Regular readers here know that I really hate to see stories like the one I’m about to discuss, specifically that of 13-year-old Daniel Hauser, a boy with Hodgkin’s lymphoma who is refusing chemotherapy based on religion and his preference for “alternative” therapy, whose parents are also supporting his decision.
Since I’m a bit behind on this story, its having percolated through the blogosphere for the last three or four days, let me start with a bit of context. If there is one theme that I’ve emphasized time and time again here, it’s science- and evidence-based medicine. That means treatments that have been scientifically shown to be efficacious and to have an acceptable risk-benefit ratio. If there’s one other point that I’ve made time and time again, it’s that competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether. That is not to say that quacks have any sort of “right” to provide them with quack treatments, especially since providing such treatments inherently involves making claims for them that are not supportable by science, but, if a competent adult wants to refuse treatment and is aware of the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease, but it’s his call.
The same is not true for children, and Daniel Hauser is a child, and he is choosing to let himself die, although that’s not how he would characterize his choice:
Daniel Hauser has what doctors consider one of the most curable types of cancer, Hodgkin’s lymphoma.
But the 13-year-old from Sleepy Eye, Minn. and his parents don’t want him to have chemotherapy and radiation, the standard treatments. For the past three months, they have ignored the advice of his cancer specialists and turned to natural therapies, such as herbs and vitamins, instead.
Now they are going to court to defend their decision.
He and his parents are justifying this decision by–what else?–religion:
Daniel, one of eight children, has asserted that treatment would violate his religious beliefs. The teenager filed an affidavit saying that he is a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago (though they don’t claim to be Indians).
“I am opposed to chemotherapy because it is self-destructive and poisonous,” he told the court. “I want to live a virtuous life, in the eyes of my creator, not just a long life.” He also filed a “spiritual path declaration” that said: “I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example.”
Straight to the grave, I’m afraid.
As mentioned before, Daniel has Hodgkin’s disease, which is a form of lymphoma. In its early stages, it is highly treatable with chemotherapy and radiation. Whenever I see a case like his, I always try to figure out exactly what stage his tumor is at, so that I can get a better estimate of what his true chances of survival with treatment are. I found more information in a more detailed account of the beginning of the court hearing, which included an account of the testimony thus far. Specifically, Daniel has nodular sclerosing Hodgkin’s disease and a mass in the middle of his chest. He was diagnosed earlier this year after he suffered symptoms of fatigue and weight loss, the latter of which is important, because such symptoms are known as “B” symptoms and portend a poorer prognosis. In any case, according to this account, Daniel has stage 2B Hodgkin’s disease (more than one lymph node basin involved but on the same side of the diaphragm, plus B symptoms), which explains why chemotherapy is being recommended. Patients with stage 1 Hodgkin’s disease can be treated effectively with radiation therapy alone, but stages 2 and above generally need multimodality chemotherapy, usually a regimen abbreviated ABVD, which consists of Adriamycin, Bleomycin, Vincristine, and Dacarbazine. With such a regimen, a boy like Daniel could expect a chance of long term survival of around 85-90%, possibly higher.
Without therapy, Hodgkin’s disease is a death sentence.
Now, no one’s claiming that chemotherapy is a walk in the park, and it wasn’t for Daniel, either. He did one round, and this was result:
But after one round of chemotherapy, Daniel became so sick that his parents refused to send him for a second treatment. They switched him to an alternative regime of complementary medicine, including dietary changes and “ionized water,” Johnson said.
In testimony, Daniel’s mother reported:
Olson asked how Daniel’s cancer was being treated. Colleen said they are treating it by “starving it, by not feeding it.” She said she found some information on the Internet and started giving Daniel high-PH water, many supplements and an organic diet that includes lots of greens and lightly-sauteed rice.
This brings up two observations on my part. First, I guarantee Daniel that dietary changes and “ionized water” (which is, by the way, the purest quackery and has no value against cancer whatsoever) will not make him feel as sick as the chemotherapy did. Ditto the “high pH water,” which sounds very similar to Robert O. Young’s quackery. Of course, over time the lymphoma will do quite a good job of that until Daniel eventually dies. As I’ve pointed out before when another young teen who chose “natural” therapy over effective chemotherapy pointed out (Abraham Cherrix), death from lymphoma is no picnic. Cherrix claimed that, by rejecting chemotherapy, if he died he would at least “die healthy.” Refusing chemotherapy and radiation only forestalls the suffering, the main difference being that at least the chemotherapy has a high chance of eliminating the cancer. Once a refusenik becomes ill from advanced cancer, there is no turning back and it is highly unlikely that his life will be saved even if he changes his mind. Indeed, the frustrating part about cases like this is that time is survival. While this drags out for weeks and months, the lymphoma keeps growing, which is apparently what it has done since Daniel ceased his chemotherapy.
Cases like Daniel’s are usually presented as issues of “health freedom,” parental rights, or the right of a minor to control his or her body. In Abraham Cherrix’s case, it became all three, mainly because he was 15 years old when he and his parents refused further chemotherapy and the case stretched out to past his 18th birthday, when he could do anything he wished. In the interim, he and his parents had come to a compromise with the judge in the case and had agreed to have him treated by a radiation oncologist named Dr. R. Arnold Smith, who combines radiation therapy (which took care of localized tumor deposits in a Whac-A-Mole fashion) with woo. Cherrix was in an arguably gray area when it comes to having full adult rights with respect to choosing his treatment, and from his perspective he was fortunate enough that his tumor was indolent enough that it waited out the clock until he could do anything he wanted. Another case I’ve discussed, namely Katie Wernecke, was 13 when she was diagnosed, and clearly 13 is too young. The last I heard about her, she was 15 and had relapsed widely, having written a very sad story. (I do not know if she is still alive and would be very grateful for any updates if anyone is aware of them.) Katie’s case was primarily couched as a battle against parents by overweening state child protective services and a suppression of “alternative” therapies like the high dose vitamin C her parents subjected her to.
But what to do when a case is presented as a freedom of religion issue? I’ve discussed such issues here before, although rarely for cancer patients. For instance, I’ve discussed the issue of the child who relied on prayer instead of medicine for their daughter’s type I diabetes, leading her to die of untreated ketoacidosis. In this case, Daniel is claiming to be a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago. In general, although the First Amendment guarantees freedom of religion, it is not an unlimited freedom, any more than parental rights over their children are unlimited. The state can and should step in to protect a child endangered by magical thinking. And, make no mistake, this is magical thinking, as this interview with Daniel’s mother shows:
“We believe in traditional methods. To strip that away would be stripping his soul right out of his body,” she said.
When Olson asked more questions, Colleen Hauser said she understands Bostrom’s point of view but does not agree that Daniel’s cancer will metasticize. She said she would give permission for chemotherapy treatments if it were a matter of life and death, but would not agree to routine treatments. She said the survival rate with traditional medicine is “one hundred percent.”
No medicine, not scientific medicine and certainly not “traditional” medicine can guarantee a “100% survival rate.” Indeed, if there’s any percentage survival rate that traditional medicine can guarantee for Hodgkin’s lymphoma, it’s much closer to 0% than it is to 100%. Yet, based on religion, this family labors under the delusion that magic water (which, let’s face it, is what they’re offering) along with supplements will cure Daniel. And they are going to be given far more deference in court than that delusion warrants. It’s really no different than various Christian religious sects claiming that prayer will cure their child, but, because of the undue deference we as a society give to irrational claims made by religion, deference we would never give if the reasons for the claims weren’t based in religion, religious “alternative” medicine such as what Daniel is choosing is taken seriously, as though it weren’t totally irrational and not based in science.
Unfortunately, as was the case with both Katie Wernecke and Abraham Cherrix, even if the court rules to save Daniel’s life, the particulars get very, very messy. Here’s why:
Furthermore, Colleen Hauser said she won’t comply with a court order requiring chemotherapy, and Daniel is likely to physically resist the treatment.
“He said he would bite the doctor’s arm off,” she said. Daniel is one of eight children who lives on the family’s dairy farm outside Sleepy Eye.
Is there a judge who would order a child physically restrained in order to give chemotherapy? Besides the horrible images it gives to opponents of science-based medicine who want the right to subject their children to their faith-based woo without any government interference, there is a huge practical issue. While it may be possible to physically restrain a child like Daniel in order to place permanent intravenous access and then, every so often, to give him chemotherapy, it would be very difficult, and there would be nothing to stop him from trying to rip the intravenous access out to prevent further doses, potentially hurting himself, unless he were kept under constant surveillance. In other words, he would in essence need to be imprisoned for therapy. Then there’s the issue of radiation. Radiation therapy requires the cooperation of the patient, who must lie still on the table and do so every day for 30-40 days, depending on the radiation therapy regimen. If Daniel won’t cooperate for radiation, he will risk having the radiation beam hit places that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Sure, he could be sedated for each session, but there’s nothing good about sedating a child five days a week for six weeks or so. It’s not just bad for the child, either. Imagine the hit the moral at the hospital would take, with staff having to view such a spectacle day after day. And you can bet that Colleen Hauser would make sure that the press knew every sordid detail. It would be a disaster for Daniel, a disaster for the physicians and nurses treating him, and a disaster for science-based medicine.
