lymphoblastic leukemia

A tale of two unnecessarily doomed aboriginal girls with leukemia

oracknows — Tue, 20 Jan 2015 02:27:32 +0000

A tale of two unnecessarily doomed aboriginal girls with leukemia

I'm depressed and angry as I write this.

The reason for this is simple. I hate it when cancer quacks claim the lives of patients with cancer, particularly patients who were eminently treatable for cure. It's happened again, and it makes me sad. Florida cancer quack Brian Clement has claimed the life of Makayla Sault, an 11 year old Ojibwe girl with leukemia:

The entire community of New Credit is in mourning today, following the news of the passing of 11 year old Makayla Sault.

The child suffered a stroke on Sunday morning and was unable to recover. Friends and family from across the province travelled to New Credit First Nation today to offer condolences, share tears and pay their respects.

I first discussed the case of Makayla Sault in the context of the story of a First Nations girl with cancer, whose fate was almost certainly sealed when a Canadian judge ruled that she could pursue "traditional" treatment in lieu of curative chemotherapy for her lymphoblastic leukemia, even though what she and her family were choosing had nothing to do with traditional aboriginal healing. Rather, instead they took the First Nations girl to Brian Clement, a quack who isn't even a physician but somehow has been treating patients with cancer at Hippocrates Health Institute in West Palm Beach for many years now with his "Life Transformation Program" that includes:

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

I described it all in an old post in which I had first encountered Clement. In particular, Clement seems to have a thing for treating people with wheatgrass enemas. Wheatgrass, according to Clement, can increase red blood cell count, decrease blood pressure, cleanse the blood, organs and GI tract of “debris,” stimulate the thyroid gland, “restore alkalinity” to the blood, “detoxify” the blood, fight tumors and neutralize toxins, and many of the usual other things quacks like Clement claim. He even offers the infamous "detox footbath," plus intravenous vitamin therapy, cranial electrotherapy stimulation, combination infrared waves plus oxygen, acupuncture, colon hydrotherapy (apparently with or without wheatgrass) and lymphatic drainage. There's even a bit of quackery hilariously called colorpuncture, in which various colors are applied to acupuncture points.

You get the idea. Brian Clement's clinic has nothing to do with Ongwehowe Onongwatri:yo (indigenous medicines) and everything to do with good, old-fashioned European-American quackery focused mainly on wheatgrass, raw vegan diet, and "detoxification."

Unfortunately, another child who very well might have been saved and lived to a ripe old age is dead, her whole life ahead of her having been thrown away pointlessly, because her family relied on quackery instead of effective medicine. Once more, a cancer quack has claimed a very salvageable life. The saddest thing about this is that this outcome didn't have to be. All reports indicate that Makayla's tumor was a treatable variety. In fact, it was the same kind of cancer the First Nations girl whose case I discussed has, lymphoblastic leukemia, although it wasn't as favorable a variety. Pediatric oncologists estimated that Makayla had a 70% chance of surviving five years, because the cancer had the Philadelphia chromosome. So, yes, it's quite possible that Makayla could have been treated with the very best drugs modern medicine has to throw at lymphoblastic leukemia and died anyway, nearly a one in three chance. However, by abandoning chemotherapy and choosing Clement's quackery instead of Makayla's best shot at a cure, Makayla and her family reduced her chances of survival from 70% to zero.

To be honest, after the descriptions of how her condition was deteriorating in November when I originally wrote my posts about the First Nations girl, I'm a little surprised that she lasted two whole months more. From the news reports, she sounded as though she was in bad shape in November. But last she did.

Now Makayla's parents have suffered the worst loss a parent can suffer. They are, no doubt, suffering intensely, as is Makayla's entire family and tribe, over the loss of their beloved. I do not blame either Makayla or them; I blame Brian Clement for duping them. Unfortunately, as is often the situation in these cases, the Sault family is not accepting that the cancer killed Makayla. They're blaming—you guessed it!—the chemotherapy. In a statement, they said:

Makayla was on her way to wellness, bravely fighting toward holistic well-being after the harsh side effects that 12 weeks of chemotherapy inflicted on her body.

Chemotherapy did irreversible damage to her heart and major organs. This was the cause of the stroke.

We continue to support Makayla’s choice to leave chemotherapy. At this time we request privacy from the media while we mourn this tragic loss.”

Yes, as happens so often in these cases, it's not the quack's fault that the child died. It's the fault of those evil "Western" doctors and their poisonous chemotherapy. Always. Unfortunately, a stroke is a known complication of leukemias due to either cancer-related coagulopathy or complications of treatment. It's one way that patients with end stage leukemia die. Given that Makayla hadn't been treated in months, her stroke was almost certainly due to her cancer. Such strokes can be a hemorrhagic (for example, if the platelet count falls very low), or it can be a thrombotic stroke (clot) if the white blood cell count goes too high. Either way, it's not particularly surprising that Makayla, with untreated leukemia, suffered a fatal stroke. It was almost certainly end stage cancer the killed her, not the side effects of the chemotherapy.

In a way, I can't blame the Saults for believing that it was the chemotherapy that killed their daughter. I really can't. It's completely understandable. If they stopped believing that, then they would have no choice but to accept that it was the choice to abandon chemotherapy that doomed their daughter. That's just not something that any parent is likely to be able to admit.

Unfortunately, I see this happening to another child in the not-too-distant future. Remember, there is still another aboriginal girl with lymphoblastic leukemia who has abandoned chemotherapy, with the blessing of her tribal chiefs and family, in favor of the quackery peddled by a Yankee in Florida. We don't know her name due to privacy concerns enforced during her court case but we do have an update about her condition to juxtapose with the death of Makayla Sault. Not surprisingly, due to the usual misunderstanding that families who abandon chemotherapy for quackery for hematologic malignancies nearly always have, her family believes she is doing well because her latest tests have failed to find residual cancer:

The 11-year-old at the centre of a controversial ruling on aboriginal medicine tested negative for signs of cancer, her family says, months after she was pulled out of chemotherapy early in favour of natural therapies.

According to a published statement, the family credits the alternative treatment for the remission. But oncologists say it may be the result of the two weeks of chemotherapy the girl underwent at McMaster Children’s Hospital in August before her mother pulled her out.

There's no "may" about it. It's almost certainly the result of the chemotherapy that the girl underwent in August. I've explained this concept several times of late. For hematologic malignancies like this, there are several phases of chemotherapy, starting with the induction phase. The induction phase is designed to put the patient rapidly into remission. However, as pediatric oncologists (not to mention adult oncologists who treat hematologic malignancies) learned the hard way decades ago, it requires sustained courses of chemotherapy to prevent leukemias from rapidly recurring. Basically, it's often easy to get a patient into remission, but keeping the patient in remission is harder.

One good thing about this article is that the reporter interviewed some actual oncologists who explained this concept rather well:

“From my perspective, there’s lots that traditional healing can offer in terms of symptom management and support, but based on my scientific training I think it’s exceptionally unlikely that traditional medicine has cured her of her disease,” said pediatric hematologist and oncologist Dr. David Dix, a clinical professor at the University of British Columbia.

“It is quite possible that she went into remission after the first two weeks of chemotherapy,” he said. Dix said the likelihood of the cancer returning is “100 per cent” and that any return of the cancer will be more difficult to treat.

And, later in the article:

The typical course of treatment for lymphoblastic leukemia involves four weeks of intensive chemotherapy which puts “99.9 per cent” of people into remission, Dix said. That is normally followed by about six months of heavy chemotherapy, then about two years of maintenance chemotherapy.

“Achieving remission, even with a short duration of chemotherapy, is expected,” said Dr. Kirk Schultz, professor of pediatrics at the University of British Columbia. “The whole focus of chemotherapy in children with acute lymphoblastic leukemia is to get a curative outcome, that they cure the disease and it never comes back.”

And the conclusion of the article:

“Any pediatric oncologist would tell you that the likelihood of her disease recurring or relapsing is 100 per cent, that she’s at very high risk of recurrence for her disease,” said Dix. “When she does relapse it becomes more difficult then to get her back into remission. It’s very much better to get her back into chemotherapy as soon as possible.”

So what we have in this second girl is the same story as Makayla's, probably delayed by several months or maybe a bit longer, given that this girl's cancer is not quite as nasty as Makayla's was. Her cancer will eventually recur, probably within the next year or two at most, and at that point it will be much more difficult to eradicate than it would have been if the girl had only undergone standard-of-care chemotherapy and completed the full course. She didn't.

The hard part will come when this girl's leukemia, as is almost inevitable now, recurs. What will the parents do? Will they admit that the combination of "traditional" medicine and Brian Clement's quackery didn't work and finally let their daughter be treated with state-of-the-art chemotherapy? At this point, that is probably the best outcome that can be expected, because they're clearly never going to bring her back to have her leukemia treated correctly as long as she is tumor-free, even though that would be the course of action that would maximize their daughter's odds of survival. The problem, of course, is that this honeymoon period probably won't last very long. The clock is ticking.

Unfortunately, I fear that when this girl's cancer does recur, the parents will not change course. After all, this is what the girl's mother has said:

In an interview with CBC News, her mother said, “This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work.”

Unfortunately for this woman's daughter, it is doubtful that she will be able to admit that this "something" didn't work, even after the leukemia recurs. Then we'll have a second Makayla Sault, another dead girl.

It's so sad, and so preventable.

oracknows Mon, 01/19/2015 - 21:27

This is not as is ought to be.

I was tempted to write some joke on the "treatments" proposed by Clement ("life-giving foods", really?), but in regard of the tragedy that happened that's neither the time not place.

I wish that getting a child cured of cancer was as easy and benign as spending some time at a spa resort. Sadly, it's not.

On the previous thread on this topic, a thread at doubtfulnews has been linked to.

Two readers, Colonel Tom and Perry Bulwer, had an interesting exchange, from the point-of-view of two aboriginal people, one agreeing with the Ontario court decision, the other one more conflicted, respectively. The legal background - who has jurisdiction over the children - is complicating the issue.

And both of them aren't very fond of Mr Clement's little enterprise, to say the least.

I think it's time to focus the attention of the skeptical and science-based medicine community squarely on the Hippocrates Health Clinic that promotes itself to First Nations communities as a safe and effective alternative to proven medicine.

There are certainly some of us doing just that. Brian Clement is a menace who needs to be stopped. Why he's been able to practice as long as he has, I have no idea. Florida's regulation of the practice of medicine is as bad as Texas'—worse, perhaps, given that, for example, Stanislaw Burzynski is at least a licensed physician and Brian Clement is not.

As for the thread at Doubtful News, i can understand Colonel Tom's viewpoint to an extent, but I cannot agree with his belief that aboriginal rights trump the right of an 11-year-old child to life, in which Colonel Tom admits that Clement is a quack but nonetheless concludes, "I do not concur with the mother’s and the mother’s clan decision, but I would defend them with what little life and breath I still draw."

These kinds of stories make me very happy to be from Sweden. We have a so-called quackery law that prohibits anyone except actual doctors from treating a list of serious conditions, including cancer and epilepsy. It doesn't stop people from going abroad to seek out quacks like that Florida doctor, but if more countries had laws like that, it would be harder for them to kill children like this. Maybe something to fight for in the US too?

I am not a doctor. But couldn't this littl girl have been treated with imatinib alone rather than combined with chemo? This way the girl would still have had a decent chance. - Unless the parents either class imatinib as chemo or were just anti Western medicine in general.

Fergus, a typical MO of a fair number of the cancer quack clinics is they often pressure people into doing only their program and they must not take anything made by Pharma or prescribed by an MD. So even if the parents were interested in what some people call a best of both worlds type of integrative approach there are clinics that will not participate in that. And if you are conditioned to believe a specific clinic is the one and only hope it can be hard to advocate for doing anything other than what they demand.

Treatment with 'cold lasers' at a fraudulent Florida massage clinic hardly constitutes traditional aboriginal treatment. The only tradition being respected there is that of shady American practitioners to fleece the gullible. What concerns me most is that we have a legal precedent here that will make it more likely that Canadian aboriginal children in this situation will, in effect, be treated as second class citizens. If she had not been aboriginal when she went into that courtroom she would not have been condemned to this death by a judge who possibly cared more for upsetting a legal applecart than for the well-being of the child. I understand chemo isn't pleasant (believe me, I am a physician who is currently receiving chemo for leukemia - it's not fun but it beats the alternative), but to let a child die unnecessarily is unforgivable. To do it simply because she is First Nations is racist. To do both is not something that should happen in my Canada.
This is a disgrace that reflects badly on us. Let down by parents who were unable to act in her best interests and let down by a legal system that respected the fact she was aboriginal more than her right to live. Any other aboriginal child in the same predicament know must know that the court system will not save them from an untimely death, while it would do so if they were of any other race. Justice Ontario - doing their bit for genocide.

Re #6: That has been tried and does not work. Imatinib alone is great for chronic myelogenous leukemia (CML), but lymphoblastic leukemia requires the combination of imatinib plus chemotherapy. Otherwise, the leukemia rapidly relapses.

No one should defend Brian Clement, but to assume that the children's treatment is solely under his multiple cursed hands is way too simplistic. Both the Longhouse child and one that just died are under the care of multiple individuals, Native and EuroCanadian. At least in the case of the daughter of the Longhouse, aka Six Nations, child, her treatment plan includes returning to chemo when and if her cancer returns. Although, while my ears are far from the Canadian Six Nation's homeland, I have heard their hearts are likely now hardened that Makayla Sault has passed from this world. The tale that is told is that she never recovered normal cardiac function after her initial chemo. The evidence based belief among the People is that chemo and in particularly McMaster's Hospital were excessive to the point of being detrimental. I wish an autopsy would be performed, but sans that the truth of the eyes will supersede the truth. There is great sadness in this, as published studies indicate that as a population Native American's have a high higher rate of the various leuks and far worse outcomes even with treatment. Genetic differences can be a bear.

As far as the politics, child's mother and her clan must be given great weight in these decisions. McMaster's Hospital did everything wrong in their interaction with these children and their families. This is sadness.

The evidence based belief among the People is that chemo and in particularly McMaster’s Hospital were excessive to the point of being detrimental.

Then I would like to see this "evidence" behind the "evidence-based belief among the People" to support that contention. As far as I've been able to ascertain, Makayla received standard-of-care chemotherapy for Philadelphia chromosome-positive acute lymphoblastic leukemia. So far, all we have is the claims of the parents and the People, no science. Her physicians at McMaster cannot speak because of privacy concerns. Thus, we have an asymmetrical situation, in which the parents and their elders can say whatever they want, and no one with actual knowledge who treated the girl can say much, if anything, in response. Sadly, that is how it almost always is with cases in which children die of a treatable cancer because their family chose quackery instead of effective treatment.

As for the other child, "returning to chemo if the cancer returns" virtually guarantees that her odds of survival have been significantly and unacceptably decreased. Recurrent leukemia is much harder to treat. A cancer patient's first shot is her best shot. If her leukemia returns (and, as the oncologists predict in the article I cited, it almost certainly will), she will require second-line chemotherapy, and quite likely will ultimately require a bone marrow transplant, a much harsher, nastier treatment than just chemotherapy, if she is to have any hope of survival. Her best shot has thus far been thrown away, and the window for recovering that best shot is closing.

Tried to discuss this with Mr Woo. Sadly, he immediately fell into true-believer mode, with the same anti-science-based medicine tropes. He asked, "Did she not have the right to choose? Do you really want the government to be able to tell you what you do with your own body?" etc., etc.

I can hear echoes of every conspiracy theorist website he reads and listens to when I attempt to discuss medicine (except vaccines - having normal grandchildren post immunizations after the autistic one has calmed him down on that front), the economy or politics. It would be so much better if I could block every crank website on the internet.

My heart breaks for every parent that loses a child.

Thus, we have an asymmetrical situation, in which the parents and their elders can say whatever they want, and no one with actual knowledge who treated the girl can say much, if anything, in response.

This is an important point, and a big part of why peddlers of cancer woo such as Clement and Burzynski get as much respect as they do. Their fans get to say that the woo treatments are wonderful and the SBM treatments worse than useless for the patients who seek out these alternative treatments. Defenders of SBM are only allowed to talk in general terms, and frequently at a technical level that most laymen don't understand. So the anecdote trumps the data. We hear that the alternative treatment worked for Patient A while the SBM treatment killed Patient B. We don't get to hear the evidence that it was actually the alternative treatment that killed Patient B, and the SBM treatment worked for Patient C, even though there are many more Patients C than A and B.

Fortunately, in most cases it is possible to figure out what likely happened from news reports snd the clues that the patients and families themselves, but it's often hard.

#9. Thanks I didn't know that.

I’ve explained this concept several times of late. For hematologic malignancies like this, there are several phases of chemotherapy, starting with the induction phase. The induction phase is designed to put the patient rapidly into remission. However, as pediatric oncologists (not to mention adult oncologists who treat hematologic malignancies) learned the hard way decades ago, it requires sustained courses of chemotherapy to prevent leukemias from rapidly recurring. Basically, it’s often easy to get a patient into remission, but keeping the patient in remission is harder.

Here is my favorite figure that helps illustrate this concept. It is from a paper on AML, but the same concept of clonal evolution and minimal residual disease is relevant to ALL and other cancers. The vertical width represents the burden of cancer (i.e. # of viable cancer cells), which can be markedly decreased (to the point of undetectable) without extinguishing every last cell. The only hope is eliminating every last cell with post-remission treatment. If post-remission treatment is eliminated or fails, residual cells cause relapse, and resistant clones predominate as shown in the figure.

