Teen forced to continue chemo

[MicroBalrog]

Where have I stated I want to create some law to infringe the rights of the parents or their children?

I merely stated that a moral problem exists here that cannot be satisfactorily solved by legislation one way or the other.

[Headless Thompson Gunner]

Easy, trigger.  I never said anyone wanted to create any laws or infringe any rights.  You asked a simple question: who should be responsible for a child.  I gave a simple answer: the child's parents.

Parents bear responsibility for their children.  This is a basic truth, not a situation created by the law or by the state.  Problems occur when the law tries to fight this reality.  The problem in this particular case is that the judges won't let the parents take responsibility and exercise their own best judgment.

Hypothetical: what happens if the judges force chemo on the child, and the chemo harms or kills him?  Will the judges take responsibility for their actions?  Seems to me the judges may have control over the child, but they'll never bear any responsibility for his welfare either way.

[Stand_watie]

Easy, trigger.  I never said anyone wanted to create any laws or infringe any rights.  You asked a simple question: who should be responsible for a child.  I gave a simple answer: the child's parents.

Parents bear responsibility for their children.  This is a basic truth, not a situation created by the law or by the state.  Problems occur when the law tries to fight this reality.  The problem in this particular case is that the judges won't let the parents take responsibility and exercise their own best judgment.

Hypothetical: what happens if the judges force chemo on the child, and the chemo harms or kills him?  Will the judges take responsibility for their actions?  Seems to me the judges may have control over the child, but they'll never bear any responsibility for his welfare either way.

     Your points are what make this issue a difficult legal judgement. Chemotherapy will harm this child. Chemotherapy is poison. Chemotherapy could kill the child. The whole point of chemotherapy is to poison the patient just enough to kill the cancer without killing the patient.

[Balog]

HTG: so you concede that some things are not acceptable, even when done for medical or religious reasons? And the discussion is not whether the state should have any say in a child's medical decisions, but under what circumstances the state has the right to be involved?

I think of it a lot like physical discipline. The state should stay out of parents spanking etc their kids; however, this is not a license to beat your kid under the guise of "discipline." So again, the question is when does it cross the line into abuse? It's a slippery slope and I don't know the answer. But I do know "The state has no justification to intrude on the parent at all" is not the answer.

[De Selby]

Balog, I think you have really identified the issue.  There's no question that some limits should be in place, but how to draw them is really tough.

HTG, Parents should not have total control of this - if you had a couple of parents who really wanted a girl but had a boy, so they raised him as a girl and then pushed for a sex change at 14, even if the kid were willing...would that be permissible?  That's a pretty decent case for state intervention, as is this one.

I think that instead of rules there should be guidelines that whatever authority is involved has to consider, like:

-the likely impact of the illness (disfigurement, death, etc)
-the certainty that the bad effects will occur
-the certainty of improvement with medical treatment
-the certainty of improvement with the parents' method

It would also be necessary to inquire into the genuineness and nature of the parents' and child's motivations.

This is one where you need to rely on a good decision maker - tough to do, really.

[roo_ster]

Note that the article talks of "religious reasons."

In this case, it is Amerind religious dogma that leads them to their course of action.  But we can't have any outright criticism of that, or even mention of it in a light other than favorable.

Now, if they were icky Christian Scientists, you'd have had a quick ID of the religion and a heaping helping of derision to accompany the other bits of the story.

[HankB]

13 years old is an awkward age - old enough to know what's being done, but perhaps not old enough to make the responsible decision.

From what I've read, if untreated, the disease WILL kill the kid.

Treatment for this particular cancer is supposed to be effective in the majority of the cases - it's a cancer with a high "cure" rate. (If there's an MD in the house who believes my understanding of this is incorrect, please set me straight.)

With all the nasty side effects of the medication, I can see refusing chemo if it were for a cancer that had a miniscule chance of being cured - prolonging or inflicting misery without the prospect of a good outcome is something I'd oppose.

But that's apparently not the situation here.

Denying treatment that has a reasonable, realistic chance of saving the boy's life in favor of folk remedies based on Indian religious traditions is coming awfully close to human sacrifice in my book . . .

[Iain]

13 years old is an awkward age - old enough to know what's being done, but perhaps not old enough to make the responsible decision.

