If anyone is interested, You can view footage of the press conference given by the family this morning.
When I was a child, my mother died of an arrhythmia called Prolongued QT.
I also have prolongued QT. When I was 14 I underwent a new procedure called a “Left Stellic Ganglionectomy.” where they removed a major nerve bundle from the left side of my neck.
My parents didn’t have the money for it. We stayed in the Ronald McDonald house in Rochester NY because this is where the specialist was.
My father pulled political contacts to get money for the surgery from one of the New Mexico representatives, and borrowed money that took him nearly ten years to pay off.
I did not want the surgery. I told my parents I wasn’t interested in the surgery. As a side effect of the surgery, the left side of my body is stunted compared to my right. I don’t have the same control the same level of feeling. My left eye is pupilated constantly, and my eyelid droops. I do not sweat on the left side of my body really. (It will be damp when the right is drenched). I am not as coordinated with my left side as I would be otherwise.
I am considering now, getting acupuncture to re-establish my nervous system as a whole unit.
So my parents, the doctors, a congressman, and my entire family thought it was a good idea. I did not. I still do not, and if I find a way to reverse it’s effects, I will.
Erek
mswas, thank you for sharing your story. I think it illustrates that there are no easy answers.
If I may be allowed, I have a story that may help illustrate my views here. My mother died of cancer about 10 years ago. She had been sick for quite a while but had hidden it from her family for a long time. She was pretty sure of what she had due to watching her father die of cancer. Her reason for keeping it hidden was pure fear. She was terrified of going through the same treatments, namely chemotherapy, after seeing what it did to her father. So she chose to keep quiet and suffer alone. By the time it progressed to the point that it couldn’t be hidden from us, it was too late. She collapsed and was rushed to the hospital. The cancer, which they believe started as breat cancer, had spread through her entire body and there just wasn’t anything that anyone could do. She died 3 weeks after being diagnosed at 49 years old.
As you could imagine, the question that haunts me to this day is, what if she had gotten treatment in the early stages. Surely, it couldn’t have been as bad as all the suffering she eventually went though. Cancer treatment is only effective if it is done in the early stages and aggressively. I would hate to see this child go through the same suffering that my mother did, when it might have been treatable, (If treated, 70% chance of survival), rather than ignore it as if it doesn’e exist. (untreated, 5% chance of survival). The doctors have been unanimous in their diagnosis and their treatment suggestion. And yet, the parents have convinced their son that he does not have cancer and the state wants to kill him by pumping poison into him. My heart breaks for this kid. I think his parents are guilty of neglect and, if their son dies from lack of treatment, should be prosecuted to the fullest extent of the law.
I see this as no different than any other case of child endangerment. If the parents continue to refuse to act in the objectively best interests of their child, he should be removed from their custody and care.
Right, but in those cases, we can say that the requirements are universal and standard. We can say, “The child must go to school,” and it’s pretty easy, usually, to see that the child is going to school. Every child goes to school, and has vaccinations, and is forbidden to work (not to say that there are never grey areas).
But not every child has chemotherapy. Even with a cancer, there would have to be times when chemotherapy isn’t worth it. In this case, I would say the chemo is obviously worth it, but what the heck do I know? I’m basing that opinion merely on the statements of doctors, not on my own knowledge.
And, of course, we have the added twist here that the doctors don’t know that the chemo will be effective on this particular child since he doesn’t appear to believe it will help. Say that 70% survival rate is more like a 50% rate if the kid doesn’t believe. Would it still be okay to take him from parents who don’t believe he should be subjected to chemo, and against his own wishes?
Would you set a cut-off point, where you felt the possibility of a cure wasn’t worth the intervention? If I were faced with the surety that my loved one would die without intervention but had even a slim hope with chemo, I’d grab that slim hope. But some people really do have different values.
Agreed. The problem for me is deciding precisely when one of those “some cases” happens. I’m biased against religion, so if their argument had been a religious one, I know that I would be ridiculing them even more now. I recognize that bias, and it makes me nervous. I’ll admit to it. Who might end up in power to make such decisions who wouldn’t admit to their biases?
Thank you for apologizing, and please accept my apology as well. I was unjustifiably cranky.
Emergencies kind of have different rules, simply because there is no time to argue or think. I would support the paramedics doing procedures and taking the child to the hospital.
And here my biases spring into action. Such parents are morons and should be poked with sharpened sticks. Repeatedly. And then I don’t know.
It should to them, too. But if they’ve convinced the child, taking him away will probably reinforce his negative view. He needs to be convinced rather than kidnapped.
It is good, of course, at least in theory. The problem is in applying it, defining “well-being” or “impairment” or “proper” or “necessary” or “adequate” or… well, you see where this is going.
I know. Such difficulties shouldn’t mean we do nothing. But sometimes doing nothing causes less harm, on the whole, than doing something.
