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Current Events: Aboriginal Girl Can Opt For Traditional Treatment

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This infuriates me.

 

Here's a very important quote this article excluded, and directly contradicts the judge's rationalization about how native medicine predates european colonization and ruling against its use is somehow a propagation of the natives' oppression:

 

The kid's mom: “It's a mother's worst nightmare.… I remember I would just watch her, and listening to her pray, ‘Oh, God. Come and get me, come and take me from here.’ She said, ‘Mom, [it’s] not the leukemia but it is the chemo that is going to kill me.'”

 

Here's another, in case that was ambiguous: "the evangelical Christianity practised by the Sault family and the vision of Jesus that helped Makayla make up her mind."

 

How blatantly contradictory and infuriating. Also cheers to the mexican spa owner that will happily collect $18 000 from these people for his herbs. 

 

Who else thinks the judge won't touch this because because he wants to avoid a PR battle? 

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For a few days, I've been working on a blog post about this topic and I was really debating whether to even post it because racial stuff can ignite quite the crapstorm and I try to stay (mostly) upbeat and minimally controversial.

 

But I just posted it anyway, because essentially the court ruled that Native parents can medically neglect their kids so long as they call it a cultural practice, and I'm angry. My kids are Native and are no less deserving of legal protection from medical neglect than the kids of JWs (who will be placed in the custody of a guardian ad litem to receive life saving blood products even if their parents refuse on religious grounds.) I know that there are a lot of very, very difficult historical and current issues between Canadian governments and First Nations, but none of that makes it okay that the band is essentially supporting the exploitation of a very sick little girl and her family.

 

I'm not going to copy my whole post here, but you can read it at http://premedpostmom.blogspot.ca/2014/11/on-rights-and-children.html if you want to.

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For a few days, I've been working on a blog post about this topic and I was really debating whether to even post it because racial stuff can ignite quite the crapstorm and I try to stay (mostly) upbeat and minimally controversial.

 

But I just posted it anyway, because essentially the court ruled that Native parents can medically neglect their kids so long as they call it a cultural practice, and I'm angry. My kids are Native and are no less deserving of legal protection from medical neglect than the kids of JWs (who will be placed in the custody of a guardian ad litem to receive life saving blood products even if their parents refuse on religious grounds.) I know that there are a lot of very, very difficult historical and current issues between Canadian governments and First Nations, but none of that makes it okay that the band is essentially supporting the exploitation of a very sick little girl and her family.

 

I'm not going to copy my whole post here, but you can read it at http://premedpostmom.blogspot.ca/2014/11/on-rights-and-children.html if you want to.

 

Thanks for the post Birdy! It's interesting to see this issue through an alternative lens

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I agree that there are more research done on chemo than homeo. But just because little research was done on homeo doesn't mean homeo is completely useless. A few years ago people were saying the same thing about acupuncture but now it's covered by EHC.

 

Ultimately I would defend the mom's decision. She seems to be a rational parent who said during her CBC interview that "she did her own research, she understands the risks of chemo and homeo and she believes she has the rights to choose the treatment for her child".

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Didn't the government say the same thing to the natives when they abducted their children to the residential schools? (i.e. "you are unfit parents because your culture is bad therefore we have to take your children away").

 

Good argument.

 

I agree that there are more research done on chemo than homeo. But just because little research was done on homeo doesn't mean homeo is completely useless. A few years ago people were saying the same thing about acupuncture but now it's covered by EHC.

 

Ultimately I would defend the mom's decision. She seems to be a rational parent who said during her CBC interview that "she did her own research, she understands the risks of chemo and homeo and she believes she has the rights to choose the treatment for her child".

 

Bad argument. Medical treatment for ALL is highly curative, whereas the natural 'treatment' they're seeking is quackery (have you checked out the website of the clinic they're planning on going to?)

 

I think the important bit of this case isn't the validity of the non-medical treatment, but the issue of aboriginal sovereignty. I'm not sure where I stand on the matter. Imposing treatment would quite possibly be crossing the paternalism/white saviour line.

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I'd like to throw in my two cents as well, play a bit of devil's advocate and get out in time for lunch, haha. Now note that I can only experience things from my own perspective and that's all I'm claiming here.

 

----------------

 

1) Right to refusal:

First, I thoroughly enjoyed this quote:
 

 Reality doesn't care what you believe. Biology is not a matter of opinion.

