Parents should have right to ignore doctors, seek alternative care: bioethicists

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A decision to forcibly impose chemotherapy on an 11-year-old Hamilton boy who didn't want to go through another round of painful treatment was "heavy-handed" and "worrisome" considering how often similar conflicts arise, several bioethicists said Monday.

The boy, who cannot be named because he is now in the care of the Children's Aid Society, has been thrust into the thorny debate over the right to seek alternative therapies and ignore conventional wisdom.

He was diagnosed with acute lymphoblastic leukemia when he was seven. After enduring the tough experience of chemotherapy his cancer went into remission, but returned earlier this year.

After being told last week he needed more chemo he refused to go through the ordeal again. He took that position even though doctors said he'd have only six months to live without the therapy, while treatment would give him a 50 per cent of fighting off the cancer.

The boy's family supported his decision and was ready to try some alternative therapies at home, but doctors insisted he go through chemotherapy again. A judge ruled that the boy cannot make an informed decision and he was put into CAS care to ensure he get chemo.

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On the other hand, chemo IS painful and horrid. But on balance, I don't think it's so awful to warrant letting a child decide against it when there's a half-and-half chance of being cured by it.

Taking the child away from his family is reprehensible, though. Surely they could find a way to enforce the decision without him out of his home. That's just wrong. He's going to need his parents' love more than ever as he goes through another round of chemo.

[ 13 May 2008: Message edited by: Michelle ]

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Originally posted by jas:
I don't think anyone has any right to force anyone into treatment they don't want to do.

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Anyway, there is another recent case in which Winnipeg Medical Ethicist Arthur Schafer made a few public remarks. In that case, dated last July in Quebec, a 3-year-old boy was not compelled to proceed with chemotherapy "after his parents said they would prefer he had alternative medicine". The details are important here: the boy's condition was not viewed as life-threatening:

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Arthur Schafer, University of Manitoba, told CTV's Canada AM that the province did not intervene because the child's condition is not currently life threatening. If medical experts had told the courts it was a medical emergency their response would have been different.

According to the boy's mother, his condition has improved since he started the alternative treatment. She stressed that she would seek chemotherapy again if her child's condition got worse.

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Boy Can Have Alternative Medicine Instead Of Chemotherapy, Quebec

I couldn't leave the following alone without comment ...

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Catchfire: I'm also suspicious of 'bioethicists' when invoked generally. Are they doctors? Do they have any medical background? What makes them think they are justified in commenting on this specific case?

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They have special training in thinking about such issues. Arthur Schafer is a fine example of a Canadian bio-ethicist. Check out his piece on panhandling (panhandling.pdf), on Biomedical conflicts of interest (Biomedical_conflicts_of_interest.pdf), on the good death (good death.pdf), on assisted suicide, and so on.

I personally believe the boy should be able to decide his own fate re: medical options. I think it is horrible that they have pulled him away from his family. On the other hand, I can see that this boy has a 50 percent chance of chemo working. That's a rather good chance and I do not think an 11 year old has the mental capacity to decide this.

Let me pose something to you then, along the same lines as you re: women's right to choose.

Since you are of the opinion that the boy has a right to decide his fate (BTW, anorexics don't for the most part. But that is another story) and that he is old enough and mature enough to understand the implications of no treatment, can I also assume that you think 11 year olds are old enough to stand trial as adults when they commit crimes?

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Originally posted by Stargazer:
There is a world of difference between an 11 year refusing treatment that could save his life and women who chose to have abortions.

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Originally posted by jas:
Yeah, and that's totally the same thing as making a decision about your own body

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I don't think it's a convincing or valid position to be pro-choice in some contexts, and anti-choice in others.

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What's the world of difference?

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[ 13 May 2008: Message edited by: M. Spector ]

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Originally posted by M. Spector:
Aren't you the one saying we shouldn't make distinctions based on "context" when it comes to "choice"?

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Originally posted by N. Beltov:They have special training in thinking about such issues. Arthur Schafer is a fine example of a Canadian bio-ethicist. Check out his piece on panhandling (panhandling.pdf), on Biomedical conflicts of interest (Biomedical_conflicts_of_interest.pdf), on the good death (good death.pdf), on assisted suicide, and so on.

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Originally posted by jas:
I am talking about the right to make decisions about one's own life and body, not about the right to choose political representation.

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Originally posted by jas:
What happened to a woman's right to make her own decisions about her own body? Does this right become null and void if it's a child making his or her own decision? Explain that to me please.

