Children Are People, Not Possessions...Right?
Where should we draw the line on letting a parent deny a child medical intervention that is likely lifesaving?
A Canadian judge has ruled that an Aboriginal woman has right to take her cancer-stricken daughter out of chemotherapy. Tom Blackwell writes in the Canadian Nat Post:
BRANTFORD, Ont. -- An emotional dispute over a family's decision to pull their cancer-stricken daughter out of chemotherapy ended Friday with a potentially far-reaching constitutional decision, as a judge ruled First Nations' people have a legal right to seek out traditional native remedies.That right under the Constitution extends to eschewing modern medicine in the process, suggested Ontario Justice Gethin Edward.
He rejected a request by the hospital that had been treating the 11-year-old girl to force the local children's aid society to apprehend her so she could resume chemotherapy. Doctors have said her kind of leukemia has a 90% cure rate with modern treatment, but is an almost certain death sentence without it.
Earning applause from many in a packed courtroom Friday, the judge said traditional health care is an integral part of the family's Mohawk culture and therefore protected by the Constitution. He cited Section 35(1), a provision that recognizes "existing aboriginal and treaty rights," but is more often associated with native fishing and hunting practices than treatments for deadly diseases.
Evidence showed the mother from Six Nations reserve is "deeply committed to her longhouse beliefs and her belief that traditional medicines work," said Judge Edward.
...The judge did not address the fact that the girl's parents also took her to a private Florida clinic run by a non-native businessman whose only licence is reportedly for providing massages - but who claims he can treat cancer.
More on that:
Juliet Guichon, a University of Calgary bio-ethicist, was more blunt, saying the case seems no different than those where the courts have ruled a religious belief -- like that of Jehovah's Witnesses -- is no justification for denying a child needed treatment."The real issue is not whether the mother has a treaty right to practise traditional medicine but whether the child has a right to life and to medical decision-making that can help her live," she said. "How does 'traditional aboriginal medicine' mean taking a child by motored vehicle to a white man in Florida, who has no apparent medical qualifications and recommends eating raw vegetables to cure leukemia?"
The girl began chemotherapy for acute lymphoblastic leukemia in late August but pulled out after 10 days, she and her parents saying the hospital was putting "poison" in her body.
As well as receiving unspecified aboriginal remedies, the girl travelled to the Hippocrates Health Institute in Florida for other alternative treatment. According to a CBC report, the institute provided cold laser therapy, vitamin C injections and a strict raw food diet as part of a service that cost $18,000.
Chief Hill said it was the family's right to seek out any alternative care they chose. As for actual traditional medicines, she said she did not know exactly what the girl had received.
As for why the judge decided this way, could it be that Canadian Aboriginals are lots groovier and more PC-mystical than Canadian Jehovah's Witnesses?
(It seems some beliefs are cooler to "respect" than others -- all the way to a child who will likely end up dead thanks to her parents' belief in some quack's vitamin C treatment and maybe a couple shakes of a shaman's chicken bone necklace over her left foot.)
In a ... (1995) Canadian case, B(R) v. Children's Aid Society of Metropolitan Toronto [23], Jehovah's Witness parents refused a blood transfusion for their severely anemic 1-year-old daughter who was at risk of congestive heart failure. The baby was made a ward of the court in order to administer clinically necessary blood transfusions. The Supreme Court of Canada ultimately ruled that this state intervention was a legitimate limitation on religious freedom. In their ruling the Court considered Canada's Charter of Rights (section 2 (a) - right to freedom of conscience and religion) versus the Ontario province's obligation to a "child in need of protection" under the Ontario Child Welfare Act.
RELATED: How traditional beliefs in Africa -- kissing corpses -- help spread Ebola.
About that "Hippocrates Health Institute," here's cancer doc Orac at ScienceBlogs with the nutshell:
1. A child is diagnosed with a treatable, curable pediatric cancer. (Note that most pediatric cancers are among the most curable cancers there are. Pediatric leukemias and lymphomas, for example, have gone from a virtually-zero survival rate 50 years ago to survival rates that approach 90% or even more. Truly, if there is a triumph of science based medicine, it is in pediatric cancers.)2. The child begins chemotherapy, going through part of the recommended protocol, and suffers the expected side effects.
3. The parents, who quite naturally have a hard time watching their child suffer, hear about some quackery or other that promises to treat their child without the side effects of chemotherapy. If they are prone to belief in "natural healing" or alternative medicine, there is a good chance that they will stop their child's chemotherapy and opt for the promise of the "natural healing" that claims to be a cure without the pain.
4. Doctors, alarmed at the likelihood that the child will die, report the child to the child protective service authorities, who intervene.
5. There is a court case. If the court case goes against the parents, frequently they flee with the child, as Daniel Hauser's mother did, as did the parents of Katie Wernecke, Abraham Cherrix, and Sarah Hershberger, among others.
