I’ve rewritten Tuesday’s post on the death of First Nations child Makayla Sault. a martyr to her parents’ faith and the political correctness of the Canadian government (as well as the cowardice of some Canadian doctors); and it’s been published by The New Republic.
The rewritten piece is called “A little girl died because Canada chose cultural sensitivity over Western medicine,” and you might have a look to see what’s up there (according to Stephen Fry’s Dictum, I don’t read the comments).
But looking at it to make sure that my essay came out okay, I did see the first comment: kudos to Alex Musso for posting this familiar graphic:
Oh, and the editor at TNR found a heartbreaking picture of Makayla to head the piece. What an adorable child! She’s dead now, and didn’t have to be.
Religion is only one of the ways that people rationalize not loving their children. Don’t forget that.
I think there’s a name for that kind of comment.
LOL “Whataboutery.”
Gee, that’s almost like the “France has hate speech laws and they arrested a comedian for mocking the Jews,” argument, as though that’s any kind of excuse for a global invective over cartoons.
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What are some of those other ways ? Sports ? Politics ?
Religion is unique in the sense that it gets a special exemption not accorded to any other area of human endeavor and is given a totally unearned and unwarranted respect and immunity from criticism.
That’s a bingo. It’s not just that the parents’ actions produced a bad outcome, but that the government and medical profession are ceding authority – and in effect condoning quackery – to act in children’s rational best interests.
Tsbardella’s comment is not altogether wrong (though admonishing the rest of us in the last sentence is not a way to WFAIP), it is tangential to this case since we don’t have any reason to think that this girl’s parents loved her and THOUGHT they WERE doing the best for her.
What good is civilization if it doesn’t help protect us from one another’s bad judgement – not in all matters, of course, but at least in the life and death of a minor?
It’s not just that the parents’ actions produced a bad outcome, but that the government and medical profession are ceding authority – and in effect condoning quackery – to act in children’s rational best interests.
“The government and the medical profession” did not condone quackery here. The doctors involved in her care tried to force her to get treatment but, IMHO, used the wrong legal avenues to try accomplish this, expecting the Children’s Aid Society to apprehend the child. Even if the CAS had done so, that would not have authorized the hospital to administer treatment. And the government played no role here. As I said below, the laws exist that would have allowed this girl to receive treatment. Why the hospital did avail themselves of these laws, I do not know. I think the person who should take the most blame here (other than the quacks who promised to cure this child with carrot juice and positive thinking) is whoever was giving legal advice to the hospital.
Fair enough re the doctors who had been treating her, I was referring to Jerry’s article where he wrote “Perhaps the most odious part of this whole tragedy is that the Canadian Medical Association Journal (CMAJ) has endorsed Makayla’s alternative treatment …”
What is your point here?
Everything? Funny you should ask. Why yes, it does poison everything.
I hadn’t seen that graphic before now. Its excellent. I wish they’d put some horizontal separation between the pictures and made the arrows more prominent though; it took me several seconds to figure out how I was supposed to follow it.
Yeah, me too. I get it, but horribly designed.
There’s not much there yet (in terms of both number and substance of comments). A couple pomo defenses of faith. A couple replies to same.
You got one enthusiatic thumbs up from someone not making a philosophical/theological point…and that person was a nurse. So I’d call that a win.
As much as I feel it wrong for the young girl to die the way she did.
What sickens me just as much is people using this girl as a poster child without her or her parents consent to promote their own ideas. Fuck. No matter how good your idea is, doing this just sickens my soul.
Well I expect boku’s comment will get the banhammer so this might be a pointless engagement, but I’ll give it a go…
Boku, are you suggesting we fight injustice done to others without mentioning actual injustices done to others? That seems…absurd.
