Oh, yeah, I definately meant should the parents have the right to withold insulin from a child whom medical authorities say it will help.
Yes, not all cancers require chemo, and not all patients are good candidates, but here the parents just plain deny the likelyhood of a relapse. They are not contending that the chemo will be be ineffective- they flat out don’t believe the seriousness of the diagnosis.
How can a parent who does not have an accurate view of their child’s health make an informed decision?
I am quite aware of that. My father has worked as a cancer researcher at MD Anderson (the largest cancer hospital in the world) for over 30 years.
But the point isn’t whether I or you think this is a good idea. Occassionally what seem to be crackpot theories turn into medical breakthroughs. I’m sure the doctor and patients think and hope this will happen in this case.
When doctors disagree, how can the State decide which one is telling the truth? Even if they could, do we really want some beaurocracy making health decisions for us?
Well, in this case, it isn’t another round of chemo. As far as I can tell, the child has not received any medical treatment at this point, other than having the tumor removed.
So far, according to the available information, the child isn’t in any pain and is feeling fine at this point. That is a good thing. If the cancer is not brought under control though, that will obviously change.
Well, at least in this case, it doesn’t appear that any of the doctors are disagreeing about the treatment. My understanding is that, to date, the family has not been able to provide any evidence of a prognosis that contradicts what the doctors so far (five of them) have determined.
Sure they have a doctor with another opinion. The Most Honorable Quack Dr. Stanislaw Burzinski. You can always find some doctor to disagree with others.
I can’t believe there is even an issue here. Four separate physicians, including a doctor hand picked by the family, have diagnosed Ewing’s Sarcoma. The cancer his highly aggressive and almost always terminal, but it has a 70% recovery rate (as sited in this thread several times already) if it is found and treated early with an established regimen that includes chemotherapy.
I mean, I understand the slippery slope argument for forced medical care when you are talking about immunizations or treatment in non-life theatening instances, but to me there doesn’t seem to be any slope here at all.
In every other situation when “rights” are discussed, people almost always point out “your rights end where my rights begin” (to paraphrase). See most of the ETS threads discussing the banning of all public smoking. So don’t the parents rights end where the child’s begin? Are parents rights imbued with a special status that supercede an individuals?
Basically, yes they are. The parents are assumed to be speaking for the child. Legally, you’re supposed to assume that when the parents speak it’s as if their words are coming straight from the child. This makes more sense when you think of a 2 year old child. He can’t make these decisions, so the parents do.
And since the parents have to live with the consequences of the decision (i.e. take care of the child suffering from the side effects of chemo) it only makes sense to put them in charge of the decision making.
Well, yes, parental rights usually are given precedence. I don’t agree that it should always be that way, but in the case at hand, the child also doesn’t want the chemo. So, do we want the state to have the right to supercede both the individual and the individual’s guardians? If we’re concerned about the rights of an individual, we usually don’t then override that individual’s decisions again.
The problem, of course, is does the child really have enough of an understanding here. I would be very interested to see if the child understands the difference in recovery/mortality rates between getting chemo or refusing it. The childs quote that “The state is trying to kill me with poisons” seems to indicate that he doesn’t have the best grasp of the situation and is relying solely on the information/propaganda that his parents are giving him.
If all the child knows is that he feels fine and yet the state wants to poison him, he is obviously going to choose to not have therapy, not realizing that he may be setting himself up for pain and suffering far greater than the chemo would be. Children trust their parents above all others and it is going to be very hard to convince him otherwise, unless the parents approve of the treatment. That is really the only chance the kid has at this point, for his parents to admit that they are mistaken. If that were to happen, they could give him the support and positive attitude he will need to succesfully complete the chemotherapy. Unfortunately, it is pretty unlikely that this is going to occur.
Which all leads us to the idea of “objective” knowledge, and the questioning thereof, doesn’t it? Earlier you said
Hamlet said something very similar. The problem is, who has the right to make the decision that one course of action is “objectively best”? The sum of expert’s opinions? I recall a euthanasia debate I once had where a child had choked on a ballon and was on life support at the hospital. The child’s father held hospital staff at gunpoint as he pulled the plug and held his child while he died. It was the father’s determination that death was better than the life he had as a dependent on the iron lung. It was the medical community’s decision that life on the iron lung as preferable to death. The child was incapable of rendering an opinion, so who wins?
I guess this may be a hijack, but I am finding this sparked an epistemological nerve for me. How do we know what the objective facts in the case are? As with mswas’s case, we have a very tough decision here. Risk of death versus risk of disability. I’m still inclined to go with the parents decisions, although I would be ok with the court requiring the parents to study the medical facts of the case and doing other things like being present when their family dentist is asked to defend his diagnosis. Give them the opportunity to cross-examine the evidence of the state with the aid of any medical experts they care to engage. There may be room for disagreement about the treatment process going forward, but the current facts, as well as they can be determined by us poor lumps of decaying organic matter, should be understood.
