Biology, Politics

Medicine, the Inside View, and Historical Context

If you don’t live in Southern Ontario or don’t hang out in the skeptic blogosphere, you will probably have never heard the stories I’m going to tell today. There are two of, both about young Ontarian girls. One story has a happier ending than the other.

First is Makayla Sault. She died two years ago, from complications of acute lymphoblastic leukemia. She was 11. Had she completed a full course of chemotherapy, there is a 75% chance that she would be alive today.

She did not complete a full course of chemotherapy.

Instead, after 12-weeks of therapy, she and her parents decided to seek so-called “holistic” treatment at the Hippocrates Health Institute in Florida, as well as traditional indigenous treatments. . This decision killed her. With chemotherapy, she had a good chance of surviving. Without it…

There is no traditional wisdom that offers anything against cancer. There is no diet that can cure cancer. The Hippocrates Health Institute offers services like Vitamin C IV drips, InfraRed Oxygen, and Lymphatic Stimulation. None of these will stop cancer. Against cancer all we have are radiation, chemotherapy, and the surgeon’s knife. We have ingenuity, science, and the blinded trial.

Anyone who tells you otherwise is lying to you. If they are profiting from the treatments they offer, then they are profiting from death as surely as if they were selling tobacco or bombs.

Makayla’s parents were swindled. They paid $18,000 to the Hippocrates Health Institute for treatments that did nothing. There is no epithet I possess suitable to apply to someone who would scam the parents of a young girl with cancer (and by doing so, kill the young girl).

There was another girl (her name is under a publication ban; I only know her by her initials, J.J.) whose parents withdrew her from chemotherapy around the same time as Makayla. She too went to the Hippocrates Health Institute. But when she suffered a relapse of cancer, her parents appear to have fallen out with Hippocrates. They returned to Canada and sought chemotherapy alongside traditional Haudenosaunee medicine. This is the part of the story with a happy ending. The chemotherapy saved J.J.’s life.

When J.J. left chemotherapy, her doctors at McMaster Children’s Hospital [1] sued the Children’s Aid Society of Brant. They wanted the Children’s Aid Society to remove J.J. from her parents so that she could complete her course of treatment. I understand why J.J.’s doctors did this. They knew that without chemotherapy she would die. While merely telling the Children’s Aid Society this fact discharged their legal duty [2], it did not discharge their ethical duty. They sued because the Children’s Aid Society refused to act in what they saw as the best interest of a child; they sued because they found this unconscionable.

The judge denied their lawsuit. He ruled that indigenous Canadians have a charter right to receive traditional medical care if they wish it [3].

Makayla died because she left chemotherapy. J.J. could have died had she and her parents not reversed their decision. But I’m glad the judge didn’t order J.J. back into chemotherapy.

To explain why I’m glad, I first want to talk about the difference between the inside view and the outside view. The inside view is what you get when you search for evidence from your own circumstances and experiences and then apply that to estimate how you will fare on a problem you are facing. The outside view is when you dispassionately look at how people similar to you have fared dealing with similar problems and assume you will fare approximately the same.

Dr. Daniel Kahneman gives the example of a textbook he worked on. After completing two chapters in a year, the team extrapolated and decided it would take them two more years to finish. Daniel asked Seymour (another team member) how long it normally took to write a text book. Surprised, Seymour explained that it normally took seven to ten years all told and that approximately 40% of teams failed. This caused some dismay, but ultimately everyone (including Seymour) decided to preserver (probably believing that they’d be the exception). Eight years later, the textbook was finished. The outside view was dead on.

From the inside view, the doctors were entirely correct to try and demand that J.J. complete her treatment. They were fairly sure that her parents were making a lot of the medical decisions and they didn’t want J.J. to be doomed to die because her parents had fallen for a charlatan.

From an outside view, the doctors were treading on thin ice. If you look at past groups of doctors (or other authority figures), intervening with (they believe) all due benevolence to force health interventions on Indigenous Canadians, you see a chilling litany of abuses.