This is so sad. And compounding the sadness is the the fact that certain people are not learning anything from this tragedy. The majority of the comments on CBC news are along the lines of "She was a hero and made the right choice" and "Too bad the chemo killed her before "traditional medicine" could save her!". So my takeaway from this is we're going to keep having to watch in frustration while it happens again and again :(

Normally, I would tell this Clement character to shove his alt-med bullshit up his ass. Problem is that he would likely find that enjoyable and 'detoxing'. The following quote is from a CBC article today:

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

In an interview with CBC’s Connie Walker, Clement said, “When we educate them they take care of themselves,” he said, before shouting, “You’re a liar. Get off the property.”

In an interview with CBC News, her mother said, “This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work.”"

What a narcissistic jackass who should be sent to prison ASAP. Killing kids in the name of personal gain.

Madison MD, Nice link.

Shows that cancer is primarily due to assimilation of genetic mutations. Also shows how complicated things get as the disease progresses.

Why do people keep carping that the girl was receiving “traditional medicine” when she was clearly seeing the Florida quack? Not that rattles, chanting, herbs, teas, and such would be any more helpful.

Why are the parents not held accountable to Orac? Are they not responsible for their actions? While I am very sorry for their loss and for this entire situation, I do think they share the responsibility for making terrible decisions in the face of massive advice from responsible professionals. There are bigger fish to blame, such as the basic cultural respect given to belief in general, but most parents choose real treatment and those who don’t should bear some responsibility for the outcome in my view. I’m not suggesting punishment such as prison, but as North Korean as it might sound, how about some “re-education”?

Lancelot Gobbo #8

This is a complex case, and you have essential facts wrong.
• The court case did not involve Makayla Sault the child who has now tragically died.
• The Sault family's aboriginal status had nothing to do with Makayla's chemo withdrawal. They are Evangelical Christians, and her father is the pastor of the church.. Makayla's reaction to the chemo was so bad he had to put in the ICU. There she had a vision of Jesus telling her she would be healed. At that point her parents withdrew her — Evangelicals don't mess with Son O' God!
• NO ONE went into Judge Gethin's courtroom. The worst misreporting in this story is that a court decision could have saved 'J.J.' (the 2nd girl). Her family had long since fled and were outside the jurisdiction.
• The entire "aboriginal medicine' issue is a MacGuffin employed by both sides to shield what IS a child custody issue. It was only brought in after the fact of the 2nd chemo refusal, when that case appeared headed for court.
• The extraordinary severity of Makayla's reaction to chemo, combined with family's Evangelicalism would have made saving her a tough nut in any case. However, McMaster Hospital sealed her fate by referring her case to CFS instead of seeking a state mandated treatment plan. CFS refused to intervene and seek custody, which the hospital should have known they would (it's called a telephone), and they DID ot appeal that decision on Makayla's behalf.

You are correct about two things:
1. The case set a very bad precedent, that could endanger the lives of future First Nations children.
2. The tradition being respected is that of shady American practitioners to fleece the gullible. But that is an entirely American problem. Clement has been murdering cancer patients for decades with his scam, yet he is considered an upstanding member of the Florida business community with A+ ratings from the Camber of Commerce and the the Better Business Bureau. The failure of Florida and the U.S. government to regulate quackery, the business communities acceptance of it, and the larger medical profession's tolerance of it are the central issues here. Orac and SfSBM appear to find themselves crying in the wildness about quacks like Clement. EVERY medical doctor in the U.S. and their professional organizations should be taking an activist stance pressuring lawmakers to put Clement and his kind out of business, and in the jails where they belong. That this is not happening is tragic, and to my mind, inexplicable.

Did she not have the right to choose?

You might tell Mr. Woo that as a minor child, no: she actually did not have a right to choose. That right was instead held by her parents/guardians, who have demonstrably made a poor choice--one that rejects a near certainty for success in favor of the near certainty of failure.

Do you really want the government to be able to tell you what you do with your own body?

We're talking about parental responsibilities regarding health care for minor children, however, not government intervention to veto or dictate health care decisions regarding their own care made by competent adults

In that context yes: I absolutely do want our government's public health/child welfare agencies to be to tell parents they do cannot deny their children necessary and essential medical treatment.

"he immediately fell into true-believer mode, with the same anti-science-based medicine tropes. He asked, “Did she not have the right to choose? Do you really want the government to be able to tell you what you do with your own body?” etc., etc."

The core problem of this kind of reasoning is that it only works if you assume that the belief in alternative therapy is reasonable, and that the child is mature enough to have been presented all the evidence and make her own decision.

The parents are making this choice because they 100% believe that their children will live with the alternative therapies but that the chemo will kill her. The children are making this choice because they are not fully developed and are vulnerable to their parent's beliefs.

In both cases though the belief is in an outcome. Not in a religion. In some ways if this was religious it would be clearer because it's possible that a religious person might accept that they could still die but that their religious life is more important.

But this? The child is not making an informed decision about what to do with her own body. She has been lied to about what the results will be of each decision and does not have the maturity to see through the misinformation.

The fact that the parents and the tribes also believe the lies does not change the great moral wrong that is being done to this child. She is not choosing to die. She is choosing to live. And she is being lied to about what the mechanism is that will let her live.

To ask if she has the right to choose what to do with her own body is a red herring. She and her parents claim that the choice is TO LIVE. Both her and her parents have made it crystal clear that they are CHOOSING FOR HER TO LIVE. If it were a different circumstance and everyone involved acknowledged that she had a better chance with the chemo but they wanted to go with traditional medicine for religious reasons… and everyone understood the risks involved… well then you can get into the argument about the "right to choose what to do with your own body". But again… that isn't what's happening here.

Every other moral argument about this case is basically a smokescreen for the fact that this child has been misled and lied to and her choice to NOT end her own life, but to continue to live a full and healthy one is being subsumed by politics, dogma, quackery and ideologies.

Thank you "Sadmar", you certainly seemed to be more aware of "facts" than most. People get confused, there were two girls. While both are First Citizens/Native Americans, they are from very different cultures. As for the child that I am not allowed to name, who is of the Six Nations, it was reported and confirmed by hospital testing that she is currently not showing any signs of remission after six months. She will have opportunity to celebrate one more mid-winter festival.

As for Makayla, all accounts indicate serious and systemic damage from the initial chemo. This has been reported in the literature that people of native american genetics often show similar reaction, it is likely why mortality and poor outcomes is excessive among this subset of the population. The Reservation medical resources and the independent doctors brought in to review her case were in agreement. Now I do not preclude the possibility that she'd survived the chemo, but she was excessively damaged from the initial treatment. I wish there would be an autopsy to settle this, but as it is we'll have to rely upon the observation of the doctors that treated her and the idle speculation of the experts that have never stepped foot into the same room as Makayla .

"All accounts"? As for the Six Nations girl you're not allowed to name, I addressed her case in my post. She went into remission because of the chemotherapy and there's a near 100% chance she will recur because she didn't complete her chemotherapy.

Of course, I would be greatly interested in knowing who these "independent doctors" brought in to assess Makayla's case were. What were their qualifications? Were they native healers or were they actually qualified pediatric oncologists who treat lymphoblastic leukemia? I also echo sadmar's question (lower down in the comments) about your assertion that "people of native american genetics often show similar reaction." Do you have any citations from the medical literature to support that assertion?

As for your description here and in another comment of "spiking BUN" levels and the consideration of dialysis, I think I can make a reasonable educated guess as to what happened. I can't know, but based on your description I rather suspect, that Makayla suffered from something called tumor lysis syndrome. This is a known complication of the treatment of leukemia and occurs when the cancer cells in the blood die so rapidly from the chemotherapy that they lyse (break open) all at once, releasing intracellular ions and metabolic byproducts into the circulation. Clinically, the syndrome is characterized by rapid development of hyperuricemia, hyperkalemia (because of renal failure), hyperphosphatemia, hypocalcemia, and acute renal failure (due mainly to the hyperuricemia). In fact, Makayla had a white blood cell-based leukemia, and these just so happen to be the leukemias most prone to tumor lysis syndrome after the initial induction of treatment. Moreover, the abnormalities in ions in the blood caused by tumor lysis syndrome can lead to cardiac arrhythmias, which fits.

As for dialysis, the current recommendation for tumor lysis syndrome is early dialysis, because dialysis can prevent irreversible renal failure and other complications.

If my educated speculation is correct and Makayla suffered from tumor lysis syndrome after her first course of chemotherapy, it would make a lot of sense. Of course, this is not really a toxicity of the chemotherapy per se. It's a result of the tumor dying so rapidly that its toxic metabolic products poison the rest of the body. I realize that you and Makayla's parents might consider that a distinction without a difference, but medically it matters.

@ Dorothy #20
The bigger fish to blame is the cultural/legal 'respect' given to that parents 'own' their children, and should have the power to make life and death decisions for them. See the RI item on the case of Cassandra C. in Connecticut. Orac has consistently questioned this ideology. IMHO, his reluctance to be too harsh on some individual parents (not all) is appropriate in that they are caught up in these much larger ideological conflicts at a time of great stress facing the possible death of their kids on one hand, or possibly severe suffering from treatment (as Makayla experienced), making them all too vulnerable to the persuasions of quacks like Clement who shouldn't be in business in the first place.

I don't know if you or anyone in your family have ever been conned. My Mom was very susceptible to (non-medical) con-artists. These people are professional criminals (often legally sanctioned) highly skilled in detecting personal weaknesses and exploiting them. In short, their responsibility IS limited — if you don't know what you don't know you can't magically come to the position where you go look for the other side of the choice in question.

Again, this issue is wrapped within the larger concept of "parents' rights". If Ken Sault had cancer, and been seduced by Clement, to fault him for his own death would be blaming the victim. He is still a victim in that he has lost his daughter. To blame him personally for Makayla's death, he would have to live in a society that values children as autonomous individuals, with rights their parents cannot supercede — what right-wingers would object to as a literal 'nanny state.' Since the social situation is quite the opposite, it's problematic to blame Makayla's parents for falling prey to one of the most polished and successful medical con-artists on the planet.

It's also hard to fault the Saults personally for the role their Evangelical religious faith played in Makayla's death. It's easy to say, 'well, religion is stupid, and no one should impose that in a way that risks the life of a child'. But, again that's not the way our society, our culture, and our laws work.

'J.J.' the still-living First Nations girl being giving the Clement treatment is immature, passive, very dependent on her mother, apparently expresses no manifest will of her own. Makayla was the opposite: bright and expressive of her own will. As much as any child of 10 could be, she was a true believer in her Christian faith. In the ICU with severe side-effects from the chemo, she had a vision of Christ telling her she would die there, but that if she left, He would heal her. She begged her parents to take her home. They chose not to argue with Jesus. It's a little much to blame individuals for adherence to socially accepted beliefs when the driving expression of that belief comes from the child. (This was one of the reasons CFS refused to intervene with Makayla's custody.)

I'm not suggesting parents are absolved from responsibility sui generis. (Again see comments in the Cassandra thread.) It's just not a black and white thing where we can necessarily isolate the individual parents from the broader social context.

J.J.'s mother, on the other hand, may well be a controlling loon who is acting outside social norms, but the court has sealed the details, so we really don't know.

@ Lumen #25

Please take care to be explicit about whether you are discussing Makayla or 'J.J.'. and to avoid conflating the two cases. They are far more different than they are similar, as, among other reasons, most of the parties involved in J.J.'s case had Makayla's case as a precedent.

Orac, I obtained my M.S. in Biomedical Engineering from University of Houston and did my post grad at UCLA Medical School. After graduation I fell into the unsavory and immoral field of epidemiology and insurance, until such time as the blood of my actions drove me to retreat. Thus my vocabulary uses some terms that are neither mainstream medical. When I say "Evidence based belief" I mean it is a direct observation made by individuals. Her family, church, nation saw a child brought to the brink of death, with uncontrolled tachycardia and hypertension. Her BUN levels were spiking, there was talk of dialysis. People saw a person of death's door. They also experienced a hospital system that, mildly, committed every sin in the world with respect to patient interactions. Yes, WE BOTH know the lack of value in individual observations, but I certainly know that it is hard to get an individual to not believe in their own experience.

I don't know the details of her particular family and kin, but most N.A's in that part of Canada have experience with someone in their extended family being ripped from the home, sent to quasi-government "schools". You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the "schools". When the NDN was being beaten and starved out of them ,when they died because vaccines were not given to them, then experimentation was performed on them. Where was all this white ass concern for the little red children then?

Yes, I know you're likely too young to have been alive in those times, but it is your culture, your heritage, the medical traditions that you claim now that were in place then. You want the NDN's to believe that you can and will save their children?

Yes, because pediatric oncologists can save JJ and could likely have saved Makayla—roughly a 70% to 75% likelihood—and neither native healers nor the quack Brian Clement could give her even a 1% chance of survival.

Regarding the hospital system that you characterize as having "hospital system that, mildly, committed every sin in the world with respect to patient interactions," I've been on the other side of this one, and I find this assertion questionable without hearing the other side. I've found that in cases in which there is a conflict with the family, the hospital, despite bending over backwards to do the right thing and treat the parents with respect, is always painted the bad guy no matter what. The same thing happened with Sarah Hershberger, an Amish girl with a similar story who refused chemotherapy:

http://scienceblogs.com/insolence/2013/10/11/the-court-intervenes-to-sa…

http://scienceblogs.com/insolence/2013/11/04/chris-wark-spins-the-story…

http://scienceblogs.com/insolence/2013/10/28/ridiculous-charges-fly-in-…

http://scienceblogs.com/insolence/2014/03/12/reason-com-defends-the-med…

So you see, I do not discriminate based on culture, nationality, or religion. If I see a child being condemned to death from cancer because her family is not providing her proper science-based treatment, my reaction is quite predictable and consistent. I don't care much what culture the child comes from. The life of the child is always paramount.

As for the schools, I'm aware of them. Now. I learned of them when I first encountered these two cases. Horrible. Where the hell was I when thousands were dying in these schools? Probably a little kid or high school student. As for the guilt trip, I reject it utterly as a non sequitur. It was not "my culture" that did this. I come from immigrant stock, with my paternal grandfather coming here from Poland around about 1910 or so and my maternal grandfather coming here from Lithuania before the Holocaust reached it. This was long after the native tribes were driven from their land and place on reservations in my country. By the time I became a physician, the medical system that had contributed to the rise of the residential schools was long gone.

I look at it another way. I ask you: Is it worth the life of a child to assert the People's rights to the Canadian government? I argue that nothing is worth that. Yet that's exactly what JJ's people did, whether they know it or not, whether they will admit it or not. They sacrificed her life to assert their independence from the Canadian government, even at the cost of letting her parents take her not to traditional healers primarily but to a white quack in Florida.

Sadmar, "J.J"'s treatment and well being are not at the sole whim of her mother. Her Mother's clan will have more control over behavior than just her individual parent. In some ways, this is likely root of more of the problem, as her elders likely are of the generation that experienced "The Schools". There is little trust of that bunch and EuroCanadian authority. I myself am not Canadian and am actually banned from Canada.

Colonel Tom #29 wrote:

You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the “schools”.

Are you really going to make this sort of argument? The ante can always be upped.

In the ICU with severe side-effects from the chemo, she had a vision of Christ telling her she would die there, but that if she left, He would heal her.

Odd that her own summary was "Jesus came into my room and he told me not to be afraid, so if I live or if I die I am not afraid. Oh, the biggest part is that Jesus told me that I am healed so it doesn’t matter what anybody says."

"Stanislaw Burzynski is at least a licensed physician ... "

And even some of the doctors in the Clinic have licenses! LOL.

This article has a very mild association with SickKids hospital. They are simply the lab that samples were tested at, as far as I can tell. Isn't there a picture of the Hippocrates Health Clinic you could have used?

@ Colonel Tom #26

As for Makayla, all accounts indicate serious and systemic damage from the initial chemo.

I am not in medicine. Are you suggesting the alleged cardiac dysfuntion Makayla suffered would have been permanent, and impaired her life even had she completed the chemo and survived? What kind of cardiac function are we talking about here?

This has been reported in the literature that people of native american genetics often show similar reaction, it is likely why mortality and poor outcomes is excessive among this subset of the population.

Do you have references/citations for this literature?

The Reservation medical resources and the independent doctors brought in to review her case were in agreement.

What were the qualifications of the independent doctors? More importantly, when during the timeline did these reviews occur? To whom were the findings submitted and when?

This does seem to complicate things a little, but not much. If anything, it might have led McMaster to overstate the prospects for Makayla's survival and recovery with chemo. However, I can't it imagine it would make any alternative therapy the slightest bit more credible. Zero is still zero. As a question of medical science and/or abstract moral judgment we can take the alt-med out of the equation and pose some thing like the claim in the Cassndra C. case — quantity of life vs. quality of life, and weigh any long term health effects of the chemo Makayala may have faced against the very slim chance of survival she had without it.

So, again we must not conflate the two cases. Perhaps all the relevant information is sealed, but we certainly wonder: what sort of side effects did 'J.J.' experience during her stay in chemo? Was she diagnosed by anyone as facing long-term consequences. If so by who and when? Again, what sort of practitioner is the EuroCanadian "individual" who is Participating in J.J.'s care? If this is the same indiviidual who looked after Makayla, that's hardly promising.

it was reported and confirmed by hospital testing that she is currently not showing any signs of remission after six months. She will have opportunity to celebrate one more mid-winter festival.

