Makayla Sault, killed by religion and gullibility


It’s always sad when a child dies of cancer. Makayla Sault, an 11 year old Ojibwa girl, has died after refusing chemotherapy for her treatable cancer. She claimed to prefer indigenous medicine, although actually it was her parents who insisted on it, and strangely, this indigenous medicine consisted largely of megadoses of Jesus.

But guess who gets the blame for her death?

The Two Row Times reported that the New Credit girl suffered a stroke Sunday morning. In a statement to the paper, her family said: “Chemotherapy did irreversible damage to her heart and major organs. This was the cause of the stroke.”

“Surrounded by the love and support of her family, her community and her nation — on Monday, January 19 at 1:50 PM, in her 12th year, Makayla completed her course. She is now safely in the arms of Jesus,” reads her family’s statement. “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.”

You might be wondering exactly what this magical holistic treatment could have been. Orac has the story on the quack who was treating the girl.

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

Apparently, his big thing was wheatgrass enemas — so in addition to suffering all the effects of leukemia, Makayla Sault also received the indignity of pointless enemas.

Medicine didn’t kill Makayla Sault. Jesus did.

Comments

  1. anym says

    Come on now. I don’t think you can place the entirety of the blame on Jesus; I’m reasonably certain that no one in the bible suggests that sticking things up your ass is a good thing.

  2. twas brillig (stevem) says

    Chemotherapy: The one (and only) place where the medicine is actually a poison. Works by, cancer cells gobbling that poison far faster than healthy cells. Why fast eating healthy cells suffer consequences also during “chemo”, i.e. hair follicles and gut cells (resulting in nausea). But to refuse “chemo” is to let those cancel cells run wild and free. “Healthy foods” just give the cancer cells power to overtake the healthy cells in the body. Only if the chemo is overprescribed can any blame be put on the chemo. A scam-doctor that tries to “work-around” chemo with other snake-oils should be shutdown and charged with mass murder.

  3. moarscienceplz says

    She claimed to prefer indigenous medicine

    Ah yes, I think it was Sacajawea who introduced Lewis and Clark to the indigenous ozone pools, but unfortunately the wheatgrass was out of season at the time.

  4. Sastra says

    The real crime here is that this little girl was treated as a pawn in the name of ideology. Whether it’s alternative medicine, tribal medicine, or faith healing through Jesus, the rational scientific analysis of what it will take to save this child’s life was secondary to the right of her parents to use her to express themselves and their beliefs. The child viewed as property.

  5. Beatrice, an amateur cynic looking for a happy thought says

    brainpansky,

    Makayla said that chemotherapy was “killing my body” in a letter she read out on a video uploaded to YouTube last year. She had been suffering from the side effects including constant vomiting and weakness.

    “I have asked my mom and dad to take me off the treatment because I don’t want to go this way anymore,” she said. “I was sick to my stomach all the time and I lost about ten pounds because I couldn’t keep nothing down. I know that what I have can kill me, but I don’t want to die in a hospital in chemo, weak and sick.

    “But when 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. God, the Creator has the final say over my life.”

    (bolding mine)
    So Jesus killed her, and her parents killed her and the alternative doctor killed her.

  6. says

    The thing of it is, too, that if her statement Beatrice @8 quoted had stopped at:

    I know that what I have can kill me, but I don’t want to die in a hospital in chemo, weak and sick.

    …then I’d have supported her choice completely. Not wanting to die like that is a rational idea, and I could get behind that. Bodily autonomy.

    But when the evil quack gets involved, it changes the situation entirely: now it’s predation on one of the most vulnerable members of our society.

    I still say, usually unpopularly, that parents should not be allowed to teach religion to children. I know it’s impossible to stop, but it’s evil to twist developing minds with that horrific set of ideas.

    Requiescat in pacem, Makayla. Sorry we failed you.

  7. frugaltoque says

    While a huge chunk of the blame lies on the quack practitioners, it bears mentioning that part of the problem is the distrust that many native people have for their Great White Father. You don’t have to look far – broken treaties, abuse, the “residential schools” scandals – to see that my government has not been entirely trustworthy and neither has it ever been respectful of any parts of native culture.
    So yes, even if she were trying to use “real” native healing, and our nationalized health care system were telling her it’s bullshit, her relatives would be on pretty firm ground saying, “Yeah, you’ve told us our culture is bullshit for several centuries now. We should believe you now?”
    This isn’t to excuse letting this girl die when chemo gave her a 75% chance at remission, but it does explain the level of distrust and the contribution our entire attitude toward our native population had on the situation.

