I’ve posted several times on the Makayla Sault affair, in which an 11-year-old Canadian First Nations child, stricken with leukemia, was allowed by the government and child protective services to stop her chemotherapy treatment (which in all likelihood would have cured her) in favor of “traditional” medicine—said medicine including a visit to the quackish Hippocrates Health Institute in Florida for a useless dietary regime and “cold laser” treatments.
Makayla, of course, died. And now another 11-year-old Canadian First Nations girl with leukemia, identified only as “J. J.”, has also been allowed to forego treatment, and was also taken for woo-treatment to the Hippocrates Institute. (The head doctor there, Brian Clement, has since been ordered to stop practicing medicine without a license.)
I regard this—and all government exemptions allowing parents to refuse proper medical care for their children on grounds of religion, faith, or “ethnic tradition”—as unconscionable, a privileging of religion over science, and faith over reason. But it’s far more reprehensible than other such clashes, like that between evolution and creationism, because medical-care exemptions, like vaccination exemptions, actually kill children.
There is no reason for any such “philosophical exemptions” in a modern world; the only justifiable ones are when the treatment would be more likely to hurt the child than the faith-based alternative of prayer or cold-laser treatment—a very unlikely situation!—or when conventional medical care would injure the child on genuine medical grounds, as when vaccination could hurt an immunocompromised child. It’s time to end, for once and for all, all religious, faith-based, culture-based, and “philosophical” exemptions from scientific medical care. There is no good justification for such exemptions. They are murderous and, in the case of vaccination, harmful to others who don’t opt out.
I received a link to a Globe and Mail piece about Makayla and her family from reader “lancelotgobbo,” a physician who has developed leukemia and has been public about it on this site. Lancelot sent the link to the article, “Aboriginal girl begged parents to stop chemo treatments, mother says,” with this note:
I’m afraid the family are beginning to cover up their poor decision.
And that’s what the article suggests. Makaya’s mother, Sonya Sault, is now giving public lectures, which I interpret as her trying to justify her decision to stop her child’s chemotherapy in the face of severe public criticism. The article notes:
Doctors gave [Makayla] at most a 72-per-cent chance of survival even with an aggressive chemotherapy treatment, her mother, Sonya Sault, told an audience at McMaster University.
“She became so weak so she couldn’t even stand or sit at times,” she said.
Mr. Sault said the treatment took a heavy physical and emotional toll on the little girl.
“Are you sure I’m getting better? Are you sure we’re doing the right thing? I feel I am getting worse,” she recalled her daughter asking.
Makayla said things like “the chemo is going to kill me,” the mother said, adding that finally she begged the parents to put an end to it.
“Mom, if you have the power to get me out of here, then you have to get me out of here.”
. . . “We know that chemotherapy is not easy for anyone, but for Makayla it was devastating,” she said.
Makayla, she said, understood the “harsh reality of stopping chemotherapy,” but she wanted to try traditional medicine.
“I don’t care if I’m going to die, I don’t want to die weak and sick in a hospital,” Ms. Sault remembered her daughter telling her.
Only a 72% chance? Well, with no treatment Makayla’s chance of surviving acute lymphoblastic leukemia is 0%. What decent parent would accede to their daughter’s request to stop chemo (even if the child did make the request), if the chance of surviving was as high as 72%?
The Saults’ public breast-beating serves no purpose except to exculpate the mother and defuse public criticism. Such talks are in fact harmful, for they may persuade other parents to do the same stupid thing to their kids. Ms. Sault’s talk is unseemly and offensive, although, of course, she has the right to say what she wants. The Globe and Mail piece continues:
Ms. Sault spoke at an event organized by McMaster University’s Indigenous Studies Program in an effort to understand the problems between First Nation peoples and the health-care system.
“Our hearts are broken by the passing of our daughter,” an emotional Ms. Sault said before composing herself – her husband by her side.