Using an event for your own purposes typically means using it an off-topic manner. Donohue using the Charlie Hebdo attacks to complain about piss christ is using it for his own purposes. Someone using the Charlie Hebdo attacsk to complain about religious intolerance is not doing anything wrong. Likewise, Jerry using Makayla’s death to complain about problems with how children with cancer are treated is not off topic, it’s precisely on topic, and there’s nothing wrong with it. It is, in fact, precisely what we should be doing: to reference my first point, it’s fighting for J.J.’s life by objecting to a nearly identical, prior injustice.
Sorry, I was probably unclear. What disturbs is the actual use of her picture, not the discussion.
And the girl probably doesn’t agree with the injustice point.
But that’s also why I disslike the use of the picture, because she wasn’t an adult, and whether she really “chose” not to go through with the treatement. There’s a conflinct in whether this girl is a victim of her parents ideas or if she’s a victim of her own ideas. And this conflict just makes me queezy to use children this way.
Her picture was printed all over the Canadian news, and I suspect that’s where the New Republic got it. I see no problems with using it, for it brings home the fact that this injustice involved a real person. I don’t care if the kid would disagree–she’s ELEVEN YEARS OLD and was brainwashed. Further, she probably believed wrongly that she would be cured.
Ow! I hate to see that word used here (I’ve only seen it used on one particular site).
I hope you don’t mean it’s wrong to use her picture the way TNR and PCC have done.
I note in today’s Toronto Star, that the Ontario Coroner is looking into the Makayla’s death to see if a public inquiry is warranted. Fingers crossed that there will be one, as its findings would be open to public scrutiny.
That seems silly to me. We know how she died. We know the decisions leading up to that death, who authorized what and when. Nobody is accusing the parents of foul play in the physical sense of doing something unknown or unstated to hasten her death.
AIUI the coroner’s job is to ascertain the facts of a death, but here all the facts are known and the question is simply the ethical one: was doing the actions we all know and agree were done the right thing to do?
I can’t agree with you on ‘silly’. Nothing will bring Makayla back of course,surely the point is to bring a hot spotlight on some of the participants in her demise. The Coroner can call on whoever she/he likes to give evidence and ask them some very pointed questions: the kind that the media are not asking. You can’t ‘take the 5th’ in Canada. The witnesses will have to answer. Some of these answers are likely to be so shameful that getting them out in public may help avert future iterations of this sad event.
So, basically, you want to use the coroner’s office in a corrupt way to make up for what you see as the wrong decision by the court.
I don’t agree with that. As you say, it won’t bring the girl back, so it just sounds like vengeance that sneaks under the letter of the law to me.
I also think any deterrence value is going to be minor (as well as being unethical for the reasons described above). These folks (the parents) already think of themselves as martyrs for the cause. So you’re going to hand them extra public screen time on which to play the martyr? And you think this will deter them?
I can’t understand where you get ‘corrupt’ from. My point is that a public process will be better than an in camera one.
You’re not using the coroner to do his job – i.e. ascertain the facts of a death you don’t currently know. You’re using the coroner’s legal power to rake someone over the coals because you want them to pay for what wasn’t a crime.
That’s corruption. Next time a cop stops you, doesn’t find what he was looking for, but then charges you with some B.S. technicality in order to justify the stop, don’t complain. He’s doing what you’re doing.
I don’t see the point of an inquest, either, unless there’s a possibility that the alternative treatment killed her. But given that she was going to die anyway, and it was a stroke (which is caused by leukemia), that seems pointless to check.
I’d like to see an ethical review completed or something (don’t know what) that would review this case in light of what happened to her. Why her parents aren’t held criminally responsible I can’t understand!
I don’t see the point of an inquest, either…
An inquest would be able to look into all pertinent aspects of the case, including whether the CAS or hospital should have taken further actions to get her back into treatment. So I think it would be useful.
Yes. Further, it may prevent something like this happening in the future.
Thanks Heather.
This whole sordid case, and many like it, is a ginormous example of where a government and now a medical board are wrapping themselves up in The Little People Argument.
I actually argued that the Canadian government infantilized Aboriginals by treating them like they can’t handle it.
