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The case of chemotherapy refusenik Daniel Hauser: I was afraid of this

Maybe I was wrong.

I praised the decision of Judge Rodenberg last Friday, in which he placed chemotherapy refusenik Daniel Hauser in the custody of his parents and ordered them to take him to an oncologist and have him undergo repeat staging studies in order to determine the extent of his Hodgkin’s lymphoma. I did mention my one reservation was that leaving Daniel in the custody of his mother did run the risk of their fleeing to avoid the court order. Unfortunately, shades of Katie Wernecke, that’s exactly what they appear to have done:

Daniel Hauser and his parents, Colleen and Anthony Hauser, were to appear in Tuesday in the southern Minnesota city of New Ulm. A judge had ordered the boy to undergo a chest X-ray to see how his Hodgkins lymphoma was progressing.

But only Anthony Hauser appeared in court. He testified that he last saw his wife and son on Monday morning.

He said his wife told him she was going to leave and “That’s all you need to know.”

This is, of course, disastrous for Daniel, as there is no way of knowing how long it will take for child protection authorities to find them. Meanwhile, his tumors are growing. It also makes me wonder if Anthony Hauser agrees with his wife and her decision to support Daniel’s rejection of chemotherapy, given that he didn’t go with them. I’m having a hard time deciding if he’s an accessory or simply unable or unwilling to challenge his wife on this. Either way, the path is clear now. When Daniel is found, now there will be no choice but to take him the custody of his parents.

My only fear now is that the Judge will broker some sort of dubious “compromise,” as was done in the case of Katie Wernecke, allowing her to travel to Kansas to undergo high dose vitamin C therapy, or Abraham Cherrix, who was allowed to accept a highly questionable and dubious form of “immunotherapy” in addition to radiation therapy and instead of chemotherapy.

ADDENDUM: More details have come to light:

Dr. James Joyce, the Hauser’s family physician, testified today that he had taken an x-ray of Daniel Monday, which showed that his tumor had grown back to its original size.

Joyce said he gave Colleen Hauser the names of three oncologists, but she declined to take them.

Judge Rodenberg has issued an arrest warrant for Colleen Hauser and ordered that Daniel be put into foster care and immediately evaluated by a pediatric oncologist when he is found.

It doesn’t look good for Daniel. Precious time has been wasted, and his chances of survival decrease the more time passes and the larger his tumors grow. It’s quite possible that, if Colleen can avoid the law long enough, it won’t matter what treatments Daniel has any more. His tumor will have grown too much. Not will his chance at a complete remission decrease, but it could end up requiring a much harsher treatment, a bone marrow transplant, to achieve it.

Of course, if Daniel dies, the alt-med enablers who facilitated his death will blame the initial course of chemotherapy and the stress of the court, rather than admit that their woo doesn’t work and they led him to his death.

Orac’s commentary

  1. Another child sacrificing himself on the altar of irrational belief
  2. Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
  3. Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
  4. Mike Adams brings home the crazy over the Daniel Hauser case
  5. The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
  6. Chemotherapy versus death from cancer
  7. Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
  8. An astoundingly inaccurate headline about the Daniel Hauser case
  9. Good news for Daniel Hauser!
  10. Daniel Hauser, fundraising, and “health freedom”

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

186 replies on “The case of chemotherapy refusenik Daniel Hauser: I was afraid of this”

The father may be staying around to take care of the other kids. So he might well be in full agreement. Too little information to tell, really, since he’s been so silent up till now.

scott, good points. daniel is only one of 8 total kids and a dairy farm that his parents are responsible for. having 10 people on the run and no one tending the cows probably wasn’t an option.

this is extremely disturbing. if this contributes to daniel’s death, i feel his mother should be tried for criminal negligence and any other charges that could possibly stick (and the father for whatever role he is actually playing here.) this is terrible.

Sigh. Alas, the judge probably knew this would happen, but probably also felt that the family might have a good enough (and unscrupulous enough) lawyer to be willing to fight having Daniel taken from them — which in itself would delay his treatment.

That’s what I was thinking too, Scott–much easier to go on the lam with two than with ten.