I ma confused. Did you mean 'recurrance' rather than 'remission'? I.e is she seemingly healthy know and will celebrate at least one more festival? 'Not showing remission' would mean the cancer is still present and active, wasn't significantly affected by the short course of chemo at all, and thus she'll likely see ONLY one more festival? Please clarify. (I'm assuming you meant recurrance, since you noted "her treatment plan includes returning to chemo when and if her cancer returns".)

If she does seem to be healthy at the moment, I can only note that Makayla was reported to be in exactly the same condition after receiving Clement's treatment. The sbm folk said this was undoubtedy the delayed effect of the chemo, bolstered by the removal of the side-effects (as discussed above). Kid feels all better! But Is still essentially the walking dead. This does not bode well for J.J.

Finally Colonel T., if you have time could you review my comments from the (long) earlier thread here and note anything i may have gotten wrong?
http://tinyurl.com/o6xqbzh
As you'll see, I was contining to dig into a much information as I could find on the web, and each new bit of info beyond the standard news frame led to re-evaluations and new conclusions, so I know I was off on some things at the beginning, and seeking more any informed insider comment on where I wound up...

Narad #32
You are, of course, correct. I had mis-remembered and mis-stated. So I should have said "Jesus told her she was healed, thus making it OK for her to leave chemo." A bit of a nit-pick, but i grant it matters.

a hospital system that, mildly, committed every sin in the world

Typical Canadians.

You cry for one child that died because of poor medical care?

Actually, the sorrow is prompted by a child dying because they were ydenied available good medical treatments and instead were given something other than medical care (poor or otherwise).

And yes; one can both feel remorse for things our nation may have done in the past while still feeling both sorrow and anger at the unnecessary death of a child.

@ Sastra #31

COLONEL TOM:
You cry for one child that died because of poor medical care? Were the hell were you when thousands were dying in the “schools”.

SASTRA:
Are you really going to make this sort of argument? The ante can always be upped.

Sastra, I think you may have taken the Colonel's "you" to refer to Orac, or sbm advocates, when it seems to me to refer to the dominant culture in general. RI's coverage of this story is but a drop i the media bucket. This is Big News in Canada, and indeed the dominant narrative behind the news frame is paternalistic and frankly racist (in the sociological sense, not the conscious bigotry sense): Yes, now mainstream Canadian society cries for health of Native Children — to justify a hospital's attempt to have them removed from their family and culture, and made wards of the State, just like the "schools". And the hospital went directly to the custody issue — an agency with no competence to evaluate medical claims — circumventing the process that could have quickly resulted in a mandated treatment plan for Makayla.

So, yeah, it's not Orac's job to cry for injustices done in some other country before his time. His job is to comment on this case as a medical expert admitting that as a white American, he's an outsider and his perspective is limited. What Colonel Tom is saying is that the broader media attention being given to this case evidences a noxious stench of hypocrisy. It does.

Orac does the medical science. There's a lot more to this case than medical science, a WHOLE lot. Orac seems to kind of get that, but can't really credit it properly because he's an oncologist, not a Candian social historian. If you want a COMPLETE picture of this story — if you want to assess anyone's motives, or how well-informed their actions may have been, or how they interpreted actions by other parties, some background on the Schools is 100% essential.

Are you really going to threaten to up the ante on a Native American? Good luck with that...
___________
Free Leonard Peltier

I don’t know the details of her particular family and kin

But you know her lab results?

Her BUN levels were spiking, there was talk of dialysis.

BTW, what was with the curvature of the spine?

They are far more different than they are similar, as, among other reasons, most of the parties involved in J.J.’s case had Makayla’s case as a precedent.

Actually, I find them very similar in many ways. Same cancer. Similar time frame in rejecting chemotherapy. Same quack. Eerie similarities. The main difference is the legal case for JJ.

Also, see my comments above. I took advantage of the back end of WordPress to put my comments directly after the person to whom I was replying.

Colonel Tom:

When I say “Evidence based belief” I mean it is a direct observation made by individuals.

The term for that would be "anecdote".

Sometimes I think I am speaking a different language.

Narad, knowing local medicinal people, actually knowing relatives of my dead first wife (leuk complication thereof, age 19), is different than knowing every single family on another reservation. There is also the published reports in the local paper. There is also the very simple fact that people of the longhouse do not lie, ever.

Orac, Learn a little empathy, if you don't understand your patients how are you expected to heal them? These are people whom know the Canadian system has betrayed them in the past, that is betraying them in the present and then you expect them to somehow make an irrational leap of faith and go "Aiyee, well I am sure this bunch of EuroCanadians have only my best interest in heart". Look, just because Wiley E. Coyote fell for that running through a dust cloud until he realized that there was no ground beneath his feet every single time, don't expect the NDNs to be as gullible. You want to save children, then you must earn their trust.
I will shed tears that your heart is so heart not to understand.

Sadmar, thank you for understanding. Had my voice had any weight in the matter I would have had had those children going through the chemo protocol, not at McMasters but somewhere that would have had some sense. Yet, my voice did not. I am not their nation, not even their clan.

P.S. Just as almost a humorous aside the daughter of my wife, aka "my daughter" returned to school after being out for the last two weeks. A mysterious illness, at age 13 (or she will be on the 22nd), she lost appetite, nausea, will to eat. She lost 10 lbs in a week. When she went to ped last week, the doctor scratched her head scarf and asked all the "emotional" questions and then all the test you'd expect. When my mind heard her mention the white cell diff, Like a dagger to my own heart failure heart. While we do not know what is wrong with her, at least it is not leuk, nor mono, nor infection.

"There is also the very simple fact that people of the longhouse do not lie, ever"? I"m sorry, but I really have to call you out on that one. People are people, be they people of the longhouse, EuroCanadians, Americans, Africans, Chinese, or whatever, and all people lie from time to time. To say that the people of the longhouse "do not lie, ever" is to attribute to them superhuman honesty. I do not accept such a claim any more than I would accept it for any other people.

That being said, I should emphasize that no one here—and I mean no one, least of all myself—is actually accusing the families of Makayla or JJ or the people of the longhouse of lying. That is a straw man you appear to have constructed. The reason anecdotes are not reliable is not because the people telling them are lying. Rather, it's because of normal human foibles, how our brains are wired. We confuse correlation with causation. We're victims of confirmation bias, in which we tend to remember things that agree with our preconceived beliefs and forget things that do not. We attribute agency to things that don't have agency. We misremember. Our memories are not photographic representations of the past, like a movie unwinding and showing things exactly as they happened. They're informed by our experiences, emotions, prior beliefs, culture, and things that have occurred since the memories were made. This is true of you. It is true of me. It is true of the people of the longhouse. It is true of all people, regardless of where they come from. When I question an anecdote, I'm almost never arguing that the person telling the anecdote is lying, because it is rarely the case that the person is lying. In the vast majority of cases, the person really and truly believes that what he is saying is the truth as he sees it. Rather, I am questioning the interpretation of the anecdote, which is frequently mistaken, particularly in medicine. It's a very common response to such analyses and questioning is for the person relating the cure anecdote to claim I'm accusing them of lying. I'm not. I'm simply explaining why the anecdote doesn't support the conclusions that person thinks it does.

In fact, I have spent a lot of time over the last decade analyzing medical anecdotes with respect to alternative medicine and antivaccine views. For example, parents who claim that their children became autistic after vaccination can frequently be shown to have misremembered. Cancer patients who attribute their being cured to alternative medicine, I have frequently shown to have actually been cured by the conventional medicine they took before they switched to alternative medicine. These people attribute their good fortune to the alternative medicine, but a critical evaluation of their stories almost always shows that they are mistaken to have done so. The reasons are fairly common: Not understanding the nature of cancer, not understanding the difference between primary and adjuvant therapy of cancer, not understanding that surgery alone can cure most primary cancers and refusing chemotherapy after surgery, while decreasing their odds of survival, does not decrease them so much that it is particularly surprising when they do survive. It's a matter of gambling and happening to win. Also, patients who refuse chemotherapy and die are usually not heard about.

In any case, these chemotherapy "refuseniks," as a colleague of mine has called them, most of whom are usually Anglos, often fairly well off, and react very defensively when these issues are explained to them. They don't even have the history of your people that causes their distrust. So I can imagine that JJ's and Makayla's people would be far more defensive and distrustful than even these.

As for empathy, I do have empathy. I have considerable empathy for the family, but my empathy for a child dying of cancer still outweighs empathy for those who are failing to save her. It outweighs religion, race, nationality, and history, none of which I deem an adequate reason to let a child die who can be saved. If that's a fundamental disagreement with you, so be it. I am but a humble blogger. Fortunately, I'm not the one who has to deal with JJ or Makayla or try win their family's trust. I am commenting here for a general audience and to counter a lot of the misinformation about Brian Clement's ability to cure cancer that I've seen being promoted by, for example, JJ's family and now Brian Clement himself. However, you should know that, over the years, I have been able to persuade some women with breast cancer who wanted to pursue quackery at least to let me or another surgeon operate on them. Again, surgery cures most breast cancer; so even if they refuse chemotherapy and radiation, getting them at least to agree to surgery gives them a reasonable shot.

Finally, it is not a leap of faith to believe that modern medicine can cure JJ and could have cured Makayla. It is science backed up by copious evidence that can be examined.

I am saddened by this poor child's death, not least because I am the parent of a similarly aged girl. My daughter's close friend is currently being treated for Rhabdomyosarcoma, which was originally staged at 4, but the current information is that due to aggressive chemo and radiotherapy the disease is retreating, and she may be one of those who can survive. Luckily her mother is a nurse, and she ensures that all real treatment is followed to the letter without falling into the hands of charlatans and snake-oil salesmen. I wish that all children were so fortunate, particularly those who have cancers which are far more survivable than my daughter's friend.

Calli Arcale

No, not "anecdote". My post grad research was a combination of information theory and how it relates to the biological side of the brain. Think more of a conditioned response. We accept our experience, even if our experience leads us away from reality. Take a person, given them a bowl of nuts to eat, and then deliver an electrical shock when they reach for a nut. Then explain to them that you've disconnected the wires, that the situation is perfectly safe. Then ask them to reach for another nut. There will be a delay over a person that was not shocked.

sadmar #23

"The tradition being respected is that of shady American practitioners to fleece the gullible. But that is an entirely American problem."

Um. Not quite.

Kelowna Naturopathic Clinic (http://natural-medicine.ca/about/clinic-profile/)

Richmond Alternative Medical Clinic (http://www.drmartinkwok.com/english/treatments.php)

Centre for Natural Medicine (http://www.naturalmedicine.mb.ca/treatment-services/index.cfm)

Heaven Sent Clinic (http://www.heavenscent.ca/clinic.htm)

Boucher Institute of Naturopathic Medicine (http://www.binm.org/naturopathic-medical-clinic/therapies-and-services)

Lifecare Acupuncture and Natural Medicine Clinics (http://www.acupuncturens.ca/services-and-therapies)

Quackery is NOT an "American problem". Unfortunately, it can be found from "... sea to shining sea ..." in Canada, as well.

Not to mention Europe, Asia, Australia, South America, and Africa. Hell, for all I know maybe it can be found in Antarctica as well.

Agreed Selena Wolf, I have never understood why they had the extra expense of going to Florida, when there are plenty of quacks locally. Would have been much cheaper.

Sadmar, while I have limited time in my medically induced semi-retirement, I will need some time to review what you've written. I did have some of the articles bookmarked.

The first one mentions the higher rate of terminal event in Native American children.

http://www.medscape.com/viewarticle/737273
http://www.ncbi.nlm.nih.gov/pubmed/21297632

A far older reference, which may or may not have been superseded

http://www.ncbi.nlm.nih.gov/pubmed/14559954

Unfortunately, based upon my own personal experience I don't know of anyone that has survived more than five years. Given a sample size of seven, at least my imperfect memory remembers seven in the last 20 years, that's 0 survivors with treatment out of 7. Two died during treatment. Not great statistical worth in that sample size.

I just read that Nature Genetics paper. It's actually quite interesting. I can't help but note this part of the conclusion, though:

Ancestry-related differences in relapse risk were abrogated by the addition of a single extra phase of chemotherapy, indicating that modifications to therapy can mitigate the ancestry-related risk of relapse.

So in other words, the ancestry-related higher risk of relapse can be eliminated with an extra phase of chemotherapy. Now, I admit that sucks for those with Native American ancestry because undergoing chemotherapy sucks. I get it. Really I do. I deal with women who are undergoing chemotherapy in preparation for their surgery all the time. On the other hand, this study shows that the increased risk can be completely reversed with more treatment. This is a very good thing, indeed.

As for your memory, how many of the people with leukemia were children? Leukemia survival in adults is considerably less than it is in children, particularly older adults. Also, how long ago were these people treated for leukemia? Leukemia treatment has improved dramatically in the last 40 years or so, particularly for children. A disease that was once a death sentence is now eminently survivable.

@ Orac #43

Makayla:
a. Bright, apparent independent ego
b. Evangelical Christianity
c. Severe chemo complications —> ICU
d. McMaster petition possibly excusable mistake
e. Native 'medicine' issue not central to the case, offered as post facto excuse by Brandt.
f. McMaster likely had no idea the Sault's would take Makayla to Brian Clement.
g. McMaster did NOT appeal the Brandt FACS decision.

J.J.
Makayla:
a. Passive, highly dependent on mother
b. No strongly expressed religious beliefs
c. No known complications from chemo
d. McMaster petitioned FACS knowing they would not intervene, and in the wake of commentary on the Sault case that criticized them for not seeking a mandated treatment plan for Makayla.
f. At the time of the appeal, McMaster knew J.J. was receiving the same not-traditional treatment as Makayla, yet failed to cite that in their application to the court.
g. McMaster's appeal of the FACS decision cites the 'native medicine' issue, despite the fact it was irrelevant to the custody case. This opened the door for the Judge's ruling.
h. At the time of the appeal, McMaster knew J.J. had fled to Florida, and the court's decision would NOT in fact, save her life.

Now, I am in no position to read the minds of anyone at McMaster, but I can sure see what their actions look like. And they look like exactly the precedent for kidnapping the bands claimed them to be. Having gone through the routine with Makayla, seeing that her imminent death would be the result, why would they take the same path with J.J? They had been reminded publicly about the option to seek a treatment plan order. They knew Brandt would not step in and seize a First Nations child by force. There is no excuse for them NOT to have known that filing for a custody action by FACS would result in a long legal battle that would likely be decided too late to save J.J. With J.J. and family fled, the ONLY reason thay had to file an appeal was to set a precedent for forcing FACS to act at a hospitals demand in future cases, short-circuiting the function of the Treatment Plan board. And the only reason to cite 'native medicine' in the appeal is to set precedent that undermines the autonomy of the bands in general. (The custody case is simply: she will die without chemo, her parents have withdrawn her, and addition to being a minor child, she evidences no clear will of her own. To enhance that claim with reference to any alternative treatment chosen, clearly that should have been depicted as the new-age Florida All-American quackery it is).

I’ve found that in cases in which there is a conflict with the family, the hospital, despite bending over backwards to do the right thing and treat the parents with respect, is always painted the bad guy no matter what.

That's certainly seems to be true, and fwiw I took a much more hard-line position regarding the intervention in Cassnadra's C.'s case than you did, and defended the hospital's action on moral and ethical grounds, not just legal responsibility. Quite late to the party on the Hershberger case, I have also defended the intervention, in part because the Hershbergers clearly strike me as loons, their Amish heritiage having little or nothing to do with their actions, which, in fact, are contrary in many ways to Amish principles, including the nature of the quack they chose to seek 'alternative' care from before fleeing the country.

When this controversy first appeared here in RI, I too was willing to give McMaster every benefit of the doubt. I assumed they were indeed bending over backward at every point, trying to get J.J. back into proper care. But when I dug behind the headlines into the background facts, something began to stink. The deeper I dug, the worse the stench became.

The problem with a 'boy who cried wolf' analogy here is that the 'boys' are in very different meadows, each cry is from a separate 'boy' and from a distance we don't know what reasons the 'boy' may have for sounding a false alarm, or having good cause to believe the alarm is warranted.

The Ohio Amish are not an oppressed group, and the Hershbergers are very much outliers. The larger issue around their case — having been taken up by Reason and other anti-government cranks — is individual parent's right to do whatever they damn want with their kids. It's f-you Obama and your socialist nanny state. It's irrational, and ahistorical.

Not so with the situation in Canada. McMaster's actions cannot be extracted from the politics surrounding the First Nations. Specifically, The Six Nations band is the subject of a ugly hate campaign mounted by right-wing extremists in the surrounding areas of Ontario. A blog post from one such conspiracy theorist was referenced here on RI by a couple commenters as coming from a 'First Nations Health Worker' going by the nym DeYo. DeYo is neither a health worker, nor a member of the First Nations. These medical cases are occuring in the midst of right-wing authoritarianism asserting power of a community that is supposed to be autonomous under the country's Constitution.

It's a long way from 'Publicized cries of wolf against hospitals are almost always false," to "No hospitals ever act act like wolves."

We do not know whether McMaster treated the Saults with respect personally. We do not know whether McMaster treated J.J.'s parents with respect personally. We do not know whether J.J.'s parents earned personal respect from the McMaster staff. However we can say definitively that McMaster's action showed no respect for the political conditions of the Six Nations band, and no respect for the practical conditions under which J.J. might have been brought back into treatment.