I don’t care what you do. It’s wrong that this girl died. Call me racist all you want but I’d do anything to make sure she had the best chance of living and that’s where her parents and the state failed her.
The US Affordable Healthcare Act allows for a religious exemption to obtaining health insurance. Does anyone know if this only applies to adults or the family? In other words, regardless of the parent’s exemption, are children required to be insured? I can’t find an answer either way. That said, it does appear a parent can exempt the entire family. Seeking clarification.
What’s the tie-in? Refusal to get medical insurance is a very different issue than refusal to accept medical care. In the stanard US cases of Jehovah’s Witnesses refusing modern medicine, I don’t think the question “…but did you buy insurance?” has ever even come up.
The tie-in would be a parents refusal to participate in scientific medicine, using all loopholes to avoid participation in best practices. Choosing prayer or carrot enemas over scientifically established best practices. I suppose if they had insurance, a prosecutor could ask, “Well you don’t REALLY believe in the power of prayer or lasering if you use man-made insurance.” So opting out of insurance would be, could be, a test of faith.
Secondly, the “did you buy insurance?” and, “why not?” has yet to be tested. Too soon.
Anyhow, my question stands: Can a parent also exempt a child from coverage?
But that’s the problem. Your question is phrased in a way that makes me think your preferred answer is “yes, parents are legally required to get coverage for their kids.” But if that’s the case – if that’s the answer you prefer – then the fact of coverage could never be used as evidence that the parents aren’t sincere.
Okay, but without getting bogged down in what I want or what a parent’s sincerity is, I just want to know if the religious exemption for adults under the AHCA applies to children. Can a parent opt their spawn out?
After a brief google search…I don’t know. I found a bunch of material explaining how ACA interacts with Medicaid and CHIP (like this one), but they’re all written under the assumption that the reader is interesting in getting health insurance for their kid, not interested in avoiding it.
The nearest I could come was a section in another page that basically said there are a lot of exemptions from the ACA penalty, and one of them is if you say your available ACA family plans are “not affordable.” The exemption is there because when ACA was written they did a lot of analysis on the affordability of single plans but not so much on family plans. So tentatively yes you can get out of it???? It wouldn’t be getting out of it on religious grounds per se: more like you refuse to buy it and then the government comes back and says you don’t have to pay the standard fine.
My brief Googling turned up an I don’t know as well 🙂 Thanks for trying. Note eplommer (below) mentioned Makayla was covered under the Ontario Medical plan. So perhaps, eric, you’re right. What does it matter. Still would be interested in knowing if the AHCA allows children to be exempted by their parents.
As a Canadian, Makayla was covered by under the Ontario Medical Plan.
Okay, thanks for adding to this. Good to know.
aka OHIP
Whereas there are reports that the quack “treatment” that killed her cost $18000.
http://www.cbc.ca/news/aboriginal/doctor-treating-first-nations-girls-says-cancer-patients-can-heal-themselves-1.2832760
That would have come out of the family’s pocket, it woudln’t be covered by OHIP.
Oh dear. I did the unthinkable and read some of the comments below the article…. my blood boiled. There’s absolutely no logic to 3/4 of the comments. One claimed that no one mentioned anything about the girls dying in the middle east due to religion, one mentioned circumcision as being alright, why weren’t you railing against that…. One claimed your “beliefs” anecdotal, but religion’s beliefs weren’t. Argh!!
I HAD to comment.
Who am I kidding, my blood is still boiling.
Yeah, there was a lot of “but you allow and don’t object to x…” defenses. Made much worse because the x’s they used were things most people do in fact object to.
That garbage makes my blood boil too.
It’s another example of “whataboutery.”
It’s a perfectly reasonable thing to have a debate about whether circumcision is right, but it has not one thing to do with the issue at hand.
It’s just so damnably frustrating.
At the risk of making a gross oversimplification, if being a member of the rotary club is not a valid defense against neglect, and I going to assume that we agree that it i clearly not, then being the member of a church or practitioner of a faith is not a valid defense either.