Indeed, it might not even be ethical, and at the very least one of Daniel’s oncologists is very uncomfortable with the idea, as shown in this testimony:
Elbert asked if she would restrain Daniel. She answered that medication can be administered in different ways. She said she does see a need to restrain patients, but has never had to actually do it. She said she wouldn’t do something that would hurt a child.
She said the Mayo Clinic has teams of people who help patients with emotional issues and help children understand their treatments.
Elbert asked if Rodriguez had ever placed a patient under anesthesia and she replied she has never had to do it.
“I don’t know if you can ethically do that,” she said.
Rodriguez said children who are scared to be treated for cancer are common because of the treatment and because of changes in body image. She said it is normal for a 13 year-old to be scared of treatment. She said she has never had to sedate anyone for treatment.
Unfortunately, the choices before the judge boil down to:
- Try to make Daniel and his family see reason. (Not bloody likely.)
- Force Daniel to undergo therapy. (Very ugly and problematic from an ethical standpoint, as I described above.)
- Let Daniel die from religious-inspired medical neglect. (Horrible and wasteful.)
I hope for #1, but if push came to shove, I might reluctantly accept option #2 if it would save the life of a child. Thirteen-year-olds are not generally competent to make such a decision for themselves, and parents do not have the right to let their children die in the name of their religious beliefs. But let no one be under any illusion just how horrible option #2 would be. Let those who blithely and ignorantly pontificate that the court should force Daniel to undergo treatment understand just what that involves. It’s not at all pretty and it may harm Daniel. I say I would probably reluctantly accept such an unpleasant option in order to save Daniel’s life as the lesser of evils, but I understand what that choice entails, and most likely the oncologists treating Daniel have made the judge aware of what that choice entails.
The real culprit, of course, is a religion that rejects science and its fruits in favor of faith-based quackery, as is the indoctrination into that religion that has this boy so completely convinced that quackery will save him. Let me be very clear about this. However, scientific medicine is not blameless, either. I can only wonder what might have happened if there had been better support mechanisms to prepare Daniel and his parents for the unpleasant side effects of chemotherapy, to explain to them better just why he needed to put up with feeling so sick now in order to live to adulthood and hopefully old age, and to see them through the process. True, it may have made no difference at all. After all, Daniel’s mother was clearly doctor shopping, going for multiple medical opinions, and becoming obviously unhappy when all of the opinions were exactly same. Still, though. I wonder.
Orac’s commentary
- Another child sacrificing himself on the altar of irrational belief
- Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
- Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
- Mike Adams brings home the crazy over the Daniel Hauser case
- The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
- Chemotherapy versus death from cancer
- Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
- An astoundingly inaccurate headline about the Daniel Hauser case
- Good news for Daniel Hauser!
- Daniel Hauser, fundraising, and “health freedom”
117 replies on “Another child sacrificing himself on the altar of irrational belief”
I’ve been following this story closely as it is unfolding in my backyard. I grew up in the area and can’t understand where such horrible, irrational, and deadly ignorance comes from.
This kid is so fully brainwashed by his idiotic parents and ‘friends’ that he has no idea what his decisions really mean.
He is going to die, and he doesn’t have to. HE DOESN’T HAVE TO!!!!
Stupid!
how very sad.
This Nemenhah group isn’t even a real Native Indian group – it’s a made-up cult run by a white guy with convictions for fraud.
Go to the New Age Frauds & Plastic Shamons forum and do a search for ‘nemenhah’ and ‘Phillip Landis’.
Sad.
As far as I know, the only religious group that actually forbids cancer treatment is Rastafarianism. Even then, they actually permit it in extreme circumstances.
Ugh. I hate ignorance.
There was a case last November in the UK about a 13yo child refusing surgery – Hannah Jones had leukemia and cardiomyopathy and refused to be put on a heart transplant waiting list, saying enough was enough, she was fed up with hospitals, and she wanted to be at home with her family for the next few months.
The Primary Care Trust (PCT – each one is a government organisation running a group of hospitals in an area) had started the suit in the courts to force her to go onto the transplant list. The PCT dropped the case after a Child Protection Officer explained (very firmly I recall!) the maturity of Hannah’s decision and how and why she had come to it (she’d spent a lot of her earlier life in hospitals and really, really didn’t want to be there again).
Anyway, Great Ormond Street Hospital (who would have done the heart transplant) said there was no way that they would operate on Hannah without her consent (which made the case a bit pointless!). I wonder if the PCT were just trying to cover themselves, scared about somebody hypothetically asking “why didn’t you do something?”.
Now, that’s a different case, and I think everybody is content with Hannah’s right to choose.
But how does one distinguish between Hannah’s case (a 13yo making a rational decision, choosing a dignfied shorter life over a long period of hospital confinement, based on good information and her personal preferences) and Daniel’s case (a 13yo making a bad/irrational decision, choosing ineffecitive woo over heavy surgery and nasty drugs, based on wholly incorrect information)?
It seems to me that the ages of (say) 11ish to 16ish are really nasty consent-wise. Younger than that, bad decisions are an issue for child protection officers and legislation. Older than that, they’re adults, it’s their right to choose. But in between they’re in a no-man’s land.
Many/most have skills of adult judgement, and can have very sophisticated knowledge, but they don’t have wide experience, and may be making fully informed choices (Hannah) or responding to brainwashing (Daniel).
Clearly it would be wholly wrong to force Daniel into agressive medical therapy. The most one could demand would be some sort of requirement that he be presented with the facts of the medical side – but that has probably already happened.
So that leaves one option: sadly for Daniel, he is old enough to be stupid enough to choose to die.
This article presents a one-sided view of the situation. It is tragic that a young boy will die because he is being influenced by his parents to forgo possibly curative treatment, but the decision is not as much of a “no-brainer” as the author indicates. Indeed, portraying it as such reflects a lack of understanding about the issues facing chemotherapy patients. Chemotherapy is often a horrible and permanently maiming intervention. One pays for the opportunity to live on with chronic illnesses, sterility and the constant fear of relapse. I have seen these phenomena regularly in my medical practice. This is why I offer to select patients some alternative treatments, based on evidence of efficacy. This article tends to dismiss alternative medicine as quackery. Obviously the author is uninformed about the vast research basis of many types of alternative medicine. The author also demonstrates ignorance that much “evidence-based medicine” is biased in favor of the drugs being studied because it is carried out by those most likely to profit by favorable statistical analyses. In addition “evidence-based” often ignores the human costs to the benefits and overstates the true value of the intervention.
I think that the author is correct in assessing that a close-minded view of the alternatives open for cancer patients is wrong and in some cases tragic, and he should heed his own advice.
Specific info about Nemenah leader Philip Landis (AKA Cloudpiler) in this NAFPS post – he’s into all kinds of medical woo. Another post in the thread claims that one of his fraud convictions was for running a fake medical clinic that claimed to cure AIDs and – yup – cancer, With mushrooms…..
Sigh.
Grabs popcorn…sits back…waits for fireworks…
@Mark (#6)…what kind of doctor are you? And what kind of cancer patients do you see? What do you treat them with? I have a good background in pharmacology and pharmocognacy so I will recognize most effective, reviewed treatments. (And many that are pure quackery)
And have you read anymore of Orac’s posts? Orac dismisses alternative medicine that has no QUALITY research done on it. He has never said he is against concurrent treatments that have some effect (i.e. massage for muscle pain, relaxation techniques, etc.) But he focuses on Science Based Medicine. And, he IS a cancer surgeon and researcher. He knows a lot about cancer, treatments and their effectiveness. He is also not afraid to call out allopathic medicine when the circumstances call for it.
I can see an option 2.1: Order treatment, throw the parents in the clink if they don’t comply, but don’t attempt to physically force treatment on the kid. That way, you get recognition of child abuse under the law, but the kid’s person is still “inviolate” and there are no brutal ethical problems. He’s 13, it’s the parents’ responsibility, anyway, let them watch their son die from jail.
Obviously the author is uninformed about the vast research basis of many types of alternative medicine.
Obviously, the poster has never read anything else by Orac, ever. Once you start excluding studies that are badly designed and fatally flawed – as Orac does frequently right here on this blog – that “vast research basis” starts to look decidedly less vast.
To quote Tim Minchin: “alternative medicine is by definition that which has not been proven to work or proven not to work. Do you know what the call alternative medicine that has been proven to work? Medicine.”
Indeed, portraying it as such reflects a lack of understanding about the issues facing chemotherapy patients. Chemotherapy is often a horrible and permanently maiming intervention.