I think there is a complication in this particular case. Articles I've read skirt around whether or not this kid has a learning disability, but I'm pretty sure I've seen illiteracy mentioned. That may or may not mean learning disability, but it's at least been hinted at here and there.

We had a case not so long ago here where a girl under the age of majority was allowed to reject treatment for a cancer as she was terminal anyway and didn't want to endure more painful treatment to buy a little time. In these circumstances they get people into assess whether the child is 'adult' enough to grasp the consequences of the decision.

[mtnbkr]

We had a case not so long ago here where a girl under the age of majority was allowed to reject treatment for a cancer as she was terminal anyway and didn't want to endure more painful treatment to buy a little time.

Perfectly reasonable IMO.  However, this other kid has, IIRC, Hodgkin's Lymphoma, which is about as curable as cancer gets.  My understanding is he has a better than 95% (maybe 100%?) chance of survival if he gets treatment and a 100% chance of dying without.  I view that kind of like how I view seatbelt and car seat laws for small children, yes, it takes some authority away from the parents, but some parents are dumb as posts.  Why should the child be punished because they had the misfortune of being born to morons.

Chris

[Iain]

I can't diasgree Chris, I was just passing comment on the legal aspects as I understand them.

Orac, an anonymous oncologist blogger, has covered the case a fair bit (he also does the Friday Dose of Woo that I've referred to before) - http://scienceblogs.com/insolence/2009/05/daniel_hauser_and_the_rejection_of_chemo.php

It's all very easy to rail against religious ignorance as the cause of this tragic story, as many skeptics are doing (sometimes very heartlessly indeed) and certainly that was my first inclination. Often it's justified, as in the case of Madeline Neuman, the 11-year-old girl whose parents allowed her to die from diabetic ketoacidosis rather than take her to a doctor because they believed that prayer would cure her. However, in this case, I've come to conclude that it's all very knee-jerk and simplistic. Rather than being the driving cause of an irrational decision to reject curative chemotherapy in favor of quackery, in the case of Danny Hauser, religion appears to be more of an excuse to justify and provide a legal defense for a fear-driven decision in parents predisposed to "alternative" medicine. I'm again left wondering whether, if there had been better support mechanisms for families such as the Hauser family, this whole kerfuffle might have been avoided and Danny would be on his third course of curative chemotherapy right now. I realize that not everyone is reachable, but, given that Daniel's refusal of chemotherapy appears to be far less driven by religion than I had first thought, perhaps he and his mother would have been more reachable than I had thought.

He seems to conclude that in this case, as in a few others before it, the parents initially accepted conventional medicine and the child went through chemo. It's during the chemo, when the child is made ill by the chemo, when the parents question their decision.

It's not as if I'm oblivious to the fear of chemotherapy. Let's face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells.

After the chemo the child feels better, leading to either 'he's cured' or 'chemo is poison and made my child ill'.

'Chemo is poison', like 'alternative AIDS hypotheses' such as 'AZT causes AIDS symptoms' (and other notable areas of science), is another instance of science under attack from those who exploit misunderstandings and ignorance.

[Stand_watie]

Note that the article talks of "religious reasons."

In this case, it is Amerind religious dogma that leads them to their course of action.  But we can't have any outright criticism of that, or even mention of it in a light other than favorable.

Now, if they were icky Christian Scientists, you'd have had a quick ID of the religion and a heaping helping of derision to accompany the other bits of the story.

In all fairness to the American Indians, it's important to note that American Indian religious leaders were asking the mother to not defy the court order. I think this may be more along the lines of "Hippy dippy interpetation of Amerind religious dogma" rather than actual American Indian religious dogma, and if it IS actual American Indian religious dogma, then it is about as representative of the whole of American Indian religious dogma, as Fred Phelps religious dogma is of the whole of American "Baptist" religious dogma.

[Stand_watie]

...'Chemo is poison', like 'alternative AIDS hypotheses' such as 'AZT causes AIDS symptoms' (and other notable areas of science), is another instance of science under attack from those who exploit misunderstandings and ignorance.

     I don't think the statement that "Chemo is poison" is neccessarily an instance of science under attack. I consider it "poison", but don't discourage it as an effective cancer therapy. If I had cancer and my M.D. recommended chemo, I'd get chemo.

