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.

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The human race seems to have a large scale problem with technology transfer in general. The gate keepers of technological or scientific knowledge are sometimes restrictive for one reason or another ( greed, psychopathy, arrogance,racism) , and so knowledge of the benefits of technology are not efficiently transferred to the general population. This leaves fertile voids for woo peddlers of all sorts. And there is a whole spectrum of woo peddling disorders. There are, of course, the wheat grass woo peddlers, but there are also Religiwoos, and the corporate Madison Avenue woo peddlers and their dogmatic supporters who peddle care free and blissful life if you will simply keep purchasing their products.

The current configuration of human society seems to rely on various types of peddling for its economy to run and its gears to turn. The criminals who peddle fake cures are particularly loathsome, but they may not be the worst of the bunch. And expecting the largely uneducated and often intentionally misinformed public to wend their way through the fakes is unrealistic at this stage of human development.

We who think that science and critical analysis are wonderful need to do a much better job of selling them and spreading them around, because the competition from the woo peddlers and undisciplined human "logic" and "common sense" is fierce and is detrimental to all of us.

The hues of racism overshadow this entire case, no question in my mind. The importance of developing trust and confidence toward a patient's concerns of cultural belief, family, economic frailty, to name but a few, need to be at the forefront in order to have a successful treatment plan. Quackademia knows this all too well, and sought to capitalize (again) on a family in distress. The health care CEO saw the systemic failing; hopefully taking corrective measures and build more confidence. After all, the buck does stop with him.

From my environmental blinders, I report on my region having numerous overlapping disease concerns. Overall health is one of the poorest in the country, but the health care teams are cross-trained in not only disease but in cultural awareness. A young mother of three comes to our clinic without much understanding in basic language, an infected tooth, an easy fix; yet, found only the same dismissive attitude. A couple weeks later, suffered permanent brain injury as a complication of sepsis. I can't say how many times I have heard the phrase: "but nobody will help me." To which we respond, that ends today.

Make no mistake, cultural insensitivity is still very much a problem. A symptom borne from systemic apathy and failed leadership that drove this family away from evidence-based medicine that needed it the most. Had they been treated as human beings by the professional health care team, I doubt we'd be reading about this. A disheartening case, but something that we can take as a lesson learned.

I don't expect health care professionals to foster a belief system with me nor do I expect them to interfere with my belief system if as you say, it is benign to my condition and medical treatment. Two sides of the same coin.

Per the other commenters, and I know it is almost impossible in the current US system, compassion goes a long way to mitigate the ability of woo peddlers to influence gullible people. And I think it is a far different approach than the trend towards "patient satisfaction" that is all the rage now.

By Not a Troll (not verified) on 18 Jan 2016 #permalink

It's so sad to think that maybe this child's life could have been saved if there was more cultural sensitivity from her health care providers.

I remember when I diagnosed one of my patients with breast cancer. She very much leaned towards the woo. I sent her to a breast surgeon that I knew would treat her with kid gloves. When my patient requested that there be a "sacred drummer" present in the OR for her mastectomy, the surgeon didn't bat an eye. She did the surgery while the drummer drummed away. The patient had a great outcome.

By NH Primary Care Doc (not verified) on 18 Jan 2016 #permalink

@ Not a Troll

And I think it is a far different approach than the trend towards “patient satisfaction” that is all the rage now.

That's the part which is annoying me in this whole affair, because I cannot see an easy fix.

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.

I'm pained to read about the racist behavior of members of the hospital staff that the family of Makayla Saults encountered. From my little time in Canada, not surprised, but pained nonetheless.
At the same time, it seems that Makayla's family was set on having an alternating therapy from the get-go. I don't see an ethical way to satisfy this wish without letting down Makayla. I mean, we know the sought alt-med is at best useless, at worse detrimental.

So, in fear of being racist, should we go for "patient satisfaction" (or patient's family), even when the demanded action is likely to be useless?
It doesn't help that actual racism was involved in the story.

it would be so awesome to have a room for First Nations people at the hospital

I sincerely cannot decide if this would be actually a good thing. I mean, wouldn't that result in more isolation?

To some extent, it doesn't help either that the sought-after therapy has not much to do with the First Nations' culture. Although the issue could be framed in term of access to alt-med*: had Makayla be white, would it have been easier or more difficult for the family to fly her to Clement's place?

* I know, freedom shouldn't be about the right to do stupid things, especially when the children are the ones taking the consequences. Unfortunately, it's part of the package.

By Helianthus (not verified) on 18 Jan 2016 #permalink

Depressing story. I can't believe the mother would try to play the "but they were mean to us!" card after being directly responsible for her daughter's demise. Her life's greatest mistake, and she learned nothing. I hope she doesn't have other kids.

There is always somebody, regardless of training who will say something stupid within a large organization. Anyone predisposed to be offended will be. Sonya Sault is one of those.

McMaster Children's serves a population base of about 2.3 million people in one of the most ethnically diverse areas to be found anywhere on the planet.

So MarkN @2: Where is your region? and Helianthus @5: Big country - where where in Canada / when?

By Ross Miles (not verified) on 18 Jan 2016 #permalink

I saw that this story had surfaced again in my hometown and the debate is - once again - raging over race and culture. I will go out on a limb once more (fully expecting to be lambasted) that this case was not about race or culture, but about ensuring that the family completely understood the ramifications of refusing conventional treatment in favour of alternative treatment.

McMaster University Medical Centre followed protocol by referring the case to the Children's Aid Society when Makayla refused treatment. This is required as per our "Child and Family Services Act". The Act requires that a child is in need of protection when medical treatment to "... cure, prevent or alleviate physical harm and suffering ..." and that the hospital has a duty, under the terms of the Act, to report/refer the case to the local Children's Aid Society for investigation.

This procedure is followed regardless of race, creed, religion or colour. It wouldn't have mattered if Makayla were First Nations or not, the minute she refused to accept conventional treatment, protocol would have been carefully followed in order to determine whether- or not Kayla was capable of making "informed consent" with regards to her treatment.

Unfortunately, the central issue of this case, which was - indeed - informed consent got all mucked over by political correctness, cultural sensitivity, and racial anger on both sides. While I agree that more sensitivity may need to be developed when it comes to communicating with patients and their families, I do not think that means agreeing with everything the patient wants to do (or not), especially if it is not in their best medical interest. I agree wholehearted that our hospital's must not start welcome alternative medicine as viable treatments without the science to back them up.

My heart goes out to the Sault's; losing a child is horrific under any circumstances.