Actually, Orac did go out of his way to underscore how horrible the effects of chemo, especially forcing someone to undergo it against their will, can be; and you’re an idiot to assume he’s any less experienced than you.
That said, I’m with you that patients should have the right to refuse healthcare for exactly this reason. Faced with chemo or death by cancer, personally I’d have a hard choice to make, even if refusing was a guaranteed death sentence. Unfortunately – and this was the whole point of this post – the situation is a bit more complicated with minors.
Chemotherapy is often a horrible and permanently maiming intervention.
Chemotherapy is dangerous. I don’t think anyone denies that. But saying that it is often a horrible and permanently maiming intervention is going a bit far. The majority of patients receiving chemotherapy find it tolerable. A few, generally those with lymphomas with B symptoms or very high tumor loads, find it actively enjoyable: quick relief from symptoms will do that for you. The “puke your guts out and then die” stereotype of chemotherapy from the 1970s has not been reality for decades.
One pays for the opportunity to live on with chronic illnesses, sterility and the constant fear of relapse.
That’s the thing about living: it’s uncertain. Not taking chemotherapy for HL is virtually a death sentence–heck, you’ve probably got a better chance with a death sentence, the governor might intervene whereas cancer is relentless–but chemo doesn’t always work or always work perfectly. So, yes, there’s five years of waiting. Most people who receive chemo for HL are healthy afterwards. There is an increased risk of a number of illnesses, including AML and cardiovascular disease, but the absolute risk is still small. And, well, to have a long term toxicity you have to have a long term. Which people who refuse treatment rarely have.
This is why I offer to select patients some alternative treatments, based on evidence of efficacy.
Could you give specific examples? I’d love to have a less toxic alternative for any number of cancer types so any citations you can give would be appreciated.
Damn. LOL.
I would also like to know what mark’s efficacious alternatives to standard treatment for Hodgkin’s are, what his training and medical practice consist of, and if he’s ever encountered survivors of Hodgkin’s to ascertain how “permanently maimed” they are through mainstream curative therapy (and if they’re sorry to be alive).
As a pediatrician I would agree that there can be long term side effects and later chronic illnesses as a result of chemotherapy in childhood. It’s something we need to be aware of so we can follow these children and provide good care for them for their whole lives, not just during their period of cancer treatment. But it’s certainly not a reason not to treat them, particularly in a case of cancer like this, which is very treatable. I’m in a similar situation with one of my patients right now. He doesn’t have cancer; he has something that will kill him much more slowly, but kill him it will if the family doesn’t get on board with treatment, and it’s so very frustrating.
Well, in some of my darker and more cynical moments, I wishfully think of the following scenrio…
Parents: We want Woo! More woo! And magic crystals! Big pharma ™ is evil! You cant make us take him to hospital for treatment! It infringes on our rights as parents!
Judge: Very well. I will offer you this. You will make the choice wether you proceed with conventional medicine or ‘alternative medicine’.
Parents: Yay! Take that evil western doctors! Lets have a congraturaltory colon cleanse!
Judge: However – the choice you make will be binding. Once you make your decision you will not – under any circumstance – be permitted to seek treatment by the other choice at a later date. You will not be permitted to waste the time, money and effort of professionals who have dedicated their lives to healing the sick. Many others desire such treatments and you deny them that by consuming precious resources in a half arsed effort by you.
Parents: But, but, thats not fair!
Judge: It may have escaped your notice, but LIFE ISN”T FAIR. You want the choice? Fine, that is your right. But you also have to bear the consequences of that choice – a shocking realisation for you, I know. So I ask you to think long and hard before telling me your decision. Oh and by the way – remember that antibiotics, painkillers, Tylenol and the like are evil western medicine….
Do tell. In fact, do tell me this:
1. What kind of doctor are you? Are you an oncologist? What specialty is your board certification in?
2. What alternative treatments do a better job with Hodgkin’s lymphoma than conventional therapy (90% “cure” rate)? What is the scientific evidence to show that these alternative treatments do that well? (I’ll wait.)
3. What is the “vast research basis” of alternative medicine for curing cancer?
My prediction for mark’s answer? Either:
1. Waffling and anecdotes.
2 Crickets chirping.
1.Waffling and anecdotes.
2 Crickets chirping.
LOL, thanks Orac.
Force Daniel to undergo therapy. (Very ugly and problematic from an ethical standpoint, as I described above.)
I’m not a doctor, but I would think choosing option #2 here would be unethical. The whole thing is an ethical minefield, actually.
Still, I can’t see how forcing a child to undergo chemotherapy could be good. It would incite all sorts of populist sentiments against it, furthering the “government wants to make your healthcare decicsions for you” meme. This might end up doing way more harm than good — not for Daniel, but for medicine generally.
As horrible as it sounds, barring #1, #3 may be the only ethical choice left, even as it condemns this child to death. But, at some point, I don’t think you can save everyone from their bad choices. Or their parents’ bad choices.
I come down, on general principle, on the side of both the parents to make the parenting decisions, and the legal principle of consequences for endangerment (failing to take responsibility for one’s actions and their consequences is a huge problem in our society generally). So, as stupid and unfortunate as the result is going to be, when the child dies (unnecessarily), the parents need to be tried for neglect and/or endangerment. I’m not big on imposing a sentence other than probabtion, because the parents will certainly suffer as a result of their choices, but the record needs to show not just that they were wrong, but that they caused the death of their child. That MAY influence the decisions of a few others that come after.
I had Hodgkin when I was 3 years old, I am actually quite thankful that I do not remember much of the whole ordeal, but I do know the chemo made me very sick.
I am a perfectly healthy 23 year old now and I still go to the hospital I was treated at once every while to participate in studies on the long term effects of chemo on children.
However, I overheard my mother talking to another mother who’s little boy was in the same situation I was 20 years ago, but she said that her boy does not get very sick from the chemo anymore. 20 years is ample time to make good progress in chemo therapy, anyone know if this is true though?
-let them watch their son die from jail.- and then son goes out and shoots a load of people because of how he’s been treated. As his parents have been taken from him and he has been put in care for not doing what he is told by the authoritarian state.
ugh, that was so dumb there aren’t even words.
Of course there is no worry because “Mark” is about to show us the evidence based alternatives that he uses with url’s to their noted efficacy.
I wonder who told the parents that herbal treatments and magic water have a 100% success rate. Aren’t false claims like that illegal? If the person selling the magic water made this claim, is there any legal action that can be done? I think the biggest part of the problem is that these people have been led to believe something that is completely false.
13 years old is a gray area. This is much different than the infant who died recently. If this child really does not want treatment, then choice no. 3 is the only option. I think that doctors should try to reason with the family, and never give up on them. Our only hope is that this boy will eventually change his mind. As tragic as this is, I just don’t think the courts should essentially imprison this person for treatment, even it’s for his own good.
I hope the judge orders the treatment, and puts the parents away on a contempt charge if they don’t comply. I don’t know of any country that grants full legal self determination to a 13 year old, so it’s fully on the parents shoulders to get him treated. Religious exemptions only go this far, you can’t starve your kid to death either because you needed to follow your favorite prophet for 40 days of fast in the desert.
Maybe a good child abuse resulting in death charge to top it off would help at least prevent further cases like this.
Anyone remember that part in The Incredibles where Mr. Incredible saves that guy who jumped off the building and ends up getting sued for his efforts? I can see that happening if this kid is forced to go through chemotherapy. Unless he or his parents grow up.
1. What kind of doctor are you? Are you an oncologist? What specialty is your board certification in?
“Yes… I’m a doctor.. I have a degree in Truthology from Christian Tech.”
Ok, Ok, so maybe that particular Simpsons quote was from the creationism episode but it seems quite appropriate here.
I am a cancer survivor and I am completely radical and insane over this case. Here’s my plan;
1. Get that kid away from his mother
2. If there is a Dad in the picture try and use him to influence.
3. If necessary sedate the kid and force chemotherapy into his veins.
We do not allow 13 year old children in this society the right to drive, vote, drink, hell we don’t let them go to the movies if they’re rated R. I don’t care what this young man thinks, he has no idea of what is to come.
As for someone like Mark above, shut up. That’s all, just shut up. I am so sick of this kind of argument. If an adult want to try the treatments that you propose than fantastic. But when I am working with a child I want treatments that have been proven to WORK!
The only hope will be if someone can convince the kid himself that his parents are wrong, and that he will die* if he doesn’t get treatment. I think an example needs to be made of the parents in some way, but if the kid genuinely won’t submit to treatment, I don’t think the state can force him to.
I’ve heard rumor that one of the family’s lawyers is quitting after hearing the kid’s testimony — he doesn’t believe any longer that the religious argument will hold up, because this isn’t rooted in a religious conviction. That seems likely to me, since their religion (to which they’ve belonged for 18 years, apparently in addition to Catholocism) didn’t forbid them getting the first round of chemo. They’ve publicly admitted that they decided to try alt med after going on the Internet, not after consulting any spiritual leaders or anything. It’s probably more that their religion is compatible with their defense claim.
