Makayla Sault’s mother: Racism, trust, and science-based medicine

One of the recurring topics I write about is, of course, cancer quackery. It goes right back to the very beginning of this blog, to my very earliest posts more than 11 years ago. Over the years I’ve covered more cases than I can remember of patients relying on quackery instead of real medicine. In particular, tales of children with highly curable cancers being treated with quackery bother me most of all. Many have been the examples throughout the years: Abraham Cherrix, Katie Wernecke, Chad Jessop, Daniel Hauser, Sarah Hershberger, and teens like Cassandra Callender, who wanted to use quackery instead of medicine to treat their cancer.

Most recently, I was depressed to learn how one of the quackiest quacks that I’ve ever encountered, a man named Brian Clement, who runs the Hippocrates Health Institute in Florida, victimized two aboriginal girls in Canada, one named Makayla Sault and the other only known through court documents as JJ. These two girls came to my attention because of a highly misguided court ruling that JJ’s parents could choose “traditional medicine” over science-based medicine for their daughter’s lymphoblastic leukemia. This ruling was made despite the fact that at the time of the ruling the other First Nations girl whose parents had fallen for Brian Clement’s quackery (Makayla Sault) had already relapsed. Later, Makayla died of her cancer, and JJ relapsed. Fortunately, after JJ’s relapse, her family came to a agreement that allowed her to begin treatment, and Ontario Court Justice Gethin Edward walked back his original ruling that put the rights of indigenous peoples over the welfare of the child. Unfortunately, JJ’s chances of survival were definitely hurt by the lapse in treatment.

It’s now been about a year since Makayla Sault died, and her parents are speaking out. Unfortunately, what they’re saying points to a problem when it comes to dealing with parents like them who are bound and determined to pursue quackery rather than science-based medicine. Over the weekend, there appeared in The Hamilton Spectator an interview with Makayla’s parents entitled ‘We faced a lot of racism’: mom of New Credit girl. As before, Makayla’s mother is blaming chemotherapy for her death:

One year after the death of Makayla Sault, her mother’s only regret is agreeing to treat the 11-year-old New Credit girl’s cancer with chemotherapy at all.

“I regret to this day…ever letting a drop of chemo touch her body,” said Sonya Sault. “It ravaged her body.”

After a year that has “been the hardest to endure,” the pastor is now fighting for the legacy of her daughter, who quit chemotherapy for traditional healing.

Look, I get it. I get it at least as much as a supporter of science-based medicine can. Chemotherapy is hard. It’s toxic. It’s incredibly difficult for parents to watch their child endure the toxicity of chemotherapy. Unfortunately, it’s also the only treatment that had a chance of curing Makayla. It was a good chance, actually, at least 70%. Unfortunately Makayla’s parents don’t see it that way. Her mother clearly thinks that chemotherapy “ravaged her body” to the point of killing her. Remember, Makayla died of a stroke. Now a stroke can be a complication of advanced leukemia. As the white blood cell count skyrockets uncontrollably, the blood can become more viscous, leading to sludging in the blood vessels of the brain. Yet, even though it had been months since Makayla received any chemotherapy, her mother blamed her stroke on it, even though, from what we know, it is entirely plausible that, sadly, a stroke was the terminal event of Makayla’s leukemia a year ago.

Now here’s where things get disturbing. Here’s where we discover how there might have been a possibility, however, small, of keeping Makayla’s treatment science-based:

Sault spoke at a conference at Six Nations Community Hall Nov. 27 aimed at harmonizing traditional healing and the health-care system after a divisive court case over forcing treatment on aboriginal children made it clear there is a deep divide between the two philosophies of care.

“From the very beginning of our time at McMaster, we wanted to use traditional medicines with Makayla and at the start, we were met with a flat out, ‘No. No you can’t use traditional medicines with chemotherapy,'” said Sault. “It angers me because I hear words like caring, respect, dignity and treating the child as a person but yet that was never shown to us. What Makayla said and what she wanted was never heard or respected.”

As much as I hate to criticize the parent of a child who died, given that the death of a child is one of the worst things that any parent can endure, I do have to point out one thing here. Sault is being a bit disingenuous. The quackery to which she subjected her daughter had zero, zip, nada to do with traditional aboriginal medicine. I’ve described his quackery before. He’s a white faux naturopathic quack (which is even worse than being a real naturopathic quack) who’s apparently found a rich source of marks among the First Nations aboriginal people of Ontario. Yet what he does has virtually nothing to do with traditional aboriginal medicine. If you don’t believe me, simply consider the major focus of Brian Clement’s quackery: Wheatgrass enemas. His Hippocrates Health Institute is basically cancer quackery on steroids—white man’s quackery.

That being said, if true this is not acceptable:

“We were completely devastated at the news to think that our daughter had cancer in her body,” said Sault with her husband, pastor Ken Sault, at her side. “Terrified and overwhelmed with the news that we had received, we consented to chemotherapy.”

But once treatment started, “We were never made to feel like we were real people,” she added.