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Originally posted by jas:
Well, I think that some Babblers need to perhaps contemplate their pro-choice stance in the context of the broader human spectrum. I don't think it's a convincing or valid position to be pro-choice in some contexts, and anti-choice in others.

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Women aren't children. Women aren't children. Women aren't children. Women aren't children.

If it was a woman who had the choice of whether to go through with chemo or not, she could choose not to, and the state would not interfere.

In this case, it is a child. Not a woman.

Women aren't children. It's not the same.

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Originally posted by Jacob Two-Two:
The question is does the state have the right to overrule them. I say absolutely not.

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Because if it's the latter, I strongly disagree.

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Originally posted by Jacob Two-Two:
All this is besides the point. It isn't the child's decision. It's the parent's decision and they made the decision to support what their child wanted. The question is does the state have the right to overrule them. I say absolutely not. The burden of evidence here has to be on the state and it must be a heavy burden indeed. They don't even come close to meeting it.

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Originally posted by Michelle:
Are you saying that chemotherapy is equivalent to molesting children?

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I'm saying that a child of a certain age has a right to make a decision about his or her own body and what medical interventions he or she is comfortable with. A child has a right to make good, or bad, decisions ETA: about his or her own life and body. And I'm certainly glad the parents support him in this.

[ 13 May 2008: Message edited by: jas ]

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Originally posted by jas:
I'm saying that a child of a certain age has a right to make a decision about his or her own body and what medical interventions he or she is comfortable with.

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And you compared that with a child having the right to decide not to be molested. You're claiming that a child of a certain age has a right to make a decision about medical care and you compare that to a child's right to say no to being molested.

So, does this mean that only children of a certain age have the right to say no to being molested? Or was that just a really bad analogy?

Does a six year-old have the right to decide for himself against going to the dentist? No? He doesn't? Well, does that mean he also doesn't have the right to say no to being molested?

It's exactly the same thing, right? A six year-old not wanting to go to the dentist and a six year-old not wanting to be molested are the same thing, right?

[ 13 May 2008: Message edited by: Michelle ]

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Do you mean "in this case" or are you speaking generally?

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I mean in this case. Obviously there are cases where intervention is necessary, but what should be burden of proof be? The consequences of allowing the state to overrule parent's decisions for their children without just cause would be disastrous both on the personal level and for society at large. So what should constitute just cause?

Chemotherapy is horrific. Probably worth it if it can save a life or extend it significantly (in terms of a life that is not just torture). Outcomes are better now than a generation ago, but it depends on the cancer. (I'm also thinking of what friends with AIDS had to go through).

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Originally posted by Michelle:

Does a six year-old have the right to decide for himself against going to the dentist? No? He doesn't?

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He doesn't? If a kid doesn't want to go to the dentist and his parents support that decision, will there be any consequences? This is getting pretty surreal.

Children are not the private property of their parents, to do with as they wish without consequences.

We have something called child welfare laws.

If parents persist in making bad decisions about the welfare of a child, the latter may be declared a child in need of protection, and the state steps in, usually in the form of its delegated Children's Aid Society, and subject to the direction of the courts.

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Originally posted by wage zombie:

This isn't about the child's right to decide, it's about the parents right to decide for their child. Who should make the decision here, the parents or the authorities?

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Well, I think the bio-ethicists are suggesting, as am I, that it is about the child having some say in whether or not or what kind of treatment to undergo, especially, as the article points out, already having had experience with that treatment.

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Originally posted by lagatta:
Michelle, this isn't a six-year-old, he is eleven. Almost an adolescent.

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That's not the point I was making. It was claimed by jas that a child saying no to medical treatment is the same thing as a child saying no to being sexually molested.

Which is absolute and utter horseshit, and I was demonstrating why. Because a child of ANY age has a right to say no to being sexually molested. But a child of any age does not have a right to say no to medical treatment (like going to the dentist, going to the doctor, getting vaccinated, whatever). Because medical treatment is NOT analogous to being sexually molested. The suggestion is abhorrent and offensive.

Jas said that a child "of a certain age" has the right to say no to medical treatment. Then she compared that to the right to say no to being sexually molested. So what I'm asking her is, if those two things are comparable, then does that mean a child of six years old, who I think most people can agree do not have the right to say no to basic medical treatment (like going to the dentist, going to the doctor, etc.), also not have the right to say no to being sexually molested?