By Selena Wolf (not verified) on 18 Jan 2016 #permalink

Sure, it's possible that McMaster could have done everything right, with never to be heard a racist word from any of its staff, and the end result ended up the same. There's plenty of blame to go around, including for Makayla's mother and those who encouraged her to believe her taking her daughter to a white quack was somehow an assertion of her people's right to use its traditional medicine rather than an abdication of parental responsibility. The problem is that it's the good of the child that matters most to me. If the price of getting a girl with cancer like Makayla through curative chemotherapy is making some concessions to cultural beliefs, as long as those concessions don't hurt her chances of survival I see little harm in making them.

Really. It's racist to not have a First Nations councilor. We don't have specific East Indian, Asian, African, Pacific islander, or any other specific nationality councilors either. Guess what, they are treated the same way every other non-denominational human being is.

Being the ridiculously PC nation that we are, I have no doubt that someone will come up with a plan to have a First Nation's councilors in all hospitals. Which group(s) will be represented? There are over 100 different first nations groups in Canada. Do we need to have 100 different councilors just for them? Maybe we only provide councilors from the local bands. Why should people travel away from their traditional lands. Oh wait. That would be ridiculously restrictive.
I know as a quarter-breed Crow, I don't have much in common with a Mik mak, Inuit, Cree, or Haida. Are my rights being violated if I don't have a councilor provided to me by the hospital? Not bloody likely. I have external support mechanisms to help me through tough times. I fail to see why these delicate snow-flakes feel they need to be treated differently then the rest of the nation.
I am also curious what the traditional cure for leukemia is. To the best of my knowledge, which is far from comprehensive, it involved watching the person die and trying to keep the pain down with herbs like Willow bark.

P.S. It also really sucks that they got conned by a con-man from Florida.

By Anonymous_Pseudonym (not verified) on 18 Jan 2016 #permalink

I have external support mechanisms to help me through tough times.

In the US at least, I think the modern culture has done much to diminish these supports so more of the need is falling on healthcare entities. Which in general I don't have a problem with as there will always be those who do not have adequate supports. The problem is that the need is far greater than acknowledged and that asking this of healthcare is really missing the point that the greater society should be working on this instead of outsourcing it to medicine....or to woo.

By Not a Troll (not verified) on 18 Jan 2016 #permalink

Having read several articles on this issue by Orac and others (including comments by people who actually live in this area,) I understand that discrimination against First Nations people and culture is a serious and systemic problem in Canada. That being said, I would take anything Mrs. Sault says with an extra-large grain of salt. After all, she had no problem misrepresenting Brian Clement's white-as-rice New Age woo as "traditional medicine," which shows not only general dishonesty but a complete lack of respect for actual First Nations traditions.

For example, she claims that the hospital told her she couldn't use "traditional medicine" along with chemotherapy. She tries to convey the impression that she had some reasonable request that was denied out of sheer racism/lack of cultural sensitivity, but leaves out important info such as exactly what kind of "traditional medicine" she wanted to administer. I agree that if she just wanted a First Nations medicine man/woman to come in and pray, light a candle, hang up a charm, whatever (sorry, I'm obviously not a cultural anthropologist,) then let them do whatever will keep Makayla getting the treatment she needs. But given the context it seems more likely that she wanted to use some sort of herbal medicine and the doctors were justifiably concerned that they could interfere or react with the chemotherapy.
Of course, that's just speculation on my part, because, as always in these sorts of cases, we'll never know what really happened because the parents can say whatever they want to whomever they want, while the hospital is bound by patient privacy laws. I just think that if we're going to castigate the hospital based on Mrs. Sault's testimony it's important to keep in mind that Mrs. Sault has already shown a willingness to lie about her cultural heritage, and I suspect that at this point she'd say just about anything to lay the blame for her actions on someone, anyone else in order to protect herself from the realization that she is largely responsible for her daughter's death.

Orac@9

It is quite safe to assume that McMaster Children's was accommodating and sensitive, with the patient as the primary focus. Rather than assume, McMaster is an easy 3 hour drive or about 200 miles from your institutions, where you could see first hand, this hospital plus the medical school, where they should be interested in a seminar or two provided by you. If possible, take along Dr. Hall as it would also be a productive encounter for her on what is done in the Canadian medical system.

By Ross Miles (not verified) on 18 Jan 2016 #permalink

It wasn't just Makayla's mother, though. There were others at the meeting with similar complaints, so much so that Hamilton Health Sciences CEO Rob MacIsaac took it seriously enough to attend. Sure, it's easy to dismiss Sault because of her misrepresentation of a white quack's New Age woo as somehow being "traditional healing," but her behavior in the past doesn't mean she's wrong about racism in the hospital. I mean, seriously. It might well be that McMaster did everything right, as I mentioned a couple of comments up. However, all it takes is one or two who didn't get the message when it comes to cultural sensitivity or even someone who did get the message who had a bad day and said something he shouldn't have to ruin the work of everyone else. That's one reason why these sorts of cases are so difficult for an institution. It's not as though I haven't seen racism to one degree or another at pretty much every institution where I've ever worked. Wherever there are human beings, you'll find racism. It's impossible not to. The question is what the institution does to minimize its expression and effects.

From the article: "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."

First Nation people represent about 4% of the population so do we build a wing so that every group and orientation is able to have a meet room? Hardly a strong endorsement of community eh.

Yes wherever there are humans, there is going to be some discrimination of some kind or another, but this case is mostly about a failed judicial system to act in a timely fashion and a Children's Aid Society who ducked some essential responsibilities to serve the child well in the absence of reasonable parents who from all information I have seen, were more interested in dictating their own treatment protocol.

By Ross Miles (not verified) on 18 Jan 2016 #permalink

Sarah A, I think your assessment is excellent.
First Nations people in Canada are the objects of horrible racism, though I don't know to what extent it is face to face. The CBC generally does not allow comments on any article on their website if it is about aboriginal matters (there is an
Aboriginal section linked from their News home page). Apparently this is because they get so many really disgusting bigoted comments. There are plenty of serious problems on the reserves with mismanaged money and drug and alcohol abuse. Too many people write them off as beyond hope. Our new prime minister I think sincerely wants to try to right some wrongs and do some good for our First Nations people. I sure hope he succeeds.
I don't know much about what is in use these days in terms of traditional medicines. I suspect it is quite variable by region. Most of my reference materials on native plants have info about past uses of many of the plants by aboriginal people. Certain ceremonial things, like sweetgrass smudging seem fairly common, even to the extent that it has spread to tribes for whom it wasn't a tradition of the past.
I do really wonder how much effort the Sault parents put into getting the resources and concessions they claimed that they wanted and were denied. You will find bigots among doctors and nurses, but, dammit, many of the will bend over backwards to do everything they can, especially for kids, and most especially where lives are at stake. I'm also a bit baffled as to why they apparently didn't look for support from outside of the hospital. I'd be surprised if there wasn't quite a lot available for the asking. I tried a web search for "Calgary aboriginal support" to see what there is around here and got a pile of hits - city, universities, polytech, Boys' & Girls' Clubs, YMCA, and many others, any of which would have people who would jump in with both feet. I would think similar would exist near the McMaster Children's Hospital. Mr. Sault is a pastor - he should have dozens and dozens of contacts. The situation doesn't add up, in my mind.