Good going, McMaster University! Did you, by the way, counter Ms. Sault’s talk with one by a doctor, laying out the alternatives, their probabilities, and the uselessness of “alternative medicine” for curing leukemia? After all, it was your hospital that tried to insist on continuing the child’s chemotherapy.
I have little sympathy for the Saults’ grief when they had a substantial chance of avoiding their daughter’s death by allowing her chemotherapy to proceed. What they did in fact guaranteed that their daughter would die.
And this strikes me as simply disingenuous:
The mother also said she wanted to clarify “misinformation in the media” about her daughter’s treatment.
The medical staff at McMaster Children’s Hospital in Hamilton threatened to get the authorities to apprehend the girl and her two brothers and force chemotherapy treatment upon her, Ms. Sault said.
Makayla started to feel better once the chemotherapy stopped, Ms. Sault said, but she didn’t stop treatment altogether. She continued to receive treatment from her family physician, Dr. Jason Zacks, as well as an oncologist at McMaster hospital. She also received traditional medicine from a healer near her home on the Mississaugas of the New Credit First Nation.
Then the family went to the Hippocrates Health Institute in Florida to get away from the brewing media storm over her case, Ms. Sault said.
Florida’s Department of Health recently issued a cease-and-desist letter to the man who runs the spa, Brian Clement, for practising medicine without a licence.
Ms. Sault said Makayla didn’t go to the Florida spa for cancer treatment, only to try out a new diet that might boost her immune system. Plus, Ms. Sault said, Makayla got to relax and be a kid again, soaking up the sun and swimming in the ocean.
If the diet didn’t constitute “cancer treatment” (and she didn’t mention the cold laser treatment and vitamin injections), what is? The bit about “getting away from the brewing media storm” really incensed the reader who sent me the link, and I agree. It was a way to avoid guilt, and to pretend that they really were trying to cure their daughter. Granted, perhaps Ms. Sault didn’t understand or believe the doctors who gave her the odds that her daughter would die, but how savvy do you have to be to understand the difference between 72% survival and 0% survival? In the face of such obtuseness, the government should have stepped in and tried to save the child’s life.
You might have gathered from my comments as Lancelot Gobbo (look up your Shakespeare for the character with an angel on one shoulder and a demon on the other!) that I am not only a physician, but one with leukemia. It really irritates me to see people make such cowardly choices for their children, especially when primary chemotherapy isn’t so very hard to go through these days, with the availability of ondansetron. I learn this week that my chemo has only given me a partial remission, so my future is changing. Nonetheless, I would already be dead if I hadn’t done it, so I’m ahead of the game.
I replied to the [Globe and Mail] article with:
Do, please, continue to highlight the dreadful situation that children with inadequate parents find themselves in. It’s an everyday occurrence that incapable parents provide sub-standard parenting. Teletubbies are not the same as involved and competent parents, and this seems to be an issue for an enormous number of households. But letting a child decide what treatment to accept for a life-threatening disease is an abrogation of parenthood that I can’t quite seem to swallow. That wretched couple must feel dreadful, and if they don’t they ought to!
Yes, of course I’ll continue to highlight the unnecessary deaths of children due to unwarranted respect for faith. Children should not become martyrs to their parents’ religion. But we all should pitch in here—Canadians and Americans alike—for both of our countries are afflicted with this problem. The vast majority of American states, for instance, have religious exemptions for children’s medical care. Call it out when you see it, write letters to newspapers and legislators, and just do what you can. What’s at stake here are the lives of innocent children, brainwashed by their faith-addled parents. Let us not forget that this is not an abstract philosophical issue, but involves people like this:
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I saw this story as well and was depressed by the mother’s desperate attempt to justify her actions. Jerry and Lancelot have summed up the issues perfectly. Thanks.
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Wonder if the Templeton Foundation has done any studies on this area of science vs religion.
Sure. “God’s will” won out in EVERY case — 100%. Amazing.
Seems he’s pretty bloodthirsty, that one.
This little girl, understandably, hated her treatments.