I don’t know what the state should do in this case. Minefield all the way. Maybe force them to get educated about cancer so they are making an informed decision, and then charge the parents with negligent homicide after the kid dies. Lousy outcome, no matter what, unless they realize what they’re really doing.
*And he won’t die healthy, the way he says he wants to. WTF does that mean anyway? How can you “die healthy”, apart from walking out into the street and suddenly being struck by a runaway bus or something equally abrupt? If the cancer kills him, as he seems to acknowledge it might, he will not be healthy. He will be dying of cancer. Methinks he doesn’t understand the pain and misery that he’s chosen.
I think that where this situation gets sticky is in defining the scope of each party’s responsibilities and commitments. As Orac has suggested, science (and medicine) is in a realm wholly apart from politics. I would add that it must also remain independent of transient societal mores.
A physician is compelled to strive for the well-being of his/her patients. As such, the physician must press for treatments proven to be efficacious, sans consideration of the patient’s perspective. When the two are diametrically opposed, the physician – after exhausting all avenues of persuasion – ultimately accepts the patient taking a course of action that the physician knows to be flawed. Regretfully, to be sure.
Legislators are compelled to establish guidelines which protect individuals who lack the power (or the knowledge) to make appropriate decisions. It would be hoped that their efforts would be based in good science, but such has unfortunately not always been the case.
Parents are compelled to do what they believe to be in their children’s best interests. Unfortunately, the parents’ beliefs are not always based in sound logic, much less, good science. It is in such cases that governmental agencies step in, thus acting upon their fundamental premise, even (in some cases) overruling the desires of the parents in favor of proven science. Where they run aground is in their attempts to provide protection for the one, while not infringing upon the rights of another.
Physicians come under the authority of the government, and have little choice but to abandon attempts to provide treatment if the governing bodies so order, unless they are willing to martyr themselves and eliminate their ability to help others in the process.
I personally agree with Don Parker’s solution, even as I regret the notion that the example being made would be at the cost of children’s lives. I think we need to be very careful in transferring responsibilities from the logical parties; allowing the “chips to fall where they may” would prove initially painful, but would, in the final analysis, be most beneficial.
That’s how I see it… that and a couple of bucks will get you a cup of coffee.
Orac (and the other MDs posting):
I’m curious whether your training covered mass-casualty situations.
I ask because my (limited) experience in conducting mass-casualty drills has been that MDs are often my worst students in terms of tunnel vision.
Given what you’ve written here, I’d black-tag the kid and hope for the best in terms of public follow-up.
Well, that, and wish that the Court informs the parents that it recognizes the limits of its power — but that when, not if, Daniel dies they will be charged with fatal child abuse.
I don’t think it’s a good idea to try to make an example of the parents after the child dies. Instead of making an example of them, it will more likely make martyrs out of them. If the courts decide to prosecute them for child abuse/neglect, I will support it fully. But as angry as we are at these parents for letting their child die, we have to care more about what’s effective and less about revenge. Instead of giving this family an ultimatum, doctors and others need to keep stressing the importance of evidence-based treatments, and be willing to do whatever is possible to save the boy’s life if he changes his mind.
Mark (#6 above) presents a false scenario. With his high sounding, pompous and ultimately vacuous wording, he offers no âevidence of efficacyâ or any details of the âvast research basisâ (whatever that means) for the quack remedies he hints at. His snide comment about EBM being biased provides no reason to suppose his âalternativeâ quack cures work, and his âclosed minded â jibe doesnât hide the fact that he is too closed minded to accept that alternatives donât work. Markâs post was a waste of time and energy.
This is a rather touchy area. I agree that people need to understand when submitting to invasive medical treatment is necessary.
[blockquote]I can only wonder what might have happened if there had been better support mechanisms to prepare Daniel and his parents for the unpleasant side effects of chemotherapy, to explain to them better just why he needed to put up with feeling so sick now in order to live to adulthood and hopefully old age, and to see them through the process.[/blockquote]
I agree here completely. You’re right, it may have made no difference at all… but given the fact that they did initially submit to treatment, it certainly begs the question (s)…
I don’t know how productive it would be to try to the parents for anything, whether it be reckless endangerment, or neglect, etc… I can see it backfiring, pretty signficant backfire at that…
I second what Calli Arcale said. Religion alone does not seem to be the cause of the families choices. I say this because they had no problem with going through with the first round of treatment but then suddenly had an revelation that they not use chemo after he got sick from it and use alt medicine.HMm? Why the sudden change? Why the sudden change of religious belief? If you really are rejecting medicine because of religious beliefs you’ve held before you got sick you don’t do the treatment and then say, “Well, now, I’ve changed my mind and my religion says I shouldn’t do this.”
They are only using religion as an excuse because they got freaked out by how sick he got and want an excuse to not continue. They got scared and wanted to see if there was an alternative way.
What I don’t understand is why they went to a doctor in the first place. Should they not have gone to Chapel instead?
Curious: The Hausers claim to have been Nemenhah members for 18 years, yet the group has only been in existence since 2003, according to its website.
What the group basically does is to sell ‘training’ and ‘certificates’ in healing – $250 down and $100 dollars annually thereafter for life, plus monthly ‘donations'(again, for life), plus $30 ‘donations’ for each training module. That’s how this 13-year old kid has managed to get himself certified as an ‘Elder’ and ‘Shaman’.
This page makes it clear that Nemenhah was created to get around State anti-quack laws – it appears that as a so-called Native American religious group, they hope to hide behind freedom of religion laws to peddle their quack medicines (they’re linked to an outfit called Native American Nutritionals).
So was that perhaps why the Hausers bought that ‘certification’ for their son?
The levels of tragedy in this keep growing. The child’s almost certain death is, of course, the greatest one, but then there is the grief of the parents as they watch his painful, uglty death. But there is a further level, because the ‘healer’ they follow is not some sincere idiot but an obvious con man — with ideas so loony they would deserve a FDoW were the results not so tragic. Here’s a list of ‘courses’; and an additional note:
Anyone else enjoying the crickets? Mark? Mark?
In my neck of the woods it’s tumbleweeds. Too dry for crickets.
On some level I can identify with this family. I had nonHodgkin lymphoma as a young adult and was very, very sick with an 18-cm chest mass, SVC syndrome and extreme shortness of breath. I started chemotherapy almost literally on an emergency basis. Then there was a bad complication during my first treatment, with some very unfortunate consequences.
I have relatives who live in Brown County so I’ve been following this case very, very closely. My impression is that the Hausers aren’t necessarily opposed to treating the kid; they just aren’t ready to deal with it right now. My guess is that they weren’t prepared for what his first treatment was going to be like, and it really scared them.
I’ve been there. I can tell you that things sometimes happen really, really fast and the medical team doesn’t always give you time to wrap your head around it. Complications can be profoundly upsetting for patients and families, especially when they happen right at the start, when you’re still trying to establish some level of trust and confidence in the plan.
I don’t hold any altie beliefs and I had the additional advantage of understanding medical culture and being reasonably well informed about what I was up against. Yet there were many, many times during cancer treatment when I felt bullied and disrespected and lied to. By the time I finished treatment, I hated the whole team. Think how much worse it would be for someone who is mistrustful of the system to begin with, or someone whose head has been filled with misinformation and mistaken beliefs.
I’m not defending the Hausers. Putting their child at risk like this is criminally, stupidly wrong. But my take on the whole situation is that the trust and communication either weren’t established up front, or broke down fairly early in the process. The family got upset and frightened and started to balk, and then Family Services got dragged into it and it turned adversarial. My guess is that the religion thing is an excuse for them to maintain their position, and there are plenty of wingnuts out there who are only too happy to aid and abet.
I think the best thing that could happen right now would be for the treatment team to sit down and really talk to this family, listen to their concerns, and try to mend fences and figure out some way to support them at the level they need.
I also think this family would really benefit from connecting with someone else who has a child with Hodgkins – someone who can talk to them honestly about what it’s like and let them know they can do this, they can get through it and it won’t be as bad as they think.
Orac – “The real culprit, of course, is a religion that rejects science and its fruits in favor of faith-based quackery”
No it’s not. The real culprit is
“I am opposed to chemotherapy because it is self-destructive and poisonous”
Mr Orac. As a scientist, is it or is it not true that chemotherapy is self destructive and poisonous?
Answer the question directly please. No talking about benefits outweigh the costs.
————-
One of Orac’s choices for Daniel – “Force Daniel to undergo therapy”
Are you a doctor or a policeman? Do you help people or do you force people? Do you believe other people can make their own decisions, or are you God and you make decisions for other people?
Any doctor who would force treatment on Daniel is no better than those “Doctors” that approved and monitored torture at Guantanamo. Any doctor who treats a patient against their wishes should be barred from medicine.