Indeed.

I also view it as a bit of a straw man to say that what is being asked for are aboriginal "wings" in every hospital, as if what the First Nations people were requesting was totally unreasonable. There's no reason why culturally compatible help can't be "outsourced." What many hospitals do here is to develop relationships with various advocacy and support groups (e.g., for Hispanics, African-Americans, various religious organizations etc.) and then refer patients to them when appropriate.

Absolutely a straw man if I suggested aboriginal "wings". What I am suggesting is if the hospital was to meet the demand from the Six Nation people to be singled out for special treatment, then others would be having the same demand and that would take a wing to accommodate. A hospital facility has to operate with neutrality apart from making people well, so special treatment is a bad idea. In Ontario, in their area, there is plenty of resource available, admittedly in varying competency,

I do not deny that there are real problems which at least approach that of Flint. In lesser populated areas, aboriginal peoples have problems and lack of support which is beyond embarrassing. Imagine a small community under a boil water advisory for 20 plus years, and which has not been corrected by any level of government, and the locals do not have the resource to do it themselves.

In this case, the Sault's have gone from one woo ( Clement ) to another ( chemotherapy, combined with traditional Haudenosaunee medicine ) which did not work out and the Sault's unfortunately cannot accept the realities. from the November article: " The mother is convinced her daughter would have survived the relapse if she'd stuck to treating her exclusively with traditional healing. "I was told she was going to die within six months without medicine, without chemotherapy. She didn't," said her mom. "I wish I had never chosen chemo."" Seems to me to closely parallel the mindset of vaccines cause disease crowd.

By Ross Miles (not verified) on 18 Jan 2016 #permalink

There’s no reason why culturally compatible help can’t be “outsourced.” What many hospitals do here is to develop relationships with various advocacy and support groups...

I see what you did here, and thanks. It made my night.

By Not a Troll (not verified) on 18 Jan 2016 #permalink

I work closely with Australian Aboriginal people, and I think I can add some general points to mull over, that can be very difficult for people in a position of privelege to see. I'm missing all the nuances because it's a blog comment, and it's not an attack on anyone. Just the ways that I still have to be careful even though I've done it for so long.

Traditional practices - this is a really murky area, and most white people take it to mean 'what you did before we came along.' That interpretation is essentially locking indigenous people into a dead end and denying them the chance to develop their culture, which means their only option is replacement and loss. This is what's linked to so many devastating outcomes. A healthy, vibrant culture grows and learns, using new practices to support traditional ideas. This is how the Clements thing could fit in, and there are ways of working with groups to determine how widely accepted a practice is, and when it is destructive trying to find alternative practices that still support the tradition.

Offensive/racist behaviours - you might be totally shocked at what people will find offensive, because you don't have their experiences. We had a situation where a parent was upset that we were singing the national anthem at assemblies. When we dug into the problem, she thought it was racist because it is 'Advance Australia Fair', and she thought 'fair' referred to white people. Easy to dismiss her as ignorant, but a completely logical interpretation given her history. Also something that hadn't occurred to any of us, because we 'knew' what fair meant in this context. And she was confident enough to say something, many people aren't. You have to listen when people say they are offended, not just dismiss them because it doesn't seem a big deal to you.

Neutrality - the idea of a hospital being neutral is incredibly simplistic. Australian indigenous people have completely different ways of using space, where public and private space begins, what can be discussed in different places and with whom. From what I've read, this is true of Canadian people as well. A hospital violates these, it is not a neutral place it is foreign, and comes with a completely different set of rules that they have to negotiate. And let's not even get into the communication protocols, I'm just looking at space as it relates to the idea of a room. For parents already dealing with the trauma of a desperately ill child, wanting to diminish the stress by having a place where they have some familiarity with the social rules and expectations doesn't seem unreasonable.

But there are so many other cultures here! - the fundamental difference is about choice, power and history. Many immigrants have chosen to move, they have done it in a controlled way and developed ways of maintaining the things they valued from their previous culture while embracing advantages of their new place. This is something denied to many indigenous people, who have had networks and knowledge smashed and often been denied the opportunity to build new ones (that's not traditional!). Their experience of government is purposely keeping them at the bottom. I don't think it's unreasonable to say that they require more or different support than other cultural groups, because they are often starting with less support because we destroyed it.

Let's not forget that quackery is also a kind traditional medicine. It has a much longer history than effective and scientific medicine.

By Old Rockin' Dave (not verified) on 19 Jan 2016 #permalink

Deb@20

Yesterday the courthouse in Ottawa was presented with 2 eagle feathers for use in the oath process. "The eagle is a significant spiritual figure in many indigenous cultures, and eagle feathers are considered sacred items that are used in ceremonies. In recent years, courts across Ontario have introduced them to make the legal process more inclusive and culturally relevant to indigenous people." I do not view this as a concession, but simply an accommodation to another set of beliefs, where there is no harm done and great potential to better the system and society in general.

A courthouse is very different from a hospital. Cancers do not care who they kill. This is but one of the life and death examples which are everyday in a hospital. If one is putting on a play, there are any number of rehearsals to get it right. However, if the patient is taking "whatchamacallit" leaf with their chemotherapy protocol and it does not work, there is no going back for a re-do. As Orac has pointed out, the best shot is the first one, plus the question of ethics in the administration of substances with no known benefit. This in part is what these people were asking for.

Years ago I was in favour of "teach the scientific controversy over evolution" which then proved to just be an agenda to advance concepts without any scientific foundation for the "intelligent designers". From learning over time I recognized my error. Having learned the pattern, the inconsistencies of this story tell me that this instance is mostly about advancing an agenda which is not wholly good. To again reference an Orac term , "quackademic" medicine is making inroads, so the simplistic neutrality of keeping it all out is the only way to keep science based medicine. You should not be blinded by doing your good work, that you are not being used to advance an agenda of some, which is not in the best interests of the whole, over time.

