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

oracknows — Mon, 18 Jan 2016 02:00:54 +0000

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.

oracknows Sun, 01/17/2016 - 21:00

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.

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.

@ 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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

@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...

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.

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.

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

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.

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.

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.

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.

@Not a Troll:
https://sadmar.wordpress.com/

@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-…

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.

"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?

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.

An Ontario court dooms a First Nations girl with cancer: Who's to blame?

oracknows — Tue, 18 Nov 2014 05:00:40 +0000

An Ontario court dooms a First Nations girl with cancer: Who's to blame?

I figured that yesterday’s post about the First Nations girl in Ontario with lymphoblastic leukemia whose parents stopped her chemotherapy in favor of “traditional” medicine would stir up a bit of controversy, and so it did, albeit much more at my not-so-super-secret other blog, which featured an expanded version of this post. Don’t worry, you didn’t miss anything. It was expanded in order to have a more in-depth discussion of the quack in Florida who’s treating this girl, something I’ve already discussed here and could just link to. Efficiency!

Before I launch into this, let me make one thing very clear. I come to this story from the same direction that I’ve come to each and every story about children with life-threatening cancers being denied effective chemotherapy in favor of quackery, going all the way back to the very earliest days of this blog and the story of Katie Wernecke. My view is that what matters the most is the life of the child and making sure that child is given her best shot at life by being treated with the best science-based medicine has to offer. Everything else is secondary and, to me, important only inasmuch as it helps or hinders achieving the goal of saving the life of the child. I don’t care much about whether I offend by criticizing a religion that would allow a child to die. I don’t care much if it bothers anyone that I criticized a racial, ethnic, or cultural group that facilitates the medical neglect of children. And I don’t really care that much, in the context of this case, about the historical grievances native peoples have based on past transgressions of the Canadian government. That’s not to say I don’t recognize them as important; rather, it’s that I do not accept them as valid reasons to let a child die.

I bring this up because the way discussions have been going have been disturbing, albeit predictable. Perhaps the most annoying arguments boil down to, in essence, what I like to refer to as an appeal to past repression. In other words, because the Canadian government has treated aboriginal peoples horrendously in the past, something that is inarguably true, it is argued that the Canadian government today shouldn’t make sure that this First Nations girl receives effective therapy for her life-threatening cancer today and should instead defer to the mother even though the mother’s choice will, unless reversed, lead to the death of her child. No, this is not a straw man argument. If you don’t believe me, check out the comment thread in my not-so-super-secret other blog.

Of course, the other argument being made, the one that appears to be the one that won the day for the parents of this girl, was that traditional medicine is integral to the identity of aboriginal people, that it’s so much part of their culture that to deny parents the right to choose to treat their child with traditional medicine is to deny their very culture. Indeed, this is the spin that the Six Nations Council put on Ontario Court Justice Gethin Edward’s decision denying McMaster University’s petition in a press release last Friday, that I can’t resist commenting on. It begins:

The Six Nations of the Grand River and the Mississaugas of New Credit are please with the Ontario Court of Justice’s decision today, affirming our peoples’ inherent Aboriginal right to use traditional medicines.

We have relied on and cared for our families with our medicines since time immemorial. We know that they are effective.

The court affirmed that our use of traditional medicines was integral to our cultures, historically and today. The court recognized that our right to use our medicines is not subject to the approval of western medical practitioners.

Except that the girl is not using “traditional medicines.” The family took her to a white quack down in Florida who has nothing to do with Six Nations or the Mississaugas of New Credit. As I described in yesterday’s post, the quack, Brian Clement, was giving talks in the area, one in particular entitled “All About Cancer and Conquering Disease with Living Foods.” The girl’s mother encountered him there. Impressed with his “confidence” she gave him a call. When he assured her he could cure her daughter, she stopped her daughter’s chemotherapy and headed to Florida with her daughter. She is not using traditional aboriginal medicine, unless traditional aboriginal medicine includes things like wheatgrass implants (enemas), colonics, far infrared saunas, ozone pools, “bio-energy” treatments, “colorpuncture” (a bastard offspring of acupuncture), detoxification, intravenous vitamins, and the Aqua Chi ionic footbath.

Somehow, I doubt that it does.

The press release continues:

Our communities have two girls and families directly affected by this decision. Both families are loving, diligent, and conscientious in the care they provide for their daughters and the decisions they make concerning their medical care. Both have elected to discontinue chemotherapy, and are relying, instead, on traditional medicines.

Again, neither of the two girls are relying on traditional medicines. The statement above is simply untrue, and, given that the chiefs must know that what Brian Clement offers is not traditional medicine, it’s hard not to see this statement as, under the most charitable interpretation, disingenuous as hell, and a lie if you’re not as charitable. (At the very minimum there's a massive case of cognitive dissonance.) Indeed, the other girl, Makayla Sault, is also relying on Brian Clement. Ironically, she is was not even led to her decision to refuse chemotherapy by following the traditional beliefs of her people in that her father is a pastor at an evangelical church and Sault stopped chemotherapy after reporting having seen a vision of Jesus in her hospital room telling her that she was already healed. She is now critically ill, her cancer having predictably relapsed several months after she stopped her chemotherapy. Again, as I said yesterday, the first chance to treat a cancer is the best chance to cure it. Relapse after partial treatment is bad. Very bad. The chances of curing it go down a lot. If she’s already end stage and her immune system is compromised (as described in the story) because her bone marrow’s been blown out by blasts, she might still be salvageable with chemotherapy, but it will be difficult. I don’t know enough about her condition to judge, but it doesn’t sound good.

I would also argue this. It doesn’t matter how “loving,” “diligent,” and “conscientious” the parents are if what they are doing will kill the child. As I said yesterday, every parent making a decision like this loves her child. Every parent refusing chemotherapy thinks she’s doing what’s best for her child. Every parent who pursues quackery instead of medicine does so because she thinks it’s best for her child. The child will end up just as dead, and that’s what’s very likely to happen to Makayla Sault and this First Nations girl. These chiefs, the same ones who were so vocal about how the Ontario Court should defer to the parents to administer “traditional medicine” because it’s supposedly so integral to the girls’ cultural identity and are now gloating that that is exactly what the court did, bear a share of the blame that these two girls are doomed.

Too bad they felt this was more important:

Forcing a First Nations child to undergo unwanted, mainstream, medical treatment is an affront to the dignity and autonomy of that child, our cultures, and our nations. Had our children been forced into treatment, it would have had a disastrous effect on their emotional, psychological, and spiritual well-being. Instead of being proud of their own traditions, they would learn that the laws, governance, teachings, and medicines of the Haudenosaunee and Anishinabe cultures were wrong and even dangerous. This is simply not true.

We sincerely hope that this decision is part of an emerging era of healing and reconciliation between Canada and our nations. We hope that our children and generations to come will no longer experience the mistrust, misunderstanding, and mistreatment by the Canadian government that have been our daily reality for over 200 years.

In its application, McMasters Children’s Hospital sought to undermine our cultures and ways of life. We are pleased that the Court refused to participate in this effort and dismissed McMaster’s application.

Six Nations Elected Council and the Mississaugas of the New Credit believe that the decision made by the Court today is one of the many steps necessary to repair the broken relationship between Canada and First Nations people.

I can’t help but wonder what these people were thinking when they drafted this. Seriously. Taking these children away and treating them with effective chemotherapy would not teach them that the “medicines of the Haudenosaunee and Anishinabe cultures were wrong and even dangerous” because they’re not even using the medicines of the Haudenosaunee and Anishinabe cultures! Of course, they’d probably be just as dead if they were to use Haudenosaunee and Anishinabe medicine, given that it’s highly unlikely that these medicines have anything that is effective against lymphoblastic leukemia, but they’re not using them. Indeed, they’ve rejected Haudenosaunee and Anishinabe medicines in favor of quackery from a white man who isn’t even a real doctor or Haudenosaunee and Anishinabe traditional healer! The absurdity astounds!

It’s even worse, considering that if the First Nations girl were forced to “undergo unwanted, mainstream, medical treatment,” she’d have a roughly 90% chance of growing up to be a First Nations woman and live a long and productive life. That doesn’t seem to matter, though. To them, McMasters Children’s Hospital, in trying to save the life of one of their children, was seeking to “undermine” the “cultures and ways of life” of aboriginal people, and the key importance of this case was that it was a victory over the Canadian government that gave them the right to use their traditional medicine on their children. It apparently bothers them not at all that at least two girls will likely die as a result of this new-found right and that these two girls aren’t even exercising their cultural prerogative of using their traditional medicine.

Look, I understand, at least as much as a middle-aged citizen of an oppressor nations can, that aboriginal peoples have been treated horribly by the Canadian government, just as those in the US have been by the US government. I know about, for instance, the Canadian residential schools, in which aboriginal children were forced to attend boarding schools away from their families and communities in order to assimilate them into the dominant Canadian culture. There, aboriginal children often suffered physical and sexual abuse. It’s not surprising that there is a great deal of distrust. It is also not surprising that the Ontario government bent over backwards not to appear to be “undermining” the culture of the native peoples, even to the point of letting a parent medically neglect her child. It was a cowardly decision, but understandable in context.

However, it is a grave disservice to aboriginal children for Six Nations leader to allow that mistrust to lead to their using two innocent children as a weapon in their fight to obtain more autonomy. It is a grave disservice to their children to allow them to be victims of a quack. It is a grave disservice to aboriginal children to allow that mistrust to lead to this:

In the present case the community has rallied around the families of the two girls and fund raisers have provided money to fly the families to Florida for what was supposed to be "traditional healing" but was in fact just another fly by night scheme that will result in the death of two young girls who had put their trust in the adults of the community including their parents - ignoring the concerns of the medical establishment in Ontario.

As I pointed out thus far, the bill is’ already up to $18,000 and counting. As Deyoyonwatheh, who works for McMaster but wasn’t involved in either girl’s care, puts it:

Since the parents opted to go their own way and find "alternative methods", the death of their children will likely weigh heavily on their shoulders for the rest of their lives. How can one live with the knowledge that their poor decisions played the key role in the demise of their own children. The community saw fit to rally around these parents and so must also accept the responsibility for the decisions. It is all so painful, so sad. Vulnerable children who must of necessity rely on the best judgment of their parents and other adults, and being profoundly let down by them - even if well intentioned.

In addition to the parents and the Six Nations and New Credit communities as seen here and here, also "blame" can be directed at the Courts as seen here, and particularly here with the Courts decision to dismiss McMaster's case and permit the parents to continue with whatever form of treatment they deem appropriate. Furthermore the role of the Brant County Children's Aid Society, as seen here and here needs to be carefully considered.

Yes, there is plenty of blame for the impending deaths of these girls to go around, although, the more I read about this story, the more I blame, in addition to the quack Brian Clement, of course, the aboriginal authorities who used these girls as tools of convenience to assert their autonomy from Canada.

As I said, the best interests of the child are all I ever care about in these cases. Race, religion, culture, a past history of oppression, all of these I reject as reasons for letting these girls die. There is a way out, however. The leaders of the First Nations community in which these girls live can act, and act now, to see that these girls receive effective therapy. They can put the best interests of their community’s children over political considerations and historical grievances. Will they do that? I’m not optimistic.

oracknows Tue, 11/18/2014 - 00:00

At the heart of this is an assertion of 'the child' as property, here property of 'the tribe' as opposed to the more familiar 'child as property of the parent'. In both cases though the needs, concerns and beliefs of the adults take precedence over the best interests of the child. It's significant that this is in direct contravention of Article 3 of the UN Convention on the Rights of the Child, to which Canada is a signatory. Clearly though abject obeisance to primitivism is a stronger guiding light in Canadian Law than a broad principle of protection that applies the most vulnerable citizens in any society.

Spot on Orac. Yet another case where the 'rights' of a parent to believe in nonsense are put ahead of the interests of a sick child. In this case we have to add in the attitude that past oppression can be redressed by legal exemptions.
For me laws should be applied universally. If it is a necessary law it should apply to everyone, if not it should be repealed.

Great post. As a pediatrician from this area and acquainted with some of the physicians involved, I've been following this case closely and am appalled by the outcome. This is devastating for everyone involved, including the (some, not all) members of the Six Nations community currently celebrating it.

To them, McMasters Children’s Hospital, in trying to save the life of one of their children, was seeking to “undermine” the “cultures and ways of life” of aboriginal people, and the key importance of this case was that it was a victory over the Canadian government that gave them the right to use their traditional medicine on their children.

Spot on. Resisting white men's culture */supporting traditional First Nation culture was unfortunately extended to healthcare choice.

Except for one thing: the traditional/alternative medicine they are opting for is also coming from outside First nation's culture. It may bear some likeliness, but at the end of the day, they still have surrendered to white men's culture.

* I use "white men" loosely. I meant all non-First Nations cultures, so in majority from Europe. But Hindu/Chinese traditional medicine is as foreign to First Nations as mainstream medicine.

I can not relate, seeing how I am white and live on another continent. Still, the logic here is... Well, there is none.

If the girls were undergoing traditional Haudenosaunee and Anishinabe treatment I could at least see where the push against interventions comes from. It would be misguided or perhaps cynical use of individual's tragedy to protect the percieved interest of aboriginal culture. Agreeable, not, understandable, yes.

But all I am getting out of this case, mind you - as a total outsider, is a giant dose of hypocrisy. My juvenile imagination is creating an image of stereotypical injun, headdress and all, saying "We will not listen to the lies of the white man because we have the help and wisdom of the white man." Yes, it is insensitive, but sadly fitting due to involvment of Clement.

Will the parents look on Clements as a fighter for them who lost or as the charlatan that he is?

Not taking bets, just wondering.

I can only presume that the Six Nations of the Grand River and the Mississaugas of New Credit believe she is using primarily traditional medicine. The treatment by the Hippocrates Center is a separate thing altogether, unrelated to the traditional medical treatment.

The UN convention is pretty explicit about the rights of the child being of primary concern: http://www.ohchr.org/en/professionalinterest/pages/crc.aspx

I wonder if that provides a legal grounds for challenge?

Excellent, Orac!

I agree with Smith @5. The First Nations leaders involved have chosen as their hill to die on--more precisely, the hill they will allow these girls to die on--their right to choose a white man's quackery over Western medicine. If the options were traditional tribal medicine versus Western medicine, the First Nations position would at least be self-consistent, even if I didn't agree with the result. The position they have actually taken doesn't even have that redeeming quality. Clement must be happy with this decision, and presumably people who work for him would be, too. I can't see a reason for anybody else to be happy with this.

The problem has come about with this absurd need to avoid anything resembling 'racism' or 'cultural imperialism' (on the liberal side) and 'religious interference' (on the conservative side) we have a whole muddle headed concept that no matter how freakin stupid a culture's ideas may be, they must be respected (as in taken seriously).

Politicians know that if they jump in one of these issues, they're likely to be vilified.

Well said, Orac.

I have some perspective on the First Nations cultures from first hand experience and, ultimately, I'm a little disappointed in their Chief. He could have played this to both support their political cause -and- save a young girl's life.

"Thank you for recognizing our rights to govern ourselves as a First Nations people. Now, you two. Get your ass to the hospital so your daughter can get the treatment she needs. Not because -they- said so, but because -I- said so."

Steven Novella #11 "I wonder if that provides a legal grounds for challenge?"

Probably needs a Canadian Lawyer to answer that but sadly ratification of the UN Charter does not ensure its inclusion in the Law of the signatory countries - rather an additional step of formal adoption into national Law is required. There's much hypocrisy with countries signing these Conventions on the basis that it applies to other(by implication less civilised) peoples, but is not needed by the fine upstanding 'developed world' etc. Canada does have a Charter of Rights which it could be argued implies all the provisions of the UNCRC apply to Cabada, but I suspect it would require someone with the right to represent the child to actually pursue it. Obviously the parents and the tribe will argue they are the childs commanding representatives.

I suspect it would require someone with the right to represent the child to actually pursue it

McMaster University Hospital might be able to (IANAL, nor am I Canadian), but I doubt they will, for the same reason that came up in the Sarah Hershberger case in Ohio: it's a lose-lose situation for them. If the appeal were successful, they would be vilified as monsters for taking the children away from the tribe. Otherwise, they will have spent a considerable sum of money on lawyers (including lawyers for the tribes, since IIRC Canada is a "loser pays" country) that won't be available for treating patients. And that assumes that they would be given leave to appeal the decision, which I believe is not automatic in Canada.

I also suspect that many of Canada's First Nations have not ratified the UN Charter (although they have some degree of autonomy, they are not sovereign states, so I am not sure they were ever expected to do so), so even if the Canadian Parliament has adopted the necessary laws, I am not sure if they would apply to First Nations groups who have not ratified the charter.

As far as my admittedly limited knowledge of Canadian aboriginal traditional medicine goes, I believe that the largest part is shamanistic. There are certainly traditional herbal remedies used, but there isn't a vast array of them, especially when a particular tribe is considered. There has been some spread of certain things in relatively recent times, but in some cases it breaks with local traditions. (Case on point - my brother used to teach on reserves in northern Alberta and Saskatchewan. He told of one of the elder women remarking something to the effect of "why are they stinking up the place with that stuff" when she smelled sweetgrass being burned. Sweetgrass burning is an important thing for some tribes, but it was no part of the old traditions of that tribe.)
I strongly suspect the McMaster hospital would collectively bend over backwards to accommodate traditional ceremonies and even traditional medicines for the girl while she was in hospital receiving chemo. But no, so horrible foreign quack had to shove his nose in.

I don't post on Facebook, but I went to look at the page for “Six Nations Elected Council.” Below is their comment policy. The ruling was posted on 11/14, so in theory, comments would be allowed on the FB page. There are only 7 there now. The “about” section lists mail,phone, and address and I think it would be very appropriate to contact the Council.
“The following content will not be permitted on Six Nations Elected Council’s page:
•Comments/posts not related to a posted article/topic/information;
•Business solicitation;
•Profane or inappropriate language;
•Content considered to be defamatory, disrespectful or insulting to anyone including Council staff or representatives
•Content that promotes, fosters, or perpetuates discrimination on the basis of race, creed, color, age, religion, gender, marital status, status with regard to public assistance, national origin, physical or mental disability or sexual orientation;
•Sexual content or links to sexual content;
•Conduct or encouragement of illegal activity;
•Any other content deemed inappropriate by the Administrators”

The policy states no business solicitation but I see a post about "bio-mat" quackery, so they aren't enforcing that policy.