In light of what had already happened with Makayla, the ONLY practical chance McMaster had with J.J. was to file for a treatment mandate — which, under the conditions, they almost surely would have been granted. Had J.J.'s parents refused to comply, that would have put the onus on them, and kept the issue framed by medical effectiveness, not Native Rights.

McMaster didn't do that. They demanded the right to force the state to kidnap First Nations children on their medical say-so without proper review or oversight. They are the wolf.

Orac, I said within the last 20 years in my previous post, but upon discussion with a couple of The Women they corrected my memory. Within the last 15 years I have known 6 souls that have died before their 18th birthday of Leuk, two during treatment. The seventh, Ricky, took the sidearm method out of this world after obtaining the results from his 12th month follow up. Ricky was a good friend. He ran a tube of water so the blood wouldn't stain the floor. I do not know exactly what their genetics were nor can I confirm what type of "leuk" they died from. As I said, too small of a sample size to be meaningful.

I never counted my own first wife as that was almost 40 years ago, although technically she did not die of her disease either. At the end, she was shallow and gray, sunken eyes with just a few tatters of her beautiful hair, her unborn a unnatural distention upon a skeletal body.

The historical mistreatment of aboriginals by the government likely played a role in these children's parents and community distrusting conventional medicine.
But if so, to me that just makes the actions of these charlatans in Florida even more reprehensible, not just exploiting the suffering of a cancer patient and her family, but the historical suffering of her whole nation.

@ Selena Wolf #49

Um, not quite on the "Um. Not quite."

Quackery is NOT an “American problem”. Unfortunately, it can be found from “… sea to shining sea …” in Canada, as well.

I have no doubt.

"The only tradition being respected there is that of shady American practitioners to fleece the gullible." is a quote from Lancelot Gobbo #8. He was referring to the death of Makayla Sault. Her family turned to Brain Clement of the Hippocrates Health Institute in West Palm FL for treatment. Makayla is just the latest victim of many cancer patients Clement has taken for all their money, then thrown out to die as his promises of cure w/o conventional treatment evoporate. The fact that HE is allowed to continue his extremely profitable scam, AND present himself as an upstanding member of the Palm Beach business community IS an American problem.

The discussion was about Clement and the death of Makayla Sault. It was not about quackery in general. IIRC, Canada has it's own cancer quacks. I doubt any of them have a body count equal to Clement, as he probably tops that leaderboard. But who's counting? Dead is dead.

You provided 6 links to quack practices. Only 3 of them mention cancer treatment on their websites, and none appear to specialize in it. These 3 do offer some pretty sketchy therapies in addition to their over-reaching claims. In short, they look dangerous. The other 3 appear to be doing your basic placebos, hand-waving, and diet treatment of chronic conditions, practices extremely unlikely to cause anyone to die by forgoing conventional medical treatment.

Any implicit comparison between a run-of-the-mill acupuncturist and Brian Clement is like comparing the 'terrorists' who put the white flags on the Brooklyn Bridge to Timothy McVeigh.

As for the Centre for Natural Medicine in Winnipeg, the Kelowna Naturopathic Clinic, and the Life Care Acupuncture & Natural Medicine Clinics in the Maritimes (which seem to be primarily in the fertitlity rite business) I can gain no insight into what treatments they actually promote and to whom from their websites, so I have no clue whether or not they have caused anyone serious harm by leading them away from conventional treatment for any sort of dangerous progressive disease. So unless you have at least one documented corpse, you belittle the horror of Makayla Sault's death with your absurd false equivalencies.

I have said REPEATEDLY that the greatest overall public health danger in quackery comes from Naturopathy, as it has the best chance for achieving an unwarranted legitimacy in the political sphere. If you want to smite the Naturopaths, you go girl! I'm behind you 100%. But you have essentially Godwinized your case by trying to liken them to a state sanctioned mass murderer, and that will not help your case one tiny bit.

Neither, BTW, will dropping a smart-ass 'Um,' when you haven't read the fricking post enough to pick enough the obvious context win you friends and allies. Which you need, because in case you haven't noticed, the Natuopaths are organized, funded, and play in the PR rink with the big boys, while your game is sitting on the bench in the Pee Wee league.

Um, not quite on the “Um. Not quite.”

Could you remind me of the thread in which you decided to deliver a lecture about the Amish?

So how many medical doctors from the First Nations were consulted? I know they exist, because I have met a couple. Not uncommon when you live close to the Pacific Coast near the USA/Canadian border.

In fact one of the stars of Sherman Alexie's Smoke Signals is a medical doctor.

There are even programs, or at least one, that encourage native peoples to become doctors. Surely there are some in Ontario.

An article on the primary author of the second link in my previous comment: Walt Hollow, MD.

So how many medical doctors from the First Nations were consulted?

Plural!

"Your link talks about painful treatment, dismissing the findings of NDN doctors that she has permanent damage from the chemo."

Are you really going to threaten to up the ante on a Native American? Good luck with that…
___________
Free Leonard Peltier

Hey, that would make for a really insipid T-shirt.

Narad, I see no reference to to real medical doctors in this link. Please be more specific.

Which First Nations doctors with actual medical degrees weighed in on the treatment decisions? Colonel Tom do you have that information? How many First Nations medical doctors thought that the totally unqualified loon in Florida offered a solution?

No more idiotic jokes, give us real answers.

But if so, to me that just makes the actions of these charlatans in Florida even more reprehensible, not just exploiting the suffering of a cancer patient and her family, but the historical suffering of her whole nation.

Indeed. One can't help but note that the way JJ found out about Brian Clement is through his traveling around the Six Nations and actually recruiting patients from the indigenous peoples. For example, Makayla's family went to a talk by Clement in May. They were taken in, and developed total faith in Clement as the one who can save Makayla. Similarly, JJ's mother heard about Clement through a friend of the family, likely thanks to his having given talks around her community.

Indigenous people are being specifically targeted by a white quack con man from Florida. One girl is already dead as a result. The second girl will almost certainly die unless her parents reverse their ill-advised course and will definitely relapse if they don't reverse course soon. The best outcome we can likely hope for for Makayla right now is for her to relapse, her parents to take her back for chemotherapy, and for her to respond, although the odds of her responding will be much lower than they would have been if the parents had just continued the chemotherapy as planned.

AND THE NEWS READ "ABORIGINAL GIRL DIES AFTER REFUSING CHEMOTHERAPY'. IN FACT SHE HAD CHEMOTHERAPY WHICH DAMAGED HER HEART AND KIDNEYS......THIS IS WHAT SHE DIED FROM.

Do not shout, Louie. And read up on well-known CNS complications of leukemia.

https://www.seattlecca.org/client/Chamberlain_leukemia.pdf

Nice summary.

As I pointed out over on the Doubtful News thread, hypertension sufficient to cause a stroke is rare in a child. Intracranial hemorrhage due to leukemia is a common terminal event. Similarly, an ischemic stroke can occur due to (1) leukostasis, with high white blood cell counts (as can be caused by acute lymphocytic leukemia) causing sludging in the blood vessels of the brain or, less commonly, (2) a red blood cell count so low that it causes lack of oxygen to the brain. It's thus far more likely that Makayla died of end stage leukemia and that her stroke was just the terminal event than it is that chemotherapy-related complications from many months ago resulted in her stroke. I have no doubt that Makayla's family and people believe that the chemotherapy caused her stroke, but the likelihood that it did compared to the likelihood that progressive leukemia caused her stroke is infinitesimally small. From a medical and oncologic standpoint, it's just not a convincing story, as much as they believe it.

Colonel Tom:

No, not “anecdote”. My post grad research was a combination of information theory and how it relates to the biological side of the brain

Yes, anecdote. An anecdote, in this context,means a recounting of a singular event. By itself, it doesn't rise to the standard of evidence because you have nothing to judge it against. You need many observations, systematically obtained so that they can be compared directly, before you can really draw a conclusion.

For instance, I get migraines. I tried having a glass of wine to relieve muscle tension, and lo and behold, the headache went away! Is that evidence that wine treats migraines?

Well, probably not; the prior plausibility is low since there is evidence alcohol is a common *trigger* for migraines. That is, just going by the body of knowledge on the subject, you would expect it to make the migraine worse, not better. Yet my migraine got better! Am I an outlier?

Well, unfortunately, no. I tried it several more times, and was able to determine that wine does not make my headache better -- on average, there is no improvement, and on several occasions it got worse. It's just that sometimes my migraines only last a day; I'd had that glass of wine when my migraine was already resolving on its own. The wine had nothing to do with it.

That's the difference between anecdotal evidence and scientific evidence. The former is impossible to judge; the latter can give you valuable insights. You will not impress people here if you do not appreciate that distinction.

Now, anecdotes are absolutely useful. They can be hypothesis-generating (for instance, the use of sildenafil for impotence started from the anecdotal reports of users in the trial phase that it had an unexpected but much appreciated side effect). And then there's what I think is the more important value of anecdote: they give you a reason to care. They humanize the people and the situations they find themselves in. Anecdotes can inspire in many ways, and that makes them enormously valuable. It's still important, though, to be aware of their limitations, lest we lead ourselves astray.

@sadmar #53

"Not so with the situation in Canada. McMaster’s actions cannot be extracted from the politics surrounding the First Nations."

Whoa!!! McMaster's actions were based on the child's right to proper medical treatment, as well as issues surrounding whether- or not she was making an informed decision. It was the Six Nations and Makayla's family that turned it into a political-cultural issue, hence muddying the waters and turning the entire issue into something it was not.

Calli Arcale, you are missing the point that I am trying to make. Individuals make decisions not based upon a rational weighing of all available evidence. My never completed Ph.D research had more to do with looking at an aspect of conditioned response, where the weight of an actual experience overwhelms "rational" thought. You can call it anecdotal if you want, but then you are lumping it into the greater category of second hand story and obscure example. I'm talking about you, I and the Pope, give more weight in our decision making process from personal experience that we do to statistical analysis.

I'm not sure you are understanding that I am saying that this personal evidence based experience is DETRIMENTAL.

To further expand, with your wine drinking example. Now you appear to be a person of intelligence and understand the detrimental impacts and you will cease the behaviour. Yet, most people don't have your medical knowledge, and say John Q drinks a glass of wine, feels better. This behavior and response is repeated . There will come a point where John Q drinks every time he gets a headache, even if the wine no longer helps, even if the wine is actually detrimental.

You are looking at the concept of anecdotal from a policy/science based over-view perspective. I was looking at the concept of a class of a condition response that leads to poor decision making. Your perspective is completely valid in looking at a drug trial or FDA approval, mine is needed when looking at understanding the behaviour of an individual.

This is point that I am trying to make, the poor behavior of McMaster's Children hospital created an event that has lead not just to a negative outcome in this case, but an example that will be alive and active in the minds of thousands of First Citizens every time they make a decision about the care and treatment of their own children. They saw with their own eyes the treatment of Makayla and Jada at the hands of "wolves" . They saw their beliefs, their heritage, their own health care professionals insults, demeaned. They then saw their attempts at compromise treated like piles of brown. They have nothing but a negative experience, the outcomes of that one act will poison the community for a generation.

Now, the question becomes what do we do to change human nature away from its over reliance upon personal experience. That is the hard path.

You can call it anecdotal if you want, but then you are lumping it into the greater category of second hand story and obscure example.

Incorrect.

I'm sure Calli can speak for herself, but in medicine an anecdote is simply a reported observation about a single individual's medical course. Such anecdotes are often first hand. Because of the quirks of human cognition that I discussed earlier in this thread, humans are very prone to misinterpret their observations and draw incorrect or unsupported conclusions based on anecdotes. Consequently, assuming the person describing the anecdote is truthful (which is usually the case) anecdotes are still considered the lowest form of medical evidence. They can sometimes be useful for generating hypotheses to test more formally but are not generalizable. That's why we need science.

Selena Wolf, if McMaster's had contacted the U.S. Marines to go onto Canadian soil to bring in a Canadian citizen for forced treatment, would you still feel the same?

What if, a bunch of Saskatchewan police flew into Montreal and attempted to extract a patient?

Either Canada has a rule of law or it does not. You can not just stop following treaties because you "donna wanna, its tooo hard".

"That’s why we need science." Then Orac, why do you ignore the science that shows that personal experience and observation has a greater influence upon behavior than abstract statistical measure.

It is a completely irrational and unscientific viewpoint to expect a wondrous miracle to pop into existence to change human behavior.

Jumpin' Jesus on a pogo stick! That's a fine straw man ya built there!

If you read this blog regularly (I know, you don't and that's OK given that you've just discovered it, but I'm just saying that if you did), you would realize that one of its main messages is that anecdotes mislead people into doing irrational things with respect to medicine. I long ago lost track of how many posts I've written looking at examples of just that phenomenon and then using such examples to try to teach my readers how to avoid such traps. Such irrationality that's baked into human nature explains much about the antivaccine movement, cancer quackery, and very bad decisions like the ones Makayla and her parents (not to mention JJ's mother) made. I mean, seriously. I've spent a decade illustrating such things right here on this very blog.

If you read my comments after this post, you would also not find anywhere me saying that I'm expecting that people will overnight value science over personal anecdote. What I am saying is that you do not understand what is and is not an anecdote, nor do you understand what they are good for in science-based medicine (not a lot most of the time). You keep coming across to me as completely misunderstanding what an anecdote even is, based on your response to Calli, which mischaracterized what she was doing in her comment. If you go back up a ways, you'll see that I wrote a rather long comment explaining how human memories are fallible, how people automatically misinterpret questioning their anecdotes as accusations of lying (something you, in fact, did when you said that the "people of the long house do not lie"), and why anecdotes can mislead.

Selena Wolf, if McMaster’s had contacted the U.S. Marines to go onto Canadian soil to bring in a Canadian citizen for forced treatment, would you still feel the same?

Highly illegal...but I bet we could pull it off.

Please don't. I live in the Detroit area. The Canadian border is just too close. :-)

Shay, I am sure they could. I had the honour of doing more than a few joint trainings with the J-heads, and they would find a way.

Orac, you believe yourself superior in knowledge and ability, you fail to understand. I will use a simpler example just for you.

There is nothing dangerous about a mutton barbecue. No reason for a rational mind to react badly when going into the wrong western Kentucky joint and smelling good Owensboro barbecue. However, a "lost soul"/wounded warrior that I see went full ballistic recently because of that smell, when we went to get him he was holed up in a gas station restroom repeatedly and washing his hand, his skin shredded and bleeding.

He had been a good soldier. On of the members of his unit, who as he put it was a GD N.York Jew Sodomite, had pushed him away to take the full brunt of an IED. The last meal they'd eaten had been some local goat/mutton Afgani dish, as he awaited the medic he tried to push the intestines back in, the smell of his last mutton meal commingled with blood and crap.

So, call this a strawman if you like, but please go to hospital and tell that Sgt that he is just being irrational and does not understand that it was an anecdotal event that causes him to awaken at night in scream,sweat and piss.

While that is an extreme example, the principle is basic. I, and others, separate the conditioned response behavior of personal experience from anecdotal technique of rhetoric.

I am really trying to simply this.

A global warming denialsit will say that global warming can not be happening because today is warm.

A quack doctor will say, look these two kids died during chemo, so chemo is bad.

A person with evidence based biases will say "I don't eat mutton because I associate it with death"

Sigh. I give up. You keep constructing straw men that demonstrate that you do not understand what I am trying to get across and are harping on a disagreement when there is none, at least not on examples you've used. Again, as I pointed out, I've been discussing such issues for a long time now. What you don't understand is that the biases you are describing are not "evidence-based." They are anecdote- and emotion-based. And, yes, humans are very prone to such things. It's nothing I haven't said myself probably thousands of times over the last 15 years.

Contrary to what you think, nothing I have said contradicts anything you're saying here. Nothing. And I understand everything you've said, so much so that I would point out a mistake you made. A global warming denialist would not say that global warming cannot be happening because today is warm. A global warming denialist would say global warming can't be happening because today is cold.

Captain Tom:

I’m not sure you are understanding that I am saying that this personal evidence based experience is DETRIMENTAL.

You are correct -- I did not get that impression from what you posted. I had the impression you were elevating the stature of this type of evidence. I get what you're saying now. I don't really agree with your very gracious description of me as a very intelligent person thus being less vulnerable to error in this regard, though. While lovely and appreciated, I know it's not my layperson's knowledge of medicine that protects me, nor my intellect. It's critical thinking that does it -- questioning my own conclusions. Going along with what you said, questioning one's own conclusions goes against instinct, and so I do not always remember to do it. Probably I am worse at it than I think, but I can't ever know.

One interesting thing that you might want to explore is the fact that the well-educated seem to actually be *more* prone to critical thinking errors of this kind. Witness the explosion of anti-vaccinationism among highly educated and wealthy families. They're not stupid or crazy. It's been suggested, in fact, that very intelligent and educated people are *more* likely to make these errors, because they are more skilled at coming up with defenses for their viewpoints.

Orac is also correct, though, that I was definitely not lumping personal experience in the same category as second hand stories. I'm not dismissing anecdotal evidence. I'm saying that if you want to be understood, you should use words the same way. You acknowledged that you do not use these terms in the same way. That is unfortunately the root of the communication problem here. So I provided the correct term in this setting for what you were describing. Anecdotal evidence. When someone in this setting says "evidence-based", they are generally referring to the totality of evidence. Not just one specific bit of it. And when you look at the totality of evidence, you can see that they are wrong. Their conclusion is based on very limited and in some cases misframed evidence.