By Ross Miles (not verified) on 19 Jan 2016 #permalink

@Ross
I'm not arguing for any sort of diminution of science-based medicine or interfering with treatment. What I'm saying is that telling someone else what should be allowed to count as traditional is an inherently racist act and will put up a barrier.

Obviously wheat grass enemas were not happening a few hundred years ago, but there is some connection that has led the Saults to identify them as traditional. It could be a physical similarity, a spiritual similarity, or even that the quack is a good listener and treats them in the way a healer would have. It's filling a role that was important. By investigating what that role is, you may be able to find a way to fill it that won't interfere with the science-based treatment. Having access to a counsellor or helper who can do that is probably a lot more cost effective than taking cases to court.

Clements is a quack, but he's successfully sold something to the Saults. Finding out how he did that, what he appealed to and how he framed it, will help make the hospital more welcoming and therefore successful. Just because the connection is not obvious to you doesn't mean it isn't there for someone with a completely different world view. There is no need for a quack if you are meeting those needs yourself, but you can't if you don't know what they are or are dismissing them.

@Deb #20 & @23

Excellent posts.

While I still disagree (rather vehemently) with the choices the Saults made for their daughter, your explanation of what may or may not constitute traditional and, more importantly, why it shouldn't be up to the dominant culture to determine that for another is very eye-opening.

...a kind of traditional medicine...

By Old Rockin' Dave (not verified) on 19 Jan 2016 #permalink

Here in Calgary we have four general hospitals and a children's hospital. The Alberta Children's Hospital (see Wikipedia for more info) serves all of southern Alberta and parts of BC and Saskatchewan. I can assert with absolute certainty that every one of those hospitals has treated many, many First Nations people (there are about 49 First Nations in the province).
If McMaster needs advice on sensitivity to First Nations people, they'd do well by sending someone to Calgary to talk to the staff at our hospitals. In my opinion, trying to figure out what that disgusting schmuck Clements is offering is a waste of time. I seriously doubt McMaster needs a lot of input. I think they had a couple of cases, the second inspired by the first, that put them in no-win positions.

I should add that Canada's aboriginal people are very diverse with a wide diversity of old traditions.

It's the real quacks out there that are duping people to make a buck in scams that make us quacks who actually know the truth behind the cancer look bad.

But yeah! Those Quackers! Practicing their quackery for a thousands of quackin' years! Definitely don't know what they're talkin about.

Maybe if you say quackery a few more times it will hammer in the fact that the only way to treat cancer is surgery, chemo and radiation. Yeah, nutrition has no affect whatsoever.

Obviously wheat grass enemas were not happening a few hundred years ago, but there is some connection that has led the Saults to identify them as traditional.

Does this also go for Mormons and MLM predation?

Parents (devastated by their child's diagnosis, in a potentially threatening or scary environment): "We' re doing chemotherapy, but we want to try (some quack thing) traditional healing as well."

Doctor: "I don't know enough about that to know how it could affect treatment. Can we bring in someone from (local consultancy group with links to the relevant indigenous group) so they can help us work out a plan that will meet all (child's) needs?"

I don't get why that is difficult, especially when the alternative is legal action over the guardianship of the child. And yes, an appropriate group will exist - I am in a much sparser area with dozens of different Aboriginal groups, and there are a range of private and NGOs that fill that role.

I don't get the links to Mormons and MLM - if they are being conned regularly and there is a group trying to help them develop more adaptive behaviours, working with the church hierarchy to find out why would be useful. If they are the perpetrators then go after them as hard as you can - nowhere have I said we should support the quacks, I keep saying we should look for reasons why patients have been taken in.

The quackery to which she subjected her daughter had zero, zip, nada to do with traditional aboriginal medicine.

The various IHS hospitals, and the the large urban hospitals in the Southwest have no problem merging the use of various tribal traditional rituals with modern medicine.

But that center in Florida was running pure modern quackery, using things that did not exist in any tribal culture before the arrival of the late 20th century quacks.

By Tsu Dho Nimh (not verified) on 19 Jan 2016 #permalink

One last try.

So according to you, dot paintings, the most well known Aboriginal art to come out of Australia, is not part of Aboriginal culture. Kimberley points? Nope, get rid of them they're just coke bottles. And better tell those Torres Strait Islanders that they need to go back to using grass for their ceremonial outfits, plastic bags that honour the colours of their flags didn't exist. They can't honour flags anyway, that's not traditional.

No, wheat grass enemas were not happening before Clements came along. But for all we know, traditionally, people with one blue eye and one brown eye were gifted healers, and Clements conned them using contact lenses. It's a ridiculous example to try to explain that just because you can't see the connection to tradition, doesn't mean it isn't there in their eyes. And they are the ones who get to define their culture, not you.

Maybe they were cynically using the 'traditional' argument to force the courts to allow the quackery they wanted. But based on what we know, that's a really big call.

@Deb #20 & #23

I concur with Meg #24. Your posts got me food for thought.

@ Tsu Dho Nimh

The various IHS hospitals, and the the large urban hospitals in the Southwest have no problem merging the use of various tribal traditional rituals with modern medicine.

Ah, but that's part of the issue. "Traditional medicine" is part of "traditional rituals", but the converse is not true.

So, on the traditional rituals:
We of the mainstream culture usually have the possibility to ask for a spiritual counselor to come and visit us by our sickbed, and many hospitals usually have some little chapel on the premises. In this context, my opinion evolved and I'm not finding anymore that far-fetched that people from First Nations would like someone of their culture to consult with, and a dedicated room somewhere in the hospitals servicing their communities.
Having someone saying prayers, making offerings or whatever the surgeon doesn't find too disruptive, in the surgery room while the patient is being treated is a bit more forward, but if both the surgeon and the patient are OK with it, who am I to tell them otherwise?

Now, the traditional medicine part:
When that is asked is to add to or replace that we propose as treatment by something judged more traditional by the patient, I have more trouble accepting it, because that is proposed by mainstream medicine is (ideally) based on some evidence, while the other is not.
I want to scream that "our" method is right, not because I'm a white man, but because I truly believe that if anyone from any culture or shape was to test the treatment in a rigorous fashion, they will arrive at the same conclusion.

The trick, of course, is to distinguish between rituals and medicine. In many, if not all cultures, including mainstream ones, for the layman, there is no distinction.
It looks like a bit of an impasse, isn't it?