I just took a peek at the quack's website and truly, with the exception of three guys of indefinite origin ( Hispanic/ sub-continental Indian ?), it sure looks like a pack of whiteys**.. oops, I mean Caucasian people, to me.

** and yes, I can say that: I'm probably whiter than almost anyone, maybe even Orac.

Another very long post. (sigh) But only the first part addresses the topic. The rest is personal background. If you're inclined to read the stuff about the First Nations case, no need to read below the break unless you really want to...

Yesterday in the SBM thread, anyone who supported First Nations autonomy in any way got accused of excusing/enabling the deaths of these girls. But nobody was doing that. Nobody was saying a parent should have the right to substitute woo for chemo for a kid with leukemia, 'traditional Native' or 'Florida Man wacko'. There were also heavy doses of racism in the comments, not that i imagine the authors are active haters, just making some thoughtless jabs at the First Nations folks in expressing concern for the girls.

Orac states his position pretty clearly above, and has incorporated some proper reflections on yesterdays exchange. He admits he's placing priority on one moral element of the case, rejecting others, and doesn't care if he's criticized for it. That's honest and fair. A lot of the posts in the SBM thread yesterday were simply dismissing the other angles as if hey didn't exist, or were petty, and thus that even mentioning them was endorsing woo and infanticide.

First, let me say I am appalled by what the Sault family has done to Makayla, and if she dies, I would support the Canadian prosecutors in filing criminal charges against her parents, and against Brian Clement. In the hope that it's not too late for the other girl, I urged a social media campaign directed at the First Nations leaders to persuade them the best course to maintain the larger legal principle of autonomy they have just won is to get the girl into chemo so she survives.

But I still have a couple of small bones to pick with Orac. Not attacks or denunciations. Factual issues mainly.

It is argued that the Canadian government today shouldn’t make sure that this First Nations girl receives effective therapy

Well, yes and no. The problem is that "Canadian" is a bit of a red herring. I can only speak with certainty for myself, of course, but I would not at all contest the general proposition "government should make sure First Nations children receive effective therapy." Just speculating, of course, I'd guess there'd be no disagreement with that among other commenters in the SBM thread. The question is 'which government?' The fact is First Nations people, by law are only quasi-Canadian. The Nations (each individually) have a limited autonomy which makes them 'Canadian citizens' in some senses, but not in others. So the legal argument is "the Canadian government does not have the authority to make sure this First Nations girl receives effective therapy." Which is pretty cut-and-dried, and IMHO ought to be mentioned as part of the discussion.

Which still leaves the moral argument "the Canadian government should make sure this First Nations girl receives effective therapy anyway." Which I take to be Orac's position above. That's not cut-and-dried, either way. First, the history of abuse and oppression of the First Nations, including the residential schools program, cannot simply be dismissed. Second, in light of that, a court decision to force the Child Welfare agency to take the girl into custody would be an alarming precedent that would have consequences far beyond the case of one girl with leukemia, and would be a net moral minus, all things considered.

The decision was not cowardly. It was a correct application of the law. And as is always the case in the justice systems of democracy, the higher principles of the law take precedence over the specific case. We do not convict felons if their Miranda rights have been violated. In individual cases, justice is not served as a result. However, the alternative, giving free reign to police to coerce confessions from innocent suspectscoerce confessions from innocent suspects, is far worse.

Going back to the "what government?" question, I don't think anyone in the SBM thread was arguing "the Canadian government should defer to the mother even though the mother’s choice will, unless reversed, lead to the death of her child." I certainly would find such an argument reprehensible.
Unfortunately, the language in Judge Edward's decision does seem to affirm 'parents' rights' in life-or-death decisions, and that's very bad.

The argument then, is that The Six Nations and New Credit bands must — by law, and by moral and ethical standards viewed in the long term — be included in the government apparatus that makes decisions on child welfare interventions on behalf of children from those nations.

Thus, culpability for the deaths that may result from these cases would rest to some extent on the 'governments' of the Aboriginal nations. This is somewhat problematic though, as they don't necessarily have the resources or authority to set up their own child welfare agencies, though that is their stated goal.

Finally, on murkier ground to be sure, there ought to be a distinction between community 'sacrifice' in liberation struggles, and 'sacrifice' to spiritual dogma. This should be moot in this case because the people at risk of death are minor children. It seems Makayla Sault is adamant about leaving her fate in the Hands of God, and not returning to chemo, and if the Lord takes her, that's all part of The Divine Plan so it's OK. I no just world I can imagine do 11-year olds get to make that call. However the discussion fanned out, as one might expect, to any sacrifice to dogma, including adults.

But there is something more than dogma here. Again, we need to look at the political situations of Native peoples with a clear eye. Who among us would condemn James Chaney, Andrew Goodman, and Mickey Schwerner for choosing not to stay safely at home, but to work for civil rights well-knowing they might be assassinated by the KKK (which, of course, they were)? If we want to value the lives of Native children, I submit we must look at those lives in toto, not merely in regard to a specific medical decision. As I noted on SBM yesterday, the suicide rate among young Native Americans in the U. S. is more than three times the national average, and up to 10 times on some reservations.

Broad statistics lie, of course, so let me try to unpack that a bit. Tribal cultures in North America are quite diverse. Some tribes, the Navajo for example, have adapted well to living in communities surrounded by and interacting with white society. Other tribes have adapted not at all. When forced not to 'be Indians' their souls wither and they die. The suicides are just the tip of an iceberg of self-destruction. The 3X average is misleading, as some tribes would show no difference of even lower-than-average rates. Where I grew up (Minnesota) the Native population of plains Indians (mostly 'Sioux') were definitely in the 10X category.

I have no idea where the Six Nations and New Credit people fall on the adjustment-to-coexistence scale. If they've generally been adaptable, that matters in taking the Bigger Picture view of the case.

So, leaving those Nations out of it, I must note that the Native people who die when their cultures are forcibly denied them do not do so because they cling hard and firm to some superstition, dogma, ritual, etc. Throughout their history, they have actually been much more adaptable than most whites know. They reacted to white colonization by trying to go along to get along, and reconstructed their lives to adopt many of the white mans ways. But they had their limits, as you might expect, and however much they blended their culture with ours, it was never enough.
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The following may have no relevance whatsoever to the case of the First Nations leukemia patients in specific, or the argument for First Nations rights in Canada in general. I offer it here because I feel an obligation to my forebears to explain 'where I was coming from' in comments I made yesterday, in part to admit that they may well have been off the mark in terms of the present discussion, for which I apologize.

(N.B. 'Sioux' is an umbrella term devised by whites to refer to three groups of plains tribes with similar physical features, and related languages and cultures. From East to West, these people referred to themselves as 'Dakota', 'Nakota', and 'Lakota'. The differences were important to them, as were the differences between the different tribes in each group, but not to the European settlers. The three groups and their component tribes only began to form a united front against colonization in the mid 1860s, after the events described below.)

Yesterday, at SBM, I quoted the speech made by Taoyateduta (aka Little Crow) to the Dakota war council on the eve of the Dakota uprising of 1862. Taoyateduta was chief of the Mdewakanton tribe, but also the de facto leader of the Dakota in general, having gained more respect than the chiefs of the other tribes. Two young Mdewakanton braves had murdered a white family in an honor challenge, an act considered a grievous crime but in some way understandable within Dakota culture, but the worst sort of evil to whites. The Dakota knew retribution would be swift and severe, and militant chiefs had called for a 'first-strike' response that would drive the whites from the Dakota lands they had usurped through 'The Trail of Broken Treaties.'

Taoyateduta, who has been East to visit President Buchanon in Washington, knew war was folly. He called for peace. He could not convince the other chiefs. There was going to be a war whether he liked it or not. To sum up the speech, he spoke eloquently about the impossibility of defeating the whites, and the madness of making such an attempt. And then he said he would die with his people. If he could not live as a Mdewakanton, what was the point?

The thing is, being a Mdewakanton was a lot more flexible for Taoyateduta than Liberty was for Patrick Henry. He made every attempt to synthesize Native and European cultures, generally favoring the latter. He lived in a wood frame house, wore European style clothes, joined an Episcopal church, and attempted to take up farming, as the U.S. government had dictated the Indians must.

Now, the Dakota were no more suited to farming than the German farmers settling in Minnesota were suited to hunting Buffalo, but they gave it a go anyway. They didn't have a change, though. The Feds had crammed them in to a too-small strip of land running along the Minnesota River Northwest of New Ulm, MN. As part of the treaty establishing this territory, the Feds had agreed to provide supplemental food, blankets and other supplies knowing the Dakota wouldn't be self-sustaining in the near future.

However, the government placed distribution of food and supplies in the hands of corrupt traders, who refused to pass them on to the Dakota and tried to sell them on the black market instead. (Yes, free enterprise is always the answer...) The trading posts were protected by Federal troops. With his people starving, Taoyateduta met with the BIA agent and a representative of the private traders to demand the food and supplies the Dakota had been promised. Trader's rep Andrew Myrick replied, "So far as I am concerned, if they are hungry let them eat grass or their own dung." The BIA agent stood by the traders. It was this that led the other chiefs to advocate for war in the wake of the settlers' murders.

Andrew Myrick was one of the first casualties of the uprising. The Dakota stuffed grass in his mouth and left his body on display outside the warehouse where he had hoarded their food while their wives and children starved. The BIA agent who did more than anyone to precipitate the uprising by backing Myrick with Federal authority fled into obscurity, or at least absence from further historical records.

The war failed, as Taoyateduta knew it would. He attempted to lead attacks on military targets, but was repulsed by superior firepower. Angered warriors refused to accept his commands, split off and committed atrocities among the civilian population of New Ulm. The Dakota surrendered after five weeks of hostilities. 303 Dakota men were sentenced to death for atrocities by a military tribunal, with no legal representation and no understanding of the proceeding. The vast majority of them were innocent of the charges, having being loyalists who stayed with Taoyateduta fighting the military. Some had not participated in the fighting at all, and had risked their lives protecting white settlers from violence. Most of the renegades who had committed the atrocities had fled before the surrender, and escaped capture.

Resisting pressure from Minnesota Governor Alexander Ramsey, who demanded the execution of all 303, Abraham Lincoln commuted the sentences of all but 38 — ostensibly restricting the executions to the truly guilty. However, the authorities hadn't exactly been keeping track of who was who, and a number of innocent men were sent to the gallows in place of guilty warriors who had similar names. Among these was Chaska, who had made the most heroic efforts on behalf of the white settlers, and saved the most lives.

On December 26, 1862 the 38 were executed in a public hanging in Mankato MN.* It remains the largest mass execution in American history.

The remaining Dakota were deported to a reservation in Northeast Nebraska, again instructed to take up farming, but this time on sandy soil that yielded little and no real farmer would claim. Predictably, death continued to follow death. The NE land was dubbed The Santee Indian Reservation, 'Santee" being the white name for the Mdewakanton. My paternal grandmother's maiden name was Medora Santee. She never disclosed details of her youth to my father, and only many years after her death did I learn she had been born in Niobrara, NE, the town at the edge of the Santee reservation. Based on this, and a few other scant details from my Dad's memory, we began to suspect she had been of mixed blood. Had this been true, she certainly would have hidden it as she married a German immigrant, and midwestern German-Americans could never forgive the Dakota for the New Ulm atrocities.

In the years that followed, I sometimes considered I might eventually be the last living descendant of one of the falsely convicted men who had their sentences commuted by Lincoln and got shipped off to Nebraska in chains. I never expected my ancestor to visit me in dreams, but I felt some kind of small historical debt.

I thought back to my undergrad days when I would sometimes commute to the U of M by bicycle, passing through the Native American neighborhood on Franklin Ave. Open and friendly during the day, it was filled with bars and became the most dangerous part of town at night. When I went with my friends to the punk clubs off Hennepin Ave. downtown, we'd run into older Native American men hanging out on streetcorners. They were friendly enough, too, but after a minute of conversation deep profound damage would bubble to the surface. I would feel like I was talking to one of the walking dead. At the time, I never imagined we might be tied by blood and forgotten history.

14 years later, the spotty revelations about my grandmother presented the possibility I might be descended in some sense from both sides of this awful war (though my German grandfather hadn't arrived in America until the 1900s). I took an interest in the history of the uprising, and in Native Rights in general. At one point I applied for a teaching post where part of my duites would have been helping kids from the Rez in North Dakota get into college. I sure as hell didn't want to live in Grand Forks, and that would been my reason for accepting it. I didn't get the offer anyway.

Maybe 6 or 7 years ago, after my father's death, I finally took to the Internet geneology resources to see if I could verify my grandmother's heritage. I discovered she actually had no native heritage at all (again, this was just our suspicion, she'd never made any claim of the sort, only referring to herself as "descended from French Huguenots").

It turned out she was actually mostly German herself, her father having been born in Pennsylvania Dutch country with the German surname Sante. When and how exactly it got changed to Santee I do not know, but my guess it was no accident he wound up in Niobrara, where he apparently became something of a big wheel before mysteriously committing suicide. For all I know he may have been using the coincidence of the naming to exploit the Mdewakanton for financial gain. We do know he learned to speak Dakota fluently. His wife was a Christian missionary who apparently worked on the Santee Rez. Maybe they were good people. I don't know. I thought briefly about going to NE to see what might be in the county historical society archives. But it would be a difficult and expensive trip from where I've lived, and in the end, I guess I don't want to know.

Anyway, none of this generalizes to all Native groups, and again the Six Nations and New Credit bands may have very different histories and situations. And, no, even if those bands have similar histories, that would not justify the parents withdrawing their children from chemo, or the Chiefs for supporting that decision, or the Brandt CAWS agency for washing its hands and refusing to act. It might explain those things to some small extent. Or not.

Some folks who comment here seem unable to distinguish explanation from justification. I can't fathom that. If you've read this far, I just want you to know I can't tell this story without crying: for Taoyateduta, for the victims in New Ulm, for Chaska, for the wounded men on Hennepin Ave., for the men drinking themselves to death in the Franklin Ave. bars, for the kids on the Red Lake rez even today who see no future worth living for, for America, for Makayla Sault, and for my inability to make any of this change.

I have read every history of the 1862 uprising still in print and available on Amazon. I know all the details, good and bad — mostly bad. Taoyateduta remains one of my 'heroes'.

I wish no great harm to Daniel Synder, but I'd sure like to see someone stuff grass in his big mouth (alive, of course).

If I believed in spirits, I would pray for the spirit of Taoyateduta to rise in Florida and have a little pow-wow with Brian Clement. After which Clement would be displayed in front of the Hippocrates Health Institute, his mouth stuffed with wheatgrass enemas.

Free Leonard Peltier.

Finally found the judgment, which I did not see noted on either site, and which makes for additional sad but relatively straight forward reading: http://www.theglobeandmail.com/life/health-and-fitness/health/article21…

A revolting webpage of faith-healing Christian's tryng to use the First Nations decision to justify returning an Arizona boy who was taken into custody by CPS for leukemia treatment to his Fundie Mom.

Whereas the alternative treatments, including prayer, were part of the Christian family’s faith and tradition, their heritage was not met with the same tolerance that Makayla’s family found. It is her very faith that the CPS-appointed psychiatrist called “delusional.” Though prayer and healing is an ancient part of Christian doctrine, Christopher’s removal from the mother he has grown up with was based on the accusation that Tonya “continues to cling steadfastly to her bizarre religious beliefs.” She is charged with neglect because she chose to seek alternatives, including prayer and healing, before agreeing to a procedure that her research said was risky and very painful.

Note the blatant lie that the First Nations case involved Makayla. Note also, damnit, that the First Nations decision has nothing to do with "tolerance toward family heritage." It was decided on grounds of constitutional sovereignty.
...........
A voice of reason, this Canadian author of First Nations descent castigates the New Credits and Six Nations chiefs for siding with 'Alternative' quackery and faith-healing, and stands up for SBM, without tossing Aboriginal rights into the garbage. (Yes, it's on HuffPo Canada, but I think the author's independent and they pulled the story from somewhere else...)

From my point of view it would be gratifying to see the cause of indigenous rights asserted on something actually indigenous, rather than upon the creative practices of a Florida massage therapist or the proposal that Jesus cures. In some hospitals, an intergrationst approach has been taken, in which elders and cultural potocols have been brought into the institution. Belief in a culture doesn't have to manifest itself in absolutist choices between supposed cultural purity and betrayal... The expressed long-term goal of many native communities is a community-developed and community-run child welfare agency that has local support and legitimacy. In my ideal world, this agency would already be in place, and it would be looking unromantically on the dubious claims of this aboriginal rights crusade.

E.g., the right thing to do, as doug has already noted #15, is let the shamans do their incantations and smoke-burning while the kid gets chemo.
........
Finally, please, please watch this clip, the last 5 minutes of Arthur Penn's Little Big Man with Chief Dan George as Old Lodge Skins:
http://youtu.be/QwgnDn8ez9g?t=59s
I don't believe in magic, but if ever have to undergo chemo, I'd want that man in my room.

Ross Miles #20
Thank you so much for that link. It's very disturbing, actually.

The first revelation is that a lot of the discussion in the RI and SBM threads has been off-point due to important gaps in the news stories linked.

Nothing Judge Edward could have done could have saved the child (identified as 'J.J.') Her family had already fled with her to Florida, and even if Edward had ordered Brandt CAWS to take her into custody, they would not have been able to extract her from Florida. This, no doubt influenced his decision to base the decision on the Constitutional rights issue.

The second revelation is that the nature of Brian Clement's quackery seems to have considered not at all, and the result was a decision that appears to this IANACL as utterly wrongly decided, sets a horrible precedent, which ought to be overturned on appeal.

The case law cited in the decision establishes the criteria for a practice to be considered an Aboriginal right:
1: It must be an integral defining feature of the culture in question, such that without this practice, the culture would be "fundamentally altered or other than what it is."
2. The practice must have been integral to the culture pre-contact between Aboriginals and Europeans. The language is a bit vague at different points, allowing for some wiggle-room for evolution or adaptation of practices over time.
3. The burden of proof for both the defining character and the continuity with pre-contact practices falls on the claimant of the rights.