What if I decide it would be good in my medical opinion for Orac to be castrated, and while he was in my office, I just went ahead and castrated Orac because it was for his own good?
Makes you think twice about allowing Dr’s to do “what is right” doesn’t it?
@Prup: Their prices have gone up since then – now it’s $250 down, $100 annually and an unspecified monthly ‘donation’. See their site.
According to this update, the judge heard Danny’s closed-door testimony this weekend and now no longer believes that he’s objecting to treatment on religious grounds.
http://www.mankato-freepress.com/local/local_story_130003452.html
The kid’s guardian ad litem also states that he doesn’t have the capacity to make this decision and that in fact he is “incredibly below” his peers academically.
So I think there really are some other things going on with this case.
No one ever said cancer treatment would be easy. But I truly hope this kid can get past the worst of his fears and deal with it, and that his parents will be there for him.
happeh, you are an enormous, enormous idiot. Chemo may be extremely unpleasant in the immediate, but it is the best treatment we have for many cancers. So no, it is not self-destructive or poisonous given that for most patients it will greatly increase their chances of survival.
Secondly, if you had bothered to read the article, you would have seen the Orac very clearly describes the ethical difficulties of forcing treatment on anyone. One point that should surely be considered, though, is that at 13, this kid may not be informed enough to make a good decision for himself. Last time I checked, we as a society accept the occasional limitation of individual liberty when one chooses to do something needlessly self-destructive.
So please, shut up, or try thinking a bit before you post next.
#41 Happeh
Define “self destructive” and “poisonous”.
Almost every effective treatment in any medical tradition, be it Native American, Chinese, or Western, can be damaging or fatal if administered incorrectly, at too high a dose, etc.
Yes, chemo kills cells. That’s why it works. In that sense, it is poisonous. All the marvelous complex chemicals that makes various plants effective as healing tools can be poisons, too. But which is more self destructive: Using a tool which causes some temporary damage, but which has a very good chance of providing a cure, or using less destructive means which are unlikely to prevent death?
It’s all about cost vs. benefit, unless you’re going to base your position on spiritual principles, which obviously isn’t going to get you very far with this crowd. If you’re going to do it, come out and say so.
Also, you might want to try reading a little more closely. Orac has clearly stated that he is exceptionally uncomfortable with the idea of forcing treatment on anyone, and that it is probably unethical.
Comparing forced treatment to saving the life of an individual who seems to be behaving irrationally (if the child in question were mentally disturbed, and refusing treatment, there wouldn’t be much debate, i would think) and those helping to torture people mostly for the sake of torturing people is utterly specious.
happeh: Your argument is perfectly correct as far as adults go, and Orac specifically states this. For minor children, the legal status is settled as well, that the parents can be prevented from refusing life-saving treatment for the child. The only question occurs as to where the line should be drawn for pubescents and adolescents.
@happeh
You don’t need to be a expert in medicine to answer your questions.
1- Chemotherapy IS self destructive and poisonous. HOWEVER, it is LESS self destructive and poisonous then CANCER. Period. That logic is the same arguments made to “green our vaccines”. Nothing is “safe”, is is simply demonstrably “SAFER” then the alternative.
2- Orac made clear that forcing Daniel to undergo therapy is a gross violation of his rights, and would be a brutal legal battle. The arguments for are curing the child’s cancer, or letting him die. If you had a man if your office with a gun and he said he was going to kill himself, would you force him not too?
p.s How can castrating Orac be for his own good in any way? If they force that boy to get treatment, he will probably live longer and not suffer from cancer ravaging his body, based on all the medical tests run on him. On what medical evidence are you suggesting Orac be castrated?
One critical question: is this his *own* belief, not his parents’? If so, I’d have to say forcing him to undergo treatment would be counterproductive: not only would it probably not work (because he would resist), if he *did* survive, he’d have to live with being saved by something he considers immoral. It’s like the Jehovah’s Witnesses and blood transfusions – *if* that person is sincere with that belief, I’m not convinced that living with that is necessarily better than a death they’re at peace with – not least because it might drive them to commit suicide. And this applies *regardless of whether that belief has any real basis*, because it looks the same from the inside.
Also, more pragmatically, the effort spent to force this person to take his treatment could save more lives with less ethical quandaries if applied elsewhere. The cost, and hospital effort and space, and so on, could be used to save lives of people who *want* to be helped.
It’s a tricky issue: if the kid was 16, I’d say that forcing him to undergo treatment was wrong no matter what, and if he was 6, it would have to be done. *If* it’s really his own belief, though, I think it has to be accepted…
Interesting that Daniel used the right a juvenile has to stay away from the trial, and to testify in chambers … at the same time he’s claiming he’s old enough to to decide what treatment he gets or doesn’t get.
If he’s not old enough to sit there and hear the testimony from the doctors who are saying he’s going to die if he doesn’t get standard treatments, how can he be old enough to make a life-ending decision?
Would _somebody_ shut up those damn crickets already?
Yo, mark!
I’ve stood by my spouse through numerous chemotherapy treatments and I know that you don’t have to be sick all the time if you listen to the doctor/nurse and take the drugs they give you!
You won’t feel wonderful and you may be half-asleep, but you’ll be alright.
The effects of advanced cancer are awful and he’ll be finding that out soon enough if he persists.
I think the parents probably failed to be proactive enough towards his treatment. A lot of people hesitate to take the drugs but that’s what you need to do. It’s too bad they’ll fail him again by letting him quit.
“It’s all about cost vs. benefit, unless you’re going to base your position on spiritual principles, which obviously isn’t going to get you very far with this crowd.”
Even were one’s argument based upon spiritual principles, it should be noted that such principles uniformly dictate that one’s actions toward others be benevolent. This is, of course, wholly separate from “religious” principles, which are more closely akin to political ideologies, and are frequently at odds with anything resembling spiritual principles.
The administration of a treatment that causes discomfort – even some serious untoward effects – yet prevents the patient from suffering grievous harm or dying, is an act of true benevolence. By the same token, the administration of a treatment regimen of questionable or no value, while avoiding other treatments whose efficacy has been proven, would constitute malevolent behavior, IMO. I doubt that even dyed-in-the-wool skeptics would take issue with taking the correct treatment steps, even if one’s choice to do so were based in their spiritual beliefs, rather than their knowledge of science. I’m not a physician, but I do recognize the need to place trust in my doctor. To refuse treatment because “doctors are evil” or “the medical profession doesn’t know anything” is really an expression of either paranoia or ignorance.
happeh wrote:
Mr Orac. As a scientist, is it or is it not true that chemotherapy is self destructive and poisonous?
Should be “Dr. Orac”. Chemotherapy is poisonous, yes, but self-destructive? Only if you were perfectly healthy and taking it to commit suicide, I suppose. Certainly not if you’re taking it to fight your own cancer.
Answer the question directly please. No talking about benefits outweigh the costs.
How can you talk about chemotherapy without talking about how its benefits outweigh the costs. That’s the whole point.
Your question is akin to asking, “Is it not true that vigorous aerobic exercise that raises your heart rate is tiring and uncomfortable? Answer the question directly, please. No talking about benefits outweighing the costs.”
What if I decide it would be good in my medical opinion for Orac to be castrated, and while he was in my office, I just went ahead and castrated Orac because it was for his own good?
Makes you think twice about allowing Dr’s to do “what is right” doesn’t it?
No, because Orac is an adult capable of making informed decisions, and this kid Daniel is not.
@36 … the Nemenhah founder has been peddling his New-Age faux-Native American ideas for quite a while, maybe 20 years in various states and perhaps Mexico. He was calling his group by the name of a real sub-group of the Nez Perce, until they did the traditional waving of tribal lawyers at him.
He was claiming to have learned some of his techniques at the side of a conveniently dead genuine Lakotah healer … but the healer’s heirs also did the traditional summoning of the lawyers dance and he’s stopped that claim, but not the woo itself.
It is difficult from me to believe that “mark” has any actual medical training. There are certainly cancers for which the risk to benefit ratio of chemotherapy and radiotherapy are questionable in terms of quality of life. But Hodgkin’s is one of the great cancer success stories–a fatal cancer for which conventional treatment is usually curative. I can’t imagine any ethical physician supporting a the substitution of “alternative” treatments for a validated, effective therapy.
What if I decide it would be good in my medical opinion for Orac to be castrated
What the hell is it with kooks and sexual fixations? Why are they such stereotypical Freudian billboards?
Well, if Orac had a fatal disease in either his testicles or penis, and if the only effective treatment were amputation, and if he were a child, and if this medical opinion were based on evidence, and if more than just one doctor had this opinion, then maybe your analogy would stand up a bit better.
Sounds like “Mark” was doing a typical drive-by trolling, with absolutely no intent to engage.