We get a lot of people on here who defend outright woo on the basis that "I've seen the evidence!" which consists of them seeing what a quack has led them to see about their child. That's why folks here get a bit jumpy about someone calling that sort of attitude "evidence based".

"A person with evidence based biases will say “I don’t eat mutton because I associate it with death”"

OK, I take back a lot of what I said. That is not comparable to my wine-migraine example, nor to the chemo refuser example. A person who says that knows that it's an emotional association that brings up unfortunate memories. A person who refuses chemo because they saw someone die while on it doesn't see it as an emotional association, they see it as *fact*.

I really don't think you understand the hole you're digging for yourself here.

Calli, I have little care if I am in a hole or not. I am frustrated why so many seem to believe individuals bases their decisions based upon abstract facts. Two children had turned away from the best course of medical treatment to save their lives, because of the historical and ongoing relationship that wolves wearing white clothing have caused. You say you trust the scientific method, I can say I trust the scientific method. That does not change the fact that a large portion of the oldbloods have so little trust in the medical establishment that they are now doing actions that are detrimental to their own health.

I honestly ask you, why should they? Given the history of the last century, the nutritional experiments and everything else, why do you expect everyone to have such a developed superego that they can understand to divorce themselves from personal experience.

P.S. I am pretty sure you are an intelligent person.

One last thought, although Ricky died of his leuk he did last the two and half years of chemo and his last year of remission. He lived long enough to at least know the kiss and first love of a girl, so I guess that is something.

His mother had originally called me in to talk to her, she was very much on the fence about if he should go through the treatment. Scared, afraid, knowing her son might die, all the statistics and numbers were not enough to convince her. She wondered if she should just let him die naturally, as the will of the Creator.

I looked into her eyes, I repeated the story of my own first beloved and how she had died and what it had cost. Then I swore to her with all the weight and authority that I have in my song, that I would take any chance to give her child another day of life. So then, she knew the path that we needed to walk.

Well, my point about the hole is that you're making it harder for your point to be heard. I'm not sure what you hope to achieve here if you don't care about that.

I think you might miss my point about intelligence. I thank you for the kind words, but intelligence is not a predictor of good critical thinking skills. And in fact, it might make it *harder* to be a good critical thinker, because the intelligent person can more deftly defend their false beliefs.. Personally, I think the only trait that really helps with critical thinking is humility, not intelligence.

"Given the history of the last century, the nutritional experiments and everything else, why do you expect everyone to have such a developed superego that they can understand to divorce themselves from personal experience."

I'm not expecting them to, and I don't think it's a matter of having a more developed superego. (See my point about humility above.) For someone who wants us to see the point of view of these people, you seem to have a rather low opinion of them. Critical thinking isn't a matter of divorcing oneself from personal experience. It's a matter of understanding that there is more than that.

Calli, Aiyee, there are two broad categories of people in this world. Those that use their intellect to seek the truth, and those that know the truth and use their intellect to construct their reality.

On the last point, we likely will need to walk two different paths on this. It is mine to see people as they are and try to steer them to better. At least, to have them ponder what they have not pondered.

Nor was it my intent to cast the oldbloods in a poor light. I am struck by the irrational behavior of those that expect our experience centuries to be thrown out because some want us to believe that somehow, things are different now. You are welcome to try to explain why the same culture that has never done right in the past is suddenly to be trusted.

Do you want to do fact based analysis of this situation? Then take all of the interactions between oldblood and EuroCanadian society, chart the outcomes, now explain to me why based upon the evidence there should be trust? Isn't insanity repeating the same actions over and over and expecting a different outcome?

P.S. Drinking more than three glasses of milk a day leads to bad health outcomes.

what people will say if she died after chemo?

In other "shocking" news, the toxicity test from the magical "Kearns Disintegrator" have came back.

Who could have seen that one coming?

@ Selena Wolf # 68

It was the Six Nations and Makayla’s family that turned it into a political-cultural issue, hence muddying the waters and turning the entire issue into something it was not.

That would be mere assertion w/o evidence, completely oblivious to the facts set forth in #53 and my previous posts in this thread, to which you attempt no rebuttal — and probably have not bothered to read. At least Toto, Greg Young and other bat-poop loonie trolls on RI actually read comments and make attempts to reply to the points therein. If you can't do as well as the trolls, I suggest you find something better to do with your time than embarrassing yourself further with abysmally arrogant ignorance.

BTW, Makayla Sault was a member of the New Credit band, not the Six Nations. You have absolutely no clue about any of this.
________
To those readers who can actually read: the difference between the two bands adds another point of possible illumination. The New Credit band is small, the Six Nations band much larger. As such, the hostility toward the bands from their EuroCanadian neighbors appears to be focused on the Six Nations, with nobody giving much of hoot about New Credit, where Makayla Sault's father is pastor of an Evangelical Christian church. Thus, I note with some interest that:
1) McMaster did not appeal the decision of FACS not to take Makayla into custody, thereby abandoning her to the clutches of Brain Clement.
2) Though Makayla's case made the news in Ontario, the poop did not hit the major national and international fan until 'J.J.' the Six Nations child entered the picture, which brought out DeYo and the other Six Nations haters.

But, no, white people don't have politics. It's all about medical science for them. Those damn Injuns with their juju are the only racists here. So can we get them the hell out of our way, send 'em to Manitoba or something?

See, if you think there aren't several real estate developers who've already sketched out rough plans for the Six Nations rez, have connections in the Canadian media, and are willing to play the long game to get what they want, you're incredibly politically naive. Big Real Estate makes Big Pharma look like angels from heaven above. (c.f. Sterling, Donald.)

I hope I am not the only one here who sees that neither sadmar nor Colonel Tom are being honest actors. If they were to be honest (and tell no lies as people of the longhouse never do) they would say to you that it doesn't matter if a girl (or two!) die(s), what matters is that the autonomy of their tribe/clan/people/longhouse is established. I don't know about sadmar, but Colonel Tom has confessed he is banned from entering Canada—I don't know why nor do I care for the sake of this argument, but I have to assume he has committed some offense in Canada that has resulted in that ruling. I don't give a shit about the ethnicity of children who have leukemia, I speak as a mere physician who is currently receiving chemo for leukemia himself, those children deserve the best that their country—Canada—can give them. I hate to hear excuses as to why this should not happen.

@Wendy
They will say the treatment failed. However the only hope she had for recovery was in chemo and instead she stopped valid, proven treatment and went to a charlatan thereby reducing her chance of survival from 70% to 0%.

@sadmar #86

Yes, I am aware that Makayla Sault and her family are of the Mississauga/New Credit Band. And, yes, I am very aware that it is different from the Six Nations. However, from both the Six Nations and Makayla’s family (see? I did mention them separately; hence, indicating my awareness that they are separate entities) have been united in their support of the Saults. However, the Six Nations continue to assert that this entire issue is indicative of the larger historical-political issues surrounding First Nations people. Some have, recently, even gone so far as to bring the very painful issue of the Residential Schools into the debate.
And that is what I, personally, object to.
McMaster University Medical Centre (MUMC) filed a report with the Brant (not, I might add, “Brandt”) Children’s Aid Society when they were informed of Makayla’s decision to quit treatment. This appears to have been standard procedure; MUMC has a Child Advocacy and Assessment Programme (CAAP) which results in regular consultations with local Children’s Aid Societies (and vice versa) to ensure the safety of all children that come through their doors. The concern was that – as an eleven-year-old – Makayla may not have the emotional maturity to completely understand the ramifications of her decision to complete chemotherapy.
The Brant CAS investigated and decided that Makayla did have the emotional maturity to make the decision that she made and, it is my understanding that MUMC accepted this finding and didn’t pursue the issue further as their main concern had been addressed.
Issue closed.
Unfortunately, it was not to be. Continued agitation by – predominantly – the Six Nations (less so by Makayla’s family) continues to bring forth the raw spectre of the historical treatment of First Nations people at the hands of White Government: broken treaties, residential schools, forced-adoption programmes and other abuses to numerous (and irrelevant) to name here. BUT THAT IS NOT WHAT THIS IS ABOUT. This is about whether- or not a child has the ability to make an informed decision about her disease. It just happened to involve a First Nations family.
[I won’t even get into the fact that this family – as Evangelicals – place a great deal of belief in spiritual visions and “miracles”. It will just muddy the already murky waters further. But I digress.]
Now, I don’t know about you, but every so often this type of case happens in Ontario. We’ve had cases involving Mennonite children and Jehovah’s Witnesses children who refuse life-saving treatment and, as a result, are always referred to the local Children’s Aid Societies for assessment. This has nothing to do with their cultural background and everything to do with the fact that it must be determined if the child and/or the child’s family is completely aware of what they are doing. This is not a bad thing. In fact, I would argue, that child protection is a very good thing.
So, I stand by my position that the Six Nations and Makayla’s family (see? Again I separate them) have blown this issue entirely out-of-proportion and turned it into a massive political issue rather than an issue of concern for the child. It has, unfortunately, become a highly controversial platform for airing past abuses rather than the more immediate one of ensuring that a child is receiving adequate medical care.

This has never been about racism. This has never been about First Nations vs. White Government. This has always been about what is good for the child and whether- or not the child can make an informed consent.

So 'assisted suicide' is legal in the US, as long as it is performed by a conman?

Or, perhaps, I should say the issue should have remained focused on the welfare of the child and their right to potentially life-saving medical care, and not devolved into the morass of political maneuvering that it has.

A child has died; perhaps needlessly. May she rest in peace.

@Selena & Lancelot:

I agree 100%, although I don't agree that sadder and Colonel Tom are being dishonest. Rather, I see as much cognitive dissonance in them as they no doubt see in us.

In any case, one child has already died, and another is very likely to die within the next year or two, because of this. That is why I tend to try, whenever someone brings up the historical and justified grievances the native peoples have with the Canadian government and its predecessors (obviously, those are not the words they use, but that is what the consequence of not requiring these girls to be treated is), to acknowledge these grievances but then immediately point out that what is really at stake here is the life of a little girl. Whenever I hear some of these arguments I seriously start to wonder whether the real subtext behind this is that if the price for asserting the independence of the First Nations against the Canadian government in this issue is unnecessary and preventable deaths of two aboriginal girls at the hands of a white quack from Florida who isn't even using traditional aboriginal medicine, then that's a price the girls' elders are willing to pay.

Of course, when I point this out I'm lambasted. I understand. I realize that it's inflammatory to say such a thing. On the other hand, try as I might (and, believe it or not, I have tried), I have yet to see anything written, either here or elsewhere, that has persuaded me that there is not at least an element of this going on here.

As I've said before, when it comes to children with cancer being denied a chance at life, neither race, country, nor religion really matter very much at all to me. Actually, they don't matter. I don't care if the children are white, black, yellow, brown, or red. Here, all I see is one little girl who has died an unnecessary, protracted, and almost certainly unpleasant death and another one following in her footsteps, behind her by mere months or, at most, a year or two. Truly, these girls' communities have utterly failed them.

But, no, white people don’t have politics. It’s all about medical science for them. Those damn Injuns with their juju are the only racists here. So can we get them the hell out of our way, send ‘em to Manitoba or something?

Now you're just getting downright silly. No one has said that white people don't engage in politics or are driven only by medical science. Rather, the argument I'm hearing seems to be that indigenous peoples don't engage in politics, which is equally nonsensical as saying that white people don't. All organized groups of people engage in politics. So what? That's akin to saying that rain is wet and snow is cold. The issue is what the politics is used for. And, again, as I point out above. The issue is not whether white people or indigenous people do or don't engage in politics.

It's the lives of two little girls, one already dead, the other dying (although she and her family don't realize it yet).

See, if you think there aren’t several real estate developers who’ve already sketched out rough plans for the Six Nations rez, have connections in the Canadian media, and are willing to play the long game to get what they want, you’re incredibly politically naive. Big Real Estate makes Big Pharma look like angels from heaven above. (c.f. Sterling, Donald.)

Now you're devolving into conspiracy mongering. Wake up, sheeple!

Perhaps Mike Adams or Alex Jones would like to have you comment on this.

The fact that I am "banned" from Canada is a mark of honour. I did my part for my wife's people at Oka, I have regret but no shame for my actions. Strangely, the U.S. military and to a lesser degree government had no great problem in my actions during the conflict. They problem they had with me, damn Reagan, damn Bush, is when I stood up for the rights of my C.O. when the nameless faces accused him of the crime of being a homosexual. When they spoke these words before his wife, before their children. Then they had a problem with me.

It was said, that I have no problem with the children dying. Then you don't know me. I have given what words as I can, but my standing is small as an outsider to her Sisters. They decide, it is their right as it is my honor to defend them. If any of the EuroCanadians truly wished the best for these children, they could have done it legally.

If you don't think this about racism, or culturalism, then you should not be trusted with sharp objects. I'm not sure you have the sense to point the sharp side away from yourself. Of course it is about politics, about forces that wish to degrade and destroy North America's oldest living democracy, that want to scatter the people to the winds, to end all that we were, all that we are, and all that we might have become.

Lastly, a little story we and the medical profession. In honour of the daughter of my wife's youngest who(m?) is 13 today. I am old, but not that old. My EuroAmerican wife was no spring chicken when this child was conceived. This was a very planned pregnancy, with all the steps you'd expect for a couple that were trying hard, but had not resorted to medical assistance yet. No fertility drugs, but tracking temperature and cycles. We had done the proper things on the proper days, and praise to the Creator it appeared that this pregnancy was going to proceed. Without many details, 9-11 weeks were normally when hope ended and pain began. Yet at 17 weeks and six days (+/- 3 days) into the pregnancy we had the ultrasound preformed. The fine doctor, highly recommended and well vetted told us the results looked fine for a 13 week fetus. Ahem, said the wife, the fetus is on its 18 week. No, said the fine doctor, I've looked at the ultrasound and based upon the size and degree of development the fetus is on its 14 week. (Yes, we confirmed that you count fertilization at week #2) No, we said, look Doctor we're an old couple, we know when this child was conceived. Ah, said the fine Doctor, you must have conceived it three weeks later.

So, we left, we thought about that fine Doctor who would not believe an old couple knew when they'd done the dance, not believe them when they had calenders and charts, temperatures and the like. We thought about what kind of Doctor he was, that he would not believe the words of his patients. We found another Ob.

The second Ob, she looked at the ultrasound, she ran her little tests and agreed with the first doctor of the most likely date of conception. But, we said, it is not possible, it was three weeks earlier. She did not believe us, but she listened. At 41 weeks she agreed to induce labour. When daughter was born, well, it was late. She came out, as the doctors told us "a little overbaked", the poor little thing said a single sad "melp" before being rushed to an incubator under enhanced oxygen. When she released a week later, the doctors pulled me aside and we discussed the potential for their being damage from the hypoxia.

Had we stayed with that first doctor, if my wife did not have a soul of iron and a heart of fire, she'd not been induced for several more weeks. The child would have never had the opportunity to be born, because a fine Doctor knew more than the parents.

Happy Birthday, Littleone.

@Orac

Wake up, sheeple!

Now you've done it!

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda. Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

If you do not think this about racism and culturism, then you really should not be trusted with sharp objects.

P.S. If we go by Webster's first definition for the word "Lie" which is the deliberate act of telling a false statement for gain or advantage, then no the people of the longhouse do not lie. It really hurts them when they have to deal with people like Brian Clement.

@herr doktor bimler, not just conmen. Most adults have the legal right to shorten their days by either denying treatment or choosing worthless treatment. I believe that death by McDonalds is a popular variant, death by Kools, death by quackery. However, you help just one person to take a knife to end their suffering and they are allllll over your behind.

@Colonel Tom

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda. Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

Clement is a product of humanity. Every culture has its charlatans who prey upon the unwary. What prevents his being stopped is largely to do with the laws that are in place. Those of us who support science-based medicine and would love to stop him can't just walk up to him, truss him up and take whatever measures we need to to stop him.

Part of the problem in these two cases is that the people involved are making it more about the clash of cultures, rather than making it about the lives of the children. While they may believe that they are doing the right thing, based on prior experiences, the arguments appear to be more, "We should be able to do X because of our culture" instead of "We should be able to do X because we believe it will save this child's life".

While it's important to understand the cultural background in terms of why the families are taking the course they are, the treatment these children receive shouldn't be about culture. It should be about their lives, their health, and what medicine will actually help heal them.

So because US government isn't able to shut down the operations of a quack, it's their fault the child will die?
And what if the quack moves to Mexico (home of several other cancer-quacks)?
I think the quacks are to blame, first and formost.

Is this about racism? How many dozens of children have died at the hands of Brian Clement, how many dozens more will die from his lies and propaganda.

I seriously doubt that Clement's actions have anything to do with racism. Rather, they have everything to do with greed. He will fleece any cancer patient he can, regardless of race, creed, nationality, color, or beliefs. My first post about him described how he took advantage of a young Irish mother:

http://scienceblogs.com/insolence/2013/12/20/when-false-hope-leads-well…

The vast majority of Clement's victims appear to be white, and the only color Clement appears to care about is green, the more the better. He saw an opportunity to exploit the distrust your people have for "western" medicine, and he took it.

Yet your culture can not handle a monster of your own creation. He lives and prospers within your society, yet you do nothing to stop a monster. How many thousands do you allow to die, a year?

It is true that Clement prospers because the law in Florida has not stopped him. I remain as puzzled about this as anyone. Indeed, I have written extensively lamenting how quacks like him in various states can thrive without the state medical boards doing a damned thing to stop them. So mea culpa for the state governments in the US.