6. At this point, one of two things happens. Either the parents are persuaded or ordered to treat their child properly (as in the case of Daniel Hauser); they come to some sort of compromise that allows the child to get some treatment plus "alternative healing" (as in the case of Abraham Cherrix); or, a depressingly common outcome, they win the "right" to let their child die through medical neglect, as has just happened with this First Nations girl with lymphoma.
6. Through it all, quacks leap on these stories as examples of "fascism," and "gunpoint medicine" in order to promote their world view of "health freedom" (otherwise known to skeptics as the freedom from pesky laws and regulations outlawing fraud and quackery), as happened in virtually all these cases, but most notably recently for the case of Sarah Hershberger.
Orac's take:
No doubt this ruling is monumental and precedent-setting, but in a very bad way. So, in other words, our neighbor to the south (at least to me in southeast Michigan, which is the only place where Canada is to the south) have declared that letting children die of cancer is an "integral" part of Aboriginal identity. I am not exaggerating. The court apparently didn't even take into account whether the "natural healing" chosen by the girl's family works. Meanwhile, Six Nations Chief Ava Hill is exulting over the ruling, apparently unconcerned that it will result in the death of an 11 year old girl. As I've said many times before, a competent adult should have the right to choose any form of medicine he likes or even to choose no treatment at all, but children are different. They are not capable of understanding the implications of their decision, and this girl, at 11 years old, isn't even in the gray area of the later teen years where an argument can sometimes be made for self-determination even though the child is a minor. They need and deserve protection from such outrageously bad choices on the part of the parents.This case is a complete failure on the part of the province of Ontario and of Canada itself to protect the lives of its most vulnerable members, children, particularly children of a minority group. Even worse, it is an indictment of the First Nations, which, rather than seeking to protect one of the most vulnerable members of its community, a girl with a treatable, potentially curable cancer, instead glommed onto this case as a vehicle to promote its rights vis-a-vis the Canadian government. I don't think it was cynically done; no doubt the leaders of this particular First Nations community and Six Nations Chief Ava Hill believe in their Aboriginal natural healing. On the other hand, it's hard not to think that there was some opportunism given that the parents appear not to have even chosen to use Aboriginal "natural healing" techniques.
Instead, they are using the rankest quackery, which has nothing to do with aboriginal natural medicine, administered by Brian Clement in a "massage establishment" in Florida.
...The interests of the child must come first, and if parents can't be persuaded to continue treatment of a highly curable tumor, then the state has a duty to step in. It's a duty at which Ontario and Canada have failed in the case of this First Nations girl. It's also a duty that First Nations authorities who supported the parents in filing suit have utterly failed to uphold.
Here's an Orac commenter's categorization of parental rights vs. parental duties:
I'm pretty certain I'm on record on a long-ago post on Respectful Insolence opining that being a parent - or more generally a guardian (natural or legal) - of a child doesn't confer rights so much as it confers duties - most notably, in the case of medical care, the duties to look out for a child's best interests.While there may come a (surely heartbreaking) point where withholding curative treatment from a child with cancer, in favour of, say, palliation, I would think that until reaching that point, it's in the child's best interests to have an opportunity to reach adulthood - that is, to pursue curative treatment, however unpleasant.
There is no *policy* that will uniformly protect the stupid and the gullible from the consequences of their actions.
While modern medicine against this particular disease is clearly the smart choice, there are many other cases where the decision is not so clear cut.
I'm willing to concede that many people chose medical treatments for their children based more on superstition and hope, rather than actual science, The truth is, that the lockstep medical protocols, in many cases are not much better in terms of odds.
This case, is about who gets to decide. I will take freedom, and stupid parents any day, over nanny bureaucrats.
Yes people are going to die, either way, but the idea, that government can fix everything and protect you from poor choices (by making sure you don't have any) will lead to far more bad outcomes.
Isab at November 20, 2014 6:15 AM
This is a very, very difficult issue. Consider two points:
- There is a time when the chances of recovery are so poor, and treatment so unpleasant, that the human thing to do is to stop treatment and let the person enjoy their remaining time.
- There are genuine differences of opinion on treatments. While some treatments (or lack thereof) are clearly detrimental, others are not. There is a huge gray zone.
Finally, just as you cannot eliminate all risk, you cannot eliminate all stupidity. Do you really want to give the State the ability to tell you how to raise your children? However well-meant, such power will be abused.
a_random_guy at November 20, 2014 8:01 AM
I'm willing to concede that many people chose medical treatments for their children based more on superstition and hope, rather than actual science, The truth is, that the lockstep medical protocols, in many cases are not much better in terms of odds.
Are you equating "message therapy" by a quack in Florida with a 90% cure rate with modern medicine? Do you really think that they have the same odds?