So, you're asking how Brain Clement's quackery meets these criteria, and so am I.

Well, first of all, McMaster Hospital and it's attorneys completely bungled the case. They apparently failed to anticipate the Aboriginal Rights issue and review the case law. They presented the case for forced custody as 'this child will die without chemo, the end' as if she was a 'regular' Canadian citizen. As such, they did not investigate Clement's treatments and distinguish them from from the traditional plant-based medicine of the band. The hospitals application read J.J.'s mother "decided on August 27th to discontinue the [chemotherapy] with the plan to treat [J. J.] with traditional medicines." (my emphasis)

WTF. Ah, but burden of proof remained with CAWS, the bands, and the family. They called, as expert witness, an Anthro Prof. from McMaster named Dawn Martin-Hill to testify about 'traditional longhouse medicine'. I don't have the transcript, but it appears that Martin-Hill spoke only to the long history of plant-based medicines among the bands, dating long before European contact. If any question about how Clement's treatment had continuity with the traditional practices (which I'm guessing they weren't, but just a guess), there's no indication whether she gave an 'expert opinion' on the continuity, or whether Judge Edward made a leap...

The telling thing though is that the hospital did not call an expert witness in rebuttal. As we now know, SBM-literate experts of 'longhouse' descent were available. (Mohawks are included in the Six Nations). They could have looked at Clement's website for a couple minutes, and testify 'no that's not traditional longhouse medicine'. But apparently the hospital did not think to seek them out. (SMH)

So now, because Clement's treatments were not scrutinized, Canada would seem to have a precedent that "traditional medicine" is whatever any single First Nations mother says it is. If a massage and cosmetology parlor has any kind of plant on the premises, hey!, that's continuity with a defining cultural tradition!

IMHO, in the wake of the decision, McMaster Hosital has made another grievous mistake by choosing not to appeal the ruling. Again IANACL, but you'd think they'd have grounds on the 'alternative is not traditional' line articulated by Wayne Spear. But it seems they have prioritized an attempt to save J.J. over the consequences this could have for many, many First Nations children in the future. An appeal would likely keep J.J. and family in Florida, and by the time the higher courts would hear it, J.J. would probably b beyond help. But it's not clear tome whether anyone but the hospital has standing to challenge Judge Edward's decision.

If the ruling stands this is very, very bad. On reading the stories in the Canadian press, I had taken the alterna-woo question as not central to the case, and the Constitutional Rights issues. And in a one way that's true, as it seems it just wasn't brought up in the hearing. But by exclusion, it seems it has actually become central to the results of the proceedings.

Brandt CAWS: Butt covering cowards
Parents: Delusional woo-bait
Chiefs: Unethical sick-child-exploiters
Clement: Monster
Hospital: Clueless
Judge: Hands tied by everyone else's mistakes
Lawyers: Lawyers

So yeah, it looks like Makayla Sault has been sacrificed to Jesus, J.J.'s future is dark... and it's just going to get worse.

What is there left to say/

Orac, I think you should care about the back stories that influence parental decision making. It does matter. And if you take it into consideration, you can make it work for you to benefit the patient, rather than against you.

We aren't going to make any headway against quacks as long as they appear to be the patient's "friend" and we appear to be the enemy. They whisper to the patient, "we're listening to you, we understand you, you can trust us."

When all we have to offer is cold facts, is it any wonder the parents run rather than walk to these despicable people?

Advocacy needs to focus on the quacks, on the actual harm they cause.

Thank you Ross Miles, for providing the link to the Court's deliberations and decisions.

I've provided care for children who were diagnosed with various types of cancer and who are undergoing treatment for those cancers. I can unequivocally state that every child and their families, were provided with extraordinary support services, during their hospitalizations and when they returned home. I have no doubts that the same type and intensity of social services were provided to the two young girls who are the subjects of Orac's blogs.

The hospital and its staff, I presume, are acutely aware of the aborigine groups of people they serve in their community and I am certain that they have effectively provided compassionate care to other members of that group.

I'm dumbfounded by the sheer ignorance of the parents of these two youngsters...which is definitely not due to a lack of education or their intellectual abilities.

The hospital, rightfully so, acted on behalf of their young patient, by notifying the local social services unit, about a case of medical neglect. When that local social services unit refused to intervene on behalf of J.J., then and only then, did the hospital institute a court case, to compel the social services unit to do their job.

The judge, IMO, never fully explored, J.J.'s parents' belief system and never explored the folk medicine which the parents proposed to use to treat her cancer; Brian Clement does not practice "folk medicine".

Yeah....I'm "going there". The parents are medically neglecting their child because they cannot, or will not, deal with the realities of their child's cancer diagnosis. They'd rather stay in denial and deny their child the only chance she has for long term survival.

There seems to be a lot of opprobrium on the parents here. I'm not sure I necessarily disagree, but perhaps the question is much fuzzier especially for none medical people.
I don't necessarily believe for instance that the parents have the same assessment of the probabilites that we do, and cannot therefor be easily accused of medical neglect. They see and hear two sides, from their point of view two doctors, two types of treatment and so forth - how
exactly are they supposed to differentiate?
After all to non-medical people the quacks look like doctors,talk like doctors, have surgeries like doctors,
offer cures like doctors (and charge money like doctors...).

How are the parents supposed to know that even though this guy is allowed to operate and present himself as a bona fide doctor and charge people money for his services really they should know that he isn't one?

Its no use saying but the 'real' doctors said 'X', since as far as they are concerned he is a real doctor and therefore has an equally valid opinion.
And of course real doctors do vary anyway in their beliefs about best treatments and sometimes what works and is efficious and what isn't, and can be motivated
by other reasons (such as economics) (see Ashya King case for instance).

You have to bear in mind also that the plausibility and confidence that conmen use is a key part of their technique, primarily because psychologically it is
exactly what these vunerable people are desparate to hear.

To my mind there are only two culpable parties here - the quack and the system that allows the quack.

Whereas the alternative treatments, including prayer, were part of the Christian family’s faith and tradition, their heritage was not met with the same tolerance that Makayla’s family found.

Which to my mind argues Makayla's family's heritage should have been met with less tolerance, not that the Christian family’s faith and tradition should have been viewed with more tolerance.

@sadmar
First off, it is Brant, not Brandt, and what the he!! is CAWS?

The hospital did what it should have and what is reasonable from its position - ask the court to compel an agency with existing authority to apprehend a child to do so. If the hospital had perused an appeal or gone in with the intent of "making law" it probably would have been and should have stomped on by the provincial and/or federal governments. It is a publicly funded hospital. The job of challenging the judge's ruling should fall on the government(s), not the hospital.

doug
CAWS is either the sound crows make, a misspelling of the word for female bovines, or what comes at the fingers of someone meaning to type FACS (Family and Child Services) when some neurons misfire.*

Had you perused my post and the actual decision more carefully, you'd see how the hospital failed in its pursuit of a protection order.** The petition takes the form of 'J.J. must be taken into custody because X', with X needing to be valid under the applicable law. In preparing their petition, the hospital failed to consider how the fact J.J. is a First Nations child would affect the judgement under law. Worse, they clearly failed in their intellectual responsibility as scientists by conceding that Clement's treatments constituted "traditional medicine."

At the point J.J.'s family fled the jurisdiction, the petition became an attempt not to 'make law' but to clarify existing law. That is, it was about the principle, not the kid, as the kid wasn't anywhere Brant FACS could do anything about it.

As for an appeal, IANACL so I don't know who else might have standing to make one, but the hospital surely does as they were the party that brought the action, and lost the decision. And, uh, the judge IS the government, and I don't get the point about public funding of the hospital. If public funding makes them part of the government, then one arm of government would be challenging another arm of government. But i have no idea what kind of judicial system would let only the government challenge the government.

* There are so many different acronyms for child welfare agencies from state to state, maybe even county to county, I can't remember which is which, or exactly what they all are. I don't think any of them are CAWS, and my brain somehow inserted the 'A" from FACS into CWS — Child Welfare Service.
** That would be my tit for your tat. Or, as we're talkin' Canada here, if you're doug, i'm bob, and I just returned a "Hoser!" to my brother, eh?

lilady:
No problem 'going there' in this case. The parents were given a thorough explanation of the medical issues by the hospital so they were well aware withdrawing J.J. from chemo could lead to her premature death. The only leeway they get is taking away 'could' rather than 'would,' as they have no legal obligation to accept McMaster's opinion. However, in that case, with a credible possibility suggested, the due diligence of being a child guardian demands that investigate further, and give proper interrogation to the credentials of any 'professional' in whom they entrust the care of their child. They could have easily gone to the Web to find other sources on survival rates and treatments for J.J.'s form of leukemia (the diagnoses not have been in dispute). And if they bothered to Google "Brian Clement" they would have discovered Orac's earlier post (and probably a variety of other exposes). IANAL, but if I was the prosecutor in that district, I would be looking to charge them with neglect now, and negligent homicide if J.J. dies. Child sacrifice is not an Aboriginal Right. Again, the practical effect of this may be moot as I can't imagine Rick Scott would sign off on arresting and extraditing the parents. But filing charges would 'send a message' that Ontario's not going to stand for this sh!t.

JCL
IMHO your point about a lay persons gullibility in any field is valid in a very broad sense, but not in every specific instance. If we were talking about an individual choosing a chronic disease treatment for themselves, that would be one thing. But we're talking about people who have a legal and moral responsibility for another human being making a decision they KNOW could have fatal consequences for that other person. You don't need any background in medical science to get that turning care of a kid with leukemia over to a guy on the basis on his assertion of his own competence is flagrantly irresponsible. "How are the parents supposed to know that even though this guy is allowed to present himself as a bona fide doctor that he isn’t one?" The Internet maybe?

JGC
Makayla Sault was not involved in the court case. When she withdrew from chemo at McMaster, the hospital filed a report with Brant FACS, as the doctors felt a legal obligation to notify authorities of possible endangerment of a child. Brant FACS opened an investigation, as they are legally required to do upon receiving such a report, and all but immediately closed it. "We are satisfied that Makayla is not a child in need of protection and we are closing our case and file on the family," The hospital did not pursue the case. There is no evidence that the Sault's Christian beliefs played any role in either decision. A more likely hypothesis is that Ken Sault is prominent enough in the New Credit community that the authorities feared the consequences of intervening.

@sadmar

How do you KNOW what they KNOW? Indeed sadmar, as Im sure you KNOW, whether anyone can actually ever be said to KNOW anything is *the* epistemological question. When you add people with some sort of 'faith' - whereby they allow themselves to 'know' things (I'll stop the caps now..sure you get the point) without (indeed almost because) of the lack of rational scientific evidence, then who knows what they can be said to know or why?
However, we don't need to get too philisophical. You believe that the parents are knowingly doing something that is probably not the best for their child. I believe that the parents may well be doing what they think is best for their child because they have reached the wrong conclusions. I believe this has been substantially aided by conmen doing what conmen always do - being the plausible, confident optimitstic people insinuating themselves into vulnerable peoples lives - and I suspect that once the politics of the tribes got involved and committed to the cause it became extremely difficult for the parents to ever change their minds.

I feel sorry for these people because they have an ill child, and even more sorry because they have made a bad choice for the wrong reasons, fallen in with conmen, and been trapped by a steamrolling political cause - and they will have to live with it.

btw I can't belive that you are suggesting that they know this guy is a crook thrugh the internet! When I google him I get the first 5 results are his stuff, then some smiley pics of him (my god I trust him already - he looks soooo, trusty!) - then no 6 is RI, then the rest seems pretty upbeat about him.

I agree with Orac, when you are dealing with matters of children and medical neglect the rights of the child to life should be the only consideration. The fact that you love your child is unquestionable. The fact you want what is best for your child is unquestionable. But, what is best? Should the evangelical Christian get to reject medicine for prayer? Should the Native American get to reject medicine for a native ceremony? In both counts that answer is no. It has nothing to do with culture, only fact. If you want to add prayer, or wave incense and turkey feathers around while your kiddo gets chemo be my guest. Pray to whatever deity your like, set up an altar, hell sacrifice a chicken it matters not to me. What this is the triumph of parents wants and needs over the wants and needs of the child. And in the case of the tribal leadership the coldblooded sacrifice of a couple of children on the altar of autonomy. CPS services for the most part have been really hesitant to intervene in a lot of these cases, the kids aren't being abused per se, they are well fed, clean, clothed, etc. But it is abuse to deny them medical care that will save their lives just because you happen to 'believe' they don't need it. Parental beliefs shouldn't be allowed to overrule scientific fact. I have thought for a long time that many courts and state agencies were way too reluctant to crack down on these parents because it always plays badly for them on the internet (Sarah Hershberger) but in the end it is the life and health of the child that matters. Those going on about understanding, great, I do understand the background. But when you have made an effort to educate the family, to include their cultural preferences, when they still take their child out of treatment it is neglect and the child should be removed for treatment. Pure and simple.

A more likely hypothesis is that Ken Sault is prominent enough in the New Credit community that the authorities feared the consequences of intervening.

I'd have feared the consequences of not interfering--i.e., the avoidable deatrh of a minor child whose rights we were tasked with protecting--far more. But hey--I'm funny that way: I don't believe people have the right to sacrifice the well-being of their children on the altar of their faith.

But, what is best? Should the evangelical Christian get to reject medicine for prayer? Should the Native American get to reject medicine for a native ceremony?

An adult, of course, can choose to make poor decisions, even those that will in all likelihood lead to suffering and their premature and avoidable demise When one's instead talking about adults who are the guardians of a minor child, a medical procedure that offers that child a 90% chance of survival, and prayers/traditional services that instead offers them as close to a 100% chance of death as attainable, the answer is "No" and "No"..

JGC - just to be clear the quote you took from my post above deals with parents deciding care for minor children. If you are an adult, though I will disagree with your decision quite strongly, you are free to shove wheatgrass enemas where the sun don't shine all day long and I won't stop you. But I vehemently reject woo for children who don't have the capacity to make that decision for themselves.

@Kiiri

'Should the Native American get to reject medicine for a native ceremony?' Do you just mean life and death or does athletes foot count? Less factiously, what about clinical depression - ie where the ceremony might have some effect, but due to no research we have no evidence - gonna force the pills on them?

'But it is abuse to deny them medical care that will save their lives just because you happen to ‘believe’ they don’t need it. '
But is this the case here? The parents believe they don't need it because they believe there is something better on offer. They are wrong, but so is your characterisation. Also, I assume it is the quacks not the doctors who are asserting that the medical care 'will' save their childs life - I don't know what the prognosis with and without the treatment but its not definite life/definite death - I think if your going to force treatments on people you'd better argue from the facts not convenient simplifications.

'...when they still take their child out of treatment it is neglect and the child should be removed for treatment. Pure and simple.'
Ashya King case? The parents wanted a different treatment. The treatment they wanted was in the opinion of their doctors at best no better than the one on offer, the people offering that treatment thought differently - they were doctors too. So it appears that doctors can differ, who gets precedence? You seem to suggest that these parents were rightfully arrested and should have been carted back to the UK to face child neglect charges - pure and simple.

At what levels are we to decide that we can override the parents? For instance, lets say in the current case there is a 5% chance of recovery by natural means (ie no intervention) and 50% with the treatment. So we all agree the child should have the treament.
10%/40%?
20%/30%?
25%/26%
Remembering that these percentages also are not the actual probabilities they are the assessment of one (group perhaps) of people.
Is it just life and death? Do we need to start allowing doctors to decide 'quality of life' issues etc?

The thing is, whilst I agree in this case, my strongest agreement centres on the involvement of the quacks. Surely the solution here is not to be forcing people to do anything it is to remove the spurious options. The law allows quacks to operate, advertise, make money, do public presentations, call themselves scientists and all the rest presumably because freedom blah blah rights blah blah.

Then when some poor parent falls into their hands you want to curtail THEIR freedom and their rights and accuse them of neglect -
don't you think there is something wrong with that picture?

Kiiri has elucidated my opinions about J.J.'s care and the poor decisions made by her parents to discontinue the treatment for her cancer.

J.J. has not reached the developmental stage where she is considered competent to stop the prescribed treatments. Her mother who is her natural guardian has chosen some alternative care in lieu of the treatments which have a documented record of 90 % cure rate.

The treating hospital is blameless because they notified the local social services unit about the situation and when that unit refused to intervene, the hospital brought the case into court.

The judge, according to the Ross Miles' link, never questioned the mother about her folk remedies...in spite of the judge having a common heritage. Folk remedies/medicines/religious beliefs are accommodated by every hospital where I have worked and where family members were hospitalized.

The charlatan Clements is still in business in Florida. If Florida moved against him tomorrow, that will have no impact on the course of J.J.'s illness.

(I,m going back there) J.J.'s mother should have been removed as her child's guardian, because she has gamed the system and is medically neglecting her child.

There.is.no.excuse.for.medically.neglecting.your.child.period.

Gosh, I didn't imagine when I replied to JCL that I was arguing with a tool who'd profess that "they know COULD" is some kind of epistemology fail, and profess not to know how to use Google to check Brian Clements credentials, or the licensing of the Hypocrites Health Institute. My bad. Won't happen again.

@Sadmar
"“How are the parents supposed to know that even though this guy is allowed to present himself as a bona fide doctor that he isn’t one?” The Internet maybe? "

The internet will tell them western medicine is evil, especially that Orac guy. It will tell them vaccines are a toxic soup designed to keep us dumb and sick, and probably infertile. It will tell them antibiotics are useless and actually cause disease. It will tell them less than 2% of cancer sufferers survive five years after chemo. It will tell them there are at least 10 secret cures to cancer - from a 9-volt battery, to herbal teas, to a caustic balm to baking soda and coffee consumed through the wrong orifice - with success rates between 95 and 100%.

The internet is an amazing tool, assuming you already have the critical thinking fundamentals and at least a little trust in science. But without those things, the internet is not a guaranteed path to knowledge, no matter how badly you may wish to find the truth. Surely the worldwide anti-vax movement is ample evidence of this.

A bit more from the National Post Tuesday, including a quote from someone familiar.