  8. says

    @6: Indeed. I continue to boggle at how random quackery in Florida is transubstantiated into “traditional aboriginal medicine”. And Jesus, even more so. I’ll consider respecting First Nations traditions to the extent they respect them themselves, and this ain’t it.

  9. Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden says

    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

    Says far more than the quack would realize….

  10. zibble says

    @10 frugaltoque

    While a huge chunk of the blame lies on the quack practitioners, it bears mentioning that part of the problem is the distrust that many native people have for their Great White Father.

    But they’re Jesus freaks.

    If they can accept our God, they can accept our fucking medicine.

  11. Ichthyic says

    Not wanting to die like that is a rational idea

    except when the real rational idea was not to die at all… did you forget that the chemo she could have gotten had an 80% success rate in her type of cancer?

    plus, it was NOT an informed decision. her parents were making it for her.

    this is a terrifically poor case to hang the bodily autonomy argument on… in fact, it was a deadly one.

    the American courts have been making the right decision on similar cases of late… the Canadian courts failed this girl entirely.

  12. militantagnostic says

    CaiteCat

    Not wanting to die like that is a rational idea

    What makes you think end stage cancer wouldn’t be dieing like that (sick and weak)?

  13. says

    80%, with the brutality of cancer treatments, is not necessarily good enough an argument to say someone can’t refuse treatment, no matter how old they are. How do we get to judge that part of her decision? Adults refuse treatment on occasion; as long as they’re not being preyed on (as I said, this doesn’t apply to Makayla, as her parents had sold her the bullshit quackery), they should have that right, in the same way we believe that a person suffering from a chronic, worsening and debilitating disease should.

    Please note what I actually said: deciding whether to accept treatment can be rational, but in this case it wasn’t, because her parents preyed upon her. But it’s the predation that’d be the issue, not this human being’s decision to prefer dying at home to being literally pumped full of toxic chemicals and maybe not dying, but maybe dying bald and puking her guts out.

    Why doesn’t bodily autonomy apply? Because her parents are idiots? I believe that if she was given the chance to give informed consent, she also has the right to choose not to consent. We don’t get to judge someone else’s assessment of their own tolerance for a given situation. Or rather we shouldn’t be.

    Keep the opprobrium where it belongs: on the evil fucker peddling snake oil, and the credulous dimwits she got stuck with in the birth lottery.

  14. The Mellow Monkey says

    zibble @ 13

    If they can accept our God, they can accept our fucking medicine.

    Allow me to paraphrase the old Tonto joke: “What are you calling ours, White Man?”

    Christian colonialism works through coopting native practices. This is how it’s always worked. From Saturnalia to Dia de Los Meurtos. Existing spiritual practices were taken and either branded as “devil worship” and forbidden or else twisted around to suddenly, magically, be about Jesus. Because native medicine and religion often went closely hand in hand, that meant that Jesus was frequently coopting the place of indigenous medicine.

    Colonialism didn’t come in and give people faith in science. It didn’t come in and offer a good, solid education. It snatched children from their families and killed them and beat them and tortured them into turning their backs on their history. And so in a mixture of generations of internalized racism and religious brainwashing, this family turned to Jesus. Not the White Man’s God in this context, but the figure who had coopted so many of their ancestors’ religious beliefs. The figure who promised salvation.

    This doesn’t absolve her parents of their guilt in this by any means, but there is context here. There is a lengthy history. I hope you might stop and think about why saying things like “if they can accept our God, they can accept our fucking medicine” might be hurtful or offensive to people who, perhaps, you’re excluding from “ours.”

    Nimaanendam, Makayla. You deserved better and the world let you down.

  15. The Mellow Monkey says

    Actually still pissed off. Shorter me @ 18: being subjected to hundreds of years of torture, murder, marginalization, threats, and indoctrination is not the same as accepting something.

  16. Ichthyic says

    How do we get to judge that part of her decision

    trying again… it wasn’t HER decision.

    please, look at the court decisions on exactly this kind of issue, in say, Oregon.