I think this is a very thoughtful and well organized blog post by Amy. Normally I am opposed to government intervention. A consenting adult should have a choice to seek whatever alternate therapies they prefer but a child is not a consenting adult. If the government is going to intervene in these situations it needs to be even handed and consistent and not let trendy religious practitioners have different rights from un-trendy religious peoples. It looks like the courts are setting the precedent in this case that will condemn a child to death.
Shtetl G at November 20, 2014 8:13 AM
"Are you equating "message therapy" by a quack in Florida with a 90% cure rate with modern medicine? Do you really think that they have the same odds?"
No, as I clearly pointed out, if you bothered to read carefully. In this particular case, the smart choice was chemo.
But the law isn't there to protect people who make smart choices. It is there to keep the government from defining arbitrarily the smart choice, and then forcing you into it.
chemotherapy and radiation are often thrown at stomach and pancreatic cancer, because insurance will pay for it, and there is no scientific evidence that it is effective against either one of these diseases.
They are using you as a lab rat, when they prescribe it.
So basically the appearance of doing something that the doctor, and associated therapy services are going to get paid for, is less honest than telling a patient that there is nothing that will probably save them.
But if I chose to get massage therapy because it feels better than puking my guts out for the last three months of my life, who are you to tell me otherwise?
Isab at November 20, 2014 8:46 AM
I see this as a thorny issue. On the one hand, you have cases like this where the cure rate is high and it seems kinda silly to try anything else. We collectively wring our hands for the child.
On the other hand, you get cases like what happened in the US where a child with a diagnosed illness was out of state, went for medical treatment, and the hospital didn't believe/agree with the previous diagnosis and terminated parental rights - for following a different doctor's recommendations.
Then there are the more standard cases. The doctor recommends surgery and the parents want to get a second opinion or wait and see if things improve on their own for a few months. Is that negligence? Or is it weighing the pros and cons and making the best choice possible?
When we decide that some "expert" knows best and default to what that person/group thinks, we give up valuable freedoms. It is also the "we know better, trust us" mentality the government has that we also see here. To me, that is one heck of a slippery slope!
Shannon at November 20, 2014 9:16 AM
As an adult over 18 it is our right to choose or decline life-saving treatment. It is when a minor child is having these decisions made by proxy that is the question. Who should make these kinds of decisions? The parent should be the default, but in cases where there are medically proven benefits with greater than 75% cure rates, I say government steps in on behalf of the medical professionals to do what they do - attempt to save a life. You can't fix stupid. But you should be able to go around them when the odds are in your favor.
gooseegg at November 20, 2014 9:29 AM
As much as us science nerds like to think of medicine as science, it is still part art (especially diagnosis). Moreover, we like to think science has everything figured out, and we simply don't know how much we don't know (ex. how much we are just now learning about probiotics & gut bacteria).
I am fully into science, but that doesn't change the fact that my child gets better, faster results from seeing her Chinese medicine practicing chiropractor than from her pediatric gastroenterologist... and without the side effects.
I totally dismissed it all until I was so desperate to help my child that it was physically painful. I finally gave it a go and haven't looked back (we still see the gastroenterologist, but we've been able to do a much milder treatment with much more success than previously - to the point where the GI asked for the chiro's info). I kick myself for waiting several years to try it.
One more thing. The mother was correct that the hospital was putting poison in her child. That is what chemotherapy IS. It is a chemical that is very bad for human health. It is just MORE poisonous to the cancer than the rest of the body. This is why clinical trials of new cancer medicines are difficult to do. Since they basically ARE poison (guaranteed to be very bad for you), they often can only do clinical trials on patients with no other options (otherwise the trials don't pass the ethics boards).
Shannon at November 20, 2014 9:29 AM
But if I chose to get massage therapy because it feels better than puking my guts out for the last three months of my life, who are you to tell me otherwise?
Well it looks like we are both not reading each others post because I have no problem with a consenting adult making that kind of choice. My problem is a non-consenting child having a death sentence handed to her when there is a 90% chance of her surviving cancer. I also have a problem with some alternate view points being respected and some being ignored by the government when it comes to treating sick children. That's my issue.
Shtetl G at November 20, 2014 9:32 AM
"But if I chose to get massage therapy because it feels better than puking my guts out for the last three months of my life, who are you to tell me otherwise?"
And if I chose that for my mother, or my child, why do you think some government bureaucrat's choices are superior to what I would decide for my loved ones?
That is the issue.
Isab at November 20, 2014 9:43 AM
Perhaps we ought to remember that sometimes these minors are 15, 16, 17 years old. Every now and again, I see a story of some teen begging his/her parents NOT to have another round of surgery/chemo/whatever. In those cases, if the parents refuse, should the government still get to step in? If not, at what age do we start listening to the child? Do we ever listen to the child OVER the parent at some point (say if the parent says "yes" and the kid says "no")?