Julie
more of a general response to the theme of the thread, minty just summed it up nicely.
As a once upon a time EMT people who do this (assuming the kid does have cancer) really sicken me.
OTOH, they have taken this kid to several doctors, its not like they are refusing to have the kid examined or tested, they are refusing a specific treatment method and the precedents of being able to force medical treatment on someone are scary. Only a handful of situation exist when EMS personell can push treatment of someone who for example is disoriented, unconscious, or otherwise questionably able to assert their own desires for care. Such is the world of “implied consent”. If you could prove that the parents or child were incapable of understanding the circumstances or maybe that they were refusing treatment because they wanted their child to die, I would say you had a case. A religiously motivated decision to withold medical care carries no more or less weight than any other personal choice with regards to medical care. They are refusing to acknowledge or flat out denying that anything is wrong with their son. Forcing something on a 12 yo boy who doesn’t want to play along is not going to be a treat. What are you going to do, strap him down and sedate him, to perform a test or treatment both he and his parents do not want.
To Minty IIRC you are an attorney. How would you or other legal dopers proceed if you were placed in the position of defending the rights of the family to refuse treatment.
When I was 14, my best friend died of Ewing’s sarcoma. I’ll never forget as long as I live her screams of agony. My fervent hope is that the “alternative treatment” the parents give this boy will include pain control. I shudder to think of the poor kid shrieking in pain and his mother responding with a cup of herbal tea instead of morphine.
** mswas, ** I can’t tell from your post whether your doctor and father believed your condition was life-threatening unless this procedure was done. Did they?
IME you back the heck off, and document like crazy. Ask mom to sign an AMA (against medical advice release). If she will not, I would imagine a few circumstances would dictate as to how I would have proceeded. Is she expressing her desire firmly and clearly, does mom appear to be behaving appropriately or is she just pushing medical personell away to hold what she considers to be her dead and unsavable child. IF she stands her ground and or tries to fight to keep you away, let the kid die. It sucks, but she has the right to refuse treatment. Bet your butt I would want a field supervisor and or police officer around for another corroborating witness that she was refusing treatment. Cops are usually pretty good at drawing off freaked out family members to let the medics work, probably would try to get her to let the medics work while she explains her reasoning and or the officer makes an effort to determine if mom is thinking cleary in the matter. Sometimes that couple minutes is all you need to jumpstart junior.
Put metal points and fins on the sharpened sticks and launch them from crossbows at the parent in question.
My quick opinion is this : The parents are psychotic and this is abuse. And I don’t use psychotic here in the the verncaular sense but in the truly clinical sense. I think they are delusional to the point where they don’t want to believe this is the right diagnosis. I, personally, wonder what the child wants done. He is 12 years old, after all, and is bound to have an opinion. I find it hard to believe that a 12 year old who is told they have a choice between likely death and a 70% chance of survival is going to opt for not receiving chemotherapy. Legally this argument may not hold up due to the laws in this country, but morally it would certainly hold some weight. This is a decision a 12 year old ought to have some input in, if you could somehow separate his opinions from the bias his parents likely impart upon him.
It’s just not that simple.
They might have 4 doctors recommending one kind of treatment (chemo).
It sounds like they have another doctor recommending another kind of treatment (unspecified ‘alternative’).
How can the State decide which treatment is superior? People use alternative treament everyday.
I’ve hear dozens of feel-good stories which go like this. “I had 5 doctors say I needed ooen-heart surgery. But I just know that wasn’t right. Then I found Dr. Lovegood. He told me all I needed was more vitamin C in my diet. I took one million miligrams of vitamin C a day, and now my heart disease is cured!”
Yes, the alternative stuff might be bogus. Very good chance of that. But there is also a chance that it’s the begining of a breakthrough treatment that will take the medical community by storm in a few years.
How can we let the State make decisions about which kind of medical care we should have?
A few things. First, the OP says “terminal cancer.” If the cancer is truly terminal – inoperable, multiple mets, truly unattainable rates of survival, then I say the parents are quite OK to manage the pain and let the child die in peace without the suffering of chemo.
I’m going to take the word “terminal” as a misprint, as it seems to disagree with what the doctors and the state is saying. And what all of you people in this thread have been saying.
In Texas, we have a law which is fairly good at addressing these issues. It first arose with Jehovah’s Witnesses, who refuse blood transfusions and blood products. If an underage Jehovah’s Witness comes into the ER, he is made a ward of the state for the duration of the treatment, then custody is returned to the parents. The child is never taken away from the parents, but the parents aren’t put into control of these medical decisions.
I mean, let’s face it. We, for the most part, are talking about the science of keeping someone alive. Doctors are pretty well trained in this, and are the informed parties in these decisions. Of course, if you are of legal age, nobody has the right to tell you what to do with your body (within the law), but for children it is another matter entirely.