 

I for the most part entirely agree, however it can be picked apart - in fact the very nature and existence of placebo effects places a high degree of importance on one's perspective and outlook on the particular treatment. If you're taking chemo and convinced that it's medical quackery you're more likely to succumb to the illness (or even the treatment itself) than if you had extremely high hopes. Additionally, there are (statistically significantly) fewer cancer deaths in November/December, and more in January, and the hypothesized reason is that people feel it's important to hang on until they see their families for Christmas...so they do.

While I would also argue that chemotherapy is the girl's best option, there is no way you, or I, or even the world's most esteemed oncologist could claim that chemotherapy is the best possible treatment. That's why there's so much money being poured into cancer research (and even the few I can humbly grasp truly do sound exciting). it's medical opinion, given X Y and Z evidence to back it up, that chemotherapy is the current best treatment for medicine. That may very well change at the drop of a hat.

In other words, because I like math, Biology =\= Opinion... but can we be truly sure that (Western) Medicine = Biology? We're getting better at approximating Biology, granted, but I think we still have infinitely far left to travel and there are countless cases of so called "Physician Induced Illness." Some of these are due to neglect, some due to selecting the wrong treatment, and some due to the harsh nature of certain treatments (chemotherapy being a major example). As long as that's the case, I feel the right to refusal is critical.

 

---------------

 

2) Children and their right to refusal:
 

The consensus seems to be that the issue gets more complicated when it's a child and the parents are simply their voice and brain (as they have yet to fully develop either). I don't have children, but I have an autistic brother that I devote significant time to raising and so I vaguely understand what that's like and some day, hopefully, I can understand the pains and joys of parenthood for real. Until that day however, I can only speak about my own experience, and I've already refused several treatments (in consultation with my family physician, the medical literature, and my family) on my brother's behalf that were proposed by his specialist. Should this right be taken away? 

 

I feel I've done my due diligence in researching the proposed treatment, evaluated our situation (ie. my brother is non-violent, and so a medication that suppresses non-violent tendencies but promotes sleeplessness would in fact be harmful), but what does that mean? How can we precisely define due diligence, and ensure that it is being correctly followed? Should I somehow be given preferential treatment for being "smarter" than others, or more capable of performing the necessary research, and comprehending the literature?

I know my brother far better than his specialist, and I highly believe we made the correct decision regarding his treatment. This is ultimately what I feel the issue boils down to. A parent/guardian/caregiver has the right to speak for their child as they (hopefully, and I feel in most cases they do) know the child and can best approximate their wishes. They may or may not have the medical knowhow to make an informed decision, or find out about an informed decision and this is hopefully something they would do in consultation with someone who does (for example, the specialist). But the specialist doesn't always know best. 

 

We may have the opinion that the parent in the article has not done the sensible thing (I certainly do, and from the sounds of it the majority of posters here agree), but we don't know the patient, her wishes and her beliefs. That is the bottom line. Everyone seems to be operating on the assumption that the parents are enforcing their religious will and zealotry on the child, but no one knows what the child actually feels about it. Surely we can all envision a scared child, too intimidated to speak ill of the parents and their way of doing things to open their mouths, and yet if we think hard enough, I'm sure we can imagine a child refusing of their own accord (in closed quarters) and parents merely relaying that information.

 

Take home point: It's a complicated issue, however I feel it's impossible to weigh the cons of one situation against the pros of another situation. When eugenics and preferential breeding were big in the medical profession, there was doctor ordered mass genocide of children in nazi Germany (http://en.wikipedia.org/wiki/Child_euthanasia_in_Nazi_Germany) and contrary to how it may seem, physicians did so with the best intentions. They were familiar with current medical literature that proposed certain races and conditions made people inferior and would hinder the rest of human kind. I'm sure no one would argue a parent's right to override a medical professional's in this particular scenario because we've come a long way since then. However, who's to say in 100 years we won't come to see chemotherapy as a barbaric practice as well? Only time will tell.

----------------

3) Legal Precedent

So far pretty much everyone has criticized the judge and legal system. However the problem is that, given we are a largely non-lawyer population, we don't have an accurate grasp of the intricacies of Canadian law. If a physician prescribed a certain treatment for a patient and missed something that unfortunately leads to the patient's death, we, as people who can associate with that body of knowledge, begin to ask questions. Why did the physician miss it? What treatment did they actually prescribe? Was that treatment harmful? Was it a reasonable mistake? Was the physician off their rocker? I'm sure you can imagine a perfectly reasonable explanation that is accentuated by flaws in our medical system/body of knowledge, as well as a situation that is 100% the physician's fault.