Shannon at November 20, 2014 10:05 AM
Most children's hospitals have many people (social workers and psychologists) assisting in a kid's care to help with all of this. If the side effects are sooo severe and cannot be ameliorated and if his/her quality of life is nil, then I tell you there is no oncologist or ethics board that will argue against a parent or child. I know there are treatments that some people just can't handle, but honestly kids have the very best chance of survival than any of us. They can handle what a 40-year-old cannot. Give them that fighting chance. Usually they want to fight anyway.
gooseegg at November 20, 2014 10:35 AM
"Most children's hospitals have many people (social workers and psychologists) assisting in a kid's care to help with all of this"
I don't want the government and medical arm twisting towards their personal biases that comes with all this professional help.
Furthermore I resent the *hell* out of these unwanted services being paid for out of hospital overhead to pad my already outrageous bill.
Isab at November 20, 2014 12:19 PM
Because I know, firsthand, you should realize that Jehovah's Witnesses who deny their children blood transfusions still think they are doing what is in their children's best interests.
They think that if their children receive blood transfusions, they will die at Armageddon for not abstaining from blood. Or, if Armageddon happens after their children are grown, old, and dead from natural causes (which none of them think - they think Armageddon is just around the corner, and have for decades) their children will miss out on the resurrection and a chance to live forever in paradise on earth.
So to them, dying in this life for lack of a blood transfusion is a small price to pay.
Pirate Jo at November 20, 2014 5:06 PM
☑ Posted by: Isab at November 20, 2014 6:15 AM
☑ Posted by: a_random_guy at November 20, 2014 8:01 AM
☑ Posted by: Isab at November 20, 2014 8:46 AM
☑ Posted by: Shannon at November 20, 2014 9:16 AM
☑ Posted by: Isab at November 20, 2014 9:43 AM
☑ Posted by: Isab at November 20, 2014 12:19 PM
Crid [CridComment at Gmail] at November 20, 2014 6:26 PM
If this was some born-again fundie, the courts would be leaping to snatch the kid away. But since the mother is a Native, her superstitions are more interesting and worthy than those of other ignorant hicks. Ridiculous.
KateC at November 20, 2014 7:44 PM
Consistency alert!
Be sure that you realize that if you advocate government intervention to force the treatment of one person, you advocate government intervention to treat you.
Especially in the case of Obamacare, this is very likely not to be what you want. A government clerk, not a doctor will make the determination for you. If you do not pay, you will have no say. None.
Radwaste at November 20, 2014 11:54 PM
For those of us living in Alaska, Orac sounds like the product of an American high school geography class.
Jeff Guinn at November 21, 2014 12:17 AM
Jeff,
I've heard that claim too, in Michigan public schools, but it's inaccurate. The Detroit river flows nearly due west between Detroit and Windsor, Ontario, so you cross to Canada by driving south on the Ambassador Bridge. That's by far the most populated area of Canada that is south of any part of the USA, but look up Wales Island in Google Maps - that, several other islands, and a bit of the Canadian mainland are all south of the southeastern tip of Alaska.
IIRC, this claim originally was expressed as the only place in the 48 states - in textbooks printed before Alaskan statehood. It's probably been carried over through many editions. But even that is wrong. The border between Lake Superior and Lake of the Woods is quite twisty, and in Google Maps it appears to have at least two spots where a projection of the US is north of a projection of Canada.
markm at November 29, 2014 8:46 AM
While I am not familiar with Canadian law, it's quite likely that the law really does require this result, leaving the judge no choice. Indian tribes also have some special privileges under American laws, e.g. fishing rights and casinos. Often the tribal reservation is subject to federal but not state laws and taxes. It is also partially self-governing; e.g. if a Navaho steals from another Navaho on tribal land, tribal police and courts handle it, but murder is a federal case investigated by the FBI. This is because the tribes were once sovereign nations, who only gradually came under American jurisdiction via treaties that reserved some rights.
So a store on a reservation can sell cigarettes free from state taxes - although the state cops can bust non-residents when they drive home with tax-free cigarettes. Forty years ago or more, someone realized that state gambling laws also did not apply, giving a huge profit potential to the few reservations that were easily accessible from populous cities. But most of the reservations were SOL geographically. OTOH, some "extinct" northeastern tribes such as the Pequot miraculously reappeared, claiming a few hundred acres near a city as a reservation, just big enough for a large casino. Congress finally worked out a deal where the tribes accepted a little regulation in exchange for the right to build casinos off the reservations. Or to scalp stupid whites financially - which seems like just a little compensation for all the wrongs that Indians endured.
markm at November 29, 2014 9:13 AM
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