Or, if we want to continue this analogy and say that parents have the absolute right to decide for their children about medical treatment for children under a certain age, then does that mean that parents have the absolute right to decide whether or not their child will be sexually molested too?

My point is, it's a ridiculous analogy. And offensive.

[ 14 May 2008: Message edited by: Michelle ]

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Originally posted by wage zombie:
He doesn't? If a kid doesn't want to go to the dentist and his parents support that decision, will there be any consequences? This is getting pretty surreal.

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Okay, follow along here, folks. I mentioned the example of the six year old not to be an analogy to the 11 year-old refusing treatment, but in discussion of the side issue that jas raised, about whether medical treatment is the same thing as sexual molestation.

The only reason I brought up the six year-old being forced against his will to go to the dentist is because I was comparing it to a six year-old being forced against his will to being sexually molested.

The point is, a six year-old CAN be legally forced against his will (by his parents) to go to the dentist. A six year-old CANNOT be legally forced against his will BY ANYONE to be sexually molested.

As medical advances allow us to extend life, it often seems that the extension of life has become some sort of prime directive. If life can be extended then life must be extended. We allow indivduals who are deemed compis mentis to choose to disregard this "imperative." The issue is more complex when we are dealing with minors. Although parents usually make decisions for minors, parents are prohibited by the state from making decisions that harm children. If the state accepts that the prolongation of life is an imperative, it will step into to prevent parents from declining to take steps to prolong their child's life.

An interesting issue is the behaviour of doctors in this situation. Doctors normally recommend treatment that can be rejected by adult patients. Doctors do not go to the courts to force an adult patient to undergo treatment. In this case doctors are petitioning the state to require treatment of a child against the parents' wishes and as reported against the child's wishes. Are the doctors operating in the interests of the state in these cases when they are seeking to enforce what they consider the best treatment options?

And I don't necessarily think that doctors always know best when it comes to decisions that involve not only saving life but quality of the life that's being saved. In this case, the age of the child, the painfulness of the treatments, and the iffy prognosis make this particular case not very cut-and-dried.

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May 14, 2008 04:30 AM
Parents agree to accept court-ordered treatment

The boy, who cannot be named because he is in the care of the Children's Aid Society, could finish his first round of chemotherapy this week and be home by Saturday or Sunday.

Before yesterday's hearing, the father said his son's spirit had been broken and his family was worried he'd get even weaker if he doesn't regain the will to fight his leukemia.

The man said his son is despondent, run down and wants to go home.

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The father lost custody to the Children's Aid Society after trying to fight for his son's wishes. But the boy has now given up fighting, his father said. He likened his son to a tortured prisoner willing to say anything to be released.

"All he ever says is, 'I just want to go home.' Now he's agreeing to everything and anything as long as you let him go to be free," he said.

The boy is surrounded in his hospital room by security guards and Children's Aid and youth-protection workers, the father said.

"He's a little prisoner. He can't leave his room or anything ...

"We told him, 'Don't worry buddy, please try to be healthy, relax, relax, relax, relax,' and he even said to me, 'I don't care. They can even kill me with their chemo and stuff I don't care, as long as I can come home and be home with you and mommy.' "

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(from the original article in the first post) Although it's a complicating factor that the boy has fetal alcohol syndrome and takes special education classes, Leier* said the boy is still capable of understanding what more chemotherapy would do to him.

"He understands what it feels like to have chemo, he understands what it is to go through that and have all the ill-health effects and it's very difficult to argue that anymore intellectual capacity would enhance his judgment," he said.

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Leier raises the question about the role of the will in recovery; at what point does the unwillingness of the patient to go through a forced treatment regimen undermine that treatment?

and in this:

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Originally posted by Michelle:
But I think the principle of children being allowed to refuse treatment and the parents being allowed to allow them to do so is one that should not be automatically accepted. There are always going to be borderline cases like this one. But in principle, parents should not have the absolute right to refuse medical intervention on their child's behalf.

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I can agree with you almost completely.

I'm pretty sure you understand that I'm not saying that medical treatment is the same as sexual molestation. I'm pretty sure you understood that from my first post.

From a child's perspective however, both of these can be seen as invasive, as breaking an important boundary that we teach our children to establish for themselves. In the former, the intention is good, but the results may not be. So, you have a treatment that is forced on a child, hypothetically, that the child didn't want in the second place (in this case, having already gone through it) and that may not produce the desired results in the end. In this case, you have the parents also saying, yes, we also don't want our child to go through that again. We support his decision.