However, you are sadly mistaken if you think that we are not trying to stop him and quacks like him. I know people who are trying to stop Clement, but cannot yet comment. It will be public soon enough. As for myself, I'm trying to stop Clement by lifting the rock and shining the light of science on the slime where he lives. It's the same thing sort of thing I and a friend of mine (Bob Blaskiewicz) have been working on for a while with respect to another cancer quack named Stanislaw Burzynski. It's hard, frustrating work. Perhaps we should turn more of our attention to Brian Clement now. Of course, doing that means taking some attention away from other quacks. It's a zero sum game, and there are too few of us.

Of course, it's necessary to point out that your accusation can be turned right back at you. Your culture cannot protect its own children from this monster any more than my culture seems able to shut him down and mete out to him the punishment he so richly deserves. He is currently prospering by preying on your children, after all, although mostly he prospers by preying on Americans and Europeans. Yet all I hear from the leaders of these girls' communities is support for their families' right to choose indigenous medicines. Can you not see why these statements come across to someone like me as extremely cynical?

@Todd W. If you knew a man was a murderer, was armed and pointing a sidearm at people, would you expect your society to be able to protect or at least prosecute after the facts.

Racism.

White society "We can't shut down a murderer because we have rules and laws in place"

Oldblood society "Our laws that date back a thousand years, we will respect the rights given to a mother. It is our law that all warriors will protect the rights of a mother."

Yet, somehow they are different.

You care to guess how many children have died at the hands of this quack?

@Colonel Tom

@Todd W. If you knew a man was a murderer, was armed and pointing a sidearm at people, would you expect your society to be able to protect or at least prosecute after the facts.

Oh, believe me that I do not for a moment condone Clement. He should be stopped, and those in the position to do so should do it. He should be hauled before a court, tried and convicted for practicing without a license, among other charges.

What I am saying is that we need to work within the context of the laws we have in place. We are limited in what we can do to achieve the ends that will protect patients from being preyed on by him. At the same time, we need to work to change the laws to make it easier for the respective authorities to act appropriately. Most medical boards lack teeth to do any meaningful action to stop quacks like Clement.

I, as a private citizen, cannot walk up to Clement and beat the crap out of him or kill him. If it is okay for me to do so, what is to stop a member of his family, or one of his supporters, from coming to do the same to me? If I were to kill Clement, certainly the end result would be lives saved from his predations, but that does not justify my being able to do so without severe consequences against me. If I were allowed to do so without repercussions, what is to stop someone else from resorting to the same means in a different context? Who decides when it's okay to murder someone and when it is not?

Since we are bound by the laws that we have, we must operate within the confines of those laws.

So, what are the warriors of oldblood society doing to protect children from Clement?

Exactly my question. I admit that our "white" society (which isn't so white any more, BTW) has failed when it comes to protecting the public against quacks like Brian Clement. Will Colonel Tom admit that his oldblood warriors have failed to protect Makayla and JJ from Clement?

Because they have failed them, every bit as much as our society has failed to stop Clement. The difference I see is that there are Americans and Canadians, myself included, who are trying to stop Clement. Now, I could be completely ignorant here. Maybe there are oldblood warriors trying to protect Makayla and JJ as well. Certainly I would hope so and expect so, based on Colonel Tom's words. If so, however, I have yet to see them. Perhaps Colonel Tom can help educate me: Who are the oldblood warriors trying to prevent Clement from preying on Makayla and JJ, not to mention the future Makaylas and JJs that he will almost certainly try to con?

@Orac

Who are the oldblood warriors trying to prevent Clement from preying on Makayla and JJ?

And what methods are they using to try to stop Clement?

Yes,

Just to reassure Colonel Tom, I'm not asking this to score points. I really do want to know what Makayla's and JJ's communities are doing to protect them; i.e., who the oldblood warriors are protecting their children from Clement and how.

Orac, of course you are asking this to score points. You run from accepting responsibility for the evil your own society creates, you divert and misdirect. Hundreds if not thousands have died at his hands, yet you only express concern when during a treaty dispute about the rights of a mother and her clan to have say in a child's life. '
'
Please remove the timber from your own eye before you waste your resources upon the mote in mine.

You seem to be accusing me of lying. I do not take kindly to such accusations any more than you do. I said I really wanted to know, and I do not lie.

That being said, I'll take your answer as either an admission that no oldblood warriors are doing anything to stop Brian Clement from preying on their children or that you don't know. Hopefully the latter. I'd hate to have to accept that thete are none.

How am I "running from accepting responsibility"? I've conceded there's a problem. I'm doing what I can about it. That's more than I can say about you, quite frankly. What do you expect, for me to fly down to Florida and wreak bloody justice for however many hundreds of people who died because they trusted Clement?

Finally. as for Makayla and JJ, they are currently Clement's most famous victims, and one of them is stiil savable. That's as goid a reason as any to concentrate on them. I can't bring back the dead; so I focus on the living.

You run from accepting responsibility for the evil your own society creates, you divert and misdirect.

Wait a moment. Shining a light on what this quack is doing is running from responsibility? Trying to educate people about what will happen if they trust this individual is running from responsibility? With all due respect, your comments are misplaced.

Remember, Clement is just one of the many quacks that Orac has written about. One way that Orac (and others here) work to stop those quacks is to shine the light on them, to expose them and to educate.

Hundreds if not thousands have died at his hands

Citation for the number of deaths caused by Clement? Hyperbole does not help matters.

I notice you still have not helped us learn what the oldblood warriors are doing to stop Clement. Every person works within the means they have to effect the changes we all agree need to happen.

"Hundreds if not thousands have died at his hands, yet you only express concern when during a treaty dispute about the rights of a mother and her clan to have say in a child’s life."

This is demonstrably untrue, CT. Orac provided a link to a post addressing and expressed concern about Clement in 2013, in his post @101,

Typo: should read "addressing and expressing", not "addressing and expressed".

I am flabbergasted that there are no First Nation oncologists or medical doctors in Ontario. Surely one would have been consulted as a person who knows both the traditional methods and modern medicine. And if there are none in Ontario there are plenty in the West.

@Todd W, it is a reasonable extrapolation from the length of his "practice" and the number of people that have been seen at his clinic. While speculative it is hardly hyperbole.

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

@Chris, there is also medical staff at the homeland, although obviously no oncologist. I could not speak for what advice the staff at Two Rivers said to the mother, but I believe they are competent (ish) people and likely gave the advice that you expect.

Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer?

I suggest you click the hyperlinked word "Orac" at the top of the page, in the phrase "posted by orac on january 20, 2015", before proceeding with this line of...well, for want of a more accurate word, 'thought/.

The fact that I am “banned” from Canada is a mark of honour. I did my part for my wife’s people at Oka, I have regret but no shame for my actions. Strangely, the U.S. military and to a lesser degree government had no great problem in my actions during the conflict.

This is as clear as mud. Were you on active duty 25 years ago?

it is a reasonable extrapolation from the length of his “practice” and the number of people that have been seen at his clinic

Those two items don't constitute the basis for any extrapolations, much less a "reasonable" one.

@Colonel Tom

When you said

Hundreds if not thousands have died at his hands

you were making a statement of fact ("have died" vs. "may have died"). If you are going to make accusations like that, then you best base it on actual facts, not speculation. Your extrapolation is no more reasonable than saying that because someone has murdered two people in a few days, and they are currently 60 years old, they have therefore murdered hundreds or thousands of other people.

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

While I admire the passion you have shown about this issue, again, your anger at Orac is misplaced. Let us turn your question around. What have you done to stop Clement from preying on these people?

Also, if you think that Orac is angry? You are quite mistaken. He has been quite restrained in his comments to you, but you do seem determined to invoke his anger. Why act as an adversary, rather than try to see common ground and work toward the common goal you both share?

@Orac, you sit behind a sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto. I am so impressed at your efforts. Do you document, investigate, bring charges before the Florida medical licensing authority, do you do anything but yowl and stammer? Such bravery you show. You do remind me of that doctor that would have killed the daughter of my wife, you expect respect without regard, and grow angry when confronted.

I was originally going to rise to the bait, as you are obviously trying to make me angry. You succeeded when you first accused me of lying about my intent when asking you what the oldblood is doing to keep Clement from preying on their children. I was going to respond in kind to your accusations and insults, but then I thought better of it. Instead, I went away for several hours, did other work that required doing, wrote my post for tomorrow, and then came back. I advise you to do the same, and step back. I fear you will not, but hope that you will.

In the meantime, I'll answer your question about documenting, investigating, and doing anything but yowl and stammering? The answer is yes. I do more than those things. I am the chair of the board of directors of a recently formed organization dedicated to standing up for science and fighting quacker and quacks like Brian Clement, the Society for Science-Based Medicine. Quite simply, you have no clue what you are talking about if you think that this blog is all I do to stop quacks like Clement. Your ignorance, however, is forgivable. This is, after all, the blog where I write under a pseudonym. However, finding out my real identity is quite easy, it is about the worst kept secret on the Internet. Nor is this blog "sporadically read." It gets between 300,000 and 500,000 visits a month, and my other blog, where I am editor and we discuss the same sorts of issues under our real names, is hovering close to 1 million visits a month. Those are not traffic numbers of "sporadically read" blogs.

What have you done lately to stop Brian Clement? Do you chair an organization (even a small one like mine) that works against such people? Have you complained to the Florida medical board about him? Or do you lament that these girls are dying at the hands of a white quack and do nothing? In fact, even if your characterization of my running "sporadically read blog ranting about to mainly people of your own ilk and trolls drawn thereto," I've done more than you have on this case.

Also, if you think that Orac is angry? You are quite mistaken. He has been quite restrained in his comments to you, but you do seem determined to invoke his anger.

Actually, Orac was angry, but, unlike Colonel Tom, he was able to restrain his anger and resist the temptation to counter an accusation of lying with the same.

Although it isn't customary for Plexiglass boxes of blinking lights to lose their cool, rest assured, I at least would not have been disappointed if you saw fit to unleash some not-so-Respectful Insolence on him.

A big thanks as well to Selena Wolf for clearing up some inaccuracies propagated by the usual suspect and the new guy.

I am, honestly, dreading posting this a bit, but would feel dishonest if I did not. So.

I completely believe Orac's assessment of the case. I am in favor of making it harder for quacks to pray on vulnerable people*, and for a real examination of when parents' rights to to their children represent a real conflict with the rights of those children.

But I think it's a real problem, as some people (not Orac, not even most people) here have alleged to say the tribes "made it" about race, or to pooh-pooh that history is really significant here--and not just history. I know less about Canadian NDN issues, but in the US, there are serious problems with Native children being put in foster care at really disproportionate rates (see the Lakota Law projects numbers), regular violations of the Indian Child Welfare Act about foster and adoption placement, and serious problems with IHS (Indian Health Services) administration. Not 100 or 25 years ago. Now.

Anecdata is not "evidence." But a lot of racial bias is not trackable by this kind of evidence, especially when the people keeping the stats are the ones in power to begin with. (Look at recent events regarding how poorly statistics about police shootings have been tracked federally.) But being wary about some kinds of interactions, for marginalized people, is not stupid or unfair or reverse racism or the equivalent of a well-off suburban mom's Google U on vaccinations. It's generally a reasonable response to a prepoderence of experiences. When the mayor of NYC says he has to talk to his black son about possible interactions with the police, that is a reasonable response to anecdotal experiences.

Again, I'm not saying this turned out well, or these were the right choices. But the implications that this started on a neutral field until race was "brought" into it is specious, and I really hate to see that attitude being accepted unquestioningly. Even if Colonel Tom was making his case really, really badly. And for people who experience racism in so many ways that are continually dismissed (not just in health care or legal issues--in athletic team logos, "hipster headdresses" cartoonish portrayals of Indians if any in mainstram media), having people dictate to them when it's a race issue will not help your case.

* I think vulnerable people includes people with serious illnesses and their families, but also especially includes people whose experience has already primed them to be wary of the establishment. Charlatans who tart up their quackery with ludicrious claims to cultural/ethnic traditions are among the worst, IMO

@Narad, 25 years ago I would have been Selective Reserve. I would be called to service after that date for the end of Bush War 1. It was not my intent to make things on events at Oka. Not to mention the Wisconsin Walleye War.

@Jubilee, there is the potential that I am doing association between certain individuals and that same Ob Dr from many years ago. It was the 13th birth anniversary yesterday, memories comes back.

I am, very unfortunately, now involved with the magical mystery Kearns Disintegrator, far greater than the most magical of devices ever conceived of in olden days. My opinion of the honor and skill of EuroCanadians is just growing by leaps and bounds.

@Jubilee

http://www.propublica.org/article/republicans-say-no-to-cdc-gun-violenc…

CBC had a "J.J." article yesterday.

http://www.cbc.ca/news/aboriginal/makayla-sault-s-death-shifts-the-spot…

I think Connie, the article author, has done a great job covering this story.

In her final paragraph, Connie writes:

"But now, with Makayla's death, there have been a number of calls, particularly in national media, to ensure that J.J. doesn't suffer the same fate. As the head of the Brant CAS, Koster might be the only one in a position to make that happen."

Unfortunately, given Koster's comments in the article and in previous articles, if Koster is "the only one" who could ensure that J.J. doesn't "suffer the same fate" (as Makayla), I suspect that J.J. is, as Orac put it, "doomed".

But, I guess only time will tell.

In my view, both Brant CAS and Judge Edwards failed in or outright abdicated their "child protection" role in respect of these girls.

I'm far from convinced that Canada's Supreme Court would agree that Judge Edward's Constitutional argument would apply ... or is appropriate ... in respect of situations involving a child with a life threatening condition.

However, as the case wasn't appealed, and hence will never get to the Supreme Court, this will likely remain a moot point for the foreseeable future.

I ... and I'm sure everyone else ... would be very happy if it turned out that a traditional treatment or combination of treatments did result in a cure for J.J.

However, this isn't what I think will happen and I'm not sure how mom will handle things if J.J.'s reported remission ends.

http://www.tworowtimes.com/news/kanienkehaka-girl-left-chemo-no-visible….

Jerry Coyne also nailed it.

http://www.newrepublic.com/article/120823/canada-lets-makayla-sault-die…

I might have to do a comprehensive update on my not-so-super-secret other blog for Monday, as it's been a while since I've written about the case there. It might be a little bit repetitive, given how I've written about it a couple of more times here since then, but I think it's something that needs to be talked about there as well.

@DGR

Why do you qualify it as "reported remission"? Do you doubt the test results as reported, or did you mean something more of the nature of her "so-called" remission. While it strikes me as rational to doubt this is a true remission, it strikes me as irrational to doubt these facts simple because they were written with red ink.

As far as your legal analysis, again your reference to the Two Row Times might present countre weight.

https://www.tworowtimes.com/news/can-court-force-six-nations-child-back…

https://www.tworowtimes.com/news/local/makayla-sault-alive-well/

I have no great expectation that Canadian Courts would respect U.N. Treaty. Obviously, from my side of things I'm skeptical based upon a long historical record, that Treaties provide much protection.

To the extent that this is politics, forced removal of Jada from Six Nations Territory would be viewed highly unfavorably. Never again.

It's quite accurate to refer to it as a "reported remission" because that's what it is. It is a remission reported by the mother in the form of a press release and confirmed by no other sources. Seriously. You're being annoyingly pedantic now and imputing intent where there is none.

That being said, I don't doubt that JJ very likely is in remission, because that's how these leukemias behave after the first few doses of chemotherapy. My term for it, however, would be "temporary remission," because, without additional treatment, she is close to 100% likely to recur within the next several months, as pediatric oncologists have described. The vast majority of patients achieve a first remission after initial chemotherapy, often even if the chemotherapy was incomplete. Keeping them in remission until they are actually cured, now there's the rub. That's the hard part. That's why more than two years of chemotherapy is required. Oncologists (and, more importantly, patients) learned the hard way the price of letting up too early. Back in the early days of chemotherapy for leukemias, particularly childhood leukemias, physicians were astounded by how rapidly remissions could be achieve; unfortunately, they were soon also astounded by how nearly every patient whose leukemia had seemed to "melt away" would recur within a year.

@ Colonel Tom

You asked "Why do you qualify it as “reported remission”?"

Well, it was "reported" in the Two Row Times article I linked to.

But, mostly just a personality thing.

Unless I have been able to personally verify information ... whether "written with red ink" or not .. provided by a third party, e.g., MSM, I don't feel comfortable presenting the information as an established fact.

Silly, I know.

For myself, I have no reason to question J.J.'s remission.

You wrote: "As far as your legal analysis".

More, my "opinion" based on a review of relevant documents.

Just as the statement from the article at the first link of your comment that "If the court makes that decision, it would violate Articles 10 & 24 of the United Nations Declaration on the Rights of Indigenous Peoples" is the opinion of the article author.

Here's the declaration:

http://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf

I'll just note that even if a court agreed that one or both of Articles 10 and 24 applied to circumstances identical to those of the girls, Article24(1) could be seen as conflicting with Article 24(2).

I'll also note that, whether we all agree with it or not, the position of the Canadian government is that the declaration is "aspirational" rather than "legally binding".

http://www.aadnc-aandc.gc.ca/eng/1309374239861/1309374546142

On the topic of U.N. declarations/conventions, as Judge Edwards made no effort to establish what medical treatment would, from an efficacy aspect, be in the "best interests of the child", it could be argued that Judge Edwards' decision violates Article 3 of the U.N. "Convention on the Rights of the Child", which reads:

"1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.