Also, I think Mark Sturtevant made an excellent point that politics and medicine are wading hip deep into the quagmire of the little people argument.
Not to mention, this 11 year old child was keen to discontinue her treatments because she was brainwashed to the point of having a delusional episode and saw a vision of Jesus appear to her in her hospital room. So this 11 year old child should have been in the position to make life altering medical decisions? So if tomorrow I have a vision of Odin appear to me and tell me to discontinue my bipolar medications, I should heed his advise? Inject a different sky god and all of a sudden believers think the idea sounds insane. I remember being an 11 year old daughter of creationists. I remember “seeing” things. I remember wanting very badly to impress my parents with my belief. This child was making an uninformed decision. Plain and simple.
It’s unfortunate that the desire in little children to impress and earn praise from adults is so callously twisted in service of indoctrination. My mother and sister are nominally episcopal, so until I was about 13, so was I. It was very, very easy, compared to the stories of others, for me to abandon my religion because it was never pushed on me very forcefully. But even with that caveat, I still remember being in bible school on Sunday morning and trying desperately to impress the teacher and our minister with my ability to remember the names of the apostles and other such its of scripture. It made me want to read the bible more than my classmates, and in doing so, I read the story of Abraham and Isaac, and that was all she wrote. That one didn’t crack the door to doubt open, it blew it off its hinges.
I was 27 when I woke up. My husband is not a believer, so I had a little sanity in him. He never pushed me, he just let me discover on my own.
Religion was very much pushed on me. It bordered on child abuse, as I was told at one point, if you don’t agree with me, you’re wrong… pretty much sums up the beliefs of a creationist.
I LOVED your rotary club comment. It’s absolutely true!
Reblogged this on Atheist Catalyst and commented:
well said
I agree with most of your points here, Jerry, but will just say that I don’t think the Canadian government can be held to blame here. The legislation exists that would have allowed Makayla to receive the treatment she needed, but the hospital IMHO did not avail itself properly of the provisions of these laws. In the second case involving a girl who has not been publicly name, the hospital did go to court, but against the Children’s Aid Society. And when the judge came down with what, IMHO, was an absurdly wrong decision, the hospital decided not to appeal. There is not much the Canadian gov’t can do here. It can’t intervene in the workings of the legal system.
Not sure. Remember that the judge in the “J. J.” case ruled that that girl had a right to have alternative therapy instead of regular cancer treatment. I recognize that the government can’t intervene (but isn’t there a children’s aid arm of the government, like we have in the US?), but there needs to be laws that absolute eliminate these religious exemptions. If there were such laws, I don’t see how the judge could have ruled that J. J. was free from chemotherapy. And had she been mandated to have real medical care, they could have taken Makayla’s parents to court for the same thing.
Yes and I think Children’s Aid refused to act (could be wrong). I’ve heard (but not confirmed) that Six Nations kicked Children’s Aid right off the reserve now so perhaps they were worried…regardless, they played a part in her death.
I think the CAS was legally correct in not apprehending the girl. If the family has made decision not to continue treatment, that is usually a decision they have the right to make. If it a decision that seems wildly out of the best interests of the chld (as was the case here), then it is the responsibility of the medical team treating her to take the necessary measures to try get someone else appointed as the person making treatment decisions. That is not the CAS’ call to make.
Remember that the judge in the “J. J.” case ruled that that girl had a right to have alternative therapy instead of regular cancer treatment. I recognize that the government can’t intervene (but isn’t there a children’s aid arm of the government, like we have in the US?), but there needs to be laws that absolute eliminate these religious exemptions.
Just so you know where I’m coming from, I’m a psychiatrist who lives in the province where both these cases occurred. So I have some knowledge of the relevant legislation.
There is no specific religious exemption for refusing medical treatment. The default position is that a person has the right to make decisions regarding their own medical treatment, for whatever reason, no matter how foolish. If a mentally competent adult is making a decision regarding his own treatment, then that’s the end of it. He gets the final say.