The last thing I want to address is that IIRC the doctor that the parents brought the kid to when they fled a few weeks ago is Stanislaw Burzinski, whose practice is a few miles up the road. He is a noted quack, who pushes these chemicals he calls “antineoplastons.” These have next to no basis in science – his work can never be replicated by other scientists. If the parents are resorting to quackery before they take the advice of many experts in the medical profession, this is just another indication that they are not competent to make this decision and the child should be treated as a ward of the state.
Yeah, I support people whole-hog who want to load themselves with echinacea and get moxibustion, acupressure, and meditate in order to cure their own cancer. It is a personal decision. For a child, though, decisions reflecting the personal views of the parents need to be moderated when it comes to life and death issues.
autz
Unfortunately, alternative therapies very rarely lead to medical breakthroughs. Medical breakthroughs are usually brought on by scientists slogging through the work of pathway research, drug design, clinical trial design and conduction, and FDA approval.
It becomes very difficult to assess efficacy of treatment when you depend on anecdotal evidence. Disease courses take different paths if left untreated, and not all of these are bad. With treatment, we just tend to nudge it to the good side. In order to really investigate a treatment, we depend on controlled trials. Better yet blinded controlled trials. Better yet double blinded randomzied controlled trials.
Chemo for Ewing’s sarcoma has been through the gamut of controlled studies. Antineoplastons have had one controlled study which showed no effect.
As I maintain, it is only in life-and-death matters where this comes into play. I wouldn’t dictate to a mother how to care for a child with a bruised elbow or a scraped knee or the common cold. But for cancer and other baddies, there needs to be some refereeing which guarantee’s the parents personal views will not kill the child.
Consider for a moment the implications of the state being able to decide what “best” is for a child. That isn’t a slippery slope, it’s a precipitious drop.
I think the parents are in extreme denial of reality, substituting wishful thinking over facing the hard truths.
Nevertheless, I would not want to try to take this kid into custody and have the state administer chemo. Chemo is a hellish regimen, and to subject a resistant 12 year-old to it without a committed family there to help out makes it practically impossible to do.
The state does decide what is best for a child, to a limited extent. The state has the right to take a child away from parents who neglect or abuse it. There are many debates on abuses in the system, but most agree that the ability of the state to step in is a necessary precaution. The question now is how far should the definition of neglect be stretched.
Now that’s an interesting question. If this child does not have to get chemotherapy on the grounds that not every child does, is it abuse to withold insulin from a diabetic child? Glasses from a child with very poor eyesight? Routine dental care?
Not every child in America is vaccinated. Should parents be forced to allow vaccinations?
I agree here, but I wonder what would have happened had the parents not been an articulate, intact middle-class family. What would have been done if this child was the son of an uneducated, poor single parent without much of a support system or media savvy?
I’m not sure I understand you. The State has been determining what is in the “best” interests of a child for a long, long time. Child labor laws, child custody disputes, child protective services, mandatory education, age of consent, etc. are all examples of the State being able to decide what is best for a child. And I haven’t yet seen a huge “drop” in whatever you are trying to get at. A slippery slope argument may work if this was a new and idea, but it’s been around awhile, and I, for one, haven’t seen the “drop” your describing. Or would you rther dismantle DCFS and all the other bodies that determine what is in the “best” interest of a child? I find that prospect appalling.
A modicum of paranoia against the government can be a fine thing, but let’s not use it as a justification for everything.
Is it abuse to withhold insulin from a Type I diabetic? I’d say so. My understanding of Type I diabetes is that there isn’t any potential grey area. The pancreas either makes insulin or it doesn’t. (Someone please correct me if I’m mistaken.) You would get into grey areas if you started insisting that all diabetics be given insulin, since some diabetics don’t need insulin. And that’s where I’m running into difficulties with this particular case. Not all cancers require chemo. Not all chemo will be effective. Not all patients are good candidates for chemo. We have to assume not just that it will benefit the child but that it is worth the incredible suffering of removing the child from his parents and forcing apparently unwanted medical care upon him. That is a scary proposition.
Julie
I can understand parents not wanting to put a child through another course of chemo, if chances of survival are low, and the child has already been through several unsuccessful courses.
But what freaks me out is the thought that this child will be denied proper pain relief, if he is dying.
If they came to me and requested that I represent them in resisting what I believe to be life-saving medical treatment for their minor child, I would decline the representation.
If I were appointed to represent them by a court, I would attempt to develop facts that show their decision not to pursue chemotherapy is a reasonable one. That could be because the medical evidence of cancer is inconclusive, because the cancer is terminal and will kill the child either way, because the odds of success with chemotherapy are low, or because the alternative treatment they are seeking has a reasonable probability of success. I would also argue that, as a matter of law, the parents have an absolute right to make medical decisions for their child that would be vested in him were he an adult.
I do not personally believe that any of those positions have legal or factual merit.