The attitude of the parents here is baffling and enraging. I weep for this poor kid.

Phoenix Woman – in this “… (and unscrupulous enough) …” I think you meant “scrupulous”. Apparently Daniel’s court-appointed lawyer had now suggested custody be turned over to the state (obviously when the boy is found). Without evidence to the contrary I’d say the woman did this without telling the lawyer. It’s time for me to stop typing before I write what I think of her.

Strib has a more complete article now:
Arrest warrant issued for mother of boy resisting chemo

The boy did actually make his scheduled x-ray appointment yesterday, it turns out — the oncologist involved appeared in court. Sadly, the tumor has grown back to its original size. When he observed that, he gave the mother three names of oncologists, but she refused to take the list.

it’s pretty telling that the star-tribune has no comment section available for this story. no matter what opinion someone holds about what should be happening to this boy, everyone is angry.

i wonder how long it will take to find them?

Something has to be done on a larger scale to prevent this sort of thing. Kids all over the country are not being vaccinated, being stuffed full of echinacha (sp?), and a myriad of other herbs, vitamins and so on. They are being taken to naturopaths, acupuncturists, shamans and all manner of completely unorthodox “therapists”. They are being taught to distrust doctors, pharmaceuticals and hospitals. Parents have rights, of course, but this is becoming dangerous in a number of ways. 1) Children could be harmed by mega doses of substances 2) They could be prevented from getting necessary treatment which could lead to serious illness, or death; and 3) They are putting others at risk, such as children who cannot have vaccinations for bona fide medical reasons–who will be totally exposed when there are outbreaks of diseases in unvaccinated communities.

This isn’t inclusive or terribly well-written, but I think the main point is worth pursuing. We cannot just sit here and express concern over Daniel’s situation (which is now in the hands of the police!), we have to begin to formulate a more formal response to this entire phenomenon. I’m not panicking, but I AM deeply concerned and have been for some time, which is why I read this blog and JREF’s and listen to QuakCast. Maybe I should stop?

I was afraid of this too. But the judge gave them every chance to cooperate, so no one can criticize the authorities now for being too heavy-handed with this family.

I second what Scott said. Dairy cows have to be milked once or twice daily, seven days a week. According to Daniel’s testimony earlier this month, the mom and the two oldest girls helped with the milking – so apparently they don’t have a hired hand on the farm, and they have 100 head of dairy cattle. That’s a lot of cows to care for.

The seven remaining kids are ages 16 years to 16 months. So the mom has basically abandoned a toddler, not to mention all the other kids. I wouldn’t be surprised if they lose custody of some of their other kids as well.

Having had a non-Hodgkins tumor in my chest, I know what’s likely in store for this kid if his disease progresses. The sense of suffocation from the SVC syndrome was overwhelming; I’ll never forget it. I was so sick that the chemotherapy was actually a relief because it made me feel better.

Up until now I had a fair amount of sympathy for this family. Not that I agreed with the horrendous decisions they’ve been making, but I could understand a little bit how they might feel. Going on the run, though – that’s pretty much eradicated any sympathy I had left.

Won’t she have to take him to a doctor at some point to have the port flushed? When I had a port-a-cath, they were EXTREMELY strict about having the port flushed with heparin every 30 days, even when I wasn’t using it (that is, I had to have extra appointments just to have it flushed). This was to prevent dangerous clots. The boy has already had some sort of blood clot. I don’t know if that means he’s prone to them or if it was just a circumstantial thing, but even if the cancer won’t kill him immediately, if I were his mother, I’d be worried about having a dangerous blood clot. OTOH, I’m not a doctor. But I was certainly under the impression that a port can cause a lot of problems if you don’t take care of it + see a doctor.

I’m not sure that it’ll be that hard to find them though. Without substantial cash reserves, it’s hard to go somewhere where no one will find you. Family + friends are easily located, their phone records can be tracked to see who she called, and as soon as she uses an ATM or credit card, the cops will know. Of course, that assumes that someone in the PD is taking this seriously.

P.S. Orac, the dad is indeed an accessory. He knew last night already that she and Daniel were fleeing, and he did not notify the authorities.