@ Deb

they are the ones who get to define their culture, not you.

That's what I retained of your post #20.

By Helianthus (not verified) on 20 Jan 2016 #permalink

I keep coming back to this because I keep looking at that little girl's face. She was here and now she's not and there's a strong possibility she could have lived on to go to a school dance, wear blue eyeliner, tell her Mom she hates her, go on a date, meet a teacher who changes her life...

We have a friend whose daughter was diagnosed with neuroblastoma at 19 months old. My friend and I were pregnant at the same time, this little girl is the same age as my daughter. I won't describe here what that child has had to endure via surgery and chemo (and the veritable destruction of her gastro system in the process), or what her parents had to witness, but I will say that she and Delphinette spent a not-insignificant amount of time this Christmas discussing plans for their joint princess-themed birthday party this spring. She is cancer-free, and I wish Makayla was here to plan her own birthday party.

First thing I did this morning was email Joanna Frketich who is the reporter with the Hamilton Spectator who wrote the story. I invited her to comment and hopefully she will have some input.

Will be back soonest to comment to Deb and others when time permits

By Ross Miles (not verified) on 20 Jan 2016 #permalink

Just wanted to lend my support to everything Deb says.

Here is a link to the National Aboriginal and Torres Strait Islander Cancer Framework: https://canceraustralia.gov.au/publications-and-resources/cancer-austra…

There's a similar policy document for many areas of health care and you can usually get professional development points for going to a workshop about them when they get reviewed from time to time.

You don't need to have a special place or person for every possible indigenous culture, just an aboriginal social worker or nurse trained in the specific and general issues facing indigenous patients who can become a powerful advocate and guide to the service and process.

Aboriginal culture is not always as well organised as European culture. When Gran gets diagnosed Uncle knows to contact the priest who pays her a visit and encourages her to work with the doctors and prays with her. When Aboriginal people are diagnosed with cancer they may feel lost and alone, there's no obvious point of contact.

In Australia, you can identify as Aboriginal or Torres Strait Islander (or both or neither) when you arrive at hospital and your care team can offer you cultural support.

Unfortunately indigenous Australians are well below the 4% you've got in Canada and far below 1% in my area so I don't have any direct experience with indigenous friends having gone through this process. But I know we try and I know we can still do much better.

I know that this is already understood but I am saying it anyway. Medicine is not white. Medicine exists with input from multiple ethnicities. To state that (groan) "white" (which white people? The Irish? The Dutch? Russian? Polish? All differnet ethnicities with different beliefs and customs)) people are in charge of and the origin of medicine is a gross over simplification and is a primary tool used by leeches like Brian Clement to continue their scams. Layering po mo social "sciences" nonsense on cases like this just allows those responsible for the deaths abdication of responsibility. Maybe we should all focus on learning something from this. I grew up around natives and they were the ones who warned me against traditional healing as very often the traditional healing was simply dying.

@16

"I’m also a bit baffled as to why they apparently didn’t look for support from outside of the hospital. I’d be surprised if there wasn’t quite a lot available for the asking."

Yes, there are, actually, quite a lot of local programmes that the Sault's would have had access to.

http://www.hnhbhealthline.ca/listServices.aspx?id=10071

@orac

I agree wholeheartedly: incorporating culturally-sensitive concessions into Makayla's treatment at the hospital would have gone a long way to - perhaps - encouraging the Sault's to continue treatment.

Makayla's mother said, “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.”

McMaster University has an Aboriginal Students Health Sciences Office, which was- and continues to be supportive of the Sault's controversial decision. They would have been perfect advocates for the Sault's to turn to when they felt that they were not being treated respectfully and with compassion.

http://fhs.mcmaster.ca/ashs/

So, why the Sault's did not access any of these resources - or were not directed to these resources - still continues to confuse me. Because the resources are there.

By Selena Wolf (not verified) on 20 Jan 2016 #permalink

I have watch this story progress from the beginning to its unfortunate end (and now epilogue) with much sadness. It wasn't our society's best moment.

While the race issue has many facets that were in play (particularly the liberal angst/harm that leads to indigenous people having their traditions elevated over parental responsibility) one should not lose sight of the fact that the parents failed to provide their daughter the necessities of life. Failing to do so is a criminal act in Ontario.

This issue gets very twisted when minorities and indigenous people are involved (likely due to abhorrent past institutional behaviour.) Many people questioned the Judge's first ruling in this case and he has walked back some of his language in the ruling (for this very reason of parental responsibility.) In recent cases in Ontario, where non-aboriginal parents have failed to care for sick children due to pseudoscience beliefs, very serious criminal charges have been leveled.

People should also understand the quandary McMaster faced. They are required by law to protect a minor and report parents who fail to provide proper medical care (under penalty of law if they do not). This scenario is one of the most vexing and culturally complicated that an institute can face. The only way to cut through the extraneous debates, clarity on medical reality is an absolute minimum to ensure proper care for the child. All involved failed in this case, Makayla died when proper, timely medical care was interrupted. As a society, we need to call out the absurdity that preventing use of pseudoscience in the treatment for medical conditions is racist behavior. While racism is a valid concern, wrt to the interactions with indigenous people, it should never be a scapegoat for neglecting proper child care. This only plays into the hands of charlatans immune from compassion or who operate without ethics. Innocent children die, charlatans get richer, politics of medicine get uglier and we all are worse for it.

Deb @23

“telling someone else what should be allowed to count as traditional is an inherently racist act” Fair enough but I do not think anyone here is suggesting that. Helianthus @32 eloquently describes traditional ritual vs medicine. I certainly do not object to anybody; race, creed, culture from using whatever ritual they think may be helpful nor should they be restricted in the practice of. However, bring down some potion of unknown origin to add to a chemotherapy protocol, I have a big problem.

“Obviously wheat grass enemas were not happening a few hundred years ago” I do not think that is so obvious considering that wheat grass was described by the Egyptians some 5,000 years ago, they described colon lavage in 1500 BC and Hippocrates in 400 BC described enemas for fever. It is a safe bet that someone tried it because if they were drinking it, the other end was tried. Surely if it worked, it would have been recorded.

“connection that has led the Saults to identify them as traditional” As has been noted by many, in their stressful time, the Saults have been all over the place, with contradictions, that this is not a fair statement. Brian Clement does tours in Canada but I have never read that he sought them out. This blog has been filled with heartbreaking histories of those who went altie and died.