     

[Iain]

     I don't think the statement that "Chemo is poison" is neccessarily an instance of science under attack. I consider it "poison", but don't discourage it as an effective cancer therapy. If I had cancer and my M.D. recommended chemo, I'd get chemo.

    

Should have been clearer 'chemo is poison, don't have chemo', which exists out there, like anti-antiretroviral quacks.

[Stand_watie]

Should have been clearer 'chemo is poison, don't have chemo', which exists out there, like anti-antiretroviral quacks.

Fair 'nuff. Put me in the "Chemo is poison, only use it if you have cancer and your Dr. recommends it" category.

[roo_ster]

In all fairness to the American Indians, it's important to note that American Indian religious leaders were asking the mother to not defy the court order. I think this may be more along the lines of "Hippy dippy interpetation of Amerind religious dogma" rather than actual American Indian religious dogma, and if it IS actual American Indian religious dogma, then it is about as representative of the whole of American Indian religious dogma, as Fred Phelps religious dogma is of the whole of American "Baptist" religious dogma.

Agreed. 

My point is not necessarily to plumb the depths of Amerind religious dogma, but the media's oleaginous deference to it, where it would have shown none toward an analogous Christian dogma.

[makattak]

Agreed. 

My point is not necessarily to plumb the depths of Amerind religious dogma, but the media's oleaginous deference to it, where it would have shown none toward an analogous Christian dogma.

My vocabulary just expanded. Nice word, quite apt.

[Headless Thompson Gunner]

HTG: so you concede that some things are not acceptable, even when done for medical or religious reasons? And the discussion is not whether the state should have any say in a child's medical decisions, but under what circumstances the state has the right to be involved?

I think of it a lot like physical discipline. The state should stay out of parents spanking etc their kids; however, this is not a license to beat your kid under the guise of "discipline." So again, the question is when does it cross the line into abuse? It's a slippery slope and I don't know the answer. But I do know "The state has no justification to intrude on the parent at all" is not the answer.

What I said was that parents are responsible for their children.  The state can't be and won't be.  As for medical decisions, which often boil down to judgment calls about juggling different risks and weighing different priorities on what outcome is best, the parents should have the say if the child can't decide for himself.  

Nobody is disputing that these particular parents are trying to do what they think is best for their child.  They just have a different idea of what the best way to achieve that is.  This would be a different discussion entirely if the parents were trying to harm or neglect the child, or if the treatment in question wasn't so harmful and dangerous, or if the child and the parents disagreed on what should be done.  But since none of this is the case, it really just boils down to a difference of opinion on which medical treatments are best, and what outcomes are most desirable.  I'm not sure how anyone except the child involved and his caring parents can make a best decision.  I certainly can't see why someone else's decision should be forced on them.

Frankly, I think the state and all the rest of us should mind our own business and leave 'em alone.

[roo_ster]

Fair 'nuff. Put me in the "Chemo is poison, only use it if you have cancer and your Dr. recommends it" category.

What he said.

That stuff is nasty, relying on the hope that it kills the cancer before it kills the patient.  Also, death caused by chemo is by no means uncommon.

But, I would likely undergo chemo, were it at all likely to be helpful.  I would also toss in several bales of wacky tobaccy(1) and a round gallon of steeh-roads(1)(2) to help during & after.



(1) I am not really concerned with legality in the case of my own health or that of my loved ones.  My respect for the rule of law can be stretched only so far before breaking.

(2) IIRC, anabolic steroids have been prescribed to cancer patients undergoing chemo.

[MicroBalrog]

Note that the article talks of "religious reasons."

In this case, it is Amerind religious dogma that leads them to their course of action.  But we can't have any outright criticism of that, or even mention of it in a light other than favorable.

I suggest that you read the expositions of the sect in question on "Respectful INsolence". They're about as Amerindian as I am.

http://scienceblogs.com/insolence/2009/05/daniel_hauser_and_the_rejection_of_chemo.php

The reason given by his Daniel and his mother Colleen is that they belong to a highly dubious-sounding American Indian religion called Nemenhah, which is led by Philip "Cloudpiler" Landis, a white man who claims to be a naturopath and Native American "healer" peddling "cures" for AIDS and cancer

[roo_ster]

MB:

Interesting article, but I am not sure it is relevant to my point.