A thirteen year old girl wants an abortion – it’s a choice. A thirteen year old boy does not want chemo – it’s not a choice. A bit of a disconnect. What happened to ‘it’s their body’. Chemo sometimes works, but it is poison – and every person should be able to choose it or not. It definitely should NOT be everybody else but that person choosing.

Because you would try it or try it on your kids does not make it right for everyone else. Has freedom been trumped by medical nazis in your part of the country. Doctors are smart but not smart enough to take away your decision making.

Wow, Lee,that’s a pretty radical position to take. You would allow a thirteen year old boy, illiterate by some accounts, to substitute his judgment in place of the unanimous panel of doctors? You call the doctors and authorities “medical nazis?” Your attitude is nearly as chilling as the story.

A thirteen year old girl wants an abortion – it’s a choice. A thirteen year old boy does not want chemo – it’s not a choice.

Actually, I’m probably going to get into huge trouble by saying this, but I have serious problems letting 13-year-old girls choose to have an abortion without parental permission if they want it.

Lee, technically the 13 y.o. girl could not consent to having sex in the first place because of the failure to comprehend the consequences. A 13 y.o. boy brainwashed by his mother has little “choice” either. He also has limited capacity to understand the consequences of refusing treatment. He is essentially having sex without a condom to treat his cancer. It’s dangerous, and apparently ineffective as has been demonstrated by the regrowth of his tumor.

If he fully understood the consequences and chose to die, that would be one thing. But he does not believe he is sick and believes that the chemo is hurting him. Evidence says otherwise. No, this child is not making an “informed choice”, neither is his mother. In the eyes of the law a child’s welfare is paramount and that is why the decision was made in court to have him treated. TO SAVE HIS FRIGGING LIFE!

Robert, what do you call people who want to practice medicine on unwilling patients? This thirteen year old may not be too good at evaluating the odds, but the fact that the odds are better with treatment just makes it seem not to be a gamble. If the chances were .01% vs 00% where would you come down in that experiment. I guess you and most of the commenters here are competent to describe just where the line should be. You are empowered by your compassion. There were many valuable medical discoveries made by the nazis, but we are not happy about how they were obtained. You want to remove consent from the medical equation. I like freedom. And by-the-way, I also like oncology and wish that we had spent several trillion dollars on that instead of pouring it into the sand.

I would say my most hated cancer is ovarian cancer. Note that about 1,500 women were killed on 9/11 and we have spent the previously mentioned trillions on revenge and prevention. Every year 15,000 or so American women die of ovarian cancer – so likely over 100,000 since 9/11. I don’t note anybody here crying about that moral dilemma, just about imposing their will on one little boy who wants to suffer in peace.

Lee,

Freedom is awesome. But a brainwashed little boy dying of a curable disease is pretty goddamn not awesome. There is no relevant reason for bringing up 9/11.

Lee, this “You want to remove consent from the medical equation” is an incredibly stupid statement. Consent can be given when someone understands the issues, something this young boy (and apparently, you) cannot do.

A pretty good movie to watch is Judgment at Nuremburg. One of the interesting issues raises was wether people judged incompetent could refuse consent to be sterilized. They perhaps had a wider view of incompetence, but the issue is still the person vs the state. Consent is the right to say no as well as yes. You can make his decision for him because he is not competent to make the RIGHT decision – we’ve been down that road before.

You want to try to save someone who wants to be left alone.

Also note that curable in this case means curable sometimes and at a heavy toll. It’s touching how your compassion overides their choice. What gives you (us) the right.

I don’t note anybody here crying about that moral dilemma, just about imposing their will on one little boy who wants to suffer in peace.

Lee, the boy doesn’t want to “suffer in peace” — he wants to live, but he is convinced (erroneously) that new-age woo will save him and that chemotherapy will not. I support the idea of dying with dignity; however, this boy (and his parents) are pursuing a course that, unless they are stopped, can lead only to death and indignity.

~David D.G.

“Judgment at Nuremburg” combined with a slippery slope? Wow. You lose, Lee. Epic fail.