@sadmar

way to go - also way to miss the point. You claimed they 'know' something as though this projection of what you know was automatic, in fact I don't see it is - I also fail to see that checking his credentials on the internet actually gets you some form of definite knowledge - it gets you a bunch of opinions from two sides, since they can't differentiate those worth listening to in their immediate vicinity I fail to see how looking on the internet will help them - perhaps you think they'll come to RI read your posts and experience an exegisis ROFL!

My main point here is that whlst this is being characteriszed as 'neglect' I do not believe it is necessarily so - (and this does go to their 'knowledge'). Neglect is taking no action when one should. These parents are taking action - presumably the action that they think is best - IT IS THE WRONG ACTION but it is not negelect. They have failed to realize that in the USA at least having a shiny building out there in public marked 'Cancer Center' with doctory people in it, adverts, presentations and all that stuff, isn't sufficient to differentiate hospitals from quacks. Is there any other area where conmen are allowed to set up and practise in such a blatant manner?

Sadmar - just because you, I and everyone else on this blog perceive our 'knowledge' as obvious doesn't make it a priori or indeed the only possible conclusion. You have to factor in also the lens of subjective perception also. To try to understand the steps that allow them to reach these bad decisions rather than just assuming that they are idiots is I believe more constructive in the long run.

Perfectly rational people are subjected to all sorts of cons all the time, and whole nations of apparently rational people have marched to war based on lies and sociological pressure - but you don't believe it is possible for one average and vulnerable, probably frightened set of parents to be misinformed (deliberately) and caught up in pressures (such as becoming a legal cause celebre), and reach the wrong conclusions?

Given all the sociological tripe you spout I would have thought you at least might have understood this point, but clearly you're the kind of person who reads (and quotes) lots of books, but understands few of the words therein.

@sadmar again
You have quite frequently said on this blog *what can be done about quacks and the 'battle' against them*. You have implied
it is a battle we, the rational people, are losing, possibly correctly.
So I think we with our superior 'knowledge' and intellect could start by examining the vexed question of how apparently rational and well meaning people can end up making such horrendously bad decisions - when we understand that perhaps we can begin to work out what to do about it - though in ths particualr case having some form of 'Cancer Act' in Canada, the US and every other advanced nation would clearly be a rather good practical start

@29 I did read the judgement carefully. It is a sloppy piece of work when it comes to presentation of the information.

My interpretation of the judgement is that it would not have made any difference if the hospital had undertaken to prove the quack is quack and his offerings largely useless, and/or that they have nothing to do with the traditional medicine of the tribe to which the family belonged. Similarly for the traditional medicines. The claim was made that the girl would receive traditional medicine, and it appears that that claim alone was taken by the judge as sufficient to warrant his ruling. There is nothing in the judgement precluding use, concurrent or otherwise, of any other therapy - nor could there be unless it were highly specific.
It is clear that all parties were aware that chemotherapy offered a high chance of survival and that no other treatment of any sort was likely to prevent the death of the child. A claim was made very early in the process that the gild would receive traditional medicine. The judge effectively ruled that the right of the parents to choose traditional medicine, because the use thereof was an defining feature of the culture, trumped everything else, even if it would clearly end in the death of the child. I can see nothing to suggest he failed to understand that the traditional medicine would be ineffective.

It might have been best if the hospital had withdrawn the application the moment the girl was taken out of the country, but I don't know what the implications of that would be. It might bar a renewed attempt to have her apprehended if she returned to Canada while still in need of treatment. It might have put an immediate end to the case without judgement, thereby preventing the judge from making his ruling and so leaving the opportunity for a protracted trial without regard to the case of a specific individual or the encumbrance of the ruling as it now stands.

While the hospital probably could launch an appeal, that just is not its job. It is allocated public funds to provide health care under the existing laws, not to spend vast amounts of money and resources in the courts. Any appeal, I believe, is properly the responsibility of the the governments of Ontario and/or Canada, specifically because there are constitutional matters to be considered and it concerns all aboriginal people throughout the country, not just one person and her family.

"gild" should be "girl"

Had our children been forced into treatment, it would have I have to wonder what Justice Edward's position on female genital mutilation (euphemistically referred to as 'female circumcision) would be--the practice is just as much a cultural practice integral to many cultre's traditions. Would he hold that preventing parents from handing their daughters over to the local barber for infundibulation would similarly have "a disastrous effect on their emotional, psychological, and spiritual well-being", prevenitng theim for beign proud of their own traditions and possibly learning that this teaching of their cultures was wrong and even dangerous?

Somehow I doubt it., which makes me wonder how he distinguishes between cultural traditions that are contrary to the well-being of minor children we must respect and which we can condemn..

Duh--quote failure. Ignore the initial "Had our children been forced into treatment, it would have" fragment.

The horrible thing about the judge's ruling is that it would seem to amount to a blanket barrier to any outside agency intervening in any health or well-being matter for any aboriginal child, as long as the parents assert that they will use traditional medicine. But I can see potential for great difficulty in overturning or modifying his ruling, which is why I believe that any appeal should be undertaken with great care and originate with an agency with substantial resources and a negotiating position that is very solid - most certainly not a hospital.

Fortunately, I don't think many aboriginal people in Canada reject modern medical care in general. Probably the number that lack good local access to it is vastly greater than the number that would reject it. I fear that this ruling might be used to interfere with protection of kids for whom Big Alcohol has played a big part in the inability of their parents to care for them.

One of the saddest things here is that genuine Native American therapies can be integrated into a patient care plan much the same as any other spiritual practice can be.

Now what's going to happen is when this poor child dies, it will all get blamed on the chemo having "weakened her immune system" even though it's been months since she last had it.

Thank you lilady. I disagree with both JGC and JCL (and one of you needs a new handle because I am mixing you up) about the definition of neglect. If you refuse care for your child that is by definition medical neglect. When you make a point about depression (JGC I hope) and what is essentially spiritual practice, hell practice whatever spirituality you want. As I pointed out, you can burn incense, wave feathers, stand on your head, chant to the Buddha, or whatever else strikes you fancy while your child is receiving their chemo. Hell you can feed her wheatgrass smoothies and vegan food all you want while she gets her chemo. You are basically arguing semantics. That case at hand is that with chemotherapy this girl has a 90% chance at survival. The data shows NO OTHER THERAPY that is effective. None. Zip. Nada. So we are not arguing which drugs to use, we are arguing science versus magical thinking. Think all the magic you want, but if you believe that children should under any circumstances be removed from their parents then medical neglect counts. If you starve your child they will get taken away. But if you decide you'd rather give your child juice rather than chemo then suddenly you have the right to do that. It is beyond hypocritical. In either case the child is doomed. I don't support taking children from parents lightly but in this instance a medical guardian should have been appointed to make decisions in the best interest of the child. Period. Not all cases are so clear cut. I admit that, the real world is often rather messy. In this case the facts are quite clear. In other cases more nuance may be needed to figure it out that is what we have a court system for. I don't advocate for denial of due process, but in this instance a terrible decision was made that essentially sacrifices this girl on an altar of ideals. As for JCL (I think) and FGM I don't care what your culture is carving up your child's sex organs is abuse. The child cannot consent, is harmed in the process, and culture be damned in that case. I also don't necessarily support automatic gender assignment surgery for children born intersex as research is showing that its basically a dice roll whether the child will grow up happy with their assignment. Again, when you are talking about something that can't be reversed and you are doing it to a child then you need some pretty compelling reason and just because we've always done it that way don't cut the mustard.

It takes guts for a parent to accept their child's devastating diagnosis and the responsibility to be by your child through long months of treatment. For the child whose parent cannot or will not assume that role, there is a recourse, yet the local social services agency and Judge Edward refused to consider the plight of the desperately ill child, thus condemning the youngster to a painful and certain death.

I want to share with you all, the sad death of Robin who succumbed to leukemia before there were effective treatments to treat and cure 90 % of childhood leukemias. Her family still mourns the loss of the sweet little girl:

http://www.dailymail.co.uk/femail/article-2235807/Barbara-Bushs-heartac…

@Kiiri et la
I seem to be getting a bit vilified for things I havn't said or implied. Let me be plain - I think in this case these children should certainly be required to have the proper SB treatment. I in no way condone 'magical' practises especially for such serious illnesses. I absolutely in no way condone genital mutilation, foot binding or any other parctise that harms children whatever its cultural provenance.

But anyway, it isn't 'tradition' medicine that is at question here - it is pseudo-science quackery, and that can be harder for none science based people to penetrate.

Look we allow this guy Clements to set up a clinic right there in the main street, spout pseudosciency stuff to people who may not be able to differentiate, advertise, get testimonials, fake up studies etc etc. Then he turns up and says to the parents the one thing that real doctors can never say in this situation, the one thing the parents really want to hear, which is ' don't worry, it'll be all right'.
So at this point, from the parents point of view, this isn't a case of a real treatjment against no treatment, this is a case of one treatment against another. That is not neglect - by definition - it is being wrong.
So now we have let this conman do all his stuff, operate publically, turn up and speak reassuring crap to parents, and then for some reason we blame the parents for being conned!
Sorry, but my view here is that the parents are largely a victim of a conman - without whose existence, apparently happily allowed by the state, they simply wouldn't have had the option of choosing such a bad course.

I blame the conman, I blame the system that allows the conman. To what extent I believe the parents are actually culpable here is in my mind open to question, and it doesn't seem to me that this is 'neglect' in the way I understand the word (ie conscious non-action that harms a child) - they are taking action, and I think they believe it is efficous action, therefore it's not neglect, and I'm not going to disregard logical objective analysis of the situation just to dance to the same tune as everyone else.

There were a number of cases in the UK of serious illnesses and at least one death due to Wakefield and his con. At the time, it appeared that Wakefield was a bona fide doctor, concerned for his patients, thinking only of the children, and basing his conclusions on some scientific research published in a respectable journal (very respectable - like the ony one most non-medical people have heard of!).

Due you believe those parents were neglectful?

JCL, stop changing the subject, by bringing Wakefield up.

There are many cases of medical neglect, where the local social services agency and/or a judge has utterly failed to protect a child whose medical needs are neglected by a parent. J.J.'s serious illness and her mother's medical neglect is just the latest case.

Just look at your post at # 36 above, as you argue about intervening without the facts presented by the treating physicians and by Orac. The child has a 90 % chance of total cure with prescribed treatment and a 100 % chance of dying without the prescribed treatment.

You'd do well to check out some facts about childhood leukemia treatments, remission and cure rates, before you defend the neglectful mother and Judge Edward.

@lilady
Hmm, seems you really haven't read what I'm saying. I'm not defending anyone really nor am I arguing against intervention at all. I think I made that clear in #51
What I don't get here is that sure critize the mother, criticize the judge if you want, but look from the OP

"As I described in yesterday’s post, the quack, Brian Clement, was giving talks in the area, one in particular entitled “All About Cancer and Conquering Disease with Living Foods.” The girl’s mother encountered him there. Impressed with his “confidence” she gave him a call. When he assured her he could cure her daughter, she stopped her daughter’s chemotherapy and headed to Florida with her daughter"

So you don't see that as an issue? Dr Brian Clements - practising in Florida in an open (and therefore essentially santioned manner), turns up and says 'hey I can cure that' in a confident,plausible manner and its the mothers fault for not being able to differentiate one doctor with a clinic from another?

Its not his fault for being a conman, or our fault for allowing him to exist and practise and do this sort of thing to people, vulnerable and scared people (ideal marks) at that?

I mean, can't you see who is the villian here? My point about Wakefield was entirely to the question..its not those parents fault they were misled into doing the wrong thing - its his fault and only his fault. This case may not be quite as cut and dried, but seriously, you're all jumping on the parents and not addressing the clear issue of the involvement of a conman, and the very fact we allow him to operate as though he were as legit as the real doctors is in itself confusing for these parents.

So you go burn the parents at the stake if thats what you need to do, seems like they get all your anger. So I'll reiterate again, I believe from the above quote its pretty clear that they have been conned - happens all the time to desparate people facing serious illness - and we allow it to happen - actually in the UK we don't as far as cancer goes, but you 'rational science based' medical types in the USA do - so actually its your fault for sitting on your arse typing judgments on parents instead of doing something proper about it, and allowing your quacks to be exported to prey on vulnerable people. Send him to the UK - we'll jail him.

The clincher surely is they were doing the right thing - getting chemo - until this guy turned up and convinced them he had another way - he is the sine qua non of the situation - he is the criminal, not his victims

JCL, the point is that the child's right to have treatment for her A.L.L. has been ignored by the Judge, in favor of the mother's belief in some alternative treatments.

Stop blaming the charlatan Clement for the mother's medical neglect of her child. If the mother never heard of Clement's spa and opted for treatment from a naturopath, homeopath or chiropractor, she would still be guilty of medical neglect.

What have counterfactuals to do with this? She didn't opt for treatment from a naturopath, homeopath or chiropractor she opted for chemotherapy. If she had 'spontaneously' opted for these kinbd of treatment I would join the bandwagon no problem.

But then Clements turned up and convinced her otherwise - presumably by telling her that he had 100% success rate (better than 90%) and much easier than chemo.
Would you select 100% success rate over 90% - I would. And if I opted for the 90% treatment instead of the 100% then I would be neglectful. The problem is in this case the 100% treatment doesn't exist - its a phoney, con, sham whatever - but how is she to actually know this? Just because you (and sadmar) *know* this doesn't mean it's obvious to everyone else.
Conmen work by being plausible - they have actually fairly low success rate, so they cast a wide net on likely grups til they hook a sucker. Its not nice being a sucker, but it doesn't make you the criminal.

Look, I agree we all have responsibilites to our children, and must do what is best for them, and that includes some due diligence etc - and no doubt it seems this mother was rather quick to jump ship, but I really don't see how we can allow these kind of people to operate - indistinguishable as they may well be from 'real' doctors, and then blame people when they are taken in.
I do blame Clement for this situation - very clearly I blame him - without him and his actions there would be no situation, the child would be getting the chemo and possibly we would have happy ending.

Stop absolving him and treating him like he's secondary. Not everyone knows as much about medicine as you do - these bastards cast a wide net until they hit the right kind of mark, at the right time, in the right way and make a score - and they do that not by convincing people that they have *alternative* therapies they do it by convincing them that they have *an alternative* therapy - there is a difference - just like two real doctors sometimes prescribe different treatments - as soon as these people feel he is a 'real' doctor (and why wouldn't they?) then the course of action he suggests becomes just another reasonable possiblity to them. Thats why I see them as victims not neglectful - but I sense that basically as far as your concerned a wrong choice equals neglect.

Well, the parents aren't completely absolved in my view, but I really do find it strange that you just seem to pass over Clements very active role in this in favour of panning the parents.

The purpose for bringing the case to the court was to determine the parental responsibility toward a very sick little girl. Clement does not have guardianship of J.J.

You have been busy ranting about the itinerant charlatan's competence and not addressing the violation of J.J.'s right to have the most effective treatment for her A.L.L., which trumps the right of her mother to deny J.J. that treatment.

The State has the right, indeed the duty, to intervene and remove the medical guardianship from a parent who medically neglects her child.

I don't address these issues because I agree in toto with all that has been said about them on this blog - I have said this a number of times. I agree the child should have the chemo, I agree the state should intervene if the mother refuses it - I have not said anything different.

The only thing I disagree with is the characterization of the mother as 'medically negligent'. Perhaps 'medically incompetent' or some other phrase should be used here. Perhaps you can give me your definition of 'negligent' because mine requires *willfully* avoiding action, whereas
it is my belief that it is at least possible that this mother was in fact taking the action she thought was best, and that is not negligence, however wrong it is.

You seem to feel that by saying that I am somehow siding with the mother or something, I am not. There is however a difference between someone who causes harm to their child because they wilfully and knowingly do the wrong thing (or do nothing) and someone who causes harm inadvertently believing that what they are doing is the best thing. This is a bigger and more general problem with 'woo' which I am trying to discuss - namely that many of the people inflicting these things on there children seem to geneuinely believe they are doing the right thing. I want to know how they get to a point that seems to me (us!) so clearly wrong, because then we might have some chance of preventing it, and in this case it certainly seems fairly clear that the mother got there because of the direct intervention of a conman.
That I believe is perhaps the situation here. It doesn't alter the fact that the state should take remedial action to ensure the childs health and saftey to the best possible SB technique we have - but it does highlight that perhaps it would be better if the state took preventative action to not allow conmen anywhere near vulnerable parents of sick children.
I don't really know why you are objecting to that statement, or my focus on the person without whom none of this would ever have happened.

JCL:
Yes on #42. Let's talk about what 'what is to be done' rather than 'who is to blame'. The answer to the last question is pretty much 'everybody.' so if we want fewer kids to die, we look to things we might — in some hypothetical way at least — imagine could be changed. And indeed, here we land first and foremost at the door of "the system that allows the conman". I've been digging into Clement and the Hippocrates Institute for a couple days, and each new bit of info generates another facepalm to the effect of "how can anybody stand for this?"

And first on the list of inactive parties is the government of Florida which seems to have no regulatory apparatus at all: not laws, not oversight agencies, not police, not prosecutors. By terms of the legal system as I understand it, Clement and his associates should be serving life in prison. Clement is nothing less than a serial murderer, and after 34 years of cancer quackery, slipping the dying 'guests' quietly out of HHI so the other marks don't see what's likely to happen to them, I put the chances he actually believes in his wheatgrass cure and thinks all the deaths resulted because chemo or some other sbm thing destroyed the immune system or mucked up the innate ability to self-heal are slim and none.

The 'allowing system' isn't just government. Its also the medical profession, which should be up in arms against this guy, running him out of town on a rail, and more importantly putting pressure on governments as every level to put a stop to this sort of thing. Finally there is the business community, which basically embraces this death merchant as AOK because he's a successful merchant of something .

We could start by examining how apparently rational and well meaning people can end up making such horrendously bad decisions. When we understand that perhaps we can begin to work out what to do about it.

100% agreed. That's the position I've taken regarding other cases discussed here, and any assignment of 'blame' I have suggested or will suggest is not meant to negate that at all.