Whatever the underlying reality, they claimed their religion forbade the treatment and most of the media deliberately were non-specific about the religion in question.  If I were the least bit cynical, I would think that this was deliberate and that the media would hope that readers would assume they were Christian fringers. 

This is a different standard of behavior than when it is a Christian fringe religion.

Tangentially, I am not the least bit surprised that the leader of the religion in question is, for all appearances, white.  That matches with a goodly portion of my experience on indian reservations, where the requirements were historically very loose (but have been tightening up the last decade+, due to the advent of indian casinos, for reasons you can imagine).

[MicroBalrog]

It amazes me that you managed to turn this into a debate on the media and their evil, evil anti-religious attitudes.

I do not hate Christians (though I am more sympathethic to Evangelical fundamentalism than, say, Catholicism, for political, philosophical, and aesthetical reasons), but I am not a great fan of them (on the argument that "we are in the semi-finals now"). The big problem is that the media hate freedom, not that they hate a given group. If they hated atheists, it'd be as ridiculous.

[Firethorn]

Fair 'nuff. Put me in the "Chemo is poison, only use it if you have cancer and your Dr. recommends it" category.

I'm in there as well.  For that matter, it's the same way with radiation therapy - dividing cells are the most vulnerable to radiation, and cancer tends to be the most rapid dividing.  Radiation kills 'good' cells as well, you just try to restrict the treatment to cover the cancer the most while touching the non-cancer areas as little as possible.  I seem to remember one system that uses 3-7 'beams' of radiation to cook the cancer spot while reducing average exposure levels for the rest of the body.

Same deal with chemo.  With few exceptions, cancer cells carry your own DNA, just broken.  It makes it difficult to target - whether by your body's immune system, chemo, or radiation.

[Iain]

There are legions of peddlers of woo. They vary in their malignancy, from those who sell potions as supplements to healthy living to the truly delusional, to the outright evil. In the latter camp are those who push cancer patients to reject their oncologists advice, or AIDS patients to come off their meds. They truly exploit the vulnerable with promises of cures, and conspiracy theories of doctors wishing to keep them sick or kill them.

Matthias Rath falls into this catergory - http://www.badscience.net/2009/04/matthias-rath-steal-this-chapter/ - I've posted that before. Ben Goldacre's book is an exceptional read by the way, he really lays into media characters such as "Dr" Gillian McKeith.

Goldacre's main complaint is that there is actually a progression towards moving things such as complementary medicine into the mainstream. Orac has plenty to say about this too. In some ways it doesn't seem like the worst thing possible, we know about placebo and studies on homeopathy as Goldacre outllines demonstrate that perhaps an old fashioned 'being listened' to relationship with a therapist actually has benefits. The treatments themselves though should not placed on a par with modern medicine.

The other big issue:

Despite the extremes of this case, not one single alternative therapist or nutritionist, anywhere in the world, has stood up to criticise any single aspect of the activities of Matthias Rath and his colleagues. In fact, far from it: he continues to be fêted to this day. I have sat in true astonishment and watched leading figures of the UK’s alternative therapy movement applaud  Matthias Rath at a public lecture (I have it on video, just in case there’s any doubt). Natural health organisations continue to defend Rath. Homeopaths’ mailouts continue to promote his work.

- from the link above.

Now how we protect people from this, I don't know. But during the days that Rath and Duesberg held sway over figures such as the South African Minister for Health and Thabo Mbeki people were harmed by their policies, and people continue to be harmed when they are taken in by malignant charlatans. When it comes to AIDS or cancer I'm not sure that I can fully accept that vulnerable people should just be left to them.

(On a sort of sidenote - kooks can be dangerous, or at least threaten to be dangerous - Anti-fluoride extremists 'threaten to kill MP')

[makattak]

I've read about Matthias.

I'm sure he is responsible for many deaths in Africa as a result of his snake-oil salesmanship. I think only the murderous thugs who rule there and Rachel Carson have more blood on their hands.

I'm also certain he's as smug as they are in their self-righteousness.

[Iain]

I'm sure he is responsible for many deaths in Africa as a result of his snake-oil salesmanship. I think only the murderous thugs who rule there and Rachel Carson have more blood on their hands

Bait?

The only people who claim that Carson has blood on her hands know as much about as science as Rath does. DDT as panacea is woo too.