As others have tried to point out, it’s pretty clear that the boy does not have the legal capacity to give or withdraw consent.

lee-

the problem with your arguments is that this boy does not want to die,death is not his choice. he wants to LIVE, but for reasons that are probably related to a combination of his age, the information provided to him by his mother and her nemenhah faux-native herb seller friends, and a possible severe learning disability/physical brain problem (the circumstances resulting in him not being able to read the word “the” at age 13 are not totally public at this point, but point this way) he CANNOT understand that refusing his chemo is helping him DIE. you seem ill-informed of the details of this case.

p.s. borderline godwin fail.

Lee says:
Also note that curable in this case means curable sometimes and at a heavy toll.

Actually, curable for non-Hodgkin’s lymphoma caught early enough and treated with chemotherapy is something like 90%. The chances of it just going away by itself? More like 0%.

Chemo = unpleasant, but you live 90% of the time
No treatment = unpleasant, and then you die

Lee, I think you are mistaking the concept of “informed choice” with “any choice”. Daniel has 2 choices: to get treatment and live or to refuse treatment and die. (Note: His recent scans show that his tumor has grown, indicating that whatever he has been doing instead of chemo is not working.)

Daniel *thinks* he is making the choice to live. If he was choosing to die, that would be one thing, but he is not. He is making an ill-informed choice and he will pay for it with his life and his mother will have to live the rest of hers knowing that.

FYI, Lee, suicide is illegal in most of the US (and still debatable in the others). Even if Hauser was informed and competent, he cannot lawfully choose to kill himself — his current decisions have been tantamount to doing so.

You are correct that I am likely wrong to say he wants to ‘suffer in peace’. All I can really deduce is that he does not want the treatment – he tried, did not like it, and refused more.

He has revoked his consent, and that is obviously not good enough for most people here. He probably will die, and his decision is probably poorly conceived. I suppose I should be inspired by the faith shown in our government to do the right thing, but I am not. When it comes your time to choose, be sure you make the right choice, because you might not have any other choice.

I haven’t made the slippery slope argument, but what do you call the mob action that led to nazism in Germany. There were competent people there who were run right over after they did the ‘incompetent ones first. There is price for freedom, and that price is that sometimes people make bad choices, and are ALLOWED to.

… I have serious problems letting 13-year-old girls choose to have an abortion without parental permission if they want it.

Unless you consider childbirth a non-life/health-threatening situation for a 13-yr-old, or the supernaturally-based “reasoning” of the anti-abortion movement superior to that of woo-mongers, your position is (at the least) inconsistent.

Oh I dunno, Orac…as a pro-choice liberal I think I agree with you. If nothing else, I think we wouldn’t allow a 13-year-old to undergo an identical medical procedure–sans fetus–without permission. Note that I think Lee’s choice of that example was rather extreme anyway, and aimed at changing the subject.

lee: All I can really deduce is that he does not want the treatment

well, then either you haven’t tried very hard, or your own reading skills may be impaired.

start with these articles, be sure to click through to the second page of search results and keep reading so you can “gather” the relevant details. making arguments while remaining ignorant is inexcusable. and lay off the godwin fails.

http://pd.startribune.com/sp?aff=3&keywords=daniel%20hauser

Lee, it would be one thing in the boy in question had reached the age of legal majority, but he hasn’t. In the eyes of the law he is still a child, and that is how his case is being addressed. The courts have tried to act in the best interests of a scared but very ill little boy. Yes, they ordered treatment, but they have tried every option for making it as little onerous as possible for him. Now, because of the actions of his parents and possibly his oldest siblings, when he’s found, he will likely be taken from his family in order to be treated (as much as they can try to treat an unwilling patient for cancer) causing no small amount of emotional distress and harm. The issue is not one of “they’re taking away his medical choice”, at least not anymore. Your repeated references to Nazi rhetoric don’t change in any way the fact that the parents have been at the very least medically neglectful because they got scared too. Hell, cancer is scary; cancer and chemo, no matter what your age is scary. Does that mean that you shouldn’t get treated or that you should try any and everything you can think of before you go to your doctor and get yourself treated? No, it does not. Does that somehow take away your choice? No, not unless your idea of choce is narrowly defined as “I don’t like going to the doctor, therefore I should be able to shill herbs to cancer patients regardless of thier effectiveness”. The damage has nothing to do with a fascist desire to control the healthcare choices of this little boy’s family. If they want to give him honey and lemon for a sore throat, fine. But this is not a sore throat, it is a terminal (if left untreated) illness. Would you be so sanguine about thier choice to not see a doctor if the poor boy were walking around with a badly broken arm that had a band-aid stuck on and a lucky charm tied to it? That’s the same kind of thinking that we’re all having such a problem with.