  17. Ichthyic says

    Why doesn’t bodily autonomy apply? Because her parents are idiots?

    uh YES, pretty much just that exactly.

    which is exactly what American courts decided as well.

    in fact, convicted the parents in that case of manslaughter and sent them to prison for 10 years.

    you seem to be confused, or are trying to confuse, what the actual issue is here.

  18. drst says

    A family member died not long ago, partly from ending chemo. Zie had pancreatic cancer, which is terminal, but the chemo was keeping it largely in check. The side effects were so miserable, and in this case there was no hope of remission or reprieve, although I would support any adult (who is not being coerced) making the choice to die rather than to continue with something so debilitating. I don’t get to decide whether someone’s decisions to refuse treatment are “rational” or “good” even if the decision means choosing death.

    This case involves a minor, however, which is a different kettle. We can’t be sure she was making decisions entirely for herself and without influence.

  19. Ichthyic says

    I would support any adult (who is not being coerced) making the choice to die rather than to continue with something so debilitating.

    so would I.

  20. says

    Holy fuck, Icyhyic, have you lost the ability to fucking READ? I’ve posted twice, and in both cases made clear that ALL I’M FUCKING TALKING ABOUT is the case where someone isn’t being fucking preyed on.

    Fucking done with this thread, unless or until someone whacks me again with the Visibility Stick. The first tap is apparently stuttering some.

  21. busterggi says

    “killed by religion and gullibility”

    You’re repeating yourself.

    BTW, when did Jesus become part of ancient ancestral First Nations tradition?

  22. Monsanto says

    I’m worried that some of that organic food may have contained DNA. That in conjunction with bio-energy fields can cause chemotherapy to destroy major organs. Since Jesus had already cured her, I don’t see how Brian Clement comes out unscathed. He should have been using Crystal Healing to counteract the chemo.

    He obviously didn’t take any of UMM’s alternative medicine courses.

  23. chrislawson says

    twas brillig:

    A small correction — chemotherapy for cancer is not the only situation we use poisoning in medicine. Antibiotics are essentially poisons, but targeted at the metabolic differences between the infecting organism and our own. And we often use chemotherapeutic agents in rheumatoid arthritis and other auto-immune conditions — again, their function is to poison cells, but in this case it’s cells that have high turnover due to their inflammatory activity. Having said that, your central point stands.

  24. chrislawson says

    drst:- Of course you get to decide whether someone else’s course of action is rational or good — not only do you get to decide this, but it is essential to do so if you want to be an effective health worker, or even more broadly speaking, have informed views about situations like this one. What you don’t get to do, if you believe in personal autonomy*, is impose your views on other people’s decisions.

    *Personal autonomy, of course, being contingent on being a legally competent adult and not, say, someone in the throes of acute psychosis…or in the grips of parents who are imposing their views in a way that will kill you.

  25. Doug Hudson says

    CaitieCat’s comments in this thread highlight a phenomena that I think is very common in online conversations (less so in person, where misinterpretation can be more readily resolved).

    Human brains work largely by pattern recognition, and we are very good at it–so much so that we often see patterns where none exist. In this case, I think people are reacting less to CaitieCat’s words as to the context in which they were posted: even though she has a very clear disclaimer that her point about bodily autonomy does not apply to the case in OP, the fact that she posted about bodily autonomy (seemingly) off-topic could be interpreted as a back-handed suggestion that it does, in fact, apply (or should apply).

    This requires an uncharitable reading of her words, and I don’t believe it because I’ve read CaitieCat’s posts before, but I see how easy it would be to reach that conclusion. Consider a pro-forced birther who posts in a thread about first trimester medical abortion: “Now, this doesn’t apply in this case, but isn’t D&C terrible?” Many of us would have suspicions about that person’s true intent.

    This is not to criticize anyone in this thread, just something I’ve observed in many forums. Because people judge posts not only (and perhaps not primarily!) by the words, but by context, perceived tone, and other factors, all sorts of misunderstandings and arguments can occur, often between people who are actually in agreement!

  26. Rob Grigjanis says

    Doug Hudson @30:

    This requires an uncharitable reading of her words

    No, it requires ignoring a lot of the words which she actually wrote. More than once. I’ve observed this a lot as well. It’s called stupidity.