Why then do we assume the legal system failed without further exploring the details of the case, or asking similar questions? I'd be interested in hearing what a lawyer has to say on the matter, what insights they may have, or explanations regarding why this particular ruling occurred.

I'm by no means a legal expert, but the one reasonable explanation I can propose is the concept of legal precedent - every case becomes a legal foundation for future cases. The judge may not have been willing to concede the rights of religion as a whole to the rights of medicine, which may or may not have been possible given such a ruling.

In other words, what many of us aren't seeing is that a judge's job isn't easy - they have to strive to appease the current clients in an appropriate and just way, while also keeping in mind what future implications will come from their ruling. That's very difficult to do, and if this was an appropriate ruling for that reason that's great, but also if it's a genuine mistake then that should be considered as well. Think of it as making a mistake during the most complex brain surgery you can imagine - indeed, these "constitutional right #1 vs. constitutional right #2" cases are the most sensitive, and groundbreaking cases largely akin to the most complex medical procedures.

--------------------
4) The right to life:

 

Just wanted to end off with this interesting quote from Birdy:

 

(Birdy's Blog Post)


My heart absolutely breaks for these families because to have a very sick child is a very terrible thing. But to have a dead child will be far, far worse.

This also, is not up to you, or I to decide. In my opinion, it's not unheard of for someone to want to end intense suffering (in fact, I've even seen these very same people posting adamantly in the "right to die" thread), for them or their children. Once again, we don't know the patient, her condition, the parents, physicians or anyone involved. It's far too easy to point the finger here!

*finishes tossing his 2 nickels into the proverbial well of judgement*

 

----------------

 

EDIT: because this was such a huge error, in case anyone saw it, I'd like to formally say I removed the word "euthanasia" as that's not what I intended to write at all.

Edited by MathToMed

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Bad argument. Medical treatment for ALL is highly curative, whereas the natural 'treatment' they're seeking is quackery (have you checked out the website of the clinic they're planning on going to?)

 

I think my argument is a good argument. When acupuncture first appeared in Canada, lots of people were calling it quackery too. But now with more understanding and more evidence-based research, more people are accepting it as a legit treatment. Therefore, it's covered by the extended healthcare plan.

 

Look, I'm not defending the Mexican spa. It's probably a quackery. But it seems to me that some people are discrediting Mexican spa not because it's quackery, but because it doesn't belong to the established Western medicine. That to me is a very narrow-minded point of view.

 

Also, your statement of "Medical treatment for all is highly curative" is highly debatable. Palliative care is a medical treatment but is not seeking a cure at all. Also, who is that scientist who re-evaluated all the data from the early clinical trials of psychotic drugs and found that these best-selling drugs offer less-than-10% benefits to patients when compared to placebo?

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Let me just toss out another scenario: if a doctor insists on blood transfusion to a Jehovah-witness child despite the child's protest and the parents' protest (a transfuse-or-die situation), and later on the child commits suicide because of his/her religious belief, should the doctor be held responsible?

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I think my argument is a good argument. When acupuncture first appeared in Canada, lots of people were calling it quackery too. But now with more understanding and more evidence-based research, more people are accepting it as a legit treatment. Therefore, it's covered by the extended healthcare plan.

 

Look, I'm not defending the Mexican spa. It's probably a quackery. But it seems to me that some people are discrediting Mexican spa not because it's quackery, but because it doesn't belong to the established Western medicine. That to me is a very narrow-minded point of view.

 

Also, your statement of "Medical treatment for all is highly curative" is highly debatable. Palliative care is a medical treatment but is not seeking a cure at all. Also, who is that scientist who re-evaluated all the data from the early clinical trials of psychotic drugs and found that these best-selling drugs offer less-than-10% benefits to patients when compared to placebo?

In this case, the doctors have said that there's a 90% cure rate with chemotherapy. However, at the present time, there's no convincing evidence that the 'natural' treatment that they're seeking can do the same. While it may eventually (i.e. 5-10 years from now) prove to hold some clinical value based on future research, we have to make the best decision possible with the information available to us, now. Until there's adequate evidence to support the alternative treatment option, it's justified for people to not believe in it. It's not reasonable to pin the hopes of saving a girl's life based on the assumption that the 'natural' treatment option 'may' turn out to be legitimate, when it is clearly well established that the treatment option proposed by the doctor's has been shown to be effective. 

 

Now, whether the mother should be allowed to choose the alternative option for her child is another argument. I'm not saying that chemotherapy is the way to go about it (I agree with most of what MathToMed posted about chemo). However, I do feel that discrediting the alternative option is justified.  