“There is no need for a quack if you are meeting those needs” Impossible dream as there will always be some segment, no matter how hard one tries, will have a problem. How anyone can be anti-vaccine is beyond me, but Orac has plenty of material to continue with multiple posts. Sure we should keep trying, but there is a limit as to the available resource in a patient environment.

@31 “Maybe they were cynically using the ‘traditional’ argument to force the courts to allow the quackery they wanted. But based on what we know, that’s a really big call.” It is a whole lot more complex than that, but Chemist @38 describes very properly how the hospital had no alternative. There is also evidence of much discussion before the court became involved and then the court further contributed to the problem.

By Ross Miles (not verified) on 20 Jan 2016 #permalink

My honest suspicion is that there was a whole lot of post hoc ptui coming from Makayla's mother.

I really doubt that Clement was offering anything with appeal to Sault's people's old or new traditions. His claiming that he could cure Makayla's cancer and that it would be no problem if the Saults brought along anything they wanted in terms of their own traditional stuff is well within the realm of likely, in my opinion. I think this created a convenient, apparently culturally sensitive hideout in a foreign country, well beyond the reach of any attempt to force Makayla back into chemotherapy.
Makaya was miserable due to the effects of chemo, wanted out, (and don't forget she believed Jesus would cure her, or something to that effect) and her mom concurred. I suspect the whole aboriginal aspect was simply exploited in the very same way that a "white" mom might exploit anything she could to get her daughter out of chemo - and then try to absolve herself after the fact. But I may be complete wrong.

I do wonder what would have happened if an elder woman from the tribe had told Sault "Your daughter needs this. You do what the doctors tell you to do." Aboriginal grandmothers can be pretty powerful forces.

I don't recall ever hearing anything about First Nations people in this area being concerned about having traditional things available in hospitals. The health related things I do hear about are problems with lack of clean water and decent housing on reserves, drug and alcohol abuse, and an horrific rate of suicide, particularly among younger people. Today, from nearer the Saults' home, this from the CBC.

I can say that Cowboys and the Klickitat have at least one song in common: "O Bury Me Not (on the Lone Prairie.)"

What is... reincarnation?

A Cowboy asked his friend.

By Your Teruhiko (not verified) on 20 Jan 2016 #permalink

First, I applaud Orac for the broader take. It would indeed be a good thing for hospitals to allow co-woo that didn't interfere with real medicine for certain patients – especially those from different cultural traditions, and those suffering from the ravages of chemo. As far as the First Nations go, this is in line wth how the local government-sponsored First Nations health clinics already work: They dole out conventional medicine for the body, but have sweat lodges, drumming classes, etc. for the spirit (different bands had very different 'traditional medicines', so the clinic offerings are specific to the traditions of the region). It's good to hear someone from McMaster listening, because they totally screwed the pooch in this case, and yes, 'race' had a lot to do with it. This went much deeper than insensitive comments from hospital staff, to every choice the hospital administrators made in handling Makayla and J.J.'s cases.

However, it needs to be said that Sonya Sault is and was totally full of sh!t. By which I mean she uses First Nations traditions as a cover, despite the fact they're not her guiding principles. (I would not doubt the legitimacy of the two other moms who spoke to racism at McMaster, so this doesn't address the larger points.) One of the effects of various prejudices is that the Canadian media have gone with the race/culture angle on the Sault case from the get go, and largely kept hands-off the Sault's prime motivator: evangelical Christianity.

Before the Saults shuttled Makayla off to white death-merchant Brain Clement, they'd had her 'cured' at a revival meeting by a white Christian faith healer:

Makayla’s mum and dad, Kenny and Sonya, are also pastors at the New Credit Fellowship Centre in Hagersville. Makayla's.diagnosis and plight first came to limited public attention on May 5, when she and her parents travelled to Sarnia, where the U.S. televangelist Ted Shuttlesworth was holding the first of four encounter services. At that service, Makayla first shared her encounter with Jesus, whom she said had appeared to her one night in hospital in a vision. “I asked him, ‘Can you heal me?’ and he said I was already healed,” she said. An hour of the evening – complete with Mr. Shuttlesworth speaking in tongues and healing various of the ill — is available for viewing online. Her mum and dad are front-row centre. Mr. Sault is often visible, and Mr. Shuttlesworth makes a clear reference to Makayla, telling the crowd of worshippers at one point that Jesus was so omnipresent he could “come into a little girl’s hospital room and say everything’s going to be all right!” Working through Mr. Shuttlesworth, Jesus also “healed” several people of their deafness that night, as Mr. Sault later remarked admiringly on his Facebook page. He was also one of the visiting brother pastors called up by Mr. Shuttlesworth to join him in prayer. Makayla could be seen often, sitting with her mum and little brother, from the rear.

In short, the Saults NEVER intended to seek actual 'traditional aboriginal medicine' for Makayla. They were counting on Jesus. And, by the by, the New Credit band are Ojibwe, and plant-based potions are NOT part of their 'traditional medicine', but rather that of the Iroquois – to which the neighboring Six Nations reservation, and J.J.'s family belong.

Obviously wheat grass enemas were not happening a few hundred years ago, but there is some connection that has led the Saults to identify them as traditional.

Nope, they're just pretending.

Clements successfully sold something to the Saults.

... and that something was likely was an extremely thin excuse to remove Makayla from the jurisdiction of the Canadian courts...

Which brings us back to McMaster Hospital, racism, and the 500 pound gorilla absent from this thread (though Orac's discussed it before): from the First Nations perspective Makayla's case wasn't about cultural traditions, it was about child custody, framed against the appalling history of the Canadian government removing Native children from their families and communities and placing them in abusive 'residential schools'. This is why the New Credit and Six Nations bands (which are not at all friendly in general) stood behind the Saults, and went in on the 'traditional medicine' ruse. It was the best card they had. And they had been dealt it by McMaster.

First of all, it's NOT true that the law required them to refer Makayla to FCS when the Saults withdrew her from chemo. Canadian law allows a hospital to request a mandated treatment plan, a provision designed for cases just like this. This would have been much better for Makayla, as the decision would have come much faster, and caused much less of a ruckus since Makayla wouldn't have been removed from her home. It's not like McMaster doesn't know about treatment mandates, and hasn't filed for them before.

So why did they go straight to FCS with Makayla? Race maybe? Well, there's no other excuse I can see for either their ignorance or (I suspect) disregard of the fact that filing a protection request with FCS for a First Nations child would set off a sh!t-hurricane that would not be off medical benefit to the child. Either they didn't understand the history of the residential schools and what 'government custody' means to First Nations people, or they didn't care.