  27. Ichthyic says

    have you lost the ability to fucking READ?

    nope:

    How do we get to judge that part of her decision?

    I read that just fine.

    Fucking done with this thread

    good.

    I’m stealing a comment from over on Jerry’s blog, because I think they covered the issues even more clearly:

    Jeff Lewis
    Posted January 20, 2015 at 1:28 pm | Permalink

    Children are not property of their parents. They are their own individual people, but without fully developed brains and the rational thinking and maturity that goes along with that. That is why parents have a duty to properly raise children until the children reach a sufficient level of maturity to face the world on their own. Parents should have latitude only in so much as they are acting in the best interests of the children. Once a parent’s actions jeopardize or cause harm to the child, they’ve gone well beyond any plausible latitude.

    Governments have the responsibility of protecting citizens, whether the citizen is being threatened by a stranger in a dark alley or by their own parents abusing them. Cases like this of withholding appropriate medical care are among the worst cases of abuse, since they result in the death of the child.

    Children do not have sufficient maturity, experience, or knowledge to make well thought out decisions on life and death issues. Their wishes should be considered, and given increasing weight as the child matures and approaches adulthood, but those wishes should not trump the judgment of mature, well informed adults (usually the parents, but the state if the parents are incompetent).

    Of course, there will always be grey areas. When does spanking become physical abuse? When does lecturing become verbal abuse? When does opting out of pills become criminal neglect? That’s why we have judges and the court system. If interpreting the law were easy, we’d just have clerks administering penalties rather than having judges.

  28. Holms says

    #17 CatieCat
    80%, with the brutality of cancer treatments, is not necessarily good enough an argument to say someone can’t refuse treatment, no matter how old they are. How do we get to judge that part of her decision?

    The fact that a minor is considered unable to give informed consent due to being a minor. Bodily autonomy can and should be overridden by parents that (it is hoped) are wiser than the child, and in fact we do this frequently. Child doesn’t want eg. an immunisation shot? Too bad, but if you stop your fussing and act brave, you can have a big dessert of your favourite ice cream etc.

    As Icthyic noted at #15, this is a poor case to frame in terms of bodily autonomy, because minors simply don’t have it yet.

  29. Grewgills says

    I don’t understand why very religious parents looking for either faith healing or traditional aboriginal healing would go to a quack that used new age woo. All of the “treatments” used by this snake oil salesman/killer of children and the desperate undereducated look very much like the things my hippie relatives would suggest for pretty much any ailment. The only thing missing is acupuncture and maybe chiropractic adjustments.

  30. PaulBC says

    CaitieCat, Harridan of Social Justice #9

    …then I’d have supported her choice completely. Not wanting to die like that is a rational idea, and I could get behind that. Bodily autonomy.

    I have to disagree. A minor cannot give informed consent. In this case, it’s very sad that her parents were tragically ignorant, because they were the ones with legal authority. But what it was the other way around?

    Ideally, the parents would understand the purpose of the treatments and would realize that the prognosis with treatment was fairly good. An 11 year old might not understand this, and need not understand it (though every attempt should be made to educate her about it). It’s the job of responsible adults to obtain the best medical treatment whether or not the minor agrees that these treatments are preferable to refusing them and dying as a result.

    If it were a question of an adult refusing treatment, I would agree with you.

  31. John Horstman says

    I’m on the dead kid’s side, assuming she was uncoerced in her stated wish, and even though she was functionally brainwashed. Do we really want to go down the road of determining who gets bodily autonomy on the basis of whether we – or someone else – thinks they are ‘compotent’? You all remember that one hell of a lot of people think atheism is a mental illness, right? Fuck mental health exceptions, fuck restricting it to adults, fuck any attempt to limit autonomy. If my body contains the genetic code needed to save all of humanity, I still have the right to jump into a volcano and deny it to everyone. Not even imminent survival need overrides bodily autonomy, else we’re back to opposing abortion rights. Bodily autonomy rights DO apply to the OP – Sault’s parents are awful and the predatory quack is worse, but she still had an absolute right to refuse treatment and die based on her misinformed beliefs.

  32. woozy says

    this indigenous medicine consisted largely of megadoses of Jesus.