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In this case, the doctors have said that there's a 90% cure rate with chemotherapy. However, at the present time, there's no convincing evidence that the 'natural' treatment that they're seeking can do the same. While it may eventually (i.e. 5-10 years from now) prove to hold some clinical value based on future research, we have to make the best decision possible with the information available to us, now. Until there's adequate evidence to support the alternative treatment option, it's justified for people to not believe in it. It's not reasonable to pin the hopes of saving a girl's life based on the assumption that the 'natural' treatment option 'may' turn out to be legitimate, when it is clearly well established that the treatment option proposed by the doctor's has been shown to be effective. 

 

Now, whether the mother should be allowed to choose the alternative option for her child is another argument. I'm not saying that chemotherapy is the way to go about it (I agree with most of what MathToMed posted about chemo). However, I do feel that discrediting the alternative option is justified.  

You are discussing a different topic which is: given a proven method (by the way A doctor's claim is not always correct, but let's just roll with that) and a unproven method, which one whould you choose? And I agree with you 100% on this topic. But I was questioning a conservative attitude toward homeo within the medical profession and was presenting evidences to show that some homeo may not be as useless as how people used to paint it to be.

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My final comment: it seems to me that many people are missing some details regarding this incident. The mother initially DID turn to Western medicine because she initially DID allow her child to be admitted into a Western hospital. She then DID alow her child to go through several rounds of chemo. So it is safe to say that initially the mother DID have faith in our Western medicine. However, it is after these treatment when her opinions changed. The mother claimed that these rounds of chemo did not offer any improvement on her child's condition, which ironically the Mac hospital did NOT address in their later response. Now the situation is about someone who initially had faith in something but later on abandoned such faith, as opposed to someone who doesn't believe in Western medicine in the first place. So the question we may need to ask is: what exactly happened during these treatment? how did Mac make the mother lose her faith in Western medicine after offering the mother the first-handed experience in Western medicine? Was there any mistreatment? Was there any misdiagonosis? Was there any miscommunication?

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You are discussing a different topic which is: given a proven method (by the way A doctor's claim is not always correct, but let's just roll with that) and a unproven method, which one whould you choose? And I agree with you 100% on this topic. But I was questioning a conservative attitude toward homeo within the medical profession and was presenting evidences to show that some homeo may not be as useless as how people used to paint it to be.

You really need to stop using homeopathy as an example of an underdog alternative treatment that the medial world snickers at. I don't think you know what homeopathy really is...

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Also, your statement of "Medical treatment for all is highly curative" is highly debatable. Palliative care is a medical treatment but is not seeking a cure at all. 

 

ALL = Acute Lymphocytic Leukemia, not the inclusive pronoun. :P

 

You also questioned what caused the mother to turn away from Western medicine, and there was something interesting I read in an interview with her. When the girl was in hospital the family organized some type of aboriginal healing ceremony/ritual and a nurse made a snark comment afterwards along the lines of "So, she's cured now then?" which the mother said made her feel unwelcomed and like an outsider in the hospital.

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 When the girl was in hospital the family organized some type of aboriginal healing ceremony/ritual and a nurse made a snark comment afterwards along the lines of "So, she's cured now then?" which the mother said made her feel unwelcomed and like an outsider in the hospital.

 

Not a bit surprised, and I wonder if there is more.

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ALL = Acute Lymphocytic Leukemia, not the inclusive pronoun. :P

 

You also questioned what caused the mother to turn away from Western medicine, and there was something interesting I read in an interview with her. When the girl was in hospital the family organized some type of aboriginal healing ceremony/ritual and a nurse made a snark comment afterwards along the lines of "So, she's cured now then?" which the mother said made her feel unwelcomed and like an outsider in the hospital.

 

Whoa, where did you read this, if you don't mind me asking? I have been following this case intensely (I actually think I have an unhealthy obsession- googling Makayla Sault news every day) and have not read this yet.

 

I have personally been very conflicted on this. I did not go into medicine to read law. It's confusing to me. The medicine is clear but the whole case is very distressing. Like Birdy I'm afraid to make a statement on how I feel with respect to this case but it has occupied a lot of my emotional energy.

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 which the mother said made her feel unwelcomed and like an outsider in the hospital.

 Yep, I read this too. What a sad case where cultural literacy and sensitivity might have helped avoid this whole schmozzle. 

 

Not that I agree with the mother's decision, but all HCWs need to be on board with being consultants to patients. The more people feel respected, the more likely we are to have good decision-making and outcomes.

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