The long story of the Canadian courts allowing First Nations children to die out of respect for their useless “traditional healing practices” has had a happy resolution—at least in one case. When 11-year-old Makayla Sault was dying of leukemia after abandoning chemotherapy for “traditional medicine” (including a bout of “nontraditional” treatment at the quackish Hippocrates Institute in Florida), another 11-year old, “J. J.”, also with acute lymphoblastic leukemia, was also allowed by a Canadian judge to abandon chemotherapy for “traditional” healing. Makayla didn’t make it, and J. J.’s leukemia wasn’t cured by native healing or by the Hippocrates Institute (surprise!!).
When J. J.’s leukemia recurred, the parents apparently had a change of heart, and so did the judge who overruled chemo in the first place. You can read the whole story in posts by two readers: Diana MacPherson’s discussion at Canadian Atheist, and reader Sean’s piece at My Secret Atheist Blog.
What happened, apparently, is that after J. J.’s leukemia recurred, the plaintiff in the original suit (McMaster Children’s Hospital), J. J.’s family, and the judge worked out a deal to avoid an appeal, which would have taken a while and allowed the cancer to advance further. J. J. is at last undergoing chemo, and one hopes that her original 90% chance of cure has not diminished.
But there’s still a lot of lip-service to “traditional medicine” being bandied about by all parties, and some hypocrisy, too. As MSAB points out (the quote in italics is from the CBC):
All of this seems related to a clarification ruling on Friday by Judge Gethin Edward which — after J.J.’s cancer returned — makes the child’s well being paramount to any case. I’m having some trouble parsing the words, but I think it means that the child’s health should be ‘balanced’ with the desire to use traditional medicine vs or alongside science-based medicine(?), but it’s all rather foggy to me.It is a “significant qualification” of Ontario court Judge Gethin Edward’s November 2014 ruling, according to one legal expert, which means the child’s well-being has to be balanced against rights to traditional medicine.Nick Bala, a law professor at Queen’s University, says the clarification “walks back” the original ruling that put First Nations constitutional rights as the major factor to be considered in the care of the child.
You would think that the child’s well being would have always been considered paramount. This is precisely what I’ve been asking for all this time. The only thing which could obscure this obvious goal would be decades of institutional abuse and belief in unproven traditional medicine over evidence-based treatments — along with politics. It seems very much like the judge believed in this medicine as well and is now backpedalling.
I found this ruling outrageous because it clearly put a “constitutionally protected right” above the health of a child and this was not only ethically questionable but also inconsistent with Canada’s top court, which in 2009 dismissed a Jehovah Witness girl’s case claiming her rights were violated when she was forced to receive a life-saving blood transfusion. Indeed, the
Supreme Court ruled that such medical interventions are constitutionally sound, striking a balance between the choice of the child and the state’s protection of the child.
Diana also notes the precise “healing regimen” J. J. was getting for her leukemia: “a positive attitude, a raw diet and health shakes, something Wayne K. Spear, himself an aboriginal, rightly called a mixture of Christianity, alternative medicines, New Age dabbling, and traditional herbs.” And that’s just nuts.
What bothers me most about this is the self-congratulatory attitude of everyone, as if they’d forged a consensus in which two forms of healing could be applied side by side (unless those damn herbs impede the chemo!), and cultural sensitivity appeased. But time has passed, and it’s possible that J. J.’s chances of surviving would be higher had the courts not “respected” that form of healing in the first place.
Yes, if native practices don’t conflict with or impede scientific treatment, then of course they can be used. But Canada should decide, once and for all, that those practices should never be allowed to replace proper medical treatment for children. Faith healing may be religious, secular, or “ethnic,” but unless it’s been tested scientifically, it’s quackery.
Makayla had to die for JJ’s mother to come to her senses. And Makayla didn’t have to die if this decision was made earlier. Perhaps involving CAS riled things up and other avenues could have been explored (a legal expert suggested a different legal route) but if the child’s welfare was kept firmly in sight instead of allowing it to be obscured with legalities like constitutional rights, Makayla may still be alive today.
Science, it works so use it. So many people don’t have the luck to live where they have access to state of the art medical care. It is a tragedy when someone forgoes it, it is criminal when someone makes that decision on their child’s behalf and it is a shame when it is done for political reasons.
Stupid F in my name. Get the F out F.
Good points all. I hope this case is considered a clear precedent for future ones.
Agreed. I think it’s also a bit tied up in the idea that children are the property of their parents. They have the right to imbue them with their own values and make choices for them even when it’s clear those interests are not in the best interests of the child. It’s such a fundamental relationship though I don’t know how you get around it. At least this case may now have a good ending.
I believe the ideal of the Israeli Kibbutz had children raised outside the parent’s direct control. I see this potentially as a model for keeping foolish parents from indoctrinating or killing their helpless offspring. Granted, it seems a bit extreme.
When all is said and done, I’m glad she’s in chemo.
It’s absolutely insane that it took all this to make the health of a child above politics.
IMO, child rights convert into parental obligations for doing something rational to care for a child.