This puts us in a bind. Chemotherapy doesn’t cease to work because people in the past did terrible things. Just because we have an outside view that suggest dire consequences doesn’t mean science stops working. But our outside view really strongly suggests dire consequences. How could the standard medical treatment lead to worse outcomes?

Let’s brainstorm for a second:

  • J. could have died regardless of chemotherapy. Had there been a court order, this would have further shaken indigenous Canadian faith in the medical establishment.
  • A court order could have undermined the right of minors in Ontario to consent to their own medical care, with far reaching effects on trans youth or teenagers seeking abortions.
  • The Children’s Aid society could have botched the execution of the court order, leading to dramatic footage of a young screaming indigenous girl (with cancer!) being separated from her weeping family. Indigenous Canadians would have been reminded strongly of the Sixties Scoop.
  • There could have been a stand-off when Children’s Aid arrived to collect J.J.. Knowing Canada, this is the sort of thing that could have escalated into something truly ugly, with blockades and an armed standoff with the OPP or the military.

The outside view doesn’t suggest that chemotherapy won’t work. It simply suggests that any decision around forcing indigenous Canadians to receive health care they don’t want is ripe with opportunities for unintended consequences. J.J.’s doctors may have been acting out of a desire to save her life. But they were acting in a way that showed profound ignorance of Canada’s political context and past.

I think this is a weakness of the scientific and medical establishment. They get so caught up on what is true that they forget the context for the truth. We live in a country where we have access to many lifesaving medicines. We also live in a country where many of those medicines were tested on children that had been stolen from their parents and placed in residential schools – tested in ways that spit on the concept of informed consent.

When we are reminded of the crimes committed in the name of science and medicine, it is tempting to say “that wasn’t us; it was those who came before, we are innocent” – to skip to the end of the apologies and reparations and find ourselves forgiven. Tempting and so, so unfair to those who suffered (and still do suffer) because of the actions of some “beneficent” doctors and scientists. Instead of wishing to jump ahead, we should pause and reflect. What things have we done and advocated for that will bring shame on our fields in the future?

Yes, indigenous Canadians sometimes opt out of the formal medical system. So do white hippies. At least indigenous Canadians have a reason. If trips to the hospital occasionally for people that looked like me, I’d be a lot warier of them myself.

Scientists and doctors can’t always rely on the courts and on civil society to save us from ourselves. At some point, we have to start taking responsibility for our own actions. We might even have to stop sneering at post-modernism (something I’ve been guilty of in the past) long enough to take seriously its claim that we have to be careful about how knowledge is constructed.

In the end, the story of J.J., unlike that of Makayla, had a happy ending. Best of all, by ending the way it did, J.J.’s story should act as an example, for the medical system and indigenous Canadians both, on how to achieve good outcomes together.

In the story of Pandora’s Box, all of the pestilence and disease of the world sprung as demons from a cursed box and humanity was doomed to endure them ever more. Well we aren’t doomed forever; modern medicine has begun to put the demons back inside the box. It has accomplished this by following one deceptively simple rule: “do what works”. Now the challenge is to extend what works beyond just the treatments doctors choose. Increasingly important is how diseases are treated. When doctors respect their patients, respect their lived experiences, and respect the historical contexts that might cause patients to be fearful of treatments, they’ll have far more success doing what it is they do best: curing people.

It was an abrogation of duty to go to the courts instead of respectfully dealing with J.J.’s family. It was reckless and it could have put years of careful outreach by other doctors at risk. Sometimes there are things more important than one life. That’s why I’m glad the judge didn’t order J.J. back into chemo.

Footnotes:

[1] I have a lot of fondness for McMaster, having had at least one surgery and many doctors’ appointments there. ^

[2] Doctors have a legal obligation to report any child abuse they see. Under subsection 37(2)e of the Child and Family Services Act (CFSA), this includes “the child requires medical treatment to cure, prevent or alleviate physical harm or suffering, and the child’s parent refuses to consent to treatment”. ^

[3] I’m not actually sure how relevant that is here – Brian Clement is no one’s idea of an expert in Indigenous medicine and it’s not clear that this ruling still sets any sort of precedent, given that the judge later amended his ruling to “make it clear that the interests of the child must be paramount” in cases like this. ^

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