She describes inappropriate comments by staff, the family’s concerns about side-effects being brushed aside and more focus being put on enrolling Makayla in clinical trails than incorporating traditional healing into her care.

“During our time at McMaster, we faced a lot of racism,” said Sault. She recalled one health-care worker, saying,”‘I know all about your people and your kind.’ She talked about the high rates of diabetes, alcoholics and drug addictions and it didn’t even have anything to do with what was going on with Makayla.”

Sault was equally disturbed by the absence of First Nations culture in the hospital.

“We want somebody to talk to,” said Sault. “First Nation social workers working in the hospital, the child-life specialists and it would be so awesome to have a room for First Nations people at the hospital where families can meet and come together and support one another.”

Makayla went through 11 weeks of what was supposed to be two years of chemotherapy before abandoning the treatment.

“She begged us to take her off of the chemo, claiming that it was killing her body and she couldn’t take it anymore and she didn’t want to go that way,” said Sault, who described “agonizing” over what to do. “I want to make it clear that Makyala made the decision. She said, ‘Mom I will never return for chemotherapy. I don’t care if it comes back.'”

Sault said it was only after Makayla decided to quit chemotherapy that the hospital was willing to incorporate traditional healing into her treatment.

“By then, it was too late,” she said. “The damage was already done to her body and she couldn’t continue anymore.”

OK, point one: Makayla was a child. She wasn’t even close to the age where a person is considered competent to make such decisions. It really wasn’t up to Makayla. It was up to her parents, and her mother failed her. Harsh? Yes, but true. The reason parents are trusted with guardianship of their children is because children can’t make decisions as portentous as this by themselves. Of course she didn’t like the chemotherapy! Of course she wanted to stop. The same is true of pretty much any child with cancer undergoing chemotherapy. It doesn’t matter what the child’s race is. What a child undergoing chemotherapy needs is support, encouragement, and parents with a spine. No one ever said it was easy. Watching one’s child suffer is more than many parents can bear. But a wise parent, who keeps her eye on the prize, makes sure her child gets through the necessary chemotherapy.

That being said, if there had been First Nation social workers around, perhaps they could have persuaded the Saults. If there had been more support at the hospital for First Nation peoples, perhaps Makayla’s mother, even given her apparent propensity for woo, might have stayed the course even though her daughter had had enough. If there hadn’t been health care workers at McMaster who were openly racist towards First Nations people, maybe the Saults wouldn’t have become so turned off on and hostile towards “Western” medicine.

As much as some might find it hard to believe, I am not by any means dogmatic. I am a pragmatist. I keep my eye on the prize, which is to save as many lives as possible. If what it takes to keep a child like Makayla Sault receiving her curative chemotherapy in order to save her life is letting the parents also indulge in subjecting her to ineffective treatments with ties to the family’s culture, then, as long as those treatments don’t interfere with effective anticancer treatment, so be it. Let the family bring in their community’s healer and let that healer do whatever it is that he believes will help. As is the case with reiki practitioners, I view this as little different than what pretty much all hospitals do now when they allow chaplains on the premises to see patients and provide comfort and reassurance.

None of this absolves Sonya Sault for having sought out a quack like Brian Clement and having sold him as being “traditional healing” when he is nothing of the sort. Still, it’s hard not to speculate that, had traditional healers been allowed to minister to Makayla and help her get through chemotherapy, it is quite possible that her mother and she might not have been taken in by the blandishments of the charlatan Brian Clement. Had Sault’s mother not been subject to clear racism from health care professionals, maybe trust would not have been so irretrievably broken that mother and daughter embraced a white quack from Florida as “traditional medicine.” Perhaps Makayla might have survived. Indeed, it is clear that there was more than a bit of cluelessness among hospital administrators over what was happening “in the trenches” in their own hospital. While it is quite possible that most of the doctors, nurses, and other health personnel behaved professional, clearly a significant number did not:

Hamilton Health Sciences CEO Rob MacIsaac was on hand to hear the no-holds-barred speech from Sault as well as two other moms who also say they faced racism within McMaster’s walls.

“It was very painful listening to their stories and a great motivation to continue to work hard to make the patient experience better,” MacIsaac said. “I felt it was important for me to hear what the community was saying. There is no substitute for actually coming and listening.”

There is a line, however. If the traditional medicine interferes with existing treatment (and, as far as I can tell, what was being proposed probably didn’t, but I don’t know enough about it to judge), then it would be irresponsible to allow it. More importantly, the hospital must not endorse medicine that science has not validated as though it were science-based. Hospitals allow chaplains in all the time without endorsing any specific religion; again, viewing these healers as similar to chaplains might be a way to overcome this issue. What we do not need is for McMaster Children’s Hospital, for instance, to set up an aboriginal medicine program and start offering it to patients with the imprimatur of the hospital, the way that the Cleveland Clinic offers traditional Chinese medicine to its patients as though it were just another department or specialty, the same as science-based medicine.