I think he should be mocked until he responds to the requests here, from Orac and others, for his credentials. In fact, it would make a good recurring blog post — “The Mark Clock: X days, Y hours, and Z minutes since he was asked to provide credentials. Nothin’ but crickets.”
Who cares about these idiots? Let ’em die. That’ll show ’em.
One less dumbass in the gene pool. Let him die.
Two minor points:
>>To refuse treatment because “doctors are evil” … is >>really an expression of either paranoia or ignorance.
Or an expression of the belief that one shouldn’t interfere with nature; an antivax loon of this particularly weird stripe turned up a half-dozen or so points back.
From the original post:
>>the undue deference we as a society give to irrational >>claims made by religion, deference we would never give if >>the reasons for the claims weren’t based in religion
Well, Jenny McCarthy’s stripe of irrationality is doing pretty well, as is Oprah’s (while some of hers is religious, a lot is not). I think it’s more a dislike of saying someone else is *wrong*, one of those ‘other ways’ things.
Heard the same comment from my friend, who is presently undergoing her third round of chemo. She saw her own mother die from cancer at 8 years old, and had this image with her (that tells you how scared she was of getting her treatment).
While chemo is certainly no picnic, she could still work on her thesis while having her treatment. She even took up weight during chemo. The most severe effect was the peripheral neuropathy.
Actually, she had a much more harder time recovering from surgery than she had from the chemo.
I donât think there is a chance that the family will recant now that they have so much invested.
Here is an option #4 for you:
I wish someone could cut a deal to chronicle the kidâs planned miraculous recovery so that he wonât die in vain. And we would have a popular, hopefully compelling, negative anecdote for a few flavors of cancer woo. Iâd buy the book or watch the movie, and I already know how it ends.
To add to Stu’s comment #56:
http://www.happeh.com/
Warning – definitely NSFW!
@ Jack B.:
Management of the side effects is significantly better. For the most part I was able to work full time through chemotherapy and radiation. I can’t say it was easy and I don’t know that I would push myself that hard if I had to do it a second time. I can’t say that I’ve been happy with some of the long-term and late effects of treatment, namely thyroid issues and intractable fatigue. But it’s all doable.
To piggyback on what Kemist said:
http://www.nujournal.com/page/content.detail/id/506850.html?nav=5009
According to this news account, Danny Hauser had an aunt who died of cancer when he was 5. Allegedly the chemotherapy killed her, or at least that’s how the family perceives it. There seems to be some traumatic emotional baggage here, and the family is dealing with it by taking refuge in a religious shyster who is telling them what they want to hear.
I’m not so sure this is a titanic struggle between Noble Medicine and Far-Out Religious Lunatics. I think this is more about human beings who are maybe unsophisticated, gullible, not particularly well educated, at least in the sciences, and who have been confronted with a health crisis that is beyond their powers to deal with rationally.
I think they need a little more compassion and a little less contempt.
The title of this article should be “Another Child BEING SACRIFICED on the altar of irrational belief.” No child with an un-abused mind would ever decide to end his own life when given the opportunity to save it. It is insulting and completely incorrect to state that this child has made any sort of independent, informed decision. His parents are 100% to blame for destroying their son’s rational faculties, the act that will soon mean the end of his life.
After getting chemo Daniel would be well-advised to get rid of the second debilitating disease in his life: his insane, pro-death parents.
Imagine the hit the morale at the hospital would take, with staff having to view such a spectacle day after day. And you can bet that Colleen Hauser would make sure that the press knew every sordid detail.
Well, we can turn that around: if the kid continues to refuse treatment (after reasonable attempts to get the parents out of the picture), then the advocates of reasonable medicine can make sure the press know every sordid detail of how far that “ionized water” and other fraudulent crap get him. We can also make sure that every sordid detail of all those fraud charges against Nemenah leader Philip Landis gets out to the public, so everyone can see exactly what sort of “alternative medicine” is being practiced here, by what sort of characters it is advocated, and what its real effects are.
(And we can start by publicly asking questions like exactly what the hell do they mean by “ionized water?” Water with unspecified ionic substances dissolved in it? Water that somehow has more H+ and OH- ions in it than normal? Seriously, if we can’t save the kid, we can at least use this tragedy to inform the public about some very important medical issues.)
Following onto Sophia8’s citation, here’s a comment about one person’s research into this Nemenhah stuff:
———————
Hi, just cruising through while googling this Cloudpiler guy, and I thought you’d be interested in a little of what I’ve learned about him.
I had a good friend who got involved with his group. He claimed that this guy had adopted him into the Nez Perce nation, which struck me as really off. Is this even legally possible? What was more, Cloudpiler was, as far as I could tell, a white guy – which doesn’t necessarily mean he isn’t legally Nez Perce, but I thought it was odd. Suspecting that my friend was involved in something shady, I did some research about him.
From what I could find on government websites, he has convictions in Montana and Idaho. The Idaho one was for running a clinic where he sold a cure-all that he said could cure AIDS and cancer. The Montana one was for taking some investors’ money and then failing to fulfill a contract to help them start a medicinal mushroom business. So I told my friend about this, and he got angry, saying I was slandering Cloudpiler’s good name with lies. He said the Cloudpiler admits to being a convicted felon, but that it was part of the government’s effort to repress him. We haven’t spoken since – kind of a crappy thing to lose a friend over.
Make of it what you may… here’s a couple of links:
http://caselaw.findlaw.com/scripts/getcase.pl?court=mt&vol=00&invol=436
www2.state.id.us/ag/consumer/ annual_reports/consumerannual2000.pdf
——————-
Hope this helps…
The unfortunate child’s mother said “the survival rate with traditional medicine is one hundred percent.’ ” It is unlikely to be workable, but perhaps the authorities responsible could put it to the parents that, should the boy die from his condition, they will be charged with manslaughter or negligent homicide.
Orac, I assume you already noticed that one of the lawyers working for Daniel Hauser also represented Chad Jessop (the Orange County case) about whom you blogged earlier. Jessop also claimed to be a member of the Nemenhah tribe, as does the lawyer.
Stu – “What the hell is it with kooks and sexual fixations?”
What is it with scientists and their wild eyed hysterical denunciations? Is there some reason for your use of the word “kooks” and “sexual fixations”, other than to satisfy your need to hurt?
It is scientific fact that the animals called human beings respond to sexual stimulation. The advertising industry uses that scientific fact to produce advertising that will catch the attention of the animals called human beings.
So is the entire advertising industry “kooks with a sexual fixation”? Or is the advertising industry logically and rationally using scientific research to catch the attention of the animals called human beings?
Like my use of castration example is logically and rationally using the scientific research that the animals called human beings respond to sexual stimulation, in an attempt to draw attention to my point about medical care.
—————
Stu – ” Why are they such stereotypical Freudian billboards?”
You are a scientist and you still make references to the products of Sigmund Freud?
You might want to know that Sigmund Freud was a cokehead. All of Sigmund Freud’s theories are the products of a cokehead. As a scientist, I am surprised that you would refer to something produced by a cokehead, as if it was legitimate science.
1: there is no Nemenhah tribe.
2: for Happeh: is asprin poisonous ?
Give me a direct answer please, no equivocations about relative risks and benefits.
3: I’m sorry to see this boy wants to die. Has anyone with an oncology background ever thought about writing up a description of what will happen to this boy and when ?
I find this case legally straightforward, but potentially societally very troubling.
Legally, the child should be forced against his will to receive the treatments. It’s not pretty, but the state has a responsibility to protect children. For those who take the “well, it’s his choice”, as I posted on another blog, ask yourself whether you’d allow the boy to lop off his genitalia because it was part of “the way of Coyote”? Imagine if you, the boy, and two burly cops were there who could prevent him at your order. Most people would realize intuitively that he is deluded and this must not be allowed to occur. However somehow when it is actually death instead of bodily mayhem, we map a kind of poetic elegance over the issue, as if this is a right that every being has, however young. But of course, that is incoherent.
I think there could be an argument that this could be legally troubling when the state prescribes the wrong treatment for a minor. We already have an ugly history of that with old cases like that of Carrie Buck.
Societally, it could be troubling if many more cases like this occurred and a sort of medical refusenik movement grew. I agree with Orac that a forced medication would be a disturbing turn of events, costly, draining, and just to be avoided if at all possible. It is so bad that it almost seems like maybe it would be more utilitarian to let the family have its way. But I don’t think it is.
Lastly, goatgirl made such good and compassionate and wise comments on this thread. I agree with your point that the first step in this is to try like hell to befriend these parents and boy and try not to be adversarial.
“You might want to know that Sigmund Freud was a cokehead.”
After perusing your website I would reckon that you, Happeh, might be a cokehead. Or at least, suffering from severe head asymmetry. But what do I know? I’m just a “stoopid” scientist.