Otherwise, my son would never brush his teeth or visit a dentist again.

Invasive and horrendous chemical treatment with dubious life-saving results, YES.

However, these types of medical interventions really need to be discussed whether or not it is refusal, or overly extended couses of treatment that are not humane.

When I exclude all of jas's bad analogies, from my deliberations, I find that I am basically on side with believing children should have a choice to, or not to, continue with inhumane medical treatment that may, or may not, make them better.

I can fully appreciate the child's reaction to chemo therapy. He's experienced it and it was wretched. But is he fully aware of what buying a few months versus a few years of life really means?

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Originally posted by angrymonkey:
I'm starting to think that all this bashing of science in the science forum is not totally unlike all the ignorant men that used to post in the feminism forum.

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Originally posted by jas:
Invasive and horrendous chemical treatment with dubious life-saving results, YES.

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Originally posted by laine lowe:
This certainly is a complex issue. One of the problems I have is that children are often influenced by wanting to please their parents. Did the parents seek out alternative therapies and express a predisposition to go that route?

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Originally posted by angrymonkey:
I'm starting to think that all this bashing of science in the science forum is not totally unlike all the ignorant men that used to post in the feminism forum. Sorry to go off topic but the derision and suspision of science and medical practitioners I come across here now and again doesn't seem very logical to me.

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I wonder how many of the people who think 11-year-olds can give informed consent or refusal to their own medical treatment are among those who believe that 14 year olds are too young to consent to sex?+

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These posts of yours, which seem to me to be condoning adult sex with 14 tear olds, are getting rather creepy.

Just what is it with you and the sexuality of teens?

OT - I know a shit load of kids at 14 (me included) who were preyed upon by older men. In their 20's and up, and we sure as fuck were not mature enough to know what we were doing. These men are ADULTS and they preyed upon our youth and immaturity because contarary to what you may believe, 14 year old kids are not mature enough to be with adults sexually.

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Originally posted by laine lowe:
This certainly is a complex issue. One of the problems I have is that children are often influenced by wanting to please their parents. Did the parents seek out alternative therapies and express a predisposition to go that route?

I can fully appreciate the child's reaction to chemo therapy. He's experienced it and it was wretched. But is he fully aware of what buying a few months versus a few years of life really means?

This case is somewhat reminiscent of that Alberta boy who had a bone sarcoma on his leg and didn't want the traditional surgical approach of amputation. His parents were all for some alternative therapy that didn't require such a life altering treatment.

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There was a case like this in Saskatchewan. The boy didn't have the amputation, and died. At about the same time, a relative of mine had the same kind of cancer and had her leg amputated. Years later, she is cancer-free and happy to be alive.

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Originally posted by Stargazer:
These posts of yours, which seem to me to be condoning adult sex with 14 tear olds, are getting rather creepy.

Just what is it with you and the sexuality of teens?

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Grab a clue.

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Originally posted by RosaL:

There was a case like this in Saskatchewan. The boy didn't have the amputation, and died. At about the same time, a relative of mine had the same kind of cancer and had her leg amputated. Years later, she is cancer-free and happy to be alive.

I don't find this issue complex at all.

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Originally posted by jas:
By the way, I do admit to using the term anti-choice in an overly and deliberately provocative way, and I can see that it's hard to use that term generically, given its history.

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Edited cuz I hit the post button too soon.

[ 14 May 2008: Message edited by: Polly Brandybuck ]

My granddaughter, at age 11, would have more than enough understanding and mental capacity to make such a personal choice that confronts this boy and his family. Though that state of being is not constant for all children that age.

But I have sat by and watched someone very close to me suffer through the side effects of chemotherapy and it was truly terrible. The fatigue, depression, pain, nausea, hair loss, numbness...she used to joke that battling cancer was a cakewalk compared to battling chemo.

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Originally posted by Polly Brandybuck:
And in the meantime the authorities take him away from his parents? So he can do the chemo that he doesn't want without the support of his parents - then what?

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Originally posted by Michelle:
I don't agree with taking kids away from their parents during traumatic times like this, but if it was the only way to get the parents to bring him for treatment, then I think the one or two days in CAS custody was probably worth it.

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[ 14 May 2008: Message edited by: jas ]

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Originally posted by jas:

That's super, RosaL. I'm sure it's also the same for folks who stopped or decided against medical intervention for cancer, and also survived, happily. Those success stories are on both sides of the issue.

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Unfortunately, I don't think there are nearly as many on one side as on the other.