With rights come responsibilities… I think we can all agree on that.
So what would those who support the parents right to refuse treatment in a situation like this think about the state filing child negligence or even manslaughter charges if/when the child is dead in 18 months?
I am about 100 yards from MD Anderson right this very moment. Our good doctor Burzinski has his practice up on I-10 about 10 miles away. I need to go back and read the news articles from last month again, but I believe the Burzinski center did not treat him, and that is why he returned home.
Agreed that you can always find a doctor who disagrees. That is because doctors are humans and they have personal biases. But most of the time (I dare say all of the time), the literature gives us a set of therapies that emerges as the best ones, given our current knowledge.
How do we eliminate personal biases? We get second opinions and form a consensus opinion. Four doctors have all answered the same. Given the staging, given the pathology, given the patient age and health status, it appears that chemo seems to be the best strategy.
We have a medical consensus. This is a life-and-death situation. The parents have demonstrated incapacity to make the decision. The child is 12, which means that he has little legal capacity to make this decision by himself. We sometimes make exceptions for mature minors, for instance a 16 or 17 year old with terminal cancer who is refusing therapy (and whose parents are trying to force therapy). This is not the case here – 12 doesn’t cut it unfortunately.
There is no conflict, there is no slippery slope here. If the parents are incapable of making decisions to save a child’s life, the state steps in and does it. This is true in diabetes, in blood transfusions during emergency care, it is true in cancer.
When I was 12, I had far different ideas about how the world works than I do now, as an adult. For instance religion – my parents raised me as an observant Jew, which held fast until I got out of the house and started doing science. I thought for myself a bunch and came to agnosticism, which makes me much happier than Judaism. I’m sure we all can tell stories of this. This child is parroting his parents’ views. The state needs to provide him the opportunity to come of age and form his own views on life. In this case, it means administering chemo.
For me, the key issue here is that it’s chemotherapy. I could see perfectly sane parents, parents who would never deny pain relief or refuse to let EMTs treat a severely injured child (or any of the other examples brought up here), still give pause before subjecting their child to chemotherapy. It can be a very brutal treatment, and I could see why a parent would want to explore every other possibility before agreeing to it. With a 70% survival rate, that would certainly tip the balance for me, but Julie is right to bring up the question of how slim a chance must a cure be before it is compulsory for a parent to agree to it? What if a child had almost no chance, but a doctor suggested chemo as a longshot? Would those parents be negligent to say no?
Just because such a “cure” is acceptable to the doctors, doesn’t mean it is necessarily acceptable to the family. Our friend’s son has a neuroblastoma. His treatment regimen has included things that I’m not sure I could have gone through as a parent. At one point, he was so radiated that they couldn’t be near him for more than a minute at a time, and everything he touched had to be put away in a trunk for three months or more. I admire their choice to fight it at all costs, but I think it would have been equally valid for them to choose to not do everything recommended.
If the state took a child away and forced that child to undergo such an invasive and difficult treatment, without access to the love and support of family, who’s the abuser?
I hope within a decade or so our weapons to fight cancer will be much more advanced, and we’ll look back on chemotherapy and be unable to believe that we ever subjected anyone to it. It will be as unthinkable as we now consider, say, battlefield amputations without anesthesia (which were also once acceptable medical practice, due to lack of alternatives).
No. I don’t see how you could. Even with chemo the child has a 30% chance of dying.
If they treat him with acupuncture or cranio-sacral therapy or happy meals, and he dies, how could one prove that he wouldn’t have died anyway, even with chemo?
p.s. edwino Then wave to my dad at Anderson, he’s in the radio-therapy department. I grew up in Houston (Bellaire High grad) and I really miss the BBQ.
Do you believe the parents should be able to file abuse charges against the state if the child is forced into chemo and dies anyway? If with rights come responsibilities, what responsibilities are we going to place on the state in this situation? How do we hold the state liable for its decisions?
Sorry, I’m being tripped up by my loose language here. It is not the task of the state to assure that parents’ decisions on behalf of their children are “objectively best” for the child. It is, however, the task of the state to assure that parents’ actions and decisions are objectively reasonable when it comes to certain fundamentally important matters, including matters of life and death.
Now who makes the decision what those fundamentally important matter are, and when a parents’ decision regarding such a matter is objectively reasonable? The state, in the first instance, by bringing a lawsuit seeking to protect the child from the actions or decisions of the parent. And ultimately, it’s a matter for the courts and juries to decide.