OTOH, if a parent is making a decision regarding the treatment of a child that is felt to be against the best interests of the child, then the medical team can take legal action to have someone else appointed the person making treatment decisions. When these cases have gone to court, the ruling has always been in favour of giving the child life saving treatment over the parents’ and/or the child’s objections:
http://www.cbc.ca/news/canada/girl-s-forced-blood-transfusion-didn-t-violate-rights-top-court-1.858660
For some reason, the hospital never took these steps in either of these cases. Even more flabbergasting is their decision not to appeal the ruling in JJ’s case. That decision goes against the precedent set by the Supreme Court described above, on the flimsy premise of protecting aboriginal rights. Lower court decisions are struck down all the time, as I bet this one would have been if it went to appeal. But it never did.
Ouch! That link – the girl lost her case but the Government (i.e. the taxpayer) got saddled with her huge legal costs.
My 100% cynical view is that there are thousands of people wanting medical treatment who can’t afford it, why waste time and money (and legal funds) on people who _don’t_ want treatment?
It’s very expensive to go to court for the hospital. Most likely they learned how badly things go the other way and therefore decided to take the unnamed girl’s parents to the court.
In my opinion the government failed her because that judge ruled the way he did.
It’s very expensive to go to court for the hospital.
That makes no sense. A hospital has a legal budget. I’m a psychiatrist working at a mental health centre, and we have taken cases like this all the way to the Supreme Court
Most likely they learned how badly things go the other way and therefore decided to take the unnamed girl’s parents to the court.
It was not the 2nd girl’s (JJ) parents who were taken to court. It was the CAS. who was taken to court by the hospital because they refused to apprehend the girl. After the hospital failed to take the steps necessary to have someone else make treatment decisions on the girl’s behalf. That’s just weird, and suggests that your earlier claim that the hospital was deterred by the legal costs is wrong.
In my opinion the government failed her because that judge ruled the way he did.
As judge is not part of the government. Again, IMHO the hospital bears the brunt of the blame here for not appealing this atrocious decision, which went against all existing precedent.
My point was the hospital in the second girl’s case had to go to court to get CAS (the government) to do something. Perhaps the Judge isn’t the government necessarily but judges play a role in the whole system. He failed her when he ruled this way.
And it saying it is expensive to go to court does make sense. There may be a budget but if you’re constantly going to court, that budget gets blown and the hospital is using public money.
I should add that the way some of the doctors talked at the hospital was ridiculous. It was all cultural stuff.
Here is a good White Coat Black Art episode on CBC that discussed the case.
My blood is boiling too but for another reason. Most people did not read the article carefully enough.
Did anybody read this:
“She didn’t die of cancer,” said Chief Bryan LaForme, who is acting as a spokesman for the family. “Her immune system had been badly affected by the radiation that she had, so she succumbed from a stroke.”
http://www.theglobeandmail.com/life/health-and-fitness/health/health-care-must-do-better-at-respecting-aboriginal-patients-journal-urges/article22517597/
Obviously nobody read that
We read it. It’s wrong. Radiation reduces white blood cell count. What she had was a stroke from too many white blood cells.
The attempt to blame the treatments are predictable, so poor they could only be designed for public consumption, and would be laughable in other less grim circumstances.
She relapsed. Her type of cancer causes an explosion of white blood cells – that is what caused the stroke, not organs allegedly damaged by previous treatment. The statement by the family is mistaken or misinformed. Or perhaps that’s the lie the quack clinic told them as an explanation as to why they couldn’t save their daughter.
Your last statement seems quite likely to me.
Showing he doesn’t even understand her treatment. Radiation lowers your immune system but it’s nothing to Chemo. Chemo wipes it out.
And just how does this Chief’s opinion count for shit? Is he an oncologist?
I’m certainly no MD, but I fail to understand how a weakened immune system plays much of a role in vascular event like a stroke. Is stroke even a symptom associated with any infectious disease?
I’m glad you posted that.
I just realized that the clinic in question is right in my backyard.