And for those of you who have a problem with Orac’s comment about abortion for young teens, I see no real inconsistency there. There is precious little that a 13 year old of either sex should be doing without thier parents knowing at least some details, medical treatment especially. Unless there is some specific reason to not inform the parents, as in cases of incest or abuse…I agree with him.

RE Lee’s successful (here anyway) attempt at changing the subject.

You cannot assume that a thirteen year old who gets pregnant is in a safe living situation and has a really good relationship with her parents. There are situations where requiring a girl to get her parents’ permission would place her in danger. (Not all parents of pregnant thirteen-year olds eschew violence.) Delays are critical: if the parents are difficult to find or talk to, then being required to find them and gain their consent might be an obstacle to obtaining an abortion.

Abortions are safer than childbirth, so there is no compelling reason for the state to endanger a young girl’s life by making legal abortions particularly difficult to secure.

If you want your daughter to come to you if she becomes pregnant, I understand and I think anyone would.

But I don’t think you would want your child to interrupt her education to bear a child she didn’t want, perhaps conceived with someone she didn’t like, endangering her life, because she was afraid to come to you. That is one of the many reasons you foster a relationship with her that does not include fear.

Not all parents do that.

I haven’t made the slippery slope argument…

You can make his decision for him because he is not competent to make the RIGHT decision – we’ve been down that road before.

Sure. Whatever.

I just heard the Hausers’ lawyer on the CBC’s ‘As It Happens.’ He knows (by his own admission) nothing about the putative alternative medicine Daniel is getting or the putative beliefs that are in play. It’s a very creepy interview.

Lee, the parents are abusing their child by medical neglect.

Your Nazi analogy falls flat. You should be ashamed of yourself.

You should be, but you probably aren’t.

Let’s see how your moral compass deals with this. Is it ethical for someone to lie about a claim to Native American heritage in order to commit fraud by selling fake medicine to your fellow new age cult members?

Is it OK to just say that these people are making their own decision regardless of the fraud committed against them?

How about if it is a 13 year old kid who is unable to seek out his own information, due to an inability to read or travel away from the family farm, whose only link to information on health care is his mom?

This isn’t about a kid who is unable to make his own decision, and in return will be gassed or sterilized, but instead given a treatment that has an overwhelming chance of saving his life.

I feel conflicted about thinking and saying this but I’m beginning to wonder if the parents of this child actually want him to die.

Well I read those very long documents. It seems to me that Daniel knows what he is talking about. Is he incompetent? No. Is he lacking full information? Almost surely. BUT – when any ordinary person weighs cancer choices they are facing less than full information – we just don’t know it all – and can’t. It doesn’t seem to me that religion played much part in his decision. He doesn’t want to get sick again, and that turns many an adult away from chemo, and he fears a deadly side-effect, the blood-clot. It seems to me he is capable of making this decision – and he was certain. Also it is mighty condescending to think that someone who can’t read must also be incompetent. Do I think he is making the wrond decision? Yes. Do I think I can or should force him to accept my better decision? No.

Robster: fraud is wrong. But the people who are defrauded are not doing wrong. They may be making a mistake. I would not prevent people from buying fake Indian rugs, or snake oil, or laetrile. When you say that this is not about being sterilized you must be forgeting that that can be side effect of radiation therapy which is often used on more advanced lymphoma. I wonder if he’s been given full information about all those side effects and others like secondary tumors and increased lifetime risks of other tumors. He will likely die without the treatment, but most people I know who have died of cancer, died after quitting chemo, it’s a choice. It is their choice not ours.

Please consider this scenario: a 13-yr-old comes to your medical office with a dangerous condition, one within your competence to treat with a high degree of confidence of success without complications.