As for prosecuting J.J.'s parents, yeah I think that should be done, not out of some broad principle of 'taking your kid to a quack is neglect' but based on very specific details of this case. I certainly wouldn't advocate the law being hard on them (i.e. I certainly wouldn't want them to serve jail time), and there would need to be an actual crime first — i.e. J.J. would have to pass. i guess at this point we're all with Pastor Sault and his faith healer, hoping some 'Act of God' (i.e. random chance) let's these kids beat the very bad odds.

'Superior intellect' or 'greater knowledge' don't have anything to do with it. I think people get duped for the most part because con-artists exploit their psychological weakness. It's not that they're unintelligent or don't know things in general, but that they're inclined for some reason to think about X rather than think about Y. So, even if I say, 'they should have used The Google to do X,' that's a kind of abstract proposition because there is a reason they did not that does not involve any sort of malice. Just as turning J.J. over to Clement was 'a bad decision' not checking up on Clement first was 'a bad decision.' So yeah, the questions are 'why' and 'what to do' about it. And I do have sympathy for victims of cons. My mom, who was not at all stupid or uneducated was a sucker for all sorts of scams. I used to swear there must be some invisible hobo sign on our front door: "easy mark here!" It wasn't that I was 'smarter', just that as life had tumbled out for me, I was more tuned into those thing than she was. I was able to talk her out of a couple of them before she got robbed blind, but she'd fall for the next one anyway. Thankfully they weren't that financially draining...

Nevertheless, if we take a moral position that includes any notion of 'responsibility', such that we fault quacks for the harm they cause, and fault the system for allowing that harm to occur, it seems we ought to grant that being duped out of your own money is one thing, and being duped into letting your child die is another. 'What to do about it' remains a sticky question with no easy answers, IMHO.

In an imaginary, hypothetical realm where I could make such decisions, prosecuting J.J.'s parents could fall under 'what to do' for the following reasons. This is a 'the whole world is watching' moment, and taking the parents to trial would generate continued media coverage that would serve to inform people about the danger of quakery. Essentially I would put Clement on trial in absentia, making a 'they should have known if they didn't' argument by how thoroughly obvious the scam is to anyone digging a little. The trial would also put pressure on lawmakers in Ottowa DC and FL to do something about dangerous quacks. It would basically all be theater, and I might even seek to collude with the defense council in putting on the show.

My goal would be to secure a conviction that establishes a precedent that First Nations Rights to 'traditional medicine' don't moot a parent's obligation to keep their kid from dying — but then I'd ask for probation/suspended sentence whatever, to keep the parents out of jail. Then I'd play up the mercy/respect angle big time in a press conference with a warning that "if this happens again, the guilty parties are going to stir!" Or something.

Of course, this 'hypothetical' is basically scriptwriting, and IRL there'd be lots of other factors involved, of which we have no knowledge, so I don't know if that could happen or whether it would work.

Personally, I don't believe in retributive justice, attempting to balance some moral scale via punishment, establish some 'deterrent' blah blah blah. People should only be imprisoned when they present "a clear and present danger" to the community.

But, by all means, let's have more discussion trying to puzzle out why and how people get seduced into 'bad' choices, and what might be done to stem the tide.

"The State has the right, indeed the duty, to intervene and remove the medical guardianship from a parent who medically neglects her child."

Yes, in general, but First Nations people are only subjects of the Canadian State in some senses, while in others they are subjects of their aboriginal nation, as a matter of Canadian law. There is a very complex social/legal problem at work here. The 'state' that has the right and duty to intervene in custody is the Six Nations band, but they do not have an apparatus to do so because Canada has allowed them to establish one. Furthermore the FACS does not have an option to impose 'medical guardianship' as no such thing exists under the law. They can put a child into protective custody, but that severs the parents' guardianship completely.

As will eventually post in more detail, McMaster Hospital does bear great blame here. Canada does have a govermental body that can mandate treatment plans for a patient incapable of making their own decisions (e.g. an immature 11-year old with leukemia). It's called the CCB. It was McMaster's choice to seek FACS to take guardianship away from the parents completely, instead of seeking a treatment mandate from the CCB.

errr, "because Canada has NOT allowed them to establish one."
"As _I_ will eventually post" etc. etc.

Application of de jure law is always constrained by defacto situations on the ground. Once Clement got his hooks into J.J.'s parents there was nothing anyone could do to actually force them into putting her back into chemo.

By law, an FACS agency has to do an investigation before putting a child in protective custody. They can't just go grab the kid upon receipt of a notice of possible neglect, which is all a physician can provide. There's no mechanism for custody that doesn't put the parents on alert, and if they have the means and desire to flee the jurisdiction, game over.

'Should' and $2 Canadian gets you a cup of coffee at Tim Horton's.

JCL: The discussion on this thread is directed toward J.J.'s care, not the itinerant or homegrown charlatan(s) who are as common as dirt, and who prey on credulous individuals. If you want to notify the State of Florida about Mr. Clement's activities...then go for it...but it will have no impact on J.J.'s life-saving treatments, which her mother will not provide consent.

"The only thing I disagree with is the characterization of the mother as ‘medically negligent’. Perhaps ‘medically incompetent’ or some other phrase should be used here. Perhaps you can give me your definition of ‘negligent’ because mine requires *willfully* avoiding action, whereas
it is my belief that it is at least possible that this mother was in fact taking the action she thought was best, and that is not negligence, however wrong it is."

There is nothing in the court record to indicate that the mother is "medically incompetent or some other phrase...".

It's not how I define the mother's decision to deny her child life-saving treatment, it's how the law defines "medical neglect".

http://www.legalmatch.com/law-library/article/medical-neglect-of-a-chil…

"What is Medical Neglect of a Child?

Medical neglect is defined as a parent’s failure to provide adequate medical or dental care for their child, especially when it is needed to treat a serious physical injury or illness. In some cases, this can also include a failure to provide for psychiatric care if the child needs it. Also, some jurisdictions may hold other parties liable for medical neglect, such as custodians or guardians who have a legal duty to care for the child.

Medical neglect is generally considered to be a form of child neglect, and is usually listed under a state’s child abuse laws. Some jurisdictions require failure to involve emergency circumstances, but some courts may find medical neglect even in long-term, non-emergency situations...."

Perhaps you can give me your definition of ‘negligent’ because mine requires *willfully* avoiding action, whereas
it is my belief that it is at least possible that this mother was in fact taking the action she thought was best, and that is not negligence, however wrong it is.

Ergo, opting for prayer over medical treatment isn't negligent.
So long as it's what the parents think is best.

@lilady
I wasn't actually aware that the thread was so tightly constrained or indeed that you were the arbitor. Generally I see discussion on these threads moving around the issues and what it is directed to is whatever people happen to respond.

But I don't think I was particularly off topic - in fact here is the title:

An Ontario court dooms a First Nations girl with cancer: Who’s to blame?

I am postulating a clear opinon in answer to that question and trying to have an intelligent discussion about that opinion - which is not entrenched by the way, but certainly won't be changed by people calling me names or trying to shut me up because they disagree with me - though I'm not sure you are even making the attmept to understand what I am saying, let alone engage intelligently with it, despite it being a clear answer to the question posed in the title.

I understand that the legal definition of 'medical neglect' may be slghtly different from what I would consider the naive definition of neglect. Looking at that link I see this:

Ignoring medical recommendations by a physician with regards to a treatable condition
Failing to administer medicine to the child as prescribed by a doctor

The problem here is that of course there may be more than one opinion - perfectly reasonably in some cases. So it can't really mean what it says because if I have two mutually contradictory prescriptions from two perfectly respectable physicians
I have to choose one, and therefore not the other, and therefore by the direct wording of this must be neglecting my child.

Now I don't' think that Clements is a medical doctor, but I'm pretty sure that he can
produce them as required to give out his recommendations. Therefore by these definitions, if Clements produces a legally registered physician who recommends his treatments and you DON'T follow it, you are medically neglecting your child. You follow that I assume?
Again we come to this point - if there are two apparently (ie in their perception) equally valid medical opinions, then it is not neglect to choose the one you think is right - it is only neglect to choose neither.
So, either prove that Clements did not provide a medical recommendation from a doctor, in which case you are right in a formal legal sense, or you have to admit that by the wording here she was not negelecting her child.

In fact if Clements was the ONLY person she saw, and he produced a doctor that prescribed this treatment, then she would,according to this, be neglecting her child by not following that recommendation! There is also the problem that in some places quacks such as naturopaths are pushing or even succeeding in being officially regarded as physicians - that means that in a couple of years we could be looking at someone getting done for medical neglect because they didn't give their child a bleach enema as recommended by that 'physician' - and you will have to agree with it!!

So much for the legaleze - I think reading the actual law, and getting a legal opinion would be necessary. I concede that perhaps there is a formal legal sense in which she is negligent, but also in a formal legal sense you would have to prove inadequacy of Clements treatment, which might be harder.
But I am taking about actual culpability of the person, her intententions, her motivations and so on. I am talking about whether she deserves the opprobrium etc that comes with the label, or whether she too is a victim. In other words lilday, I am talking about the topic of the thread.

@sadmar I would like to respond, because I think its a very interesting and relevant topic, illustrated by this story. But I fear I have made the mistake of not parroting liladys opinion sufficiently and must spend my time rereading all of her posts on RI so that I am able to agree with her with more alacrity in the future

JCL: I apologize that you think in some way you are being picked on, that was not my intent. I agree something should be done about the quacks. However, with disturbing and distressing frequency more and more states are opting to give pretty much everyone who shows up carte blanche to open a pseudoscience 'clinic'. There is the abysmal regulation of 'supplements' which only require the oft lamented on this and other skeptical websites quack Miranda warning. Plus you have naturopaths, chiropracters, acupuncturists, and others who are gaining state credentials and opening up shops. We totally agree that it is wrong and should stop. Unfortunately these groups are well funded and well organized. And politicians are cowards. They don't want the controversy so they rubberstamp a bill to give them a license and send them on their merry way to fleece the public. We have railed against it, written our congress critters about it, blogged about it, educated our friends about it. I believe almost every regular commenter on these pages has done one or in most cases all of these things. But we are few, with few resources. And we face the mighty tides of government apathy or outright powerlessness (for example read the many tales of the Texas Medical Board vs. Burzynski). Clement is a charlatan and a crank. However it is doubtful that anyone in any position of authority in FL is going to shut him down. And even if they did I would bet you dollars to donuts he would have a new shop set up in 5 minutes flat. Probably in TX which has become Mecca for quacks the world over. We can do our best but we can't stop them without some kind of political will and at this point it seems sorely lacking.
I take some issue with your seeming support of the mother in this case. Yes, she has been conned. But here is the thing she let herself be conned. She went for the easy way out. You don't have to get very far in this life to begin to understand that when something is presented to be too good to be true that it is. I don't envy her situation it is truly horrible to have a child diagnosed with cancer. Even more horrible to know that they will suffer (for two years) through treatment that grown adults shouldn't have to suffer through. But at that point you have to be the adult you have to step up. You have to hold their hand, and reassure them, and be the parent. Because in the end your child will suffer and you will wish with all your soul to take that suffering into your own body and spare them the pain. But in the end you will have a great likelihood of holding your child in your arms. Your only other option is to be mourning at their grave. To me that's not an option. In this case when the parents were duped by a conman and wanted the easy way out the courts had the opportunity to do their duty and save this child's life and they failed spectacularly to do so. The only person who is going to suffer from this is a young girl who is too young to know better and too young to make her own decisions. And that is what makes me cry. The parents are misguided and deluded and they act out of love but that doesn't excuse it. It doesn't excuse the religious who don't believe in medicine only prayer, and it doesn't excuse those who want pseudoscience over medicine.

So much for the legaleze

That would have been a good choice.

I think reading the actual law

Which one would that be?

I concede that perhaps there is a formal legal sense in which she is negligent

Yah.

but also in a formal legal sense you would have to prove inadequacy of Clements treatment

How do you figure?

@Narad
I think that if someone believes truly that what they are doing is the best for their child, then it is in fact hard to construe them as negligent. Wrong, misguided and so on yes, but negligent, no. I do not believe in any religion, but apparently some people do and very strongly at that. So if these people are acting in a genuine belief that what they are doing is best I don't think they can be called negligent - dangerous, ignorant lunatics yes - negligent no. To my mind negligence is failure to act when it is indicated - and failure to act according to what you think is best - the most any of us can really be required to do. If someone acts in a medical situation by consulting a priest not a doctor because they think that is the best course, I abhor their action, but I do recognise it as an action with the right motivation.

Take the MMR thing again. Some people did not give their kids the jabs because they genuinely believed that there was an issue. They did not take the best action-with some tragic consequences - but they did take the best action as far as their information and perception of the situation and so on went - were they negligent, or just badly misguided?

What if the dodgy decision has been strongly affected by some baleful deliberately acting to confuse and mislead these people - is this still negligence?

This is really a matter of semantics - perhaps this whole 'negligent' thing is actually a red herring, though there does seem to be some sort of psychological thing going on here, where the mother absolutely must be labelled negligent, despite the clear mitigation of being conned - I donno why, maybe its just easier to see things in clear cut black and white or something.
Anyway it actually matters little what their motivations etc are for immediate practical purposes - if they are taking the wrong course of action in such a case then there should be intervention.
I'm not really interested in what we call the mother in this case - I am interested in how we characterise her actions though, and I personally think the active and critically important intervention of an extremely practised conman at the very least mitigates her negligence.

@Kirri
I'll respond in detail in a minute (I'm on fire tonight :), but this stood out:

*Yes, she has been conned. But here is the thing she let herself be conned*

You think? Put 'rape' in there instead of 'conned' and see how you feel about blaming the victim now

In for a penny.... This is U.S.-centric, but JCL's comments seem to lie in the realm of the abstract.

It should be noted that child neglect is a matter of state law. I just took a quick look at Connecticut's summary page, and it makes clear that intentionality is irrelevant.

That takes care of that one. Shall I proceed to the analysis of whether religious withholding of care is comparable to choosing a quack shack?

@Narad

Ok, well thats good and now I know something new and relevant.
As far as deciding whether the state needs to intervene that sems very sensible. I entirely agree that this is as it should be, as I think you'll find I have said.
But what about in the criminal sense? My question stems from the who is to blame part of the OP. I concede if you wish that when people have been using 'medical negligent' they may have been correct in a very legal sense as far as whether care should be foreced by the state. And of course the law has some relevance to the question. But I am really talking more ethically. I'm gonna try to distil the exact question.

A person is pursuing course A which we consider 'good'
A malevolent agent with evil purposes targets A with the intention of changing their course to B, which is to their detriment, and his advantnage
The agent succeeds

Thats the scenario, it covers (or is meant to be an abstration of) murder,rape,theft,conning,assault a huge range of scenarios.
At what point in this does the person become to blame for the outcome?

How for instance is Clements actions different in substance from theft and murder of her child? Someone mugs you in the street and steals your wallet whilst knifing your baby to death. This is your fault?

@Narad again - wrt Shall I proceed to the analysis of whether religious withholding of care is comparable to choosing a quack shack?

Yes please!

"I think that if someone believes truly that what they are doing is the best for their child, then it is in fact hard to construe them as negligent. Wrong, misguided and so on yes, but negligent, no. I do not believe in any religion, but apparently some people do and very strongly at that. So if these people are acting in a genuine belief that what they are doing is best I don’t think they can be called negligent – dangerous, ignorant lunatics yes – negligent no. To my mind negligence is failure to act when it is indicated – and failure to act according to what you think is best – the most any of us can really be required to do. If someone acts in a medical situation by consulting a priest not a doctor because they think that is the best course, I abhor their action, but I do recognise it as an action with the right motivation."

You're dead wrong JCL. Parents who medically neglect their children have been charged and convicted for their medical neglect:

http://whatstheharm.net/children.html

You do realize, don't you, that J.J.'s mother agreed to the treatment, which apparently did not conflict with her aborigine beliefs, practices or aborigine "medicine".

What type of aborigine "medicine" is used within that group? According to the Judge's decision, aborigine "medicine" was not part of the court record. In fact, the only mention of religion was some sort of folk lore about a sky woman...quite typical of the folk lore one hears about from other indigenous groups to explain natural phenomena.

J.J. was on her tenth day of the prescribed chemotherapeutic treatments, when her mother telephoned Mr. Clement, because she "heard" about the therapy (raw vegan diet), he prescribes for his spa customers in Florida. Two days later the mother withdrew her consent and J.J.'s prescribed chemotherapeutic therapy regimen was halted.

Newly elected Chief Ava Hill and the Six Nations Elected Council are elated because they stuck it to The Man by sacrificing Makayla and J.J.:

https://www.facebook.com/Six.Nations.Elected.Council/photos/a.282105425…

@Narad

second last paragraph of my #69 - you will see that this is in agreement with my previously stated views - just sayin' :)

@lillady
I am not in anyway saying that in all cases, or even in this case, people are not charged or shouldn't be charged with medical neglect. Where did I say that? If people are neglecting their children in any sense then damn right they should get done and the state should intervene.
But you are helping me clarify a little here. We all agree that the *intention* of the parents should not be part of the decision in respect to whether the state takes action, forces treatment etc.
What we do disagree with is culpability of people. I don't believe necessarily that this person, or other faith types, or even some more general woo types are in fact negligent in the standard sense of the word - or sall we just say not culpable- depending on many factors such as their beliefs (meant in a general sense).

Some of the people who need intervention have the right intentions but undertake the wrong actions. Some may have gone too far in their religiousness, some may just be intellectually challenged or have other issues, some may have been deliberately mislead. What they need isn't being labelled 'negligent' and criminalized - what they need is to agree action to learn/change, probably supervision.

So in a nutshell:
As far as 'medically negligent' in a civil sense, meaning requiring state intervention and so on. I agree
As far as 'medically negligent' in a criminal sense, meaning culpable, in this case I disagree.
We should intervn and force the treatment. We should attempt to help her understand why her kid is being given this treatment, and what a narrow escape she has had - but as long as the kid has the treatments I actually see no reason-in this specific case, I'm not making general rules here, for pursuing further actions against her (unless there is more to the story).