2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.

3. States Parties shall ensure that the institutions, services and facilities responsible for the care or protection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervision."

http://www.ohchr.org/en/professionalinterest/pages/crc.aspx

Beyond this, my reading of the Ontario "Child and Family Services Act" is that a CAS has wide latitude in deciding where an "apprehended" child resides.

http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_90c11_…

This being the case and in respect of the above-mentioned "Article 10", if the court had agreed that one or both of the girls should be "apprehended" for the purpose of ensuring required medical treatment, it wouldn't necessarily follow that the child would be removed from the reserve, i.e., if another family on the reserve agreed to house the child and ensure the received the required treatment, the CAS could have gone with the arrangement.

This is the decision re: J.J. rendered by Judge Edwards:

http://www.canlii.org/en/on/oncj/doc/2014/2014oncj603/2014oncj603.html

As indicated in the decision, Brant CAS had concluded that "J.J." was "capable", within the meaning of the Ontario "Health Care Consent Act" and just like they had with Makayla, to make decisions concerning her treatment.

http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_…

I'll just note that the Act has no age limitation, e.g., person 16 or older is deemed capable while person under 16 is presumed not (see Subsection 4(1) and 4(2).

Judge Edward did not agree with the CAS re: "J.J."' being "capable" under the Act.

He determined that the matter was a "child protection" issue and that his court was the appropriate venue for the case.

The basis of J.J. being a "child in need of protection would be Paragraph 37(2)(e) of the above-mentioned Ontario "Child and Family Services Act, which states:

"the child requires medical treatment to cure, prevent or alleviate physical harm or suffering and the child’s parent or the person having charge of the child does not provide, or refuses or is unavailable or unable to consent to, the treatment;"

I'd suggest that within the intent and purpose of the legislation, "medical treatment" should be read as "effective medical treatment".

Judge Edwards made no attempt to verify whether there was any scientifically valid "evidence" that the proposed "traditional" treatments would be "effective" for J.J.'s condition.

I suspect he was aware the "efficacy" issue might arise in respect of the proposed traditional medical treatment, as he later covered himself off by stating "Further, such a right cannot be qualified as a right only if it is proven to work by employing the western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights."

I'm not impressed by his reasoning in either of the above statements (though erosion of aboriginal rights is a legitimate concern that must always be considered) and I'm sure in most cases both aboriginal and non-aboriginal people would prefer that their ... and their children's ... medical treatment have some sort of empirical evidence that supports its efficacy/safety.

After deciding the "child protection" and "jurisdiction" issues, he then continued:

"[58] The evidence is also clear that, at the 27 August meeting with the hospital staff, and as testified to by Dr. Marjerrison, D.H. had expressed her strong faith in her native culture and was discontinuing her daughter’s chemotherapy treatment to pursue traditional medicine which she and her family believed would help to heal J.J.",

and:

"[60] It is at this juncture that the band argues the court must consider the application of subsection 35(1) of the Constitution Act, 1982, which reads as follows:

35.—(1) The existing aboriginal and treaty rights of the aboriginal peoples of Canada are hereby reorganized and affirmed."

I'll point out that there is no indication that any of the participants claimed that "J.J." should, for whatever reason, be denied the opportunity to avail herself of "traditional medicine", so I'm puzzled as to why in these particular circumstances the judge chose to entertain this argument in a family law child protection case.

Beyond this, my thinking is similar to that expressed by Professor Ryder in the article linked to below:

http://www.thestar.com/news/crime/2014/11/19/aboriginal_medicine_ruling…

The above article provides information, as you've also eloquently expressed, as to why distrust of, among others, the main-stream medical community, exists in aboriginal communities.

And I'm sure that Brant CAS and Judge Edwards were fully aware that "forced removal of Jada from Six Nations Territory would be viewed highly unfavorably."

However, as previously mentioned, I don't see that as being the inevitable outcome had the Judge decided that either girl should continue with chemo. Had this been the case, one would hope that both the band and CAS would have negotiated a reasonable compromise.

Whether or not either girl would over the long-term be better off having gone through the scenario you mention, with the accompanying emotional stress, etc. is a question I don't have the knowledge to answer.

I think we can all agree that no matter how things played out for these girls at least some of the adults involved would disagree with the decision.

What we're left with at this point is that aboriginal children with life threatening conditions are not afforded the same protections ... sometimes from their loving and caring parents' beliefs ... under child protection laws that are available to other Canadian children.

But perhaps the discussion of whether this is a desirable state of affairs and, if not, how it can best be resolved is best left to the overall Canadian aboriginal community.

Anyway, all of the thoughts I've expressed are simply my layman's opinion based personal interpretation.

Obviously other people will have other opinions that are no less legitimate than my own.

@Jubilee:

I am, honestly, dreading posting this a bit

I, for one, wish you had posted it earlier.

However, as previously mentioned, I don’t see that as being the inevitable outcome had the Judge decided that either girl should continue with chemo.

My understanding is that induction chemotherapy (which J.J. only completed 11 days of) requires inpatient hospitalization.

@ Narad.

"My understanding is that induction chemotherapy (which J.J. only completed 11 days of) requires inpatient hospitalization."

I wasn't aware of that. Thanks for pointing this out.

@DGR, thank you that was an excellent presentation.
I am many things, a lawyer is not one of them, nor am I a Canadian. At best, information from their council goes to "mine". While funds for lawyers and weapons for a siege are requested, not all legal issues are shared.
I am now confident I need not lecture you about the reaction that can occur when action is taken against a society of oldblood. This is the world we live in, sins of generations and actions of others attach themselves to all.

I would point out one area we must disagree upon. I do see this as a bias that, frankly, causes my dying heart excessive stress. It is spoken by others, and I see some of this in your words, as if Jada had no other protection from an gullible mother and thus the forces of imperial Canada must act to protect this child. I do not see it that way, she primarily has her traditional system, the Women. She has her clan. Above all of this, she has her government that could have taken action, if they have decided it was needed. Even if they are wrong, that is her government, and they did and have looked after her interests as best they could. Yet, when words are written about this situation their lawful authority is ignored and downplayed. She was offered protection by her government, you just do not believe that they made the best choices.

Well, I finally have an off-RI home for my longer posts. #1 real post there is comment on this thread. The post is incomplete. I posted it now as it address issues raised above about my intent, and about Orac’s positions and character. I feel these matters should be addressed ASAP, not wait until I can complete the post with a full discussion regarding the cases of Makayla Sault and J. J. I hope it will clear up some things. We'll see. Please take a look. Its not a 'regular' post. Thanks.
https://sadmar.wordpress.com/2015/01/25/makayla1/

Aboriginals don't trust us,for good reasons, thousands of lives of their innocent children are ruined by us, many have died,even while tying to get medical help and have been ignored.
We have to prove to them,that they can trust us,And that is a long haul!

So we must let them ruin the lives of their own children, with the help of white quacks?

@Renate, History is a continuous cloth. You can not expect that all that the oldbloods know about EuroCanadian society to be forgotten in a moment, all history ignored, all experience forgotten.

They are your quacks, removed the beam in your own eye before sending in Federal troops to remove the mote in ours.

Straw man. No one has said that.

On the other hand, you seem to be absolving the nations involved of all blame in this.

Someone on the not so secret other blog as posted how things are handled south of the border.

Let me say as a nurse that I find it......... absurd that Colonel Tom insinuation that McMaster was disrespectful towards traditional healing since the bulk of my texts about integrating cultural practices and nursing came from Canada and one of the articles primary authors was affiliated with McMasters..

https://books.google.com.sg/books?id=kdZLpKyys-IC&printsec=frontcover#v…

I also find it unlikely that she was given credible medical advice, given that the initial reporting as quoted here
http://www.ctvnews.ca/canada/cancer-stricken-first-nations-girl-forgoin…

had Garlow, her spokeperson falsely misrepresenting Ph+ as making Makayla more vulnerable to nausea.

@Colonel Tom: I'm impressed by your deep knowledge of the cultural context in these cases. Could I email you privately about a professional matter?

Emily, I speak for no one, with no authority. I have no right to speak in any other name than my own.

@Painrack, much of what I know about this situation is from articles I've read in the "Two Rows Times", facebook and call to war emails that have been circulation for many months. The fact that harsh words were spoken apparently is not doubted by many, the opinion that skill and diplomacy on the part of McMasters could have improved the situation is more of an opinion held by me. I do not see where you can take the statement of "Anyone that practices traditional medicine for cancer should be thrown in jail" as oil to calm the waters? When offered the opportunity to monitor the children's progress, McMasters refused. Surely it would have been better that they monitor the situation so that when and if conditions deteriorated they would be there to advise wise treatment? To refuse to monitor, it strikes me as spiteful and petty. At least another organization offered to step forward on monitor Jaya's condition, so that there is a chance to be able to steer towards better treatment.

@Painrack. There was an excellent letter from a physician at McMaster's to the Two Row Times, he was very respectful and hopefully his act of honour will be remember the next time a child needs treatment.

Nor do I understand why McMasters apparently has so little trust. I see a thread of hostility from the People that I note but can not explain.

Colonel Tom, the statement as reported was “At first they said to the family that traditional medicines were 100 per cent ineffective,” Garlow said. “The doctors actually said to them that anyone who says that traditional medicines will heal this cancer should be thrown in jail."

That's a very important distinction from what you quoted. Your distortion of the quote itself is instructive. Verbal comments are frequently misinterpreted and distorted. If your reading of the article was misinterpreted, why not a harried discussion where the parents were emotionally distressed from seeing their sick child ?
Furthermore, actual true traditional Indian healing was published as routinely practiced, with guidelines on how to accommodate such practices from a private room, the use of chanting and visitation from the tribe. Herbal medications were the only iffy issue due to its potential drug drug interaction.

Could you imagine a compassionate Doctor, vehemently arguing that Clements was outright deceiving the tribes and should be thrown into jail for insisting that wheatgrass will heal cancer or that it's any form of traditional Indian medicine as opposed to traditional Eurocanadian quackery?
Or is Clements not part of the Anglo exploitation of minorities?

@PainRack I do not know why this idea of "Traditional" medicine seems to make the anglo press so much. It is a diversion. The question boils down to, do the Treaties signed with the ability of self-rule and sovereignty still matter. J.J. has a government that looks out after her welfare, abet you don't like their decision.

""""CHANTING""" I think you mean prayers.

As far as the quote, my mind is old and my brain fairly damaged during surgery. Not that I am complaining, I'd rather be alive without the power of speech than my bones returned to ground.

The newspaper article is
http://www.tworowtimes.com/news/physician-tells-ojibwe-family-anyone-wh…

If I misquoted, it was in kindness to add the phrase relating to cancer.

If you have a problem with the council's decision, than you should address the council. Just as if you have a problem with a quack in Arizona, expecting California to send in troops is inappropriate.

Also @PainRack, apparently no one in Florida or the American medical establishment can do a single thing to stop Brian Clements. If his conduct is so illegal, so illicit, so unforgiveable why have the EuroAmericans not stepped in to take care of one of their own?

Because EuroAmericans are not so different and sometimes trust superstition and various logical fallacies more than science. This keeps a steady stream of customers coming in the door.

I don't know how organized the practitioners of indigenous healing rituals and traditions are, but our EuroAmerican ones are as engaged in buying politicians and trying to get the legal system to allow them to do things they shouldn't as any other big business is. This is what keeps the doors open even when they are doing a lot of nothing or frank harm rather than curing.

There are those that fight the good fight to have scams removed from the market place and fight to get things regulated so you know that if you buy something it has everything on the label in it, in the amounts listed, with no substitutions of other herbs, contamination with various things no one wants to ingest or additions or other compounds including the science-based pharmaceuticals most people selling supplements will tell you to eschew.

Unfortunately, seems Big Supplement and the various other industries wrapped around them have a lot more money to buy government favors than the people who would like to see them controlled.

Do not mistake unregulated for safe and effective.

For an example of someone trying to bring the EuroAmerican Supplement industry to task see http://www.ag.ny.gov/press-release/ag-schneiderman-asks-major-retailers…

Expect the supplement manufacturers to gear up the manufacture of a grass-roots appearing campaign begging the legislature to refuse to make vitamin C a prescription drug and whatever all else is in the usual boilerplate used to fight any regulation of the supplement industry,

So sad

1) @ Renate #137
The vexing thing about this case is your question is a reasonable summary of the issue, but it's not an easy one to answer. Under Canadian law – which has a number of different elements in a mish-mash that's not easy to parse – First Nations people are kind of citizens of Canada, and kind of NOT citizens of Canada.

What 'we' are definitely not required to be is passive. Certainly, we may persuade or pressure the bands, take activist stances, work for this change or that.

But on the matter of whether, under the current law, the state must let First Nations parents ruin the lives of their children, the answer might be 'yes'. Emphasis on the "might".

This politically contested 'gray area' and the long history behind it, is why the actions of many of the parties are difficult to judge.

2) Re: #139, IMHO no one who knew these girls had leukemia and were being withdrawn from chemo by their parents deserves a pass: certainly not the parents, not Clement, not the hospital, not the bands, not the press, not CAS... nobody.

The mainstream press coverage in Canada has, for the most part dumped a disproportionate load of blame on the bands, been too easy on the parents – conflating their individual choices with the nations – and given TPTB at McMaster a pass.

Which is not to say the band's actions are not problematic in a substantive way. However, if Colonel Tom is too forgiving of the bands, then perhaps we should consider he's just one anonymous commenter on a science blog, providing a perspective we wouldn't get otherwise, one that might help us balance the scales closer to the truth of the situation.

3) @Painrack
You're making unsupported assumptions. What your exchange with Colonel Tom calls into my thought is that a large hospital like McMaster is a complex human organization, with all sorts of internal dynamics, contradictions, politics – different 'parts' going in different directions. It does not act or speak with a consistent single mind. It's anything but absurd to think that McMaster could house both staff with enlightened views on "integrating cultural practices and nursing" and staff who are "disrespectful towards traditional healing" – especially given that the former are nurses and the latter may be physicians in administrative roles.

Fwiw, I appreciate your comment for calling this to my attention. It's some comfort to think there are good people at McMaster who understood the sensitivities involved and sought the most pragmatic means to help Makayla and J.J. survive their devastating cancers. Alas, they did not win the day. This is not the moment to go into detail, but I have researched this fairly extensively, and there is very strong evidence that the McMaster administration and it's legal team utterly botched these cases.

With the thought of internal hospital politics in mind in light of your post, I now note how the news accounts show evidence of that between-the-lines. McMaster is keeping a very tight lid on this. The reporters get no interviews with staff, no direct quotes, almost no interaction even with hospital spokespersons. Only the official spokespersons speak, and for the most part only through prepared statements delivered by email. That could be just legal CYA, but it smells like someone has something to spin, if not hide altogether.

As a Native (from the USA, not Canada), I wanted to add my two cents to this topic. Well, it's really long, so it's more like fifty cents!

I think that many commenters here, including Orac, lack information about the cultural climate that allows this kind of tragedy to happen. I don't mean that as an insult. In general, very few non-Native Americans or Canadians have first hand experience with the nuances of native cultures, and the general way that we interact with mainstream society. That's not unexpected, as we're a relatively small group of people separated into even smaller tribes, each with their own ways. IMO there are a couple different factors at work here.

First, it's possible that the hospital in Makayla's case didn't know how to best handle interactions with her family. There are cultural differences in what's considered respectful, adequate, or appropriate. If the hospital had had someone available who was used to Ojibwe culture, they might have had better luck in educating her parents about the best path to take. That being said, in this case I don't think it would've helped. The fact that her family is evangelical Christian had WAY more to do with the negative outcome than the fact that they are Native Americans. They may have used Indian law to get the legal right to remove her from treatment, but the reason behind it seems to have been almost entirely religious. Let's not forget that there have been religious parents who have fled with their children rather than comply with legal medical requirements!

Second, is it possible that she really did have a worse response to chemotherapy than usual? I've seen some in the comments scoffing at the idea, but people of Native descent DO have different reactions to some kinds of medical treatment (e.g., metabolizing certain drugs at slower- or faster- than- expected rates). There is comparatively little information about how Natives respond to various medical treatments, as opposed to, say, Whites or Blacks. I'm speculating here, I'm not a doctor or scientist. Maybe the chemo hit her extra hard and her parents just weren't prepared for it.

This isn't to say that they should've taken her off it, obviously.

Third- commenters must realize that most Natives have an extreme distrust of governmental interference in issues that involve our children (and can anyone really be surprised by that)? The last Indian Boarding School closed in 1996- 1996! In not just living memory, but recent memory. As lately as 1978, 1/4 to 1/3 of all Native children were removed from their families and placed with non-Native adoptive parents. In the USA, the BIA even paid states to adopt these kids out to white families. Even now, in 2015, more than half of the states in the US do not comply properly with the Indian Child Welfare Act. (I'm speaking more of the US here because I don't know Canada's current situation as well, apologies.)

So, yeah, Native Americans will fight tooth and nail to retain all possible rights to their children, and to make decisions for their children. Some parents will inevitably misuse these rights, just as some parents in all other societies sometimes misuse the rights given them.

The solution isn't to take these rights away and endanger the lives and wellbeing of many, many more children. North American governments have shown (and continue to show) that they don't often have the best interests of Native children in mind. I think that asking (paraphrased) "is this freedom worth the life of a child?" to be a cruel way of looking at it when the ultimate concern is the lives of thousands more children.