Speaking from the non-academic world I congratulate you, Mr. Professor, on your efforts to bring scientific understanding and rational thought to the public. The best way to rid our society of these detrimental inanities is to relentlessly call attention to them as you do so often. Thank You.
Jerry, your concluding paragraph has everything of substance I’d have to write about on the topic.
b&
A clear example of the suffering that private irrationalities can cause once they begin to leak into other people’s lives. I’ll try and bring this up every time I hear someone say pseudoscientific beliefs and superstitions are harmless.
Oh yes, these beliefs kill. I wonder how many people died following the beliefs of The Wellness Warrior (tragically this young woman and her mom both died of cancer following their “healthy” alternatives) or this woman who admitted her brain cancer, and her recovery from it, was all made up?
“Wellness Warior”. It’s amazing how often you see an alliterative name substitute for critical thought.
Thank you Diana. I’d not heard about this Belle woman before. What a touchingly sympathetic article, and how convenient that her mental illness just happened to open up a potentially lucrative revenue stream. I know that every mentally ill person I’ve met tends to use their psychological problems to start up a company that bilks people with cancer.
I can’t really imagine a lying pharma exec getting quite such a reachingly sympathetic write-up. People really seem to like their anti-science rebel heroes, even when they turn out to have made absolutely everything up in order to mug people like my mum.
Yes I’m much harsher. She can get treatment for her clear mean two issues but I think she should do jail time or community service for her fraud that probably killed many.
“a positive attitude, a raw diet and health shakes, something Wayne K. Spear, himself an aboriginal, rightly called a mixture of Christianity, alternative medicines, New Age dabbling, and traditional herbs.”
clearly not traditional native medicine. Not that I have a grasp of the traditional medicine practices of these particular groups. I do recall some general “traditional” medical practices, which did require applications of various plant products in different ways (teas, poultices, or just rubbing it on the affected area) prayer or course, some “healing” smoke, usually a mixture of dried plants depending on culture, though tobacco was commonly in the mix (not good if you’re trying to get healed from emphysema) broths, like in most cultures, but of specific meats only, some foods forbidden for a variety of reasons such as if they resembled the disease or illness in any way, and some cultures used sweating or bathing. The some Cherokee at least by the 1800’s had a prohibition about people visiting the ill, at least in person. they could sit outside the window but not enter the same room, which at least may have helped prevent some transmission. otherwise, they (if I can say that in a pan-native sense) had just as many goofy, irrational, superstitiously-based medical practices.
however, there was a time when native cultures adopted what worked whenever they found it, and gave up what didn’t. this is why native North American cultures only use traditional dwellings for weekend, religious, or other special ceremonial times but live in western-style houses with central heat, water, and dish network when possible. I fear these cases are examples of reactions to the continuing negative feelings towards colonialism (genocide, ethnocide, land theft, museums stealing cultural patrimony, kidnapping children, government schools, laws against native language) and trying to resist it, albeit irrationally in this case. it’s really sad. I feel sorry for the kids, and both anger and sorrow for the parents, who if they really want to be more like their ancestors, ought to be more pragmatic rather than reactionary.
When I read about this online, I saw that the media had buried the lede. The most important thing is that JJ is back on chemotherapy. Sure her chance of survival is less, but it’s still better than zero.
A couple of clarifications. The case got back into court the way it did because the parties forgot to notify the Ontario Government about the case before the original hearing and ruling. Ontario law requires that, if you are going to raise a constitutional question, the appropriate level of government be notified, so that it can defend the law. This was a big oops, that would entitle the Ontario Government not to appeal the order, so much as apply to have it set aside. That’s why it went back to the judge who made the original decision.
In his original decision, IIRC, Justice Edward did not refer to the earlier Supreme Court of Canada’s decision on the Jehovah’s Witness child. It is impossible to tell, without looking at the original court record whether the parties failed to bring that precedent to his attention, or he just ignored it. Whatever happened, the legal system does not look good.
Unfortunately, if I dust off my constitutional law text, I think it is possible to distinguish the circumstances of a Jehovah’s Witness child from that of an aboriginal child, because the Canadian Constitution does give, in s. 35 [?] First Nations individuals rights that other Canadians do not have.
Regardless of which constitutional rights we are looking at, protecting the child’s health and welfare has more weight.
Exactly. I think on a proper analysis, the correct result is that the court should require chemotherapy. The best interest of the child can only mean the best chance of survival.
“… one hopes that her original 90% chance of cure has not diminished.”
I’ve been reading Orac over at his Respectful Insolence blog for a while now. I seem to remember in one of his articles from the past couple of years about how if one stops chemo early and the cancer recurs, the odds of long term survival are diminished. 🙁
I’m just wildly guessing now, but this strikes me as similar to bacterial resistance to antibiotics. Incomplete chemo means that you’ve only killed the cancer most vulnerable to the treatment; leaving behind the cancer that’s more resistant.
I’m pretty sure Orac actually referred to, when blogging about this case or Makayla Sault’s, how much lower the odds have become. Still, a lot better than zero.