    Um…. why do you say this? The parents are Jesus lovers but the quack seems to be a basic new-age holistic bs.

  33. PaulBC says

    John Horstman #38

    Do we really want to go down the road of determining who gets bodily autonomy on the basis of whether we – or someone else – thinks they are ‘compotent’?

    It’s not a long road, and for the most part it ends with the responsibility of adults to make sound decisions for children. There are instances of cognitively impaired adults with a limited ability to give informed consent, but this is less common and can be handled on a case by case basis.

    It’s true that some 11 year olds could make a rational decision in this case, but it’s not reasonable to expect an 11 year to be able to do so. In this case, it is likely that Makayla Sault (understandably) did not see past the immediate suffering of chemotherapy. As long as this view was reinforced by adults around her, she could easily be persuaded that the treatment was the real problem.

    We’re all “on her side”, and that includes her ignorant parents (OK not the quack doctor) but being on her side isn’t necessarily the same as working in her interest.

    I don’t believe that in this case she was best served by relying on her own 11 year old judgment to make a decision like this any more than a healthy child is best served by choosing their own bedtime and level of candy consumption. Eventually people grow up and make these decisions themselves (even if they never get good at it) but kids are entitled to the guidance of responsible adults.

    The question I would ask is how she would feel if she had continued with standard medical practice, survived, and returned to a normal life. Would she resent that her autonomy was violated, or appreciate the care that was taken to save her life? It’s impossible to know, but the latter answer is very likely. And she probably would not have needed to be coerced, just convinced by a caring and knowledgeable adult (sadly missing from the scene) that the treatment was necessary to save her life.

  34. jesse says

    With all the railing against the parents — and it’s justified — I think it is important to remember a few things that contribute to incidents like this.

    Picture yourself as a Native/ First Nations. Or even a non-white person in the US. Given the long and sorry history of white medical professionals, who you know, experimented on humans without their consent for decades, and given that every effort was made to eradicate Native people, imagine you walked up to them and said “you are a bunch of ignorant stupid brainwashed people for not believing in the chemo.”

    Oh, THAT will work. /sarcasm

    Before you jump on this, I am not advocating for “traditional” medicine over “western” medicine (I think the two aren’t always an either-or choice). I am saying that in an environment where western doctors haven’t exactly covered themselves in heroic glory, stopping stuff like this is more than just telling people they are ignorant.

    Trust has to be earned. And a sad situation like this is exactly what happens when you violate that trust. That violation of trust leaves families like Makayla’s in a doubly vulnerable position. They are not sure they can trust a white oncologist, who might have zero understanding of the culture they live in. Meanwhile someone else walks up who at least makes a show of listening to them. Who is going to win that argument? Guess what, the oncologist is gong to lose. The quack wins. And a kid dies.

    There’s a similar problem in African-American communities. After Tuskeegee can you honestly say to me that any African American in the country has any reason to trust a white doctor? Would you? If you learned that someone had experimented on your uncle that way what would you do to the next, perhaps well-meaning, white doc you saw? If you ever read Rebecca Skloot’s book about Henrietta Lacks — she talks a lot about this. This distrust is such a serious problem because it leaves a big huge honing opening for “alternative” medicine that doesn’t work. Especially for distraught parents. And when thinking about the effects on marginalized people it’s kind of important.

    The professionals I know of who work in Native communities understand that it’s important that people feel like they are being listened to. it isn’t Spock-logic behavior, but not much is when you’re dealing with fraught subjects.

    For example, you might be aware of the history of residential schools. Now imagine you live in an area where they can’t do outpatient chemo so easily – many native communities are pretty remote. So your kid has to go away for a few days. A white person walks up and says, “hey, we’re going to take your kid off for a bit.”

    Would you, as a Native, trust that person for a hot second? You would have zero reason to do so. None. Given the history you would have every reason to believe you would never see your kid again. The various state equivalents of child protective services are often little better. (I am not saying that happened here, I’m just using that as an example).

    What’s my solution? EARN THE TRUST.