An irrational belief is irrational no matter how old the proponent – why are you all so sanguine about this should this unfotunate boy have been, lets say 17 yrs old? Are you all happy to sit by and allow an adult to die as a consequence – to keep it simple picture a 22 yo mother of newly born twins who dies of blood loss soon after birth after refusing blood transfusions. No need for sedation, only a brief restraint to administer the transfusion ( perhaps not even that after shock intervenes) and a guaranteed effect. Does autonomy trump life?? Always?
Uh…..Wow…I mean…shit; I understand now , we’re in the presence of genius that we are just….obviously missing…..right…
Just look at the url in happeh’s name to see what level of kook/troll -dumb you’re dealing with. There is no logic that can penetrate that mighty bastion of ignorance and stupidity. Damn….
#75: Does autonomy trump life?? Always?
For adults, yes, so long as they’re only harming themselves.
I think it’s important to remember that this kid wants to LIVE. He’s just been grossly misinformed about the efficacy of his chosen treatment.
Does the state have a responsibility to keep him alive against his wishes ? I think not. I would rather the health system spent the money time and expertise on someone who wanted the therapy who could not afford it.
Remember that this kind of religious belief is a meme that has infected his mind. We are seeing natural selection in action, cleaning the meme pool. The publicity will also help to vaccinate many against woo.
I know it seems cruel, but it is crueller to put all the staff and other people through a huge fight. Let him trust his religion and others can learn from the consequences. Now if he makes a miraculous recovery…
I would rather the health system spent the money time and expertise on someone who wanted the therapy who could not afford it.
Remember that this kind of religious belief is a meme that has infected his mind. We are seeing natural selection in action, cleaning the meme pool. The publicity will also help to vaccinate many against woo.
I know it seems cruel, but it is crueller to put all the staff and other people through a huge fight. Let him trust his religion and others can learn from the consequences. Now if he makes a miraculous recovery…
Chemotherapy is often a horrible and permanently maiming intervention.
And sometimes it saves lives so spectacularly that the patient turns out to be Lance Armstrong.
I’m pretty sure he was Lance Armstrong before the chemo, too.
It’s about time something good came from cases like this. The judge should order treatment. If the parents refuse to enable this then the parents should be tried for murder. something needs to be done that makes those who consider these choices in the future recognise what they are doing, and show them that society won’t tolerate it.
I really, really hate attitudes like that:
https://www.respectfulinsolence.com/2009/05/daniel_hauser_and_the_rejection_of_chemo.php
Whoever told this family that herbal treatments or magic water are 100% effective should be the one who gets in trouble, especially if they are making money from it by selling the herbs and magical water.
Buh bye
Man, fuck that kid and his family. When he dies that’s just one less ignorant jackass running around.
I do not feel any sympathy for the child or parents. If out of their deluded religious state they decide to take the side of faith rather than that of science then that is their choice.
Ben Franklin is still correct. God helps them who help themselves.
Strikes me that this is a simple case of survival of the fittest. Or lack thereof.
I do believe that medical personnel have an obligation to provide the best medicine they can, but I don’t believe that they are required to force it on anyone capable of making up his own mind who refuses it. In this case we have a family that has made a life-style choice that is incompatible with the long-term viability of their line. Others will make better choices and will thrive. If his doctors have clearly explained the options and their consequences then their ethical obligations have been met and they should move on to patients who want to be treated.
The real tragedy is the cost and effort that the well-meaning legal and medical systems have wasted on this case, which could have gone to others who would have appreciated them.
Y delicate situation indeed. There is an alternate option: the state can sieze him from his parents at least temporarily while treatment ensues, placing him with the support of a good foster home. Yes they do exist.
I wouldn’t want to physically restrain him either, but once child welfare authorities have separated him from his parents, they can at least have a chance at persuading him to accept the inevitable treatment before it’s too late for him. Tell him he can practice his woo after he’s all grown up, but for now he needs a fighting chance at survival.
I can see the temptation to write it off as a Darwin award case. One problem is that the parents are not actually killing themselves. Though there is a logical argument to be made for this alternative category, so far you only get Darwin awards from stuff you do to yourself, not from actually killing your children.
Another problem with this is the sheer lack of human compassion shown by the people making those suggestions. I wouldn’t wish a cancer death on anyone. Well, OK, maybe Dick Cheney.
Who’s to say a long, unhealthy life is better than a short, virtuous one? I’m in the field of science as well, but I implore you to recognize its limitations. Medicine, in particular, is much more of an art form than many people realize. There are countless examples of drugs and treatments prescribed because they have proven to help, and yet we have no idea why.
I think you should recognize that freedom of choice is one of the things that made this country great. Forcing this kid into treatment against his own volition will only lead to an increasingly slippery slope of denied freedoms. Not everything can (read: should) be so tightly regulated, such that a child and his family are forced to sacrifice a high-quality life for a poor-quality one.
Side Note: Personally, I do not agree with the boy and his family either. But in the words of Voltaire:
“I may not agree with what you say, but I will defend to the death your right to say it.”
Force treatment in this case would be, as Orac points out, horrendously difficult both ethically and logistically.
Trying to change the parents’ or boy’s minds seems a likely fruitless endeavour.
The most efficient solution would be to allow the boy to die, and then sterilise the parents and prohibit them from further interaction with other people’s children.
A more pragmatic approach would be to allow the boy to die and then arrest the parents for manslaughter or, since they live in the USA, sue them in a civil case for “wrongful death”. Ethical arguments can be made regarding the “adding insult to injury” factor of charging parents for a crime after they’ve already lost their child, however it would perhaps provide a solid and useful legal precedent which could aid in dissuading others from following the same path in the future.
To all of you who are riding off this kid and his family as religious freaks: when was the last time you even opened a Bible, Qur’an, or Torah? Haven’t you noticed all of the completely ridiculous verses in there? Honestly, your hypocrisy is disgusting. Go ahead and disagree with the decision but stop acting like your religious views are superior.
riding off should be “writing off” in the previous post.
my mistake.
@LD-
You work in the field of science? Maybe you ought to stop working and have a look around you. You said:
“There are countless examples of drugs and treatments prescribed because they have proven to help, and yet we have no idea why.”
Doh! It is that ‘proven to help’ thing that makes it science based medicine. Science has not unlocked the secrets behind every door. But science is pretty damned good at differentiating between doors that lead to powerful truths and doors that lead to heaps of dung.
So what is your science? Political Science? Scientology? Enquiring minds want to know.
@94
In the most general of ways I agree with you,however;1. we’re talking about a child and whether parents have a right to functionally kill their child by forgoing therapy that has a greater than 90 % chance of curing their child.I’m not saying the choice is to force this, I’m saying that details like this matter in the decision making process. 2. We don’t know how much about how much Daniel knows about all of this; The freedom to make a decision between life and death should be predicated on the idea that all of the best and most accurate information is available.This would be the basis of making an informed decision. I think catgirl has it right, I think this can’t be forced but communication that should have been happening earlier didn’t, perhaps, and now needs to happen with all due speed.
correction–what I meant to say was that in the most general of ways I agree with the sentiment of the first sentence of the quoted statement.
Of straight up, no bullshit blog, I approve
I got a bit worked up while reading your post about thermodynamics and the body though. While skimming it I somehow first got the impression that you claimed it didnt apply. :S
Orac,
I’ve been very interested in these cases about minors who are choosing not to undergo chemotherapy and the legal/ethic dilemmas that arise from those decisions. After reading about the decision by the judge that Daniel Hauser has to undergo chemo, I did a quick google search to find out about the outcome of the other children who have made similar decisions.
Parker Jensen, the first case from 2003. He was diagnosed with Ewing’s sarcoma from a lesion in his mouth, and his parents were worried that he would become infertile from the treatment. The judge ruled that he had to undergo therapy and took him from his hme; the hospital relented and stated that they weren’t going to force him. He graduated last year. There was some debate about his initial diagnosis, and his family sued the state of Utah and Primary Children’s Medical Center. Those lawsuits were dropped.
Katie Wernecke. The last updated story was what you had reported. Looking at the Google News site, there is an article from a newspaper in Texas that mentioned a Katie Wernecke. It’s a town about 15 miles from where she originally lived and the pictures look similar. If it is her, she supposedly got an internship with NASA this summer.
http://www.recordstar.com/articles/2009/05/14/local_news/local03.txt
I can’t find any other updated information on Abraham Cherrix except what you had reported on in July 2008.
I know that people will jump on this as evidence that big bad government and those greedy doctors were wrong all along, the see, nature cures really do work, rather than the fact that they were all at least partially treated and damned lucky they didn’t die.
Julia:
Yup, that’s her. You beat me to it…I just emailed Orac that link. If you compare that photo with others of her, and considering the same state (TX), it’s gotta be her. No comments about her condition, but she says she wants to go into a medical career. Not sure what to make of that. A lot can happen in two years…
Y’know…
I’m not sure this would be welcome on Katie’s part, but…I bet we have a few Johnson Space Center folks hanging out here on Scienceblogs. I wouldn’t be surprised if we could find somebody who could just simply ask how she’s been doing…after all, she was kinda famous and we’re all mostly just concerned for her health, regardless of the mess surrounding it. But if asking scared her, that might ruin what’s presumably going to be a truly awesome week at NASA. Mm. Maybe not such a good idea.