The involvment of the tribe and making this some kind of test case I view as being very pernicious, especially as it is not a traditional method. I totally agree that this aspect seems very screwed up. It seems that somewhere an opportunity was definiely missed on that basis. And to my mind strikes me as pure politics somewhere. I wonder for instance if Clements helped them to this lidea. I wonder indeed how he ever came to be there, I doubt he chooses his speaking engagements on a random basis. But why do you not see this as further mitgation for the mother? Did she stir up he chiefs? Or did they decide themselves to make this unfortunate person their political tool - and seriously - where was Clements in this process?

But what about in the criminal sense?

With the caveat that I have only recently paid attention to this thread, as it mostly seemed to be an exchange with sadmar, I am confident in stating that this comment is an attempt to change the subject.

@Narad

second last paragraph of my #69

What constitutes a paragraph is unclear in that comment. Let's go with what appears to be the ultimate one:

This is really a matter of semantics – perhaps this whole ‘negligent’ thing is actually a red herring

Then why on G-d's green earth have you been nattering on about it?

I think that if someone believes truly that what they are doing is the best for their child, then it is in fact hard to construe them as negligent.

Which is to say that there is nothing to "construe," the word has no meaning.

But why do you not see this as further mitgation for the mother? Did she stir up he chiefs? Or did they decide themselves to make this unfortunate person their political tool – and seriously – where was Clements in this process?

This is seriously the worst example of JAQing off that I've seen in ages. Try passing Go before aimlessly pondering the value of building a hotel on Marvin Gardens.

@Narad
How so? The question in the title was Who's to blame?

No-one seems to disagree that the state should have intervened, that the tribal politics bit seems a bit screwed, that there have been failures in many places. I would say I was giving the thread relevant body.

btw I must also humble myself by admitting that I have been wrong about the exact meaning of 'negligent'. I see now that it probably doesn't generally imply the intentionality that I'm giving it. I suppose it doesn't help trying to get my point across - sorry..
However, my point isn't actually about the meaning of words its about the attribution of blame in this case. I see this child and her mother, at least to some degree, as victims.
I see her failure as the failure to be properly equipped intellectually to deal with making a critical decision about her sons life made more difficult by the fact the the whole situation, starting with their being any decision to make at all, and progressing through lies and deliberatel false statements actually designed to decieve her. And decieved she has been.
Now I don't know every full detail here of the whole process of course, but in so far as the scenario is like I have describbed, I hold the mother blameless.

@Narad

Ok fair enough I'll stop nattering defeated as I am by the completeness of your answer. Good point, well made.

You know when I started commenting on this thread I believed that the question of how much the mother was to blame, especially given the active role played by Clements, and there being the characteristics of a con in place, was both relevant, exactly on topic and would possibly lead to some interesting discussion.

epic fail

@Narad #77

Fair enough on the formatting. You took the last pararaph, but completey failed to look at the section:

'Anyway it actually matters little what their motivations etc are for immediate practical purposes – if they are taking the wrong course of action in such a case then there should be intervention.'
which is clearly of direct relevance to your #71

And
'Which is to say that there is nothing to “construe,” the word has no meaning."
Huh? Which word? Yes, grammatically correct would have been 'construe their actions' rather than 'construe them'.

Nitpicking grammer,sematic quibbling,sophistry and paragraph formatting! You certainly are a formidable force to oppose.

I put my new post on 'who's to blame' on the Friday open thread.

http://scienceblogs.com/insolence/2014/11/21/off-to-skepticon/#comment-…

There's actual information in it that hasn't been posted on RI, should anyone be interested in the facts. I share opinions, of course. Feel free to disregard them as usual.

JCL: lilady and Narad are dogmatic. They think what they think, and express themselves in ad hominem mode. You never have a point. You're just wrong, stupid, heartless, arrogant, stupid, dishonest, stupid. Did i mention stupid. They don't do 'discussion'. They are who they are. This is an open forum. They get to write what they like. So do you. If you want to reply to them, that's your choice. (I try not to. The feeling's mutual, i'm sure.) You're not going to get dialog. But a barb may have it's utility, definition of negligence etc. a valid point buried in the venom and the nit-picking. Narad's knowledgable about legal stuff, among other things. But if you're not 'in' with a certain long-time RI circle, everything you write is going to be taken with the least-charitabe assumptions possible, e.g. that you using interrogative sentence form "to make wild accusations acceptable by framing them as questions" (I didn't now what JAQ was and gad to look it up) not because you want to indicate "well, this is what I think, but I'm not sure and i might be wrong."

Especially wrtiing in these little text boxes, I know I'm likely to frame something as a rhetorical question or joke at one point (i.e. intended as firm statement) and then a few lines down frame something as a question because i sincerely want to ad a qualifier to the thought, because I really don't know. And I'm sure it's difficult for readers to pick up the difference without the tone of voice that would clearly distinguish the two in meatspace conversation.

Most people have some sort of hot-buttons that set them off. lilady definitely has a hot-button for anything that can be remotely interpreted as sympathetic to parents who cause any sort of harm to their child. She sees this as making excuses for unforgivable sin, a moral abdication that can only be met with outrage. My problem with that is I see outrage as having zero utility in any effort to prevent similar harms in the future.

btw: It's 'Brian Clement' no 's'.

To the discussion:

What I see in the thread above is words that can mean different thing, or encapsulate different degrees of similar thing, being interpreted differently by different people. E.g. I take what you mean by 'blame' to be different from i meant by 'blame.' And my guess is there are different meanings AND degrees of 'negligence' being referenced as well, now somewhat cleared up by Narad's note of the legal definition in CT. But 'negligence' may be a more philosophical concept, in which do/did define it around a component of intent, while lilady does not. Not to facilitate JAQ-ing, but I'd suggest clarification requests might be more productive than making assumptions.

I see her failure as the failure to be properly equipped intellectually to deal with making a critical decision about her sons life made more difficult by the fact the the whole situation, starting with their being any decision to make at all, and progressing through lies and deliberatel false statements actually designed to deceive her.

Can you clarify what you meant by "properly equipped intellectually"? That could be interpreted as pretty demeaning.

Regardless, the word "failure" in "failure to be equipped" suggests one could also succeed in being equipped. Thus, once malice is removed from the definition, I'm having trouble distinguishing your description from 'negligence.' Perhaps you and lilady might agree that by using Narad's definition in the non-legal/philosophical sense the parents' decision to pull J.J. from chemo falls under 'negligence' but disagree about the severity and what consequences, if any, might be in order.

"Now I don’t’ think that Clements is a medical doctor, but I’m pretty sure that he can produce them as required to give out his recommendations."
Highly unlikely. I've been reading up on him. This is not your typical Alt-med practitioner that can get a real MD to front for them. This guy is Murder, Incorporated.

"No-one seems to disagree that the tribal politics bit seems a bit screwed,"
The politics are very screwed, but that is not the fault of the band (I guess that's the Canadian usage, and they don't say 'tribe' as we do in the US).

"Making this some kind of test case I view as being very pernicious."
Not really. It was McMaster that made it a test case. They had no malice toward J.J. certainly, if that figures into your defininition of 'pernicious.' They had a failure to be properly equipped intellectually to deal with making a critical decision involving custody of a First Nations child, or to be more precise the process that would take place once they set a custody issue in motion.

Yes, Clement specifically targeted this group. I don't know whether he was just targeting The First Nations, or whether there were other ripe marks in that part of Ontario. But it's a good bet Clement knew something about the mistrust of white institutions, including hospitals, among the native population and cynically chose to exploit that. He's the worst racist in the bunch. I have gotten the impression that the Six Nations and New Credit bands are not exactly impoverished. A similar mistrust of hospitals probably exists in poor African-American communities, but being poor they wouldn't offer Clement the profit potential so he headed North.

The parents didn't the lead the chiefs, and the chiefs certainly didn't lead the parents. The chiefs might have been dragged along by the Sault family, as dad's can be assumed to have a certain influence as the Church Pastor in New Credit. The parents were led by Clement. The chiefs were making the best out of a bad situation. By the time they were drawn in, the kids were as good as dead, unfortunately. Clement had the parets, the parents had the kids, they were all in Florida (or could be) no one was letting go. Bad deal all around.

@sadmar

Thanks for the information.I hadn't researched the tribe matter (wasn't that relevant to the point I was trying to make), and it seems to have a different complexion than I thought, fair enough. It did seem to me likely that Clement didn't just arrive there by accident - so really the mother was
compassed by an evil scheme that she had no knowledge of before she ever heard of him.

I personally think here is a valid question here and it doesn't make me a monster for asking it. It seems pretty relevant to the OP question and the whole disucsison viz a viz woo and mothers who practise it on their children, namely (for about the 8th time):

If a person is deliberately targeted by someone intending to deceive them, and they are deceived, to what extent are they to blame for the consequences of that deception?

I can see there can be different view points - I was hoping to elucidate some of them, turned out to be hard work! Lilday and Narad seem to think that its simply caveat emptor and have no problem allowing these con artists to operate and target vulnerbale people - its simply your fault if your conned. I was genunely surprised to find this reaction on this blog.

Re the phrase '“properly equipped intellectually” I was trying
to express that her whole mental aparatus, her logic, knowledge, understanding of science, presence of mind, crticial thinking etc, cultural context, whatever aspects are required, has suffered a failure of some sort to allow her to be conned in this manner. It wasn't meant to be demeaning per se - but unfortunately in cases of being caught up in cons there usually is some failure - even just the failure to 'see the obvious that everyone else sees'. In this specific I off course don't actually know what the factors were. Its not meant to be demeaning per se, but I was struggling to find yet another way to express the same thing. However, the fact is being caught in a con can leave a person feeling pretty stupid and humiliated when it is revealed to them, and in some respects it is a demeaning thing in and of iself. However, that in no way makes it the victims fault.
And yes I have agreed that 'negligence' in the sense used by lilday is right, and tried to focus on the question of actual malice. ie I agree that intentions have nothing to do with negligence - always did as far as taking civil action was concerned, but the point here is not about what word should be used (though I agree it would help if I was able to say what I meant with more precision), but to what extent the deliberate actions of the conman modifies the mothers 'blame' - especially, most especially in this case that without Clement intervention, the whole thing would never have happened. Thats pretty good reason for saying 'Clement caused this situation'.

To what extent the mother is can actually be said to be fault here I don't know. I think it would need detailed investigation and a judge to eventually determin that. Basically the list of 'blame' you wrote on the next thread seemed about right to me.

Oh and btw - thats interesting that you think Clement doesn't have some medical doctor in his pocket. I looked at his clinic site and could only see one guy who might be some form of medical doctor, as usual it hard to get facts.
If he did not in fac have a medical doctor to basically recommedn his treatment, then that probably does shift things a little against the parents. It certainly does shift things badly against the authorities in general (who already appear rather incompetent and appear to have had several failures at multiple levels) - if there can't even be said to be some form of 'differing opinion between doctors' then the whole medical neglect thing becomes much clearer legally (already pretty clear scientifically to most of us).

JCL: Your initial premise that it's hard for people to know who's a real doctor kind of moots the necessity of a quack to have a real MD as a front. Everything about Clement is deception. Naturopaths refer to themselves as NDs. Clement claims to be an NMD. Now, putting that M in there is clearlt meant to muddy the waters, which is why actual naturopaths don't do it. They want to be accepted a legit on their own terms. But then Clement isn't even a real naturopath. He bought his 'NMD degree' from a diploma mill. So from the parents' points of view it could still be a '‘differing opinion between doctors’.

But the parents' choices are still a bit weird, though we don't have enough details to explain them. If we propose that as First Nations folks, they have a distrust of white medical insiitutions, why would they embrace a white guy from Florida uncritically even if they can't tell a fake doctor from a real one. You'd think they'd be suspicious of any paleface promises. (?) But then, this all started with the Sault family, whose identity may be more defined by Evangelical Christianity than by aboriginal heritage. So they could have been seduced more by an appeal to faith, belief in God's miracles.

Unlike J.J., who is reportedly immature, tentative, and defers to her mother whenever asked a question, Makayla Sault evidences her own will, and speaks firmly for herself. What also appears under-reported as the case has gone forward is that Makayla was having severe side effects from the chemo that had put her into the intensive care unit. She felt the chemo would kill her before the leukemia would. So she made pleas to God. Sonya Sault said "I remember I would just watch her, and listening to her pray, ‘Oh, God. Come and get me, come and take me from here'." Then Makayla reported a vision of a long-haired man appeared in her hospital room:

I asked him, ‘Can you heal me,’ and he said, ‘You are already healed,’ and he held out his hands to me and I saw the holes in his hands and I knew that it was Jesus. And he told me, ‘Do not be afraid.’ So if I live or if I die, I am not afraid. God the creator has the final say over my life."

By all reports, the chemo withdrawal was Makayla's idea. She asked her parents to take her out of the hospital. She'd been in intensive care. She said she saw Jesus. What would anyone expect Evangelical parents to do?

Sonya Sault told reporters what the McMaster Dr.s had said about taking Makayla off chemo. They'd cited a 75% survival rate for Makayla's condition, Her doctors told her family that she would have a 75 per cent chance of survival, and, “They basically said she would have 100 per cent relapse and she would die if we discontinued chemotherapy. And that going the route of traditional medicine has zero per cent success rate." Which is why I said earlier they knew the choice could be fatal.

So my guess is it went something like this: the Dr.s hadn't warned the Saults about the level of side effects Makayla experienced. When she went into intensive care, they bagan to question the Docs. The kid said she believed she was dying from the treatment, had prayed to God, and Jesus had appeared in answer to her prayers. So the devout parents aren't just looking for a miracle, they're expecting a miracle.

So they say they're going with traditional medicine because they have to say something. But the 'traditional healers' in the community are probably well known to them, and if they thought those healers were All That, they probably wouldn't have had Makayla in McMasters to begin with. Besides, as Christians, why would they have faith in 'healing' concepts based in pre-contact aboriginal theology? So I think it's just an excuse to justify meeting Makayla's request to get out of chemo, and wait for a miracle.

Enter Brain Clement. He appears out of nowhere, promising 100% cure with no side-effects whatsoever in as polished a presentation as a veteran con man can. He shows slides of HHI in West Palm. It doesn't look like a hospital. It looks better than a hospital. Maybe that looks to the Saults as the sign from God they've been expecting. Maybe Evangelicals don't double-check signs from God.

J.J.'s case seems to have a different dynamic entirely. The National Post had called McMaster's decision to refer Makayla to Brant FACS into question and argued the case should have gone to the CCB two days after FACS closed its investigation of Makayla and announced it wouldn't seek custody. So the whole CCB vs. FACS issue was in the public discussion well before McMaster referred J.J. to FACS, making that choice seem all the more bizarre,

We know a lot about the Saults from press reports. We know little or nothing about J.J. and her family. Those details could move any sort of evaluation of her case quite a bit, one way or another. E.g. was the chemo making her as sick as it had Makayla? What are these parents beliefs?

I have the feeling we're nowhere near the heart of the onion.

@sadmar

So we could say they were predisposed towards looking for something miraculous, and of course going through an emotional crisis. In other words exactly the kind of mental state that leaves them open to professional manipulation.
Clement finds a likely spot to cast his nets, and even though it might have huge holes in it, at least some of the fishies are attracted to the shiny baubly bait and get reeled in.

I expect that Clement like any good business man does his research on likley markets - in his case those might be any group who might be slightly more predisposed to 'woo' or have 'prescientific practises' as still some active part of their lives, who have perhaps some trust issues with general authority, and are potentially able to generate a bit of cash. Them being in a jurisdiction that might allow them to circumvent bothersome legal restrictions on what they can do to their children is certainly a bonus. I wonder how easy it would be to try and track his speaking engagments, or other marketing - have other native americans been victims?

Btw I see this characterzation of the band as being distrusting of *white mans medicine* or similar - and noting the irony of them falling for a white guy - I've seen that a few places on this thread.

Is that actually how the band themselves characterize the situation? I just wondered, because it seems almost like the projection of a (racist?) stereotype onto them. ("Me indian have strongeum medicine than pale man")

Isn't it possible that they are actually more politically sophisticated and modern and its actually just Government and Authority that they have a probem with, especially in regard to the upbringing of their children - and they have moved on from an essentially racial viewpoint on this?

‘Which is to say that there is nothing to “construe,” the word has no meaning.”
Huh? Which word? Yes, grammatically correct would have been ‘construe their actions’ rather than ‘construe them’.

Negligent. If you are going to say that "I think that if someone believes truly that what they are doing is the best for their child, then it is in fact hard to construe them as negligent" (while, as far as I can tell, arbitrarily excluding doing nothing regardless of belief), then you have stripped the word of meaning.

Nitpicking grammer,sematic quibbling,sophistry and paragraph formatting! You certainly are a formidable force to oppose.

I am not the one who elected to personally redefine a legal term. That is not semantic "quibbling" or "sophistry." You would have done better to have simply stuck to this from the outset:

I see her failure as the failure to be properly equipped intellectually to deal with making a critical decision about her sons life made more difficult by the fact the the whole situation, starting with their being any decision to make at all, and progressing through lies and deliberatel false statements actually designed to decieve her. And decieved she has been.
Now I don’t know every full detail here of the whole process of course, but in so far as the scenario is like I have describbed, I hold the mother blameless.

This would have made clear that the position you were advancing – in the context of a court decision – had no bearing on the law.

Isn’t it possible that they are actually more politically sophisticated and modern and its actually just Government and Authority that they have a problem with, especially in regard to the upbringing of their children – and they have moved on from an essentially racial viewpoint on this?

That's my reading of the chiefs, Judge Edward, and (just guessing) most of the community. Thus, my thought that 'trad med' is but a MacGuffin here. In that sense 'white' and 'aboriginal' now function largely as figurative references to uneven distributions of power. If you look at the statements by the chiefs, they say things like "We're not going to let them take our children away again." That is the use the general pronouns. They don't say "We're not going to let the whites take First Nations children away again."

To any extent First Nations folks may see things in racial terms, that's likely largely a reflection of mainstream society's conceptions of 'race' and policies reflecting that concept.

As I noted back at #19, Native Americans in the U.S. didn't really begin to see themselves as part of any unified racial identity until the mid-19th century. The Mdewakanton thought of themselves as Mdewakanton first, and Dakota second. They would have understood the Lakota as similar, but not the same. Cheyenne or Chippewa? No connection. This is reflected in Little Big Man where the Cheyenne word for 'Cheyenne' translates as "The Human Beings." Other tribes were not "Human Beings".