    I capped it because for so many (largely white) atheists this seems to fly right by. Trust is earned. And we have not done half the work we need to do for that. Not even close. Just because you are a scientifically-minded person who waves around data on survival rates doesn’t mean any Native person should trust you for any reason. After all, the same people who did the Tuskeegee experiments were competent physicians as well, but if you knew they experimented on people would you trust any of them? I don’t know that I would. Efforts to eradicate Native culture via schooling went on until the 1960s. So this isn’t some “they’re mad about something 100 years ago” thing.

    Earning trust means recognizing that people will have certain beliefs because it’s a marker of identity. It means recognizing that hanging on to a culture that has been under attack from day one is important. Understanding that for some people, the option of being a “secular” person (whatever that means) isn’t always available. In fact not having to think about it is one of those privilege 101 bits.

    The fact that this wasn’t completely “traditional indigenous” practice is sort of beside the point. (Guatemalan Mayans are oftentimes a brand of Pentecostal or Catholic, that doesn’t make their religion and culture any less theirs). The point is that if you want people to trust the medicine and not do stuff like this, you have to demonstrate that you’re at least willing to listen to them.

    People often phrase this as “respecting people’s beliefs.” I think that phrase is a bit misleading. It’s about respecting the people involved. And if you can’t make the leap to seeing things from their point of view and figuring out how to work with that where possible, then the problem is yours. not theirs. Too often I see people here act as though there’s no history, no context for any of this. I mean, it isn’t like the parents were thinking “I hope my kid dies screw chemotherapy.”

    Earn the trust. Then you’ll see this kind of thing happen less often.

    I’ll link to a PBS story of a doc working on the Diné (Navajo) reservation.

    http://www.pbs.org/wgbh/mystery/american/navajoland/modmedicine.html

    It’s worth reading, because it shows how one can build trust and get people to sign on to giving their kids care. It also shows how much work there is to do on that front.

  35. says

    In order to give informed consent you need to be
    A) informed
    B) able to give consent

    11 yo may be able to be informed (and looking at her writing I don’t think this child was), but they are fundamentally unable to give consent. We don’t let them vote, drive cars, get married, drink alcohol and a bazillion other things that carry far less consequences than refusing life saving medicine.
    We are appalled when some countires try and convict 11 yo as adults.
    In short, we protect them from the severe consequences their actions could have because they are. not. able. to. think. those. things. through.
    Children are not small adults who lack knowledge. They are developing human beings whose brain structures have not yet reached maturity.
    That’s why they need adults to make those decisions for them. And as a society we need to make sure that the adults whose job that is are actually acting in the best interest of that child. Especially since in this case the decision wasn’t between suffering from chemo with an X% chance of survival and not suffering and 0% chance of survival, but 0% chance of survival and suffering from quack medicine.

  36. PaulBC says

    jesse #43

    imagine you walked up to [Native Americans] and said “you are a bunch of ignorant stupid brainwashed people for not believing in the chemo.”

    Right. Which is why a pediatric cancer team should have a competent social worker on hand and does not send over a contingent of Pharyngula commenters to help persuade the patient.

    The professionals I know of who work in Native communities understand that it’s important that people feel like they are being listened to.

    And ideally, you would want someone like that available in this case. Not at every hospital, but available when needed. I have no idea what plans (if any) are in place for this, but it’s a clinical question when mistrust is interfering with delivering treatment.

    I agree that blaming the parents is the wrong response to all this. They were entitled to effective treatment from their hospital, and did not receive it. The chemotherapy was (I assume) appropriate and had a good chance of stopping the cancer. I’m curious how much effort went in psychological and social care. Let’s assume the hospital made a good faith effort to get the parents on board. Why did it fail? There may not be an easy answer, and it may have been impossible in any case.

    It’s worth asking whether something could have been done differently. They were willing to start out on chemo. What changed? Maybe the side effects were poorly explained from the beginning. All we have is an 11 year old child observing (correctly) that chemo was making her lose weight and feel sick all the time. I don’t blame her for wanting to stop, and I don’t blame her parents for wanting their daughter to stop feeling pain. But didn’t anyone warn them ahead of time?

    On the other hand, I do blame the charlatan who let their daughter waste time on ineffective treatments and die. The medical staff had a hard enough job without opportunists out there doing their best to undermine their efforts.

  37. Doug Hudson says

    Rob Grigjanis@31,

    Not stupid, simply human. Human communication is far more complex than just spoken words–facial expression, tone of voice, body language, hand movements all contribute a great deal of information to augment the actual words. With purely written communication, all of that vital information is missing. And so our brains try to extrapolate or “fill in” the missing information.