Sedate the kid for months? Because that’s what you’d have to do to keep him from ripping out his port and otherwise sabotaging treatment. I can think of many things he might try, including eating before medical procedures so that they’d have to be canceled, not keeping still when necessary, etc.
What an absolute mess.
You know what: Kids die. From bad things like cancer or abuse, or from the sheer joie de vivre of running out into the street. Parents are ultimately responsible for keeping their kids safe, not society. It’s tragic and it sucks, but being alive doesn’t mean you’re guaranteed the right to a long or a healthy life.
Daniel got dealt a nasty hand: bad disease + stupid parents = highly probable bad outcome. The state does NOT have the responsibility to jump in like Superman and whisk the boy away for a treatment he’s been brainwashed to oppose. It may have the right, but it’s a waste of legal and medical resources.
This kid may well die. And I agree that posthumously prosecuting the parents for child abuse and neglect is an excellent idea (not to mention a good threat to hold over Daniel’s head to encourage cooperation). But if a kid says he’s going to bite the doctor and rip out his port, you know what? He’s not going to be a good patient.
There are many, many people out there who are trying desperately to get better, to follow the multi-drug regimens, to eat healthily, to exercise and use sensible co-modal alternative treatments IN CONJUNCTION WITH allopathic medicine. Let’s help them. Let’s inform and educate Daniel so that he can give actual consent. But then, let’s let him consent — or not — and move on.
Daniel is, because he’s a child, the focus of a lot of people who have a knee-jerk response to saving children with treatable diseases. I applaud the sentiment; I have two young children myself. But because life is not sentimental, we need to take a step back and realize that he may choose, stupidly, to shorten his life, with his stupid parents’ support, and that’s a tragedy, but WE need to take care of the people who need and WANT care, and move on.
You say, “With such a regimen, a boy like Daniel could expect a chance of long term survival of around 85-90%, possibly higher. Without therapy, Hodgkin’s disease is a death sentence.” That is complete and utter BS. DO YOU HEAR ME, HATERS? Nonsense. BS. A Medical Impossibility. NO cancer treatment – OF ANY KIND – has anywhere NEAR this kind of success rate. Millions of children and teens die from blood infections after chemo – and they are NOT counted as deaths due to treatment, rather from “a weakened immune system.” What a friggin’ joke…and the joke is on society.
Parents cannot – MUST not – be prosecuted for their choice to keep kids away from chemo.And for all of you judgmental SOBs who think you know everything, get a life. Take care of your OWN kids – let others do what they think is best for theirs.
Even PAC Ellen says, “we need to take a step back and realize that he may choose, stupidly, to shorten his life, with his stupid parents’ support,” – you know what – screw your patronizing nonsense. You built up a wonderful defense of individual rights only to ruin it with that nonsensical judgment.
THIS IS THE SLIPPERY SLOPE, people. The “State” already has CHOSEN to use anti-psychotic drugs – the most powerful of psychiatric medicines – on MILLIONS of kids in Foster Care. That’s “Child Protective Services?”
I support this family’s choice – without wavering – 100%. It is their legal right to choose what treatment is best – NOT the fricking STATE.
Larry T:
Evidence? Please give the journal, title, author and date of the paper where the data for your assertion is documented. Thank you.
Larry continues:
Does this include beating a 13 month old child to death (Amore Bain Carson) or performing an exorcism that suffocates a child with autism (Terrance Cottrell Jr.)? I just want to know if you consider children possessions or actual human lives.
More cases here: http://whatstheharm.net/children.html
Sleepy Eye? Must have been founded by a cyclops, which, in turn, would make all its adherents/residents mentally deficient. There’s your explanation right there!
$90,000+ for first treatment of chemo. approximatel 1 million treatments a day.doctors can lose their license if they go against state recommended tratments, the states may be recieving federal funds, which may be recieving campaign donations from lobbyists.besides it would be cheaper to give people a simple cure and not have returning customers. if there was a natural cure it would never be suppressed.that would be a conspiracy and mainstream media would definetly cover that. that cant happen in America, land of the free. we need to preserve everyones freedoms by forcing them to do what we believe to be right. if we do that to everyone we will definetly eliminate all stupid decisions and everything will be nice.
jim:
I’m sorry, honey, but 1 million treatments a day! You are really going to have to show some real documentation for your silly claims!
Oh, wait… you are just really drunk, right?
“The real culprit, of course, is a religion that rejects science and its fruits in favor of faith-based quackery…” This is a false statement. Not all religions and denominations within a specific religion reject science-based medication. However, the problem with science is those who practice it tend to reject anything, including treatment, which doesn’t fall within their subjective realm of possibility. Rather than actually “test” it, as science supposedly does, such treatment is simply brushed aside as “quackery.” The use of leeches was long said to be quackery but in recent years some scientists have changed their views and now say using leeches work for certain ailments works. Atheists like to say religious people are “indoctrinated” with messages that blinds them to reality but these nonbelievers are just as indoctrinated by a faith in science that blinds them to the failures and shortcomings of science and to the accomplishments and reality of that which falls outside their scientific world.
“The use of leeches was long said to be quackery but in recent years some scientists have changed their views and now say using leeches work for certain ailments works.”
Possibly the worst example you could come up with, if you wanted to show that scientists reject woo for subjective reasons.
Leeches were historically used, not for their localised anticoagulant properties, but for ‘balancing the humors’ (Galen) or ‘releasing the blood from deeper within the body’. The first claim has never been supported and has been massively surpassed in application by more modern models of wellbeing, the second is the exact opposite of how Hirudotherapy actually works.
Scientists went out to find out why leeches were believed to work (just as people have looked into butter on a burn, goose fat on the forehead for a cold etc), finally isolating it down to the exact chemicals and pathways involved.
In essence, scientists started changing their minds about leeches once some decent evidence started to come in, exactly how the scientific method is supposed to work.
While it is sad and potentially tragic, patients have the right to refuse treatment, no matter how much it is deemed necessary and supported by valid scientific evidence. Parents have the right to make the decision on behalf of their minor child. Quoting potential statistics doesn’t justify revoking a patient’s rights. Sure, it should compel them to make a smart and informed decision, but ultimately, that is an individual choice. Not to mention, I would probably be correct in saying that most people who support this court-ordered chemotherapy on the basis of saving a child’s life are acting on religious motives themselves, but dismiss the actual patient’s beliefs. Maybe their religion is “quackery.” That isn’t for anyone else to decide. Perhaps Colleen Hauser and her family are idiots and fools. It’s irrelevant. Claiming that she is supplying her son with a death sentence is neither wholly accurate nor morally compelling (maybe it is statistically accurate, but that is still misusing the statistical mathematical sciences to push a specific agenda). It’s much more simple. If a human being does not wish to be irradiated or to have cytotoxic chemicals pumped into their bloodstream, you cannot (or, rather, should not) force them to do it, no matter how tragic the outcome. And finally, equating poor medical decisions with abuse or even neglect is a dangerous thing to do. It creates nothing less than a slippery slope for every single person who seeks medical treatment.
You do realize, russel, that the slippery slope argument is almost always a logical fallacy:
http://www.nizkor.org/features/fallacies/slippery-slope.html
http://en.wikipedia.org/wiki/Slippery_slope
http://www.fallacyfiles.org/slipslop.html
http://www.don-lindsay-archive.org/skeptic/arguments.html#slippery
http://www.onegoodmove.org/fallacy/ss.htm
For a slippery slope argument to be viable, one has to provide very compelling, concrete, and specific evidence and reasons why one course of action is very likely to lead down the “slippery slope” to the horrible outcome you are trying to scare people with. (That goes double for you, LARRY T.)
As for your “parental rights” argument, do parents have the right to starve their children to death because they think it will make them healthier, for example? Do they have the right to beat their children to within inches of their lives in the name of discipline? In other words, are children their property, with which they can do anything they like? Your argument, in which parental rights trump all else, seems to embrace and defend all of these examples.
mike, do even bother to read the blogs where you post your idiotic spam?
to all who hold chemo and radiation so high………..go read about it at the john hopkins site. not 1 child ive personally known of with cancer is alive today. all had chemo and radiation. my nephew’s bones crumbled from the radiation. “cancer treatment” kills millions of people every year. the language of the doctors say it all. eg: “may” help, ” could “bring about a remission….nothing is for certain because the only known “fact” is that they don’t know anything “for sure”… with that in mind………..i would never let them use a loved one of mine as a experiment……..which is why they ask everyone to join their trials…….where is the hypocratic oath gone…doctors? first….”DO NO HARM”.