I was irked by the rank stupidity in the Saskatchewan case and the needless loss of life (especially since my mother was dying of cancer at the time - cancer that was beyond treatment).

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Originally posted by RosaL:
needless loss of life

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I'm not familiar with that particular case, but I do question the assumption in that phrase. That life is always preferable to death. Why?

I accept that few people want to die (myself included), but in some cases, we might prefer to describe certain medical interventions as a needless avoidance of death. Or perhaps, needless assumption, and therefore avoidance, of death.

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Originally posted by M. Spector:
Guess what?

Children are not the private property of their parents, to do with as they wish without consequences.

We have something called child welfare laws.

If parents persist in making bad decisions about the welfare of a child, the latter may be declared a child in need of protection, and the state steps in, usually in the form of its delegated Children's Aid Society, and subject to the direction of the courts.

You have a problem with that?

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The Daily Show on April 29th on the topic of the failure of abstinence only education.

Jon Stewart “But I am still not convinced. Give me one solid reason why we should not switch over to a more scientific approach?”

Clip of Rep John Duncan ( R ) Tennessee – “It seems um rather elitist to me for ah people who have degrees in this field to feel that they – because they have studied it – know better than the parents.”

Jon Steward “And I’m tired of these elitist airline pilots with their locked doors and ability to fly planes….. I think I know how to fly my own children through the air.”

Clip of Sen. Sam Brownback ( R ) Kansas – “The current culture teaches against what we try to teach in the Brownback family.”

Jon Stewart – “Yes in the Brownback family we teach that boys have a “God stick” and girls have a “shame cave” and then we never speak of it again.”

[ 14 May 2008: Message edited by: Trevormkidd ]

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Originally posted by M. Spector:
...the courts have always been able to step in and overrule the parents in the best interests of the child.

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It's big business here, and if you can't pay it, you can't have it. Psychologists and social workers - and even "counsellors" with no credentials - charge $250 per hour and up to treat children who are traumatized in divorce and custody and access cases. If parents can't afford it? Oh well, tough shit for your kid.

My next question is - will this father be charged with child abuse? He certainly should be!

[ 16 May 2008: Message edited by: Michelle ]

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By the age of 14, a Winnipeg girl known as A.C. felt that she had the right to prevent doctors from running roughshod over her religious beliefs and forcing a blood transfusion on her.

“I will not violate Jehovah God's command to abstain from blood,” she said at the time. “I have dedicated my life to Him. Turning my back on God, who made my life possible, is not a compromise I am willing to make.”

Her plea fell on deaf ears. A.C. was forcibly given a transfusion to replace blood she had lost through Crohn's disease – on Easter Sunday of 2006, no less.

The medical contretemps reaches the Supreme Court of Canada on Tuesday obliging the court to delve into the issue of when a mature minor can refuse medical treatment based on religious views.

The case of A.C. v. Director of Child and Family Services focuses specifically on older minors who are forced to accept treatment, even though they have the mental capacity to make treatment decisions.

On the day the drama began, A.C. had admitted herself to a Winnipeg hospital to receive treatment for Crohn's, a chronic inflammation of the gastrointestinal tract that can cause bleeding from the bowel. Doctors quickly obtained a treatment order from a judge.

In a brief submitted to the Supreme Court, her lawyers – Allan Ludkiewicz and David C. Day – quote the child describing the experience as “painful spiritually, mentally, emotionally and even physically. Having someone else's blood pumped through my veins, stressing my body, caused me to reflect on how my rights over my body could be taken away by a judge who did not care enough to talk with me. … That day, my tears flowed non-stop.”

The legal brief argues that a provision in the Manitoba Child and Family Services Act that authorizes this sort of involuntary medical intervention is out of step with generations of judge-made law and with Charter of Rights guarantees to equality, freedom of religion and life, liberty and security of the person.

In an opposing brief, Manitoba Crown counsel Deborah Carlson and Nathaniel Carnegie maintain that any Charter violation that might exist would be more than justified by the importance of protecting children.

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Originally posted by M. Spector:
...the courts have always been able to step in and overrule the parents in the best interests of the child.

Case in point.

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Not quite sure what this story has to do with the thread. Nor what 'treatment' the boy was being 'denied' in Canada. I guess, rather, just a sensationalistic example from M Spector to perseverate on his position that science, including medicine, and law are pure, disinterested, value-free entities, and therefore, the final authority in all cases on 'best' interests.

[ 20 May 2008: Message edited by: jas ]