- There's a Bug in Your Head
Because I was born, raised, and educated in Toronto, my exposure to First Nations people and cultures was limited to what little attention was paid them by the mainstream media and the educational system. When I became an intern and resident in a downtown hospital, the familiar stereotypes were reinforced by encounters with homeless adult Natives, many with substance abuse problems. I confess to not giving aboriginal issues in medicine and in Canada much thought.
All that changed when I moved to Winnipeg to practice as a pediatric neurosurgeon at Winnipeg Children's Hospital. Winnipeg has a larger aboriginal population than any other major city in Canada, and First Nations people make a significant contribution to its cultural and artistic vibrancy. For the first time in my career, I encountered First Nations children on a daily basis.
One of my new patients was a seven-year-old boy named Timmy. He lived on a remote reserve several hours from Winnipeg, accessible only by air. Timmy had suffered headaches for a few weeks and was starting to develop weakness in his left arm and leg. CT and MRI scans revealed a large cystic tumor in his upper brainstem extending into his right thalamus. Despite his headaches, Timmy was a happy, active child. He spoke Oji-Cree and very little English and seemed to want nothing to do with me until I showed him I could wiggle my nose just like he could.
I met with Timmy's mother to explain the nature of Timmy's brain tumor, propose surgery, and discuss the potential risks and expected recovery time. Parents usually react to a talk like this with a mixture of fear, anger, and grief. They often question why this happened to their child. But for the most part, Timmy's mom seemed unconcerned with these issues. Her questions threw me off guard. They didn't have hot water in their small house on the reserve—could I help them get it? What about an indoor toilet? As a matter of fact, maybe I could write to the authorities and stress that they needed a new house altogether.
My first reaction was disbelief—this woman seemed more concerned about material things than the health of her son. But over the next days and weeks, I began to understand that these were legitimate questions from a woman anxious not just about the welfare of her sick child (though she clearly was deeply worried about this), but also about the welfare of her entire family. Her questions implied a fear of being unable to adequately care for a child who could be quite sick for a long time in conditions where it was hard enough to raise healthy children.
When it came time to officially "get consent" for the proposed surgery, a meeting with the family was arranged. I like to meet with parents and one or two other close relatives or friends (and the child, if he is old enough). I typically refuse requests to meet with large groups of people—I find that too many different people asking questions tends to confuse things. In this case, though, I quickly realized that the process of obtaining consent would not be typical.
When I entered, aunts, uncles, brothers, sisters, and parents crowded the room. An older woman sat in the far corner, saying nothing, but listening intently throughout the encounter. Introductions were made, and I began with my usual description of the clinical picture, proposed intervention, alternatives, risks, and probable outcomes. I was then peppered with questions: Would Timmy be okay? Would he be able to go back to school? Play outside? Fish? Had I ever done this type of surgery before?
I answered as best I could, and then something remarkable happened. Timmy's aunts, uncles, and mother all turned to the older woman in the corner of the room—Timmy's grandmother, who had not yet spoken—and asked, "What should we do?" She paused, then said: "We should go ahead with the surgery." That was it. No more questions—the decision had been made.
Later that day, I told his mother...