This child explains that her parents violently insist she be treated only with qabalistic incantation and communion wafers, and begs for your medically-proven techniques instead. She also has cash in hand for your standard fee for such treatment, and all other necessary prerequisites.

As a licensed professional, of course, you have little choice but to follow the laws of your state and nation. But before you reach for that legal reference to find out – what would you rather have those laws say?

I would like to have the boy’s educational situation investigated also. The boy is 13, homeschooled and illiterate? What is going on with this? That mother is failing this child all around. Where is the school district? Homeschooling is supposed to be monitored. This poor child cannot read or write. Can the parents? Maybe this is even worse than it appears.

Lee,

The court found him incompetent. His illiteracy isn’t being mocked. It is, however, a sign that he cannot seek out outside information.

The choice you are supporting is a false one. The kid isn’t making the choice. Hes scared. His mom is scared. And by making these decisions based on emotion, the child is being abused through medical neglect.

I get your point about sterilization, but you know what else causes sterilization? Death.

@Lee: I pinged earlier a post I wrote especially for you 🙂 read it. You don’t seem to understand enough of the medical ethics/law to have a clue what you’re talking about.
Please note that this is not a courtier’s reply. It’s a speciifc, legal question, about informed consent.

…being sterilized you must be forgeting that that can be side effect of radiation therapy

Yes Lee, use your immense medical knowledge. What IS the incidence of sterilization after radiation therapy for lymphoma?

I wonder if he’s been given full information about all those side effects and others like secondary tumors and increased lifetime risks of other tumors.

And how increased is that risk of other tumors? How likely are these risks, when compared to the likelyhood that he will die, a painful, suffering death if he doesn’t receive chemotherapy at all.

Incidentally, you can wonder, but I promise he or his mother has been informed in detail. It’s part of the consenting process for chemotherapy.

Thanks for the nice article on informed consent. The legal case is over – I am not arguing it. I am saying it is wrong. Anyone should be able to turn down a good deal, even if he doesn’t know how good of deal, even a life-saving deal. People should not have to do what you think is right just because you know more. They may have to, but that doesn’t make it right. Keep extending your power over others, it’s the most wonderful drug of all.

From your note:

Incidentally, you can wonder, but I promise he or his mother has been informed in detail. It’s part of the consenting process for chemotherapy.

I agree, and if it is so how can he not be informed? Can you have it both ways? I guess so. He was informed, he rejected consent, and you want to say he has to do it anyway.

lee-

well i’m glad you chose to read the “informed consent” educational piece. it was nice of you to try to look at all provided opinions.

but i cannot quietly accept that you feel “Anyone should be able to turn down a good deal, even if he doesn’t know how good of deal, even a life-saving deal.”

because that is basically saying you’re cool with people dying for no “great cause” other than simple ignorance. and not ignorance amidst a culture where everyone is equally ignorant and no other options have yet been presented, but ignorance as an island in a country and culture where other options are known and widely practiced.

you seem to want to champion one’s right to make one’s own decision free of coercion, and that seems superficially very honorable. what i cannot understand is how you construe making a choice in ignorance to be a genuinely free and true choice.

let’s use a little parable:

pretend you are a father of a sick daughter. she has a terrible cough, with blood coming up. so your local wise man tells you the only way to cure her is for you to sacrifice yourself to the goddess of fertility, then the goddess will take pity upon your daughter and save her. so, being a loving dad, you do it. now you’re dead and gone. whether your child is healed is unknown to you.

would you have made that same choice if you knew that a village 5 miles away had learned to cure that same cough with antibiotics (but the didn’t tell you because of a tribal rivalry)? can your choice to die for your daughter -which may or may not cure her, but will surely leave her without a parent- really be construed as a totally free and informed choice?

this is about more than “legal cases,” it’s about people dying from ignorance when other knowledge was available in their own contemporary societies. surely you don’t think people should not be given and seen to really understand all relevant facts before they make life or death decisions?

and daniel hauser DOES NOT possess all the relevant facts. so how can you say that leaves him “free” to really choose?

dying to promote the “noble right