It's not just that the hospital filed for protection either, but the fact it specifically cited 'traditional medicine' in the report. First, that has no medical or legal relevance to the request for protection – for which the case comes down to 'the parents have taken their child off chemo' – the 'for what alternative' being irrelevant. Second, unless everyone dealing with the Saults had their heads up their rears, they would have known the Saults were major Jesus-freaks, would be taking Makayla to someone like Shuttlesworth for the glossolalia and laying-on-of-hands spectacle, and would have cited THAT, if they'd cited anything. In fact, while the Saults may have mentioned 'traditional medicine' in passing, they didn't make a big thing about it until AFTER McMaster filed the protection request.

So why did the hospital cite 'traditional aboriginal medicine' instead of Christian faith-healing? Some sort of stereotypical assumption about everyone who lives on the rez? Well, I don't see how they couldn't know the Saults were Evangelical Christians when they're the pastors of a f***ing Evangelical Christian church. Some cynical (and ignorant) calculation then that citing Christian religious beliefs as cause for protection would ruffle mainstream feathers, but 'aboriginal traditions' would be an easier sell as the villain? Well, as I said, they didn't need to cite anything/i> – and, in fact, the substance of the request is all about the dire medical consequences of withdrawing Makayla from chemo.

No, I suspect the reason McMaster not only mentioned 'traditional medicine', but put it right at the beginning of the official document they filed with FCS is that they were looking to subvert the autonomy of the First Nations in general, and in medical matters specifically. Taking everything into context, they seem to have had such a lust to take-down 'traditional medicine' they were either willing to sacrifice Makayla Sault in search of precedent, or just blind to the fact that would be the effective result of their actions. And the idea that McMaster was just clueless is hard to swallow, since AFTER the Sault case made it crystal clear Brant FCS wasn't going to issue a protection order for a First Nations child, AFTER it was revealed that Brain Clement's wheatgrass spa was the 'alternative treatment' in question, the hospital filed the same sort of request for J.J., again citing 'traditional medicine'.

Why go there AGAIN, knowing it would fail, and also knowing the families were going to a homicidal white com-artist rather than some traditional shaman, unless the McMaster PTB were setting up a legal appeal on the 'traditional medicine' principle. Which they did indeed file, of course. It's important to remember that FCS, not J.J.'s family, was the defendant in this suit. That is, McMaster was asking Judge Edward to force FCS to take J.J. into protective custody against the judgement of the FCS officials. And again McMaster framed their appeal not just as 'it's neglect to withdraw the kid from chemo', but including the naming 'traditional medicine' as a problem.

In short, the cases of the First Nations girls involved a lot of games-playing and one thing being masked as another, with things seldom actually being what they appeared (especially as they appeared in the press). In that light, it occurs to me that Judge Edward may have been doing a little gaming with his initial ruling, which gave too much weight to 'traditional medicine' and failed to address the language in Canadian law that provides exceptions to aboriginal rights where serious health and safety issues are concerned. That is, he may have intended to wind up exactly where things are now, but felt he needed to put the 'fear of God' into McMaster in order to get them to the table (and, in the process give J.J.'s family an avenue to get her back in treatment).

Whatever, McMaster seems to be singing a different tune these days. The doctors and the bands are talking and working on compromises. Even Sonya Sault is addressing a real issue, however disingenuously and hypocritically, in a way that might do some good. Perhaps it's a good sign that a story on this issue doesn't have to address the question of custody and the residential school abductions, if it means that sort of divisive stuff is off the table now. Because it will have to be, if we're going to talk about cultural sensitivity in patient-hospital interactions, or talk about how to keep folks freaked out by chemo away from preying sub-human scum like Brian Clement.

Sadar, with those investigative skills you could start your own blog. Yet I wonder how your certitude would go over. For example, no one knows what the Saults driving motivation was and choosing belief Jesus; that just seems weird.

Do you think that they think that Jesus needs to use wheat grass enemas? After reading your comment it seems far more likely they gave up on Jesus and moved on to next thing they thought promised a cure without the nastiness of chemo.

By Not a Troll (not verified) on 23 Jan 2016 #permalink

@Not a Troll:
h[]tps://sadmar.wordpress.com/

That's quite a statement about design statements.

Sadmar @ 42

Interesting take but I am questioning some of the basics.

“in line with how the local government-sponsored First Nations health clinics already work” There is no local government sponsored clinics as they are a Provincial responsibility. Aboriginal Health Access Centres have been around since 1994. There is one less than 2 Km from McMaster Children's and another in Brantford within 20 Km of anywhere on the Six Nations Reserve. De dwa da dehs nye>s Aboriginal Health Centre Website: www.aboriginalhealthcentre.com Not quite your explanation.

“good to hear someone from McMaster listening, because they totally screwed the pooch in this case, and yes, ‘race’ had a lot to do with it” With the First Nations patient load they have, race does not have a lot to do with it, nor in that environment could they have escaped the realities of where they operate.

“it was about child custody, framed against the appalling history of the Canadian government removing Native children from their families and communities and placing them in abusive ‘residential schools’” “Either they didn’t understand the history of the residential schools and what ‘government custody’ means to First Nations people, or they didn’t care.” Residential schools were appalling having been started in 1892, but dissolution began in the 1950's. In Brantford, the school was closed in 1970 and was transferred to the Reserve in 1971. It is now the Woodland Cultural Centre, an aboriginal non-profit charity devoted to indigenous art, history and culture. Since it was gone before Makayla’s mother was probably born, I think First Nation people know what the current process is about, notwithstanding the opinions of professor Dawn Martin-Hill.

“it’s NOT true that the law required them to refer Makayla to FCS when the Saults withdrew her from chemo. Canadian law allows a hospital to request a mandated treatment plan” Not sure what Canadian law this would be, so please explain your claim. In Ontario it starts with the Health Care Consent Act, 1996 (HCCA). I also presume FCS means the more common CAS - children's aid societies (sometimes called family and child services). Please confirm so we do not “talk past each other”. And CAS falls under the: Child and Family Services Act, R.S.O. 1990, c. C.11 Also the hospital sued CAS not the Sault's to send Makayla back into treatment where I do not think there was ever an intention of a custody order.