    For an example that gets a lot of people in trouble, consider email. It is very easy for email to come across as much harsher than intended, because without the nonverbal cues, people often interpret the written word in the worst possible way. I’ve learned this the hard way, and over the years my email style has become what might be called “obsequious” if I were doing it in person–but in email it really helps avoid misunderstandings.

    This is also true to internet posts. It might seem logical to interpret posts based solely on the words in the post–but that isn’t the way the human brain works (at least, for most people). Instead, the brain tries to fill in the missing nonverbal cues, which often leads to misunderstandings.

    Of course, it’s impossible to guess all the different ways that someone might read a post, but I believe that a lot of online arguments could be avoided if people keep in mind that human communication is a vastly complex process and that misunderstandings are inevitable.

  38. woozy says

    11 yo may be able to be informed (and looking at her writing I don’t think this child was), but they are fundamentally unable to give consent. We don’t let them vote, drive cars, get married, drink alcohol and a bazillion other things that carry far less consequences than refusing life saving medicine.

    Yeahhhh buttttttttt……
    It’s the fact that it *is* their own life and so very personal to *them* and no-one else and that the consequences are so high that it’s important that children have *some* say or rights in the matter. No, they aren’t little adults, but they aren’t impartial sacks of potatoes either. I really think there can be and needs to be a feasible legal alternatives. I think consent but with many safe-guards and procedures to verify that the child truly understands and truly consent (not just one doctor and the parents). I’m still optimistic enough to believe this is feasible.

  39. frankathon says

    I wonder what the First Nations’ traditional medicine for lymphoblastic leukemia would be?

    Note: I know they didn’t use Indigenous “medicine”, they used Woo and Jesus.

  40. says

    Woozy

    It’s the fact that it *is* their own life and so very personal to *them* and no-one else and that the consequences are so high that it’s important that children have *some* say or rights in the matter.

    Yes, they should be heard and their opinion should be very much taken into account. It is their life, but they are not able to make decisions about it well. I mean, how many kids would just stay in bed if their parents didn’t kick them out in the morning and insist that they went to school?
    It gets triple complicated when the parents hold extreme religious beliefs that are actually harming the child.
    Would you let an 11 yo Jehova’s Witness bleed to death, even if the child is begging you to let them die because a blood transfers is against their religious belief?
    What about a 14 yo who wants to marry a 30 something man because she has been told from the day she was born that this is her purpose in life and she sincerely believes that?
    What about a child who commits suicide? Should you try to rescue them?
    Actually, parents and doctors do take the children’s wishes into account. My sister worked in the children’s oncology ward for a long time. There were many cases where the child decided “no more chemo” and the parents and the doctors respected that wish. Because everybody knew what was going on. The children had been through that before, the chances of healing were small.
    But do you think that in this case the child actually knew what was going on, actually understood that there was a really good chance of recovery with chemo and zero chance of healing with the quack? That she got support from her parents on going through with her treatment? I don’t think so and I don’t think that the parents actually made the decision in the best interest of their child.

  41. PaulBC says

    But do you think that in this case the child actually knew what was going on, actually understood that there was a really good chance of recovery with chemo and zero chance of healing with the quack?

    Clearly not. Even a reasonably well-educated adult may wind up taking the doctor’s word for it about the efficacy of the treatment. For that matter, even the doctor just has a general set of survival rates in different circumstances and may not place the patient in the right classification.

    Of course, we hope a clear-thinking adult will rule out the quack cure, but even a smart, scientifically curious 11 year old could reach different conclusions. At 11 years old, I still wondered if telekinesis could actually work, and watched TV shows about Bigfoot and the Loch Ness monster with interest. If someone had let me make my own medical decisions, the appropriate term would not be “autonomy” but “gross negligence”.

    I don’t think that the parents actually made the decision in the best interest of their child.

    I strongly agree. I’m not Canadian and I have never heard of McMaster Children’s Hospital, but it appears to be a top pediatric center. I wonder if they could have done something differently. If the parents had refused care outright, that would be one thing, but why did they consent to 12 weeks of chemo and then drop? It sounds like a missed opportunity to me.