When complaining and begging her parents didn’t help, she played them. I’ve read elsewhere she told her parents that Jesus came to her in a dream and told her to quit the treatments and everything would be alright. It worked. It was just the excuse the parents needed to give in.
Sorry. It’s the parents’ job to make the hard choices — to make their kid sit through getting jabbed with a needle to get their inoculations, to hold them down as someone cleans the gravel out of their skin from the bicycle accident, etc., etc.
And when the parents won’t do it, it’s the courts job to step in. Unfortunately, in this case, NOBODY stepped up to be the adult.
There are NO excuses.
I think one of the most insidious parts of faith-based unreason is that it promotes the idea that death is not final. I don’t understand why theists and faitheists seem to not understand how life-devaluing their ideas are.
Well done Lancelot. And I hope you get to full remission soon.
I am going to write to my state representatives about the faith exemption (generally) and the vaccination philosophical one as well.
Here’s what I just wrote to my governor and all my state-level representatives:
Good. Maybe we could all copy this letter and send it where it might do some good?
( I mean with relevant parts changed for your state or province ).
Sadly, no such letter can affect my (Wisconsin) governor. He always does the exact opposite of what I advocate for.
Yeah, I feel for you. Walker is such a tool. And I doubt that the Assembly will listen either. Though, since are in the Milwaukee area, maybe your old representatives might.
“old”! Ha! I meant “own” representatives.
My own Representative and Senator are among the most liberal in the state. I’ve already let them know my view on such matters, repeatedly.
Well obviously then, GB, the trick is to start advocating for exactly what you don’t want.
Start?
Doh. I misread and missed the “n’t”.
Ignore me.
The George Costanza approach!
You beat me to it, Diane. And this is exactly the strategy I used when suggesting clothes for my daughter when she was 5 or 6.
Ha, ha, I remember trying similar strategies when my daughter was young, though not involving clothes.
Just everything else.
Good for you–thank you!
Good on you! Excellent letter! I hope the politicians recognize that taking notice will save lives.
Excellent!! What state are you in?
Minnesota. Sorry, I didn’t check this for ages.
Well said, jblilie. We don’t have this issue over in the UK – at least, I’m not aware of it – but if it ever occurs here, I shall follow your example and send such an email to my local MP.
Responsible parents don’t let an 11-year-old make life-or-death decisions. Makayla’s parents can’t wriggle out of culpability by claiming it was her own decision.
And, iirc, didn’t her parents also claim it was the chemo that killed her, by somehow inducing a stroke? Seems like they’re throwing anything at the wall hoping some excuse will stick.
(Or “parent” – singular.)
Hell, responsible parents don’t let an 11-year-old make decisions about whether they’re going to have salad or French fries every night with their dinner.
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Very sad. What a pathetic response from the mother.
I wonder what’s happening with ‘J.J”. I hope the people around them (family, friends, doctors) try to talk some sense into her parents.
I haven’t heard any word on the J. J. stuff, and I presume that if she went back into chemotherapy, somebody would have told me. Barring that, she’s going to die.
This illustrates one of the things about religion that most unhinges me. For want of a better term, I call it the Great Pumpkin effect. Failure to achieve the desired results of prayer is often attributed to some weakness or loss of faith by the requester. If you’d only prayed harder, been more humble, not had a momentary lapse in faith, well then that loving god would have taken pity. But alas, you are unworthy. God’s lack of action or compassion is your fault. It’s the same tactic that abusers of all types use. God can’t be blamed for your inadequacy.
Why is it that no one in the faith community stands up to this bully god and demands action, under penalty of witholding worship and sacrifice? I’m only partly kidding: the covenant has been broken, and not by people of faith. We all know why prayer doesn’t work, of course, but the only way out for believers is loss of faith – one would think it would be worth enough for someone to fight for their god’s compliance, given the investment billions of people make in his existence. The name “Israel” derives from “fight or struggle with God” (Islam interestingly means “submission to God”) – even the Jews aren’t going Martin Luther and nailing a manifesto on his deadbeat ass.
