the process of using rigorous scientific research, in combination with physician experience and patient input, to shape clinical decisions. If that sounds like common sense, that’s because at this point it almost is: evidence-based medicine has become a dominant framework for clinical care, and it would be hard to find a physician who doesn’t at least claim to use up-to-date scientific research to guide their practice. The same principles have also begun to be applied to social work and social care, and the program I am in now in grad school is in fact dedicated to applying evidence-based principles to social interventions and policy.
Despite this popularity, the claims that evidence-base medicine makes about what sort of information is necessary for physicians to effectively treat their patients has faced repeated criticism from various voices inside and outside medicine. Most relevant to these cases is the criticism that evidence-based medicine almost by definition establishes a hierarchy of what is considered ‘good’ evidence and what isn’t. Evidence-based medicine is very clear on what sort of research physicians should be looking at and using to guide their practice, and it specifically highlights the use of certain quantitative research techniques, techniques that come from a Western scientific tradition. That’s all great for comparing research on treatments that are operating under this frame, but it gets trickier when this hierarchy is applied to practices that are based on entirely different modes of learning and knowledge. As evidence-based medicine increasingly becomes the default mode for practitioners of Western medicine, that is exactly what’s happening, and the hierarchy of evidence established by evidence-based frameworks has the danger of being used to invalidate and dismiss other, non-dominant modes of thinking.
Which brings us back to Makayla Sault. Many of the responses that I’ve been reading about her case and her death are from aggrieved members of the medical community, comparing the large body of evidence in favour of her chemotherapy treatment with the poor evidence for the treatment her family opted for, and using that to conclude that her family’s decision was at the very least misguided and perhaps even directly responsible for her death. To some degree, this is precisely the sort of judgement that physicians trained in the principles of evidence-based medicine are expected to make: using the best available research evidence to inform decisions about the care of their patients. But how do we know that that evidence even applies, or that these treatments are comparable? To what degree can we say that the evidence for indigenous treatments is ‘poor’, if the way that we understand evidence and knowledge doesn’t necessarily align with these treatments, and if there aren’t even attempts to try to understand them on their own terms? Furthermore, how can we say that the evidence for our treatments is ‘good’ in a given case if the data we’re looking at is coming its own particular context and patient population?
As scientists we know that the results we get are entirely dependent on what outcomes we are trying to measure, and the sorts of techniques we use to do that measurement: what is harder to remember, but just as crucial, is that even what we mean by ‘measurement’ might vary depending on the context of the patient and the treatment we’re observing. Evidence-based medicine, while it has certainly been a useful tool in advancing clinical care, is just that: a tool, not the tool, and physicians need to be mindful of the other frames that they or they patients can draw on in deciding their care.