Will the decisions of the state, the courts, and juries always be the best decisions? Of course not. In fact, let me place myself on the record as being in favor of only the most limited state interference in how parents raise their children. But when you’re talking about abuse or–as I believe to be the case here–endangerment, I believe in swift and decisive government intervention for the sake of protecting the child from death or permanent harm. When you are talking about parents whose actions, by all indications, amount to consigning their son to death, it is better to intervene (and take the risk that the system will intervene poorly) than subject the kid to the continuing endangerment of his parents.
I understand, and I never thought that you meant the state should do anything more than prevent abuses. Just something about the thread and how people were saying it was “obvious” and a “no-brainer” just kind of made me genuflect a bit on the poor excuse for actual knowledge that we tend to base our decisions on. Every medical diagnosis is full of maybes, mights, coulds, etc. Even in cases where the behavior of a specific ailment is relatively well-known, this is an area where very little can be considered absolutely true and a confidence level of “up to 70%” doesn’t make me want to jump up and down. In fact it reminds me of car sales pitches where they say “as low as 199/month!” Which translates into roughly “someone, somewhere on this planet, could get this car for 199/month, but that someone probably isn’t you”.
I don’t know. Chemo is a BIG deal. An article I saw said the child was diagnosed and the recommendation for chemo was made about three months ago. The state first started looking to take the boy and administer chemo about a month after the diagnosis. I didn’t find a prognosis for Ewing’s Sarcoma online, but is it that fast? Can’t a family have more than a few weeks to look over the chemo literature and try to figure out if they have alternatives to putting their child through that for the next eleven months? I don’t blame the parents for wanting to hold off and I don’t have a sense of urgency that demands they accept the recommended treatment without question and start the radiation and chemo drips ASAP. The boy’s case is unusual already in that it seems to have come from soft tissue instead of originating in the long bones of the body as is normal for the disease. It sounds like they’ve already done a surgical excision of the cancerous mass they’ve found so far, which typically slows down the spread. From my experience with cancer in relatives and friends a round of Chemo is a good idea for cancers which can spread(metastasize), but it is not necessarially mandatory. Remove the tumor(done in this case), check for symptoms of spread(a test which has not been done yet as far as the articles I’ve read indicate), if there is evidence there were cancerous cells outside the tumor(any metastasizing) then chemo and radiation therapy to keep this down. In a site about the disease, I found this bit
So, is there a chance this boy could be one of the 2/3 in whose case all the cancerous cells were removed with the tumor? In which case, what good will chemo do? The main cause of this disease is genetic. Chemo won’t kill off the genetic source of future tumors, and if there isn’t evidence that the cancer has spread, then is this simply a extra safety step in case the test missed some vectors. Safety steps are reasonable when the matter is life and death, but chemo is a really serious step. As far as I can tell, the test to see if any cancerous tissue is still in the body has not been done. So, why the insistence on chemo? I don’t understand the situation as described here
I’ve known quite a few people with cancer in my life and some have had success with alternative therapies, some the cancer went into spontaneous remission. Most have had chemo of some form or another and it was abosolute hell on them and my wife’s aunt is not expected to live much longer despite the chemo. I can’t fault a family for wanting to explore alternatives and I don’t think a month is an unreasonable timeframe for them to take to do such exploration. The state knocking on their door demanding they submit their child to this procedure just a few weeks after the diagnosis seems pretty harsh to me. Maybe I’m being unreasonable, but I don’t think I’d cope well with that kind of situation either.
The parents have acknowledged a problem, they are seeking options. They don’t seem to be given the freedom to explore options because of the state’s aggressive timeframe. Can any of the Dr’s on the board weigh in with some solid reason for the sense of urgency and single-mindedness of the state? Must be chemo, must be NOW! Is this really the best thing for the situation? Why?
I certainly understand that the uncertainties of this particular form of cancer are outside my zone of competency. My comments thus far have been predicated on the assertions–which strike me as reasonably well-founded–that (a) the kid is toast if he isn’t given chemo, and (b) there is a 70% chance of survival if he is given chemo.
I’m well aware that chemotherapy is a terrible thing to subject anyone to, much less a little kid. I’m also certain that a 70% chance of recovery outweighs the terrible experience of chemotherapy, and by a considerable margin.
I’m really not arguing that this is one of those “no matter what the costs” things. If the odds were reasonable that the surgery took care of the cancer, or if the odds sucked that chemo would save the boy’s life, I’d be right there with the parents. But neither of those scenarios seems to be the case here. Instead, we seem to have a couple of parents who, for whatever reason, are condemning their child to an almost certain death when that death can probably (but not necessarily) be avoided through reasonable medical treatment. In such situations, I’m a big fan of reasonableness.