So, yeah the distrust of McMaster wouldn't be because it's literally 'white.' It's a lot more complicated. But the point remains that however the bands might identify themselves, I don't see how Brian Clement fits. So I'm still thinking the Saults vulnerability was way more a fundie Christian thing than a First Nations thing.

And yes, I think this would have t figure into any moral judgement one might make of the Saults. But the legal case is about J.J. We don't know what her parents's beliefs are. We don't what J.J.'s beliefs are, if she has any of 'her own' in the sense Makayla does. We don't know if J.J.'s chemo had put her into intensive care, or was just routinely painful.

I'm pretty sure, though, that when J.J.'s parents pulled her from chemo. Makayla had returned from Florida, was in high spirits, proclaiming herself 'cured. The leukemia had probably been knocked back by the chemo, and no longer on the IV nasty, she was feeling great. Post hoc fallacy: it must have been the wheatgrass! So maybe J.J. was just the next domino. Maybe more will be revealed... who knows?

^ Although it should be noted that what you've mostly been talking about is neglect, which related to – but not the same as – negligence. The latter is a cause of action after an injury; the former is a basis for state action to prevent injury (as well as to prevent further injury, but that's not what this case is really about).

Seeing Narad's boldface #87 I speculate JCL may have fueled the fire by using the apparently unequivocal 'blameless'. Legal definitions and judgements aside, while on a philosophical basis I'm willing to cut the parents some slack for a variety of reasons, 'blame free"? No. It seems to me that no matter how devout a 10-nyear old may be, a kid that age isn't competent to make her own decisions, and parents have some responsibility to look beyond dogma in a decision qualified experts have told them is a matter of life and death. I'm not prepared to say how much, but it's not zero.

I'm trying to read this discussion with JCL and though I can see the mother was neglecting what was best for her child, I still fail to see much difference with a parent that falls for mr. Burzynski's scheme. In both cases there is a so-called doctor, pretending to be able to cure a disease, and in both cases there is a parent seeing a child suffer and wanting the best treatment. The only difference is that in this case, there is a treatment that has been proven to work and with mr. Burzynski, there isn't.

Renate, there seems to be a vast difference between J.J.'s case where the physicians at the McMaster Children's Hospital, and the well- were able to provide J.J.'s mother with the provable data that the particular type and staging J.J.'s A.L.L responds to chemotherapeutic drugs....as opposed to Burzynski's free-standing clinic without hospital affiliations, without any qualified physicians who are trained in pediatrics, pediatric oncology/hematology

Sorry for the double post...I must have hit the "Submit Comment" button too soon.

Renate, there seems to be a vast difference between J.J.’s case where the physicians at the McMaster Children’s Hospital, who are well-trained pediatric oncologists/hematologists who were able to provide J.J.’s mother with the provable data that the particular type and staging of J.J.’s A.L.L, responds to chemotherapeutic drugs….as opposed to Burzynski’s free-standing clinic without hospital affiliations, without any qualified physicians who are trained in pediatrics, pediatric oncology/hematology and the especially false hope they raised for pediatric and adult patients who have intractable-to-treatment cancers.

Burzynski is a licensed medical doctor, as are his son and the other doctors who work for that clinic. Mr. Clement possesses at N.D. certificate from a diploma mill, whose only "consulation" appears to be a short telephone conversation with J.J.'s mother....yet Judge Edward labeled the vegan diet and some positive thinking mumbo jumbo as evidence that J.J.'s mother is following tribal religious practices.

J.J. and her parents were offered every conceivable service which we have come to expect from a terciary care children's hospital, close to home...as opposed to the downright shoddy care offered at Burzynski's clinic, where the recourse is to haul the patient in a taxicab to a hospital for admission to try and revert the dangerous hypernatramia, caused by the anteneoplastins which Burzynski prescibes to his patients and other chemotherapy drugs which have no proven record of putting patients in remission...or curing those patients. He also only makes those other drugs available through the pharmacy he owns....jacking up their costs to further fleece patients.

Clearly J.J. has been victimized by her parents' medical neglect. If those parents don't bring the child into McMaster (or another hospital) to continue her treatment, she is going to die as a result of that medical neglect.

@Narad etc

Actually I didn't introduce the discussion of the actual legal terms - and I have admitted now several times that I probably have put too much on 'intention' in my original definition of 'negligence', and I have said many times that what I am intersted in generally is:

If a person is deliberately targeted by someone intending to deceive them, and they are deceived, to what extent are they to blame for the consequences of that deception?

and then how whatever the answer to that question applies to this specific case. I find this interesting not least because I'm not entirely sure where exactly I stand on either the general or the specific, and I was under the impression that perhaps people on this blog might be able to help me clarify the issue and the answer.

It doesn't seem like that hard a question to understand, and I think that anyone reading my posts with the intention of trying to understand what I am saying would understand that -though they might admittedly have to contend with some dodgy language useage, and yes in trying to get my point across against a vertiable wall of abuse I have made the mistake of getting into semantic arguments that were, from the point of view of what I am trying to discuss, a bit of a side issue.

Narad you seem to be reading my posts simply for the purpose of finding some semantic quibbles,grammatical nitpicking and so forth, whilst skipping over the content. I'm sure that someone with your intelligence could *choose* to put that effort into trying to understand the point instead of simply trawling through them looking for examples of my misuse of language etc, but you have chosen not to, for reasons I know not, but certainly it diminishes you in my view.

So lets agree that I'm not very good at English, not very good at constructing arguments, in fact generally pretty stupid - lets take that as read. So won't you help the poor ignorant confused person understand the question as posed? Or are you going to once again trawl this post just to expose my grammatical inadequacies?
If your not interested in the question I'm posing, and since you clearly think I'm an incompetent dickhead, why are you even bothering to spend the time replying? Why don't you do something constructive like help me to express myself properly, elucidate the question clearly, or at least give me a clear understanding of why in your view the fact that *at least to some extent* this person has been victim to a conman, you don't feel that *at least to some extent* this mitigates her blame for the situation?

JCL: The subject of "medical neglect" was brought up at the top of the thread and you had ample opportunity to find out for yourself what constitutes "medical neglect"...and you didn't.

When Narad and I linked you to the legal definition of "medical neglect", you apparently do not think that applies in the case at hand. You've come up with a new definition (medical incompetence), to explain the parents action for denying their child a 90% chance of survival.

Nothing that I have stated and nothing that Narad has stated are ad hominem attacks directed at you. When you come up with a cogent argument that mitigates the parents' medical neglect, feel free to state it.

@lilady

Indeed, I made a mistake in the definition of 'medical neglect', thinking that it implied more intent than it does. This error has confused the point I was trying to make. I have held my hands up to this mistake numerous times now.

However:

'When Narad and I linked you to the legal definition of “medical neglect”, you apparently do not think that applies in the case at hand.'

This is simply untrue. I have acknowledged my mistake and most clearly many times said that I absolutely believe that it *does* apply to this case - in fact I agree in toto with almost all your statements in content (I have already said this), and stated this many times also. I believe the state should intervene (already said it numerous times), I believe the state should have intervened earlier (already said it numerous times). I completely believe that in this situation and other like it the state should interven whatever the motives etc of the parents. Said that also many times. I completely concur with:

"Clearly J.J. has been victimized by her parents’ medical neglect. If those parents don’t bring the child into McMaster (or another hospital) to continue her treatment, she is going to die as a result of that medical neglect."

I therefore have no argument about there being mitgation for their 'medical neglect', since I now understand that 'medical neglect' is really an objective statement of the situation and involves no judgement on their intentions or any other factor - I'm not even sure that it is the kind of thing that can even be said to be mitigated. If you should do me the favour of actually reading what I have written, you will undertsand that my point has nothing to do with what should happen viz a viz the children, or what should have happened. I regard these aspects as pretty incontroversial. I have said very explicitly that I don't believe practises of any sort that bring harm to a child should be allowed.

So, are you going to keep beating me up for a past failure - now admitted, corrected, and much regretted and attempt to address the question I have posed?

That question has nothing to do with the definition of 'medical neglect', or whether they can be said to be neglectful, which obviously they are, it has to do with actual fault, blame,guilt etc, on which I think the large part belongs to the conman not the conned.

You may have a different opinion on the matter - I would like to hear it and your reasoning. I think it is an important and potentially difficult ethical and moral issue, which this case highlights.

The conman is not a doctor and under the law does not have the duty to provide care (or agree to the provision of care), that J.J.'s parents have. That, after all, is the crux of the matter.

You raise extraneous issues about the conman and other conman (Andrew Wakefield), and have redefined "medical neglect" as "medical ignorance", in a feeble attempt to defend the parents' medical neglect of their child.

The first story of the unnamed girl that i read was full of PC hooey. Some of the blame goes to the ridiculous sjw mentality that is getting out of hand in Canada.

@lilady

Of FFS.
"That, after all, is the crux of the matter." Its the crux of the matter that you want to talk about - and it seems that you want to constrain anyone else from talking about anything else - its not the crux of the perfectly relevant question that I am trying to discuss. Do you set the agenda round here? If you think its OT or something (its not as faras I can see) why keep replying?

"have redefined “medical neglect” as “medical ignorance”"
Have done no such thing - did you even read my last post? At the point of saying that I was mistaken in my belief of what 'medical neglect' meant and was seeking for a phrase that implied the lack of care without necessarily intention to have lack of care. I have been corrected by yourself and Narad, I have moved on - can't you?

"in a feeble attempt to defend the parents’ medical neglect of their child." Defend? No - I don't defend any kind of neglect.

Understanding how the neglect has arisen, what steps led these people to make these horrendous decisions for their children, that is what I am after doing. I am interested in this sort of thing never arising again - I am beginnning to feel that you are quite happy for it to continue to happen as long as you get to be first in the queue for crucifying the parents

I am not that interested in 'legal duty of care'. Of course the parents have such a duty. The parents were failing in that duty. The state should have intervened to ensure the safety of tha child.
What interest me here is that JJs parents seem to have failed in their duty, in some part due to the intervention of a deliberately lying conman.

He is not extraneous - he is in my view central - you may differ from that view (for some reasons that you choose to keep hidden), but I really, really don't see how holding that view is a matter for vilification - and frankly
except for Sadmar, who does seem to understand what I am talking about - I see no rational engagment from you or anyone else with the question at all.

FFS, indeed JCL. You chose to believe that the parents were duped by the White conman from Florida, when we have proof that the mother sought him out by placing a call to the conman, after J.J. had begun her therapy. The conman definitely does not practice tribal medicine and the parents definitely do not adhere to tribal medicine when they follow the conman's raw vegan diet, cleansing enemas and "thinking good thoughts".

Judge Edward was supposed to evaluate tribal medicine, which he did not, before he issued his decision. The tribal leaders, used both cases to score political points against the Canadian government for past grievances and none of the political leaders has spoken out on behalf of Makayla, who is now dying and on behalf of J.J., who most certainly will die...both human sacrifices to tribal politics.

"He is not extraneous – he is in my view central – you may differ from that view (for some reasons that you choose to keep hidden), but I really, really don’t see how holding that view is a matter for vilification – and frankly except for Sadmar, who does seem to understand what I am talking about – I see no rational engagment from you or anyone else with the question at all."

Heh. Are you accusing me of having a hidden agenda because I don't dwell on the conman...when the court case did not address the conman at all?

I suggest you back off your defense of the medically neglecting parents which is, in fact, the crux of the matter...and the reason why Makayla and J.J. will die.

@ pat: It's all PC hooey, when parents from a minority group uses past grievances as a shield, to deny their child life saving treatment.

@lilady

"I suggest you back off your defense of the medically neglecting parents" Again with the false characterization of what I'm trying to do or anything I have said.- I am only trying to have a discussion about a certain issue. Thats the only thing I'm trying to do - have a discussion about one particular aspect - an aspect that has struck me in a certain way, and soliciting views on that aspect.

Am I not entitled to express an opinon or point out something that seems of relevant interest, or solicit discussion, just because it doesn't happen to be the exact way you want to discuss it, or your view is that its not important enough, or whatever?

"Are you accusing me of having a hidden agenda because I don’t dwell on the conman…when the court case did not address the conman at all?"
No. Don't know how you read that. Look, I see that you view the essence of the matter as being about a court case, actions of a judge, the bands and other actors, what shoud have happened wrt the childs welfare - you see Clement as pretty irrelevant really as far as that goes.

Fair enough, as far as I can see I agree pretty much in total with just about everything you've said on all these matters. I've told you that already.

The only real difference is that I happen to think Clements involvement in certain aspects is more central. Thats my view - but even if he is really quite periphery to the issue, why am I not allowed to focus on that aspect if I want? If everyone thinks its irrelevant, then I just won't get replies and thats the end of that.

Ironically, your last post almost contains what would be a plausible answer.

"You chose to believe that the parents were duped by the White conman from Florida, when we have proof that the mother sought him out by placing a call to the conman, after J.J. had begun her therapy."

Well I don't actually choose any belief here - being fully aware that I am short of facts - in fact we all are.

You propose you have proof that she saught him out rather than vice versa - well thats relevant information pertinent to the question - its not an answer to it, because theres a general scope to the way I have phrased it, but as far as the specific case goes it is certainly relevant to what extent marks are pulled rather than pushed.
Bt we'd also have to discuss th fact *that he confidently assured her thtat he could cure her child*. That bit is the con going in, and I personally would like for instance to hear from some of the pschologically trained minions hereaouts about the effect of confidently presented, opimistic and reassuring statements presented to people who are predisposed to believing it.
If that topic doesn't interest you, or anyone else, why not just leave it alone - no-one here is trying to justify parental negelct.

However, my point isn’t actually about the meaning of words its about the attribution of blame in this case. I see this child and her mother, at least to some degree, as victims.

Who is blaming the mother? Let me remind you of your first comment:

There seems to be a lot of opprobrium on the parents here.

Where the hell was it? In the 25 preceding comments, the only thing close was this statement by lilady:

The parents are medically neglecting their child because they cannot, or will not, deal with the realities of their child’s cancer diagnosis. They’d rather stay in denial and deny their child the only chance she has for long term survival.

The first sentence is unquestionably factually true, leaving the second as the "lot of opprobium" that you stepped in to correct. Since then, you have gone off on a fruitless tangent, complained that nobody's heeding your insistence that your bland observation "lead to some interesting discussion," and done nothing else that I can discern.

Gah, cat-on-arm strikes again. I'll just repost, and if Orac sees this, he can flush the comment from "Marad":

However, my point isn’t actually about the meaning of words its about the attribution of blame in this case. I see this child and her mother, at least to some degree, as victims.

Who is blaming the mother? Let me remind you of your first comment:

There seems to be a lot of opprobrium on the parents here.

Where the hell was it? In the 25 preceding comments, the only thing close was this statement by lilady:

The parents are medically neglecting their child because they cannot, or will not, deal with the realities of their child’s cancer diagnosis. They’d rather stay in denial and deny their child the only chance she has for long term survival.

The first sentence is unquestionably factually true, leaving the second as the "lot of opprobrium" that you stepped in to correct. Since then, you have gone off on a fruitless tangent, complained that nobody's heeding your insistence that your bland observation "lead to some interesting discussion," and done nothing else that I can discern.

So,
'There seems to be a lot of opprobrium on the parents'
'seems' indicates my perception - if it is incorrect then something like:
'JCL I think you are mistaken that there is a lot of opprobrium against the parents' - would have been an answer. Your right maybe its simply subjective view. Coloured no doubt substantially by the fact that I feel personally some anger and disgust to the parents. Funny how no-one has conradicted me and said this - so are you actually saying that you and lilady feel no anger whatsoever against the parents - you don't feel disgusted by them, not even a little bit?

'Since then, you have gone off on a fruitless tangent'
Whether its tangential is debatable - I don't think so, you do - apparently round here its simply not allowed to disagree with you about what might be relevant or interesting to discuss. It is certainly fruitless now - even if anyone wanted to put in some form of actual reply you and lilady have made it pretty plain that thy will be clubbed to death for their temerity in having an opinion or wishing to discuss something not sanctioned by you.

"complained that nobody’s heeding your insistence that your bland observation “lead to some interesting discussion,"
I've mainly complained that my apparently bland,tangential, uninteresting and irrelevnat obvservations are being made the subject of a major shutdown operation - and you know what? I can't even figure out why you regard it as so objectionable.

So, obviously you guys have nothing better to do than spend time reading my posts purely for the purpose of 'catching me out' rather than with any attempt to actualy engage.

I am struggling to understand what you think my motives here are, or what you think you are catching me out at.

I don't think one sentence that you or lilady has written have addressed any of the substance I'm trying to get across, and you have completely failed to give me any idea at all about what specifically you find so objectionable.

@ Narad:
'
As long as it wasn't Marad Sade.

at least my creature doesn't sit on my arm: he sits on the keyboard and/ or the satelllite receiver ( he's large enough to cover both)

I once knew a multi-millionaire who's son was diagnosed with a terminal cancer. The father chose an alternative medicine including gold-enemas and whatever else. The son is alive today (who knows why - bad initial diagnosis?) 40 years later. No one dared question that father's right to decide for his son. And therein lies the question. Should the state decide the fate of a child over the parents? Assuming of course, that the parents are generally of sound mind and honestly believe that their decision is in the child's best interest. This question is fundamental when you consider the miserable consequences when the state made these decisions for aboriginal people in the not so distant past.

Should the state decide the fate of a child over the parents? Assuming of course, that the parents are generally of sound mind and honestly believe that their decision is in the child’s best interest.

There's a lot of detail buried in "generally of sound mind," now, isn't there?

http://www.cbc.ca/news/aboriginal/florida-spa-that-treated-first-nation… "Florida spa that treated First Nation girls with cancer faces lawsuits from ex-staff
Director Brian Clement giving false hope, putting patients at risk, nurse says"

Thanks, jypsy, I was just about to post that link. The interview with the director says all you need to know.

Pugh's complaint, No. 502014CA002611XXXXMB in Palm Beach County, was filed in March. It appears that the others have been consolidated under it.