So guess whose freethinker group is gonna start a campaign to make the WPB city council aware that some of us don’t accept charlatans in our midst that are purveying for profit BS that’s causing kids to die from treatable forms of cancer.
So thanks. I had boiling blood, now I have a bunch of quacks at whom I can spit venom, so thanks for that.
Would it be OK to try and get this posted as a letter to the editor in the Brantford expositor. Brantford, Ontario borders the Six Nations Reserve. It would be good to have them read an American perspective on this tragic death particularly the statement on political correctness.
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This Canadian is not very pleased that this has been allowed to happen. I don’t think too many are on board with this.
I have been thinking about the relative importance in this case that religion and cultural sensitivity played in the parents’ decision to take their child to the Florida quacks. Looking at the Canadian government and the Canadian medical organization that JAC cited in his earlier post, religion and cultural sensitivity played was everything, of course. No other excuse for this travesty would have ever been respected by the legal system.
But since the parents had their child undergo chemotherapy first and then switched to the quacks, it seems possible that the parents were conned – and like many victims of cons, deserve some blame for falling for it by virtue of their willful ignorance (i.e., religion). The worst parties in this story are the quacks who exploited the parents’ discomfort with the suffering of their child undergoing chemotherapy to convince them to go with quackery. The decision to invoke religion and native traditions as a justification for the switch probably came from the parents’ attorneys. How the Canadian authorities ever allowed the religious or cultural arguments of the parents’ attorneys to prevail in light of the fact that they had already used legitimate medical procedures is reprehensible – and the parents’ attorneys probably congratualted themselves on their legal strategy. How disgusting.
How the Canadian authorities ever allowed the religious or cultural arguments of the parents’ attorneys to prevail in light of the fact that they had already used legitimate medical procedures is reprehensible – and the parents’ attorneys probably congratualted themselves on their legal strategy. How disgusting.
I don’t know if any lawyers were involved in Makayla Sault’s case. The only attempt the hospital made to have her receive treatment was to make a report to the CAS. But the CAS made the legally correct decision that they had no mandate to apprehend a child when the question was one of consent for a medical decision. The patient’s legal guardian made a decision regarding medical treatment, and if the hospital disagreed with that decision it could have applied to the Consent and Capacity Review Board.
In such cases, the courts have invariably sided with preserving the child’s life over respecting the parents’ religious beliefs (There have been at least two Supreme Court decisions that required the child of Jehovah’s Witnesses to receive blood transfusions, one involving a teenager who was herself refusing the treatment). In Makayla Sault’s case, the courts never even got a chance to make a decision. IMHO, that was because the hospital mishandled the legal aspects of the case.
Had she not been a member of an Aboriginal tribe, would she be alive today?
Thanks for giving this case attention, Jerry. Because I live near the reserve where this girl was from and work near the hospital where she received treatment it hits close to home and really enrages me. I’m glad you writing about it will give it the attention it needs!
A couple days ago, I was sitting in a cancer clinic and this story came over the radio. I wonder what others were thinking as everyone there is getting treated for cancer.
In case anyone is interested, one of the authors of the paper mentioned by Jerry in his piece has responded to the criticism in the comments.
A few of the people commenting over there are okay with the state not intervening because of they think the parents’ rights – and even some of those okay with the state intervening think the parents’ rights are nonethelss a consideration.
I’m sorry – rights? Parents have no rights whatever in this area. Parents are people charged with the job of looking after a creature currently unable to look after itself; it’s a job that certainly comes with perks, certtainly, otherwise no one would do it – but no special rights.
The reason parents are allowed to make decisions with regards to their own children’s welfare is that someone must have this power and it’s a good rule of thumb to give it to a biologically related bystander why can be expected to know the child and have its best interests at heart. And it’s a wrenching decision of last resort to totally remove a child from its parents. But taking some of the decision-making power away from parents in instances of parental negligence should be standard and unproblematic – like snatching the wheel away from a driver who is falling asleep.
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