It is clear to many Christians that God frequently does not appear to answer prayers. Furthermore, they have explained to me that God is not like Father Christmas, granting prayers as the latter dishes out gifts – despite the fact that Jesus says in more than one place something to the effect the God does grant prayers.
A former President of the Methodist Conference explained to me that prayer is more about opening yorself up to God’s will, communing with God, etc. I told him the numerous people had offered to pray for me over certain difficulties I had and I asked him what was the value of those prayers if prayer were simply what he described. He kind of admitted that there was no value.
Incidentally, his email apologised for the “technical” nature of the answer – “technical” meaning “obscure BS” as far as I could tell.
The strange thing is, I know many people who have offered to pray for me instead of doing something practical to assist me. Strangely enough, having “opened themselves up to God’s will”, not a single one has ever been inspired or instructed by God to do other than what he or she was inclined to do in the first place (ie nothing).
I also agree with Pliny – there are plenty of Christians who do believe prayer works and blame your failures for it’s inefficacy.
I was grateful when I was having chemo for breast cancer a few years when my family and friends, instead of praying for me, formed a rota to drive me to appointments and entertain me during the couple of hours each infusion took. Practical assistance indeed. We often then went out to lunch since the rotten feelings didn’t start for a couple of days after the treatment.
Hope you’re doing okay.
Thank you. Nearly four years out and sill in remission!
I think I read that 1 in 3 people will get cancer in their lifetime. Age is part of that. In my case, it’s bad luck. I maintain a cosmic Ray hit me at the wrong time but my oncologist and radiologist don’t seem to enjoy, what I think, is a hilarious explanation (and could be true for all we know).
just a theoretical question. If the girl had been 17 years old instead of 12, would she have been allowed to determine her own fate? 12 is clearly a child (and I think she should not have been allowed to stop chemo) but when does someone magically and instantly change into an adult? food for thought.
I can only guess that Canada may be the same as the states? Here I think the legal age is 18. The law has to establish an age whether you agree with it or not. So then, at 18 you get to make the same wrong decision the parents made.
A recent case in the States, where the court assigned a guardian to oversee a 17 year old’s medical treatment because the mom didn’t believe in putting toxins in your body. I don’t remember what cancer she had, but the cure rate was quite high. The girl said she was old enough to decide to end her life, the court disagreed. Hopefully, she can accept her treatment and continue after she’s 18.
Off topic: Leonard Nimoy died, age 83. He lived long (but not long enough) and prospered. Geeks and Star Trek nerds everywhere are saddened.
Sorry to hear of Nemoy’s passing. And glad to hear of that case, though it surprises me 9for the USA).
In Quebec at least (last I checked) a 14 year old can decide for themselves to receive medical treatment. (This came up when I was growing up there in the context of sex education about abortion.)
and in the states, a teen can get medical care without telling their parents- but only if it has to do with reproduction (birth control)
Put it this way, if the girl had not been aboriginal she would be alive because the issue would be taken to the Supreme Court or maybe wouldn’t get that far as the Supreme Court already ruled on a case with a JW girl.
What complicates all this is the legislation of a First Nations which states that Girst Nations is in charge of dealing with medicine.
In my opinion, this needs to go to the Supreme Court.
I was pondering just that question today.
Have you seen pix of “Dr” Brian Clement? Archetype of a snake-oil salesman. And, as Jerry and others have pointed out, if the parents had been, says, white (or black) Jehovah’s grabbed Witnesses, the state would have spirited Makayla away for treatment sans explanation.
Is there not such a thing as children talking to other children who have been through the chemotherapy mill?
It occurs to me it would be a valuable form of support for a child to hear their stories when they begin to falter. The mentor would have to be a mature child / teenager and it seems some of these kids do look at life a little differently, they can be very mature and insightfull. If the child was shown how difficult e.g. the emotional highs and lows, of the effects of the process you have to endure from another young person and here is living proof you can survive the experience regardless and with the truth of the situation. Negate the negative effects and capitulation to woo with resolve.