Orac said (emphasis added):

The statement above is simply untrue, and, given that the chiefs must know that what Brian Clement offers is not traditional medicine, it’s hard not to see this statement as, under the most charitable interpretation, disingenuous as hell, and a lie if you’re not as charitable. (At the very minimum there’s a massive case of cognitive dissonance.) Indeed, the other girl, Makayla Sault, is also relying on Brian Clement. Ironically, she is was not even led to her decision to refuse chemotherapy by following the traditional beliefs of her people in that her father is a pastor at an evangelical church and Sault stopped chemotherapy after reporting having seen a vision of Jesus in her hospital room telling her that she was already healed. She is now critically ill, her cancer having predictably relapsed several months after she stopped her chemotherapy.

Makayla Sault has died. See:
http://doubtfulnews.com/2015/01/aboriginal-rights-trump-necessary-treat…

An Ontario court dooms a First Nations girl with cancer

oracknows — Mon, 17 Nov 2014 09:30:09 +0000

An Ontario court dooms a First Nations girl with cancer

A few weeks ago, Steve Novella invited me on his podcast, The Skeptics’ Guide to the Universe, to discuss a cancer case that has been in the news for several months now. The case was about an 11-year-old girl with leukemia who is a member of Canada’s largest aboriginal community. Steve wrote about this case nearly a month ago. Basically, the girl’s parents have been fighting for the right to use “natural healing” on their daughter after they stopped her chemotherapy in August because of side effects. It is a profoundly disturbing case, just as all the other cases I’ve discussed in which children’s lives are sacrificed at the altar of belief in alternative medicine, but this one has a twist that I don’t recall having dealt with before: The girl’s status as part of the First Nations. Sadly, on Friday, Ontario Court Justice Gethin Edward has ruled that the parents can let their daughter die.

The First Nations consist of various Aboriginal peoples in Canada who are neither Inuit nor Métis. There are currently more than 630 recognized First Nations governments or bands in Canada, half of which are located in Ontario and British Columbia. This girl lives in Ontario, which is basically just next door to Detroit, just across the Detroit River. Unlike previous cases of minors who refuse chemotherapy or whose parents refuse chemotherapy for them that I’ve discussed, such as Sarah Hershberger, an Amish girl whose parents were taken to court by authorities in Medina County, Ohio at the behest of Akron General Hospital, where she had been treated because they stopped her chemotherapy for lymphoblastic lymphoma in favor of “Katie Wernecke, Abraham Cherrix, Daniel Hauser, Jeremy Fraser, Jacob Stieler, Sarah Hershberger, or others, follow a very similar script. It’s a script that on many an occasion has led me to quote Elton John sadly, “I’ve seen that movie, too.” Here’s the basic script:

A child is diagnosed with a treatable, curable pediatric cancer. (Note that most pediatric cancers are among the most curable cancers there are. Pediatric leukemias and lymphomas, for example, have gone from a virtually-zero survival rate 50 years ago to survival rates that approach 90% or even more. Truly, if there is a triumph of science based medicine, it is in pediatric cancers.)
The child begins chemotherapy, going through part of the recommended protocol, and suffers the expected side effects.
The parents, who quite naturally have a hard time watching their child suffer, hear about some quackery or other that promises to treat their child without the side effects of chemotherapy. If they are prone to belief in “natural healing” or alternative medicine, there is a good chance that they will stop their child’s chemotherapy and opt for the promise of the “natural healing” that claims to be a cure without the pain.
Doctors, alarmed at the likelihood that the child will die, report the child to the child protective service authorities, who intervene.
There is a court case. If the court case goes against the parents, frequently they flee with the child, as Daniel Hauser’s mother did, as did the parents of Katie Wernecke, Abraham Cherrix, and Sarah Hershberger, among others.
At this point, one of two things happens. Either the parents are persuaded or ordered to treat their child properly (as in the case of Daniel Hauser); they come to some sort of compromise that allows the child to get some treatment plus “alternative healing” (as in the case of Abraham Cherrix); or, a depressingly common outcome, they win the “right” to let their child die through medical neglect, as has just happened with this First Nations girl with lymphoma.
Through it all, quacks leap on these stories as examples of “fascism,” and “gunpoint medicine” in order to promote their world view of “health freedom” (otherwise known to skeptics as the freedom from pesky laws and regulations outlawing fraud and quackery), as happened in virtually all these cases, but most notably recently for the case of Sarah Hershberger.

How do these stories end? Sometimes they end with the death of the child. Sometimes the child lives (I’ll explain why a little later). Ofttimes it’s very difficult to find out what happened to the child, as I’ve found out to my frustration over the years. For instance, I have not been able to find out much about Sarah Hershberger since March, when Tracy Oppenheimer of Reason.com defended her medical neglect in the name of health freedom. (What are the deaths of some children with cancer compared to health freedom, eh?)

This First Nations case adds a different spin on the subject, but the script remains more or less the same. This time around, the parents have won the right to let their daughter die a horrible death from cancer based on Aboriginal rights.

Aboriginal children now have the right to refuse life-saving medical treatment in favour of traditional healing.

The Friday ruling has nothing to do with whether aboriginal medicine works.

Family court heard unequivocally in the case of a First Nations girl refusing chemotherapy that no child has survived acute lymphoblastic leukemia without treatment.

Instead, it’s about Canada’s Constitution protecting aboriginal rights.

Ontario Court Justice Gethin Edward has now expanded those rights to include traditional healing, saying “there is no question it forms an integral part.”

“This is monumental for our people all across the country,” said Six Nations Chief Ava Hill. “This is precedent-setting for us.”

No doubt this ruling is monumental and precedent-setting, but in a very bad way. So, in other words, our neighbor to the south (at least to me in southeast Michigan, which is the only place where Canada is to the south) have declared that letting children die of cancer is an “integral” part of Aboriginal identity. I am not exaggerating. The court apparently didn’t even take into account whether the “natural healing” chosen by the girl’s family works. Meanwhile, Six Nations Chief Ava Hill is exulting over the ruling, apparently unconcerned that it will result in the death of an 11 year old girl. As I’ve said many times before, a competent adult should have the right to choose any form of medicine he likes or even to choose no treatment at all, but children are different. They are not capable of understanding the implications of their decision, and this girl, at 11 years old, isn’t even in the gray area of the later teen years where an argument can sometimes be made for self-determination even though the child is a minor. They need and deserve protection from such outrageously bad choices on the part of the parents.

This case is a complete failure on the part of the province of Ontario and of Canada itself to protect the lives of its most vulnerable members, children, particularly children of a minority group. Even worse, it is an indictment of the First Nations, which, rather than seeking to protect one of the most vulnerable members of its community, a girl with a treatable, potentially curable cancer, instead glommed onto this case as a vehicle to promote its rights vis-a-vis the Canadian government. I don’t think it was cynically done; no doubt the leaders of this particular First Nations community and Six Nations Chief Ava Hill believe in their Aboriginal natural healing. On the other hand, it’s hard not to think that there was some opportunism given that the parents appear not to have even chosen to use Aboriginal “natural healing” techniques.

Instead, they are using the rankest quackery, which has nothing to do with aboriginal natural medicine, administered by Brian Clement in a “massage establishment” in Florida:

A Florida health resort licensed as a “massage establishment” is treating a young Ontario First Nations girl with leukemia using cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies.

The mother of the 11-year-old girl, who can not be identified because of a publication ban, says the resort’s director, Brian Clement, who goes by the title “Dr.,” told her leukemia is “not difficult to treat.”

Another First Nations girl, Makayla Sault, was also treated at Hippocrates Health Institute in West Palm Beach and is now critically ill after a relapse of her leukemia.

Somehow, I doubt that the traditional healing methods used by First Nations people have ever included cold laser therapy or vitamin C injections. Looking at Makalaya Sault, you will see the future of this First Nations girl: Relapse. But what about Brian Clement? It turns out that I’ve written about him before.

In brief, Clement is, in my opinion, a quack. If you have any doubt, start by looking at what he is quoted as saying in this news story:

He’s been giving lectures in and around both girls’ communities in recent months, including one event attended by Makayla’s family this past May.

In a video obtained by CBC News, Clement says his institute teaches people to “heal themselves” from cancer by eating raw, organic vegetables and having a positive attitude.
“We've had more people reverse cancer than any institute in the history of health care,” he says.

“So when McGill fails or Toronto hospital fails, they come to us. Stage four (cancer), and they reverse it.”

The mother of the girl whose identity is protected says she knew as soon as her daughter was diagnosed that she wanted to seek treatment at Hippocrates, a clinic she was familiar with through a relative, but didn’t have the money to go.

After securing financial support from family, she called Clement from the hospital waiting room on the 10th day of her daughter’s chemotherapy.

The story goes on to describe how the mother called Clement while her child was receiving chemotherapy and found how “confident” he sounded. As soon as he said he could help, the mother quit the chemotherapy for her daughter.

It’s all depressingly similar to a story I encountered about a year ago. It was the story of a young mother in Ireland who had been diagnosed with stage IV breast cancer and chosen the “alternative route.” She, like the anonymous young First Nations girl and Makayla Sault, found her way to the Hippocrates Health Institute. The young woman, Stephanie O’Halloran, was only 23 years old, an age range at which breast cancer is rare, but not unheard of.

These are the sorts of things Clement offers through HHI's "Life Transformation Program":

Superior nutrition through a diet of organically-grown, enzyme-rich, raw, life-giving foods
Detoxification
Wheatgrass therapies, green juice, juice fasting
Colonics, enemas, implants
Exercise, including cardio, strength training and stretching
Far infrared saunas, steam room
Ozone pools, including: dead sea salt, swimming, jacuzzi and cold plunge
Weekly massages
Bio-energy treatments
Med-spa & therapy services

That’s not all. Read my old post for more details. Basically, almost every form of cancer quackery known to humans is available at the HHI.

This is the “alternative healing” that the First Nations girl’s mother has chosen instead of effective chemotherapy. In essence, the parents and First Nations petitioned Ontario courts and Justice Gethin Edward acquiesced to letting First Nations parents have the right to let their children die through medical neglect. It might well be that Justice Edward’s ruling was legally correct and he had no real choice, but the end result will be the same: The death of a girl who otherwise would have a very good chance of living a long and productive life. Worse, his reasoning included this:

But Justice Gethin Edward of the Ontario Court of Justice suggested physicians essentially want to “impose our world view on First Nation culture.” The idea of a cancer treatment being judged on the basis of statistics that quantify patients’ five-year survival rate is “completely foreign” to aboriginal ways, he said.

“Even if we say there is not one child who has been cured of acute lymphoblastic leukemia by traditional methods, is that a reason to invoke child protection?” asked Justice Edward, noting that the girl’s mother believes she is doing what is best for her daughter.

“Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to be treated with chemotherapy and to survive for that culture to have value.”

Every parent who chooses quackery over effective medicine believes she is doing what’s best for her child. Every single one of them. The same is true of parents who thought that prayer could cure pneumonia or diabetes. That’s not a reason to deny such children protection. More disturbing, however, is Justice Edward’s last sentence, in which he seems to be shrugging his shoulders and saying, “So what if a few aboriginal children die anyway? It’s just their culture.” Or, as Steve aptly put it, using human sacrifice as a reductio ad absurdum of the judge’s argument: “Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to survive infancy without being sacrificed for that culture to have value.”

It’s understandable, given Canada’s history of riding roughshod over the wishes of First Nations families, such as the case of residential schools pointed out by Arthur Schafer, that the court would want to bend over backwards to respect the wishes of the parents. However, in doing so, Justice Edward utterly failed to take the best interests of the child into proper account.

How does this sort of thing happen?

Steve also correctly noted that the outcome of such legal battles often hinge on the reasons given by the parents for refusing chemotherapy. If, for example, they simply use medical opinions as a justification (i.e., they disagree with their doctors), the state is usually pretty quick and decisive in taking action. This is the sort of situation that ruled Daniel Hauser’s case, and ultimately Hauser underwent effective chemotherapy and lived. If, on the other hand, religion or culture is used as justification for choosing quackery over effective treatment, courts seem to be much less willing to step in and see that the child receive effective treatment. For instance, in 2009 Catherine and Herbert Schaible in the Philadelphia area to choose prayer over antibiotics for pneumonia for their first child. The child died. The Schaibles received ten years' probation and had to promise, in essence, that their other children, who were not removed from their care, would receive modern medical care. In 2013, a second child, who was 8 months old at the time, died the same way. It took the second death of a child before the state actually took their children away and put them in jail. The same dynamic came into play in the case of Sarah Hershberger, where Medina County authorities were reluctant to be too harsh because they were Amish, and their culture valued “natural healing.” Clearly, the same dynamic has led to Justice Edward’s tragic decision with respect to this First Nations girl.

Also at play is an attitude that ascribes absolute rights to parents over their children. It’s a toxic attitude that is often mixed with a general distrust of government and medical authority that fails to acknowledge that children are separate beings with their own rights separate from the rights of the parents. Those rights include the right to not to suffer from medical neglect. As has been pointed out, parents don’t have the right to kill their children; they shouldn’t have the right to let them die through medical neglect, as the parents of this First Nations child are doing.

For all my railing against the medical system, what’s really critical here is understanding why parents make these choices. Having a child with cancer is a horrible, terrifying thing to go through. Having to watch a child suffer the complications of chemotherapy with the child not understanding why it’s necessary is even harder. It’s very understandable that parents with a tendency toward believing in natural medicine or with just a distrust of medical authorities in general would be tempted by the siren song of quacks claiming that they can cure the child without all the toxic side effects of chemotherapy. In particular, it’s often hard for parents to understand why, after tumors frequently shrink away to nothing after the first couple of courses of chemotherapy, more chemotherapy is needed.

Unfortunately, for most pediatric tumors it takes a lot more than just a round or two of chemotherapy, a lesson painfully learned by pioneering pediatric oncologists back in the 1960s and 1970s. For the type of tumor that, for example, Sarah Hershberger has, lymphoblastic lymphoma, the duration of one standard treatment is two years. For chemotherapy for lymphoma, there are at least three phases. The induction phase is designed to put the patient into remission. Consolidation chemotherapy is given to patients who have gone into remission and is designed to kill off any residual cancer cells that might be present, thus increasing the chance of complete cure. Maintenance chemotherapy is the ongoing, longer term use of chemotherapy to lower the risk of recurrence after a cancer has gone into remission. It's basically lower-dose chemotherapy given for two to three years to help keep the cancer from returning. In Sarah Hershberger's case, her oncologist recommended chemotherapy consisting of five phases: induction (5 weeks), consolidation (seven weeks), interim maintenance (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks), for a total duration of two years, three months. In the case of this First Nations girl, who has lymphoblastic leukemia, the treatment would have involved at least three phases: remission induction, consolidation/intensification, and maintenance lasting a similar amount of time.

It’s thus understandable how parents, after seeing the tumor melt away during induction chemotherapy, wonder why all this additional chemotherapy is needed. It’s quite possible that after induction chemotherapy the First Nations girl had no detectable cancer. If that's the case, it's the chemotherapy that she's received thus far that almost certainly caused that result, not any quackery to which Clement has been subjecting her. If the girl is apparently tumor-free, it also means that failing to consolidation and maintenance chemotherapy greatly increases the chance that her leukemia will relapse. Worse, relapsed cancer is always harder to treat. The first shot at treating cancer is always the best shot, with the best odds of eradicating the cancer. Letting cancer relapse through incomplete treatment breeds resistant tumor cells the same way that not finishing a complete course of antibiotics contributes to the development of resistant bacteria. It's evolution in action.

Some children will be fortunate enough to have had their cancer eliminated completely after induction and will survive to become testimonials used in support of such parents’ actions, but they are the minority. Depending on when the chemotherapy is stopped relative to the complete recommended course, most will not be so lucky. Parents also often have a view that it is the chemotherapy that is the cause of the child’s suffering, believing that if they stopped the chemotherapy the suffering would stop, and even if the child dies it would not be as bad for her as the chemotherapy. Unfortunately, death from cancer is not pretty. It’s worse than chemotherapy. Stopping chemotherapy early might relieve suffering for a while, but only at the price of an ugly death later.

Somehow, there has to be a way to get such parents to see this, to teach them the very basics of cancer biology, why chemotherapy regimens for pediatric malignancies are as long as they are, and what the consequences of not finishing chemotherapy are. Remember, the parents are almost always only interested in what they believe to be best for their child, and they are suffering in a different way as they watch their child suffer the side effects of chemotherapy. When their child is crying that she can’t take it any more, when she’s vomiting and feeling very sick due to the chemotherapy, it’s very hard for parents to see that it’s worth this pain if the tumor is already gone. They need support systems to help them deal with this. Most pediatric cancer centers provide such support, but it isn’t always enough. Again, although my memory is by no means comprehensive, since I started paying attention to these cases ten years ago, I can’t recall a single case of parents who refused chemotherapy for their child until after the child had undergone at least a couple of cycles and suffered the expected side effects. I’m sure such parents probably exist, but they must be rare, because I’ve paid a lot of attention to these sorts of cases over the years, and I can’t recall one.

Finally, when faced with parents wanting to stop chemotherapy, oncologists have to be very careful not to come across as bullying, something I suspect that they sometimes do without realizing it when hearing a parent tell them she is going to stop chemotherapy. It’s understandable that physicians and nurses would react that way. Pediatric oncologists become pediatric oncologists because they want to save the lives of children with cancer, and nurses working on pediatric oncology wards work there for the same reason. It’s understandable that they react with alarm to such pronouncements by parents and might become angry or strident. After all, the child is their patient, not the parents, and the parents have just become an obstacle to saving the child’s life. When parents threaten to stop chemotherapy, it is often a cry for help; they’re telling doctors that they can’t handle seeing their child undergo chemotherapy any more. Sensitivity is required in working with them.

None of this, however, means that, if push comes to shove and the parents can’t be moved with all the understanding and empathy in the world, the interests of the child shouldn’t come first. The interests of the child must come first, and if parents can’t be persuaded to continue treatment of a highly curable tumor, then the state has a duty to step in. It’s a duty at which Ontario and Canada have failed in the case of this First Nations girl. It’s also a duty that First Nations authorities who supported the parents in filing suit have utterly failed to uphold.

oracknows Mon, 11/17/2014 - 04:30