The good thing is the cancer returned quickly because it got her back on the chemo faster than if the cancer hadn’t returned for a year or two. I think JJ went off her treatment in September which means it had been about 6 months since her last treatment. From what I’ve read on Orac’s site, this kind of leukemia requires extensive chemotherapy with 4 weeks intensive chemo then 6 months more of chemo (I suspect with resting periods all built in) then 2 years of maintenance chemo. I hope JJ sticks with it because it isn’t going to be much fun. I saw a lot of sick kids when I got radiation and it can be quite sad but they all had great support from their families.
It’s the kids who really make you feel bad. You at least went into it knowing everything you could possibly know — probably more than some of the techs!
But the kids…what choice have they other than to simply trust the adults that all this really nasty shit they’re going through is worth it? And how to explain that they may well wind up putting up with all the nasty shit and even that not being enough?
I hope some of the kids at least took heart from seeing you as a grown-up going through what they were.
b&
There were a lot of adults that didn’t know what the heck they were going through. I felt bad because they just didn’t get why a loved one could die suddenly because they hadn’t grasped the seriousness of their situation.
I think the worst thing I saw was a woman sitting on the floor at the cancer centre entrance full on crying. I felt bad. I wanted to help her but I didn’t know what to do (sometimes if you’re full on crying you just want to be left alone to cry) and I was running late for radiation and they are quick in there so you don’t want to screw up the works! It’s really awful sometimes.
I can only imagine how rough it’s gotta be to work in a cancer ward. People dying all around you with no way to save them, and yet you do manage to save enough to make it worth keeping at it…the emotional rollercoaster has got to be insane….
b&
The techs and doctors were pretty good and so were most of the nurses. I found the admin staff to be completely oblivious to the fact that they were dealing with very sick people though.
Sad. To be charitable, I suppose it could be some sort of a coping mechanism on their part…but that just means that they’re very, very much in the worng job and need to go work somewhere else ASAP.
b&
I think it is really just that they have forgotten that they are doing everything for the patient. In other words, they aren’t really patient centric but “me” centric.
My dad died of Non-Hodgkins lymphoma roughly a decade ago. He died because the transplanted immune system caused organ failure and the immuno-supressant drugs didn’t work like they were supposed to. Watching someone die like that is rough. My big sister, who is an ER nurse, had to leave the room and my little brother who was 21 at the time curled up on our moms lap to cry.
I held out the best I could, holding my fathers hand and trying to comfort him as he died. He was frightened and confused, and to be honest you really do turn yellow when your liver dies.
My general response to cancer is to swear. I don’t know if Professor Ceiling Cat allows swearing in the comments, but my response to cancer is one word: Fuck.
Cancer is a shitty way to go and any story about people indulging in nonsense as opposed to seeking science based medicine drives me a little bit nuts. I’m unsure there is anyone deserving of hatred, but if they do exist they are the people promising unproven cures. I watched my father suffer horribly with the best medical science available, and I think what kind of person would provide false hope with quackery.
I’m not inclined towards violence but a quack that would replace medical science with false hope; I would want to hit them in the face.
I think that was as good a summary and analysis as any of us have put forth.
b&
Another Tom; that was almost unbearably moving. Thank you for telling it like it is.
Perfectly true; incomplete treatment leaves resistant cells that might once have been a tiny percentage of the leukemia but may now comprise a majority of the tumour. This will affect her odds of survival, but she still has a good chance.
Love her or hate her, Rosie Dimanno of The Toronto Star gives a very good analysis similar to Jerry’s. Money quote from Rosie’s article:
“Indeed, when the Brant (childrens’ aid society – – (my addition)) agency’s director, Andrew Koster, was asked afterwards outside court about whether a conciliatory approach towards melding traditional and “Western” medicine might not have save Makayla (the other 11 year old who was allowed to die by a Judge’s ruling and subsequent failure to act by the province and the parent — (my addition)), the society’s lawyer stepped in to avoid a response. “I don’t think that’s a fair question. Of course, everybody is sad when a child dies. But this isn’t the place to exhume that case.” (Great choice of words that there sure is “exhume” — (my addition))
This is precisely the place to exhume that case — which is now being examined by a committee that reports to the Chief Coroner of Ontario.
The lawyer continued: “Let’s just leave things as, this is resolved for J.J.’s benefit and we’ll proceed without the need for further litigation, which isn’t in anybody’s best interest, and be glad for a collegial result.”
I say….. “…. further litigation ….isn’t in anybody’s best interest”. …? Really? Whose interests exactly aren’t served by keeping this out of litigation —??? hmmmmm, Uh Huh. Who’s interests ARE served by keeping this out of litigation? I wonder – back slap, back slap, old chap!!
thestar.com/news/canada/2015/04/24/jj-is-thriving-no-thanks-to-courts-belated-clarification-dimanno.html
Sanity prevails in the end. Disgusting that it had to take so long.
My friend Raven used to volunteer as a “cultural translator” for folks who needed to put the context of (scientific) medicine into terms that were more traditional. Shame that more of that can’t be done, too. I suspect these days though that would be more for parents and grandparents (and those of the relevant ages) than the kids, though …
There are a lot of supports that way at McMaster. McMaster has a program that encourages aboriginals to go into medicine and there are many aboriginal doctors who do this type of support.