“Some cynical (and ignorant) calculation then that citing Christian religious beliefs as cause for protection would ruffle mainstream feathers, but ‘aboriginal traditions’ would be an easier sell as the villain” Your conjecture could likely be true in the USA, but in Canada, save for a few isolated bible belts, church beliefs would be the easier villain. I would take on any church before any aboriginal community. In 2008 the then Prime Minister said in the House "I stand before you today to offer an apology to former students of Indian residential schools. The treatment of children in Indian residential schools is a sad chapter in our history." Our current Prime Minister is asking the Pope to apologize for their role in the residential schools after the most recent report. The Ontario Health Minister Dr. Eric Hoskins has given Six Nations $75,000 to find ways over the next year to harmonize traditional healing and the health-care system.

If not already having done so, please read “Family of Makayla Sault speak out about their experiences” It is a written statement that the family of Makayla Sault read aloud during a Forum at McMaster University in February of 2015. No mention of rascism or evangelical religion. https://tworowtimes.com/opinions/opinion/family-of-makayla-sault-speak-…

By Ross Miles (not verified) on 26 Jan 2016 #permalink

The hospital I work at built an All Nations Healing Room, meant to be a welcoming and accessible space. It is quite frequently in use.

http://www.viha.ca/aboriginal_health/anhr.htm

(As I expect it might be asked - there is also a beautiful old chapel in the hospital that is open to everyone 24/7, and there is a staffed Spiritual Services Department. There are not any other spaces designated to a specific cultural groups within the facility, and I can't say if any other group has requested dedicated space).

Much has been said here concerning sensitivity to culture and traditional practices with little to no attention given to what is, demonstrably, the case. The death of a child is exceptionally difficult and making decisions with the limited information that can squeeze between what lawyers or solicitors (depending on where you are located) cheerfully and charitably term "informed consent" and the "talking down to" or "condescended" that the person with significantly (dare we say ridiculously less) education might feel even though they would not understand a word that was said without a significant degree of simplification that is often accompanied by errors of omission and errors created by the person receiving the information such as making inappropriate inferences, errors created by logical fallacies, and formal logic errors that go unnoticed because no one has pointed them out before. In short, what sort of decision can one expect of someone with a severely limited education in the face of a desperate need to make the right decisions and a paralyzing fear of making the wrong one; in the face of a once glowingly happy child now ravished by something inside a bottle with a label that might as well be written in Chinese for what little good it does to someone whose most basic question, what are you putting into my child, cannot be answered in any substantively satisfying form such that knowledge can bridge the gap between fear and trust.

Enter the satisfyingly simple and understandable nonsense and the sudden sense of well being that someone free from chemotherapeutic agents feels for a bit and a post hoc ergo propter hoc later, someone is certain that chemotherapeutic agents are responsible for the death of his or her child as opposed to that one scary word that seems so random and cruel. Cancer is not one disease and no one will ever "cure" cancer but childhood leukemias are eminently survivable. A fact that may be verified by historical data but one that seems empty when it is one's child currently undergoing the treatment.

At the root of the problem is the lack of the most basic knowledge of how science works which is, decidedly, not the all too often taught Naive Scientific Method that any child can probably recite in their sleep. Moreover, the lack of critical thinking skills that generally accompanies a limited education leaves the frightened and intimidated parent looking for a way out and horribly vulnerable to quackery and flimflammery. Indeed, the practice of medicine and the science that underlies it have advanced with such rapidity in the last 50 or so years that even individuals with an extensive but unrelated education will find themselves in an unpleasantly not dissimilar situation wherein an educated person feels even more intimidated precisely because, having once believed themselves to be well prepared, the experience is all the more shocking; all the more disturbing.

What is needed is an interface, a kind of knowledgeable advocate, someone with the ability to connect at a personal level and with the knowledge to explain the arcane, the inaccessible, the intimidating parts of medicine but not a physician which is to say, someone with the time to provide a proper explanation with sufficient background information so that the person in question, be they patient or family, may become progressively more comfortable in what is a decidedly intimidating environment. They do not need to share either religion or culture, what is needed is empathy and time

So why did I say all of that rather than discuss issues of culture etc... Firstly, hospitals are dehumanizing to everyone regardless of how much care the staff takes to minimize the effects of the institution. It may well be all the more so for someone who has sought to live a lifestyle that harkens back to another time though not necessarily one espoused by any tribe or group. Consider the case of Richard "Dick" Proenneke: though living in Alaska rather than Canada, he lived alone for 30 years and, having come and gone as he pleased, the hospital in California where he died, must have been a living hell indeed with the overwhelming tumult of people and constant cacophony of sounds that must have assaulted him constantly, it is unimaginable that he did not die just from takin his first step into the place --discomfort and intimidation from being at a hospital is no one's unique province. Secondly, there is no one with such an extensive knowledge of all the relevant fields of science that underlie the practice of medicine that they are not cowed by the unfamiliarity of the environment and the passivity demanded of the patient and his or her family. Thus, it is unreasonable to expect that anyone without it would find any comfort in knowing how extensive the physicians' education and experience is or the exceptional cleanliness of the room when their only concern is their child; rationality cannot be expected. Thirdly, the staff sees new patients so often that the effect on the institutional culture is no different than television: that is to say, it removes just enough of the mystery so as to eliminate curiosity while doing nothing to eliminate stereotypes and misconceptions. Finally, few things are as important to a person as the absolute control of their bodies and the passivity demanded of patients and their families only serves to accentuate the problem for EVERYONE.

Thus, it is not that she did not have a priest or a shaman but rather that she lacked any information in which she might have found comfort. It is the lack of a peer to tell her that her child would go through hell before anything got better but better she would almost certainly get. Someone to tell her that she had also been approached by that man when things seemed bleakest but how he stopped showing up when removing the chemo would not have that sudden but temporary flight to health and has not come around since. Someone who would say to her that her child was in good hands and someone who would lead her in a prayer of and for hope. Given what was missing, neither a cathedral nor a sweat lodge would have been enough regardless of culture. incidentally, no one should be surprised that this unfortunate family became easy pickings for a conman, the hopelessness was an irresistible scent to this man, the fear and intimidation on their face, icing on the cake; the bad was so profound that even now, the charm of the conman feels more appetizing that the pediatric oncology ward.

By ThinkingOnAMountain (not verified) on 03 Mar 2016 #permalink

"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. "

I fail to gasp why you would consider it necessary to make this distinction. Is there a traditional aboriginal alternative to chemotherapy?

By Jib Halyard (not verified) on 10 Mar 2016 #permalink

Simple. Clement's quackery was being represented as aboriginal medicine. It isn't, not by any stretch of the imagination.

Would aboriginal medicine be any more effective than other forms of quackery? The real issue here is a child being denied evidence-based medicine, not what flavour of woo was on offer.

By Jib Halyard (not verified) on 13 Mar 2016 #permalink