I might add that the parents probably need to do the same with other parents and a mentor young adult.
To be clear, I am spouting off here as I have never had to endure anything close to this type of ordeal and it is quite likely they have this kind of support already in place.
Best wishes to Lancelot for what it’s worth.
I also wish Lancelot the best of care and health in his battle with Leukemia. My husband has stage 4 Adenocarcinoma, unknown primary that metastasized to his bones. He’s had a variety of chemicals, some of which he reacted to badly, some of which he didn’t. He also starts radiation next week. Reactions to cancer itself and the various treatments are extremely individual and, for the most part, unpredictable. Mature adults can make
decisions for themselves about treatments and how long they want to continue with them. Children definitely need parental and governmental protection from
religious and philosophical nuts.
I hope your husband does well with the radiation. The techs make all the difference!
Mikhayla’s mother strikes me as lazy and weak rather than religious. She just didn’t have the strength to go through her daughter’s chemotherapy with her. It must exhausting, and distressing to have to keep going through what is a very unpleasant course of treatment. I quite understand why you’d be looking for a way out, but that you would sacrifice your child’s life rather than persevere a few more months is disgraceful.
“Mikhayla’s mother strikes me as lazy and weak…”
She is also a mother who has just lost a child and is being hounded by the media. However culpable we believe she is, I don’t think we can assume that she’s not grieving. Also, grief takes a while to fully set in; it will get worse before it gets better. This woman needs to be allowed to grieve IMO.
Lazy/weak and religious are not mutually exclusive.
Religion might reinforce “learned helplessness”, which alas a lot of people who have gone through horrible situations (e.g., native americans) suffer from.
Moderately surprised that no one else has mentioned Stephen Gould’s first bout with … whatever throat cancer it was. Where his reported response to hearing that the median survival time for the disease was [so many] months, was to try to find out what he could do to ensure that he was in the “longer than” half of the population which gave that median.
Those who fail to understand statistics are doomed to repeat their misunderstanding time and time and time and time and time …
[ad nauseam]
I have been skimming through some Australian stuff and it seems that the state Supreme courts will always rule in favor of the best interest of the child.
There is some recognition of and sensitivity to (claimed) religious beliefs but not to the significant detriment to a child, certainly not death. Prevailing medical opinion will prevail.
There is a case now where a couple were ordered to get chemo for their kid but they left to try traditional El Salvador medicine. When it didn’t work they came back for proper treatment but it was too late. They needed a doctors certificate to get out of the country and some doctor gave them one. It is all before the court now to determine culpability.
I don’t think indigenous Australians have any special dispensation. I’m not a %100 but I doubt it. The courts seem fairly paternalistic.
Indigenous relations are very different in Canada. Like the US, aboriginals have certain extras – they carry a special passport that allows them to move freely between Canada and the US….they are for all intents and purposes considered a “North American” rather than a Canadian or American. They can freely live and work in either country. In Canada, they do not pay tax and carry a band card to present when purchasing things. I know there is some restriction on this as they may have to be living on a reserve to use it.
They can live on reserves but most cannot own the land as it is considered Crown land. Some reserves do allow land ownership.
They also receive free post secondary education.
In Canada, the Crown made a deal with all aboriginals so they are considered First Nations. Here you can read details on Self Government in Canada. Basically they run their government similar to how you’d run a municipality or city.
Here is the information about Makayla Sault’s community.
Regarding famous people. Barry Sheene, motorbike racer, got throat cancer at 52, apparently not related to smoking? and refused chemo. He used Rudolf Breuss diet method, a method and rationale that sounds ridiculous to me.
He lasted 8 months. I don’t know what his prognosis would have been with real treatment and apparently Steve Jobs tried magic and woke up too late too.
Although some of Jobs assertions and advice to Obama, regarding business practices don’t seem very intelligent, maybe he just wasn’t that smart.