Of course none of us want a child to die due to her parents' foolish beliefs. We also don't want our children stolen and our families ruined. Interfering with our sovereignty and rights to our own children has had disasterous, painful results- and still does. Thousands of native kids like Makayla died after being removed from their families, and it took over a hundred years to MOSTLY stop it in North America. It still goes on to a lesser degree, e.g. in South Dakota, where plenty of our kids are still being removed for subjective, culturally motivated reasons. Our need protect our children from the government isn't some libertarian fantasty or religious delusion or survivalist paranoia, it's a very real thing that we have direct, living experience with.

Honestly, challenging Indian child welfare laws wouldn't solve the problem anyway. It might've saved Makayla, though I don't know how much Canada allows for religious exemption. Far, far more parents withhold or withdraw medical care because of religious reasons, even if they have to run away to do it. There are plenty of non-Native religious people (in the US, at least) who use religious exemption to withhold medical care from their children, and who are even protected from prosecution if those children die.

The question boils down to, do the Treaties signed with the ability of self-rule and sovereignty still matter.

No, Col Tom. The question boils down to "Do parents have the right to condemn their child to a premature death by withholding/preventing them from receiving medical care, necessary for their continued survival?"

I agree that a lot of people seem to want to make this about the assertion of political soveriegnity, but they're wrong to sacrifice the life of a child to further their ideology.

@Sadmar, your comment about the attitude towards McMasters Hospital also flows into the doctrine of Observational Bias. I have little doubt that McMasters normally provides excellent service to their community, I have no doubt they save lives. However, this one act, this one antidotal act if you must , will be given more "weight" in peoples decisions for years to come. This, "problem of human nature" is one that consumes many of my twilight thoughts and dreams. I

In this, I was very pleased that one of McMasters' staff stepped forward and wrote some very respectful and calming words towards the "First Citizens". The reasons for mistrust run deep and the wounds have not yet turned to scars (!Hows that for woods mysticism!), even if not for the problems of the schools, the issues of tax, the war that is going to erupt over cigarette sales, the land grabs and insults. I do not want another Oka, at least most of my mind does not want another Oka.

As far as being too forgiving of the Kanien'kehá:ka, it was there responsibility to see for the care of the child under their control. They sided with the mother, and there was wide-spread support for the decision. The rez police, even shaved their heads to raise money for J.J.'s treatment. I doubt I can convey the amazement that caused me, for a Kanien'kehá:ka man to shave his head is something they would only normally do for the loss of a wife. To do this as an act of support, it was an act of valour that shames me the deeds that I have done. I don't expect you to understand, but that says it all. It does not matter, that it was done for the wrong reason, an act of honour none the less.

Sadmar, lastly. Your words on McMasters being a large organization and wide caution to transfer the act of one towards the acts of many. I was perfectly awake and aware during the replacement of my pacemaker/defibrillator. I chatted with the nice nurses as they shaved and scrubbed my chest, had a nice talk with the surgeon, turns out he and I had both been in Houston about the same time, we lived on the same street and odds are it might even have been the same apartment complex. I also mentioned that my mother had gotten her aortic aneurysm repaired at this very same hospital, and it might have been in this very same operating room. "Oh", said the doctor, "and how is she doing now?" "Oh", said I, "she got MRSA during the surgery, she spent the last 14 months of her life wasting away until it finally claimed her last year". Things got real quiet after that.

On the subject of the bands taking blame that rightly belongs on the shoulders of the individual parents...

Whatever Nahnda Garlow's statements have been, about what the Saults say MacMaster told them, I say be very skeptical. At best, this is a 'he said, she said' situation, and the more I look into this, the less I trust anything coming from Sonya and Ken Sault – like down to about zero.

One question about the "thrown in jail" allegation is 'when was it made?'. No one outside the family circle knew Clement was going to be involved until the Saults actually left for Florida. They had told McMaster and CAS they were going to pursue 'traditional medicine' but I suspect they were BSing all along. I suspect their angle was Jesus and Brian Clement the whole way:

In fact, their first public announcement that Makayla had leukemia and they had withdrawn her from chemo came at a revival meeting in Sarnia, ON held by West-Virginia-based faith-healing televangelist Ted Shuttlesworth, to whom the Saults had made available Makayla's being healed by Jesus in the hospital as an example of the curative power of The Lord. In other words, they appear to have pimped out their sick daughter to move up the Evangelical pecking order, and give Shuttlesworth a local hook for the Canadian audience. The National Post reported on an internet video of the revivial:

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...
The aboriginal question wasn’t raised as an issue until after the hospital called the children’s aid

It was only at that point the Saults claimed they would be treating Makayla with “Ongwehowe Onongwatri: yo:” a 'traditional medicine' with no documented tradition whatsoever, and not offered by any of the numerous First Nations clinics charted by the Canadian government to provide 'traditional healing' practices in an 'integrative' form along with conventional medicine.

The Saults are Ojibwe (by blood if not actual cultural practice) and I looked up the 'integrative' health programs of a couple Ojibwe clinics. They did not employ Native Healing as cures for any kind of disease, much less cancer. Rather, Ojibwe rituals were employed as spiritual healing, or what we might call psychological therapy – directed mainly at depression and substance abuse, with support mechanism for dealing with chronic physical disease available but not given that much emphasis.

So were the Saults ever really serious about Ongwehowe Onongwatri: yo:, what with their ultimate faith in Jesus and all? When the Brant CAS was processing McMaster's request for a protection order on Makayla, Sonya Sault told a reporter:

Are there going to be OPPs or CAS pulling into our house at any moment? And if that had to happen, we had to have a plan in place. Where does Makayla go? We hide her? We had to have that plan in action.

Now, why do I think Sonya's claim there was a 'Makayla Defense Force' ready to fight off any CAS apprehension attempt was just woofing, a smokescreen, and the "action plan" was always to have Makayla "go" somewhere off the reserve and "hide" where CAS had no jurisdiction. Say, maybe Florida?

On May 20th, 2014, Brant CAS director Andrew Koster met with the Saults and issued his decision that Makayla was not in need of protection, specifically citing the Saults use of 'Traditional Medicine' in explaining his rationale. That very evening, the Saults were at The Six Nations Polytechnic listening to Brian Clement give his pitch "All about Cancer and Conquering Disease with Living Foods." HHI doesn't openly promote faith healing, but this article on their website suggests their approach embraces the faithful well enough.

Not to actually advance a conspiracy theory, but if I was an investigative journalist trying to dig to the bottom of this story, I'd note that Ted Shuttlesworth, in addition to making regular appearances in Canada, also makes regular appearances in South Florida. I'd note that Clement also shuttles between Canada and South Florida. I'd wonder if the two men have ever met. I'd wonder if any members of Shuttlesworth's flock over the years have ever wound up at HHI to give the mighty healing power of Jesus a helping hand with some wheatgrass smoothies. And I'd wonder if it was Ted Shuttlesworth who first mentioned Brian Clement to Ken and Sonya Sault in Sarnia on May 7, 2014. Because Sonya Sault was talking about an action plan to have Makayla go somewhere to hide a week before the Saults met Brian Clement at the Six Nations Polytechnic. And once Koster had made his decision, they were completely free to stay on the reserve and treat Makayla with Ongwehowe Onongwatri: yo:, if that's what they had actually wanted to do.

Of course, a more generic term for 'faith-healing televangelist' is 'con-artist', and I can't help but wonder if when Ken Sault took the stage in Sarnia to pray with Ted Shuttlesworth he was a mark or part of the con. And I can't help but wonder if Ken and Sonya Sault pulled a con on the New Credit band, the Six Nations band, the Two Row Times, Andrew Koster and CAS with their claims to be following the secret and mystic 'tradition' of Ongwehowe Onongwatri: yo:, and a Canadian mainstream media primed to see everything in Brant in terms of tribal politics – and primed not to offend 'Christians' – rushed to the bait and bit the wrong apple.

"The aboriginal question wasn’t raised as an issue until after the hospital called the children’s aid, at which point Dawn Martin-Hill, director of McMaster University’s indigenous studies program who had reportedly tried to broker a deal between the family and the hospital, told the Hamilton Spectator that if Makayla was forced into chemotherapy, it would incite “the wrath” of First Nations across Canada."

Sadmar, while I do not doubt you understand much of what went on, and what is going on, I see you are a little too "white" on the idea of traditional religion. I doubt that most oldblood organization see that as an issue, after all, where the child and grandchildren of my first beloved one lives, they practice three different religions. If you follow the teaching of Handsome Lake, it does not mean you stop being a citizen of your nation, if you follow Christ, it does not mean you are no longer a citizen of your nation. Any more than being an atheist should mean a person is no longer an American citizen.

As far as the wrath thing, if this were the only incident that might be the case, but it is not. Anymore than the war of rebellion against the Crown was over a tax on tea.

Colonel Tom, you are still explicitly evading the question and changing the goalposts.

The quotes was not whether anyone using indigenous medicine should be thrown in jail. It's anyone who says it's effective.....
It's highly instructive because it highlights how easy miscommunication is.

Your old addled brain is still infinitely more receptive than a parent watching their daughter suffer from cancer. Given the misrepresent ation of medical facts, why should we trust that
1. M did suffer from irreversible cardiac and kidney damage,
1b . Said damage led to her death from stroke

2ndly, why are you so adamant about insisting that McMaster is hostile towards traditional medicine , when a much more plausible clause is that they're hostile towards fraudulent quackery as practised by Clements?

Since WHEN is traditional Indian medicine super expensive? The comments seems to be directed towards Clement quackery, why are you so adamanet in refusing to admit that the band has been misled and is deliberately using her native status to assert the parent desired choice of treatment? How on earth is wheatgrass juices and enemas part of traditional medicine?

It's annoying because in this particular example, Dr Orac had made it clear he doesn't care whether it's religious, cultural or ethnic reasons used to deny lifesaving treatment for a child, his position is that he's all on the child side .
Your attempts to derail the discussion via a thesis on decision making and racism ignores his position altogether.

Call him paternalistic but he freely denies the right for parents to choose quackery over science based medicine.

Painrack, a difference that makes no difference. If you suppose that all traditional beliefs are ineffectual than you've removed the possibility of a person to apply beliefs. The second follows upon the first.

Why is all of this about "traditional medicine", we don't see this as some arcane inquiry into the ability of a TaKa to cure cholera in the 1700's but rather the modern struggle for self-determination. My impression is you and others wish to fixate on a single mother's ability to make a poor decision, we see this as an assault upon the government that gave J.J.'s mother approval to pursue her course of action. Do you think that First Citizens run around the Rez like a bunch of kindergarten kids? No, there are governments. These governments have the authority to rule over their own citizens. You don't like the ruling of J's government, so you want to impose your great white wisdom.

Dr. Orac says he does not care about religious, culture, etc, as long as they decide to act like him, and follow the way that he knows is best. He does not care, as long as we do what he says. Oh my, that sounds so enlightened of him. Let him fix the killers in Florida.

You do realize what an offensive term you used with "paternalistic" when applying it to people of the Six Nations? I will assume the irony of that word escapes you, and I will take as little offense as possible.

@Sadmar. A good article came out recently

https://www.tworowtimes.com/opinions/columns/scone-dogs-seed-beads/maka…

https://www.tworowtimes.com/opinions/editorial/haudenosaune-people-awar…

Just for the record, I attempt to make it clear that I am neither a traditional oldblood nor a Euro. They say a man that tries to straddle two canoes is bound to drown. However, there are some cultural prejudices that I carry, one being the idea of confronting a person during the grief period just seems so dang wrong to me. It hurts, it strikes me as so wrong that I lose objectivity.

Then I read about the way the Euro culture treats their children.

http://www.tworowtimes.com/news/regional/justice-comes-for-marissa-whal…

When they were asked why the tortured child was buried on Six Nations land, there response was very telling. Should I be offended that such terrible people would also have misconceptions and prejudice against the people of the Longhouse, should I be offended at the racial hatred thrown at First Citizens in the comment sections of many of the Canadian papers, people assuming because the body was, "desposed" of on Six Nations land that they had something to do with this. To not ever allow the dead a decent burial, to not give them even the smallest token in their grave, what kind of people can do such a thing. I give my cats a token, and make sure the animals do not dig up their flesh, yet they'd not do the same for her child.

#ShutDownCanada

Feb 13, 2015

If you suppose that all traditional beliefs are ineffectual than you’ve removed the possibility of a person to apply beliefs.

Not at all. If the patient is a competent legal adult they can choose whatever treatment from SBM to alternative or traditional, effective or demonstrably ineffective, that they accept as compatible with their beliefs.

Is it jsut the first's nations soverignity context that informs your opinion here? Would you argue that a parent has the right to choose not to treat their minor child's Type I diabetes with standard of care insulin therapy, etc., but instead to rely on(wholly traditional) intercessory prayer and laying on of hands and oppose intercession by state child welfare agencies when made aware of such a situation?

70% Sovereignty. If this were a "non-citizen" oldblood I would feel completely differently.

That may be one of the differences that separates our, "reality" is that one of the Six Nation governments failed to protect one of its citizens. She had her family, she had her clan, and she had her government to protect her interests. I think they were wrong, but I acknowledge their rights for self-determination.

The media reports are so biased and just arrogantly eurocentric. I know that Ronald Reagan and George Bush were wrong, but I followed the chain of command none the less. Even when that required me discharging those in my command for the "crime" of being homosexuals. Yet that is another day and another court-martial.

20% is the deeply engrained, and correct, value that a mother and her extended circle of elders and peers, have both the best interest and the right on these matters. To this end, I respect the right of my wife to have the majority opinion of all matters to the child. Even if my wife and daughter are EuroAmericans.

I see this question being argued elsewhere here, are children the property of the parents or the property of the state. Well, absolute principles are absolutely wrong. The "state" here is her First Nation, and I agree that her "state" does have right to intercede for her behalf.

5% is Orac strikes me as exactly the same type of arrogant horse pie maker as the Obstetrician that almost killed this blessed child of ours, because he didn't believe we knew the conception date. I really know cause it was on my desk calender pad, also I wrote it down.

should I be offended at the racial hatred thrown at First Citizens in the comment sections of many of the Canadian papers, people assuming because the body was, “desposed” of on Six Nations land that they had something to do with this

"Paramedics respond to the Emerick Ave. home with police and are told by McKay and Hill that one of Hill's children was choking on cereal. They check the boy out and leave.

"Later that night, Hill and her sister Amanda Dipota, who are both native, drive with Roseanne Whalen to Six Nations territory in Ohsweken, near Brantford to bury Marissa. They borrow a shovel from Dipota's friend Brian Smith who shows them a secluded spot to bury a 'dog.'"

http://www.stcatharinesstandard.ca/2014/04/08/marissas-path-to-tragedy

I don't see her name on the roles.

I don’t see her name on the roles.

Well, Hill and her sister seem to have been playing the part.

A bunch do.

A bunch do.

Are you thus asserting that Hill (the killer and direct abuser) and her sister are "Euro"?

All I see here Colonel Tom, is you waving the racial flag to defend and evade questions and positions you were asked to clarify.

To wit, you claimed that she was poisoned by chemotherapy And this led to her death.Where is the evidence of this?

You claimed that McMaster was disdaining and arrogant and dismissive of traditional Medicine , with the subtext that they refused to intergrate such care with standard care, and refused to follow up care. Again, where is the proof of this? It goes against every norm of medical behavior. And we DO know that she still received supervision from medical authorities because of JJ, when the doctors there testified that M leukemia had relapsed .

We know that M didn't reveieve effective treatment and you have been evading this question forever. why is it that M had the right to receive ineffective,negligent medical care or even outright fraud ? Are the gurantees and Rights extended to every other Canadian child to be denied to M because she's First Nations? I suspect I know your answer, just give it to us without the faux outrage over sovereignty rights or how we are assuming that she was not loved and protected by her band or media bias.

Pain Rack, have you not read the articles and press releases put out by her council? You do realize that independent monitoring is being performed by for Eksa:ah not by McMasters but by Toronto Sick Kids Hospital. You dispute facts and then expect me to defend. That is almost always the sign of a person that has no desire to listen, when you argue that everything that is given is wrong. You claim that McMasters could do no wrong, and everything the oldbloods say is a lie.

As for the last question, ah, rights. This supposed right of every Canadian child to some standard of care. Just as every Canadian child has a right to a good school, clean water. Of the right to justice, or the right to practice their own faith, or even the right to have due process of law in a historical land dispute, say Oka? Such fine rights.

To wit, the rights of a Longhouse child and a New Credit child are under the oversight of their governments. Thus they have the same level of protection as in child in Canada. What you apparently wish, is that when you don't like the decision of a child's government than you can go running to another provincial government to overrule.

Now, had the federal Canadian government gotten involved, I'd likely be swayed.

https://www.tworowtimes.com/news/local/makayla-sault-alive-well/

Tonight (Monday, Feb 6) at 11 PM EST, the NBC affiliate in West Palm Beach, WPTV TV, is doing a story on Brian Clement and Hippocrates. The story should be on their website by tomorrow (WPTV.com).

I'm also aware of a story in the pipeline from a Canadian paper because the reporter interviewed me for it last week. Not sure when it will be published, but it should be fairly soon.

So ultimately colonel Tom, you have no evidence to assert that she died because chemotherapy damaged her organs and you refuse to hold her government accountable for her death, because the First Nations government chose to be frauded by a white American.

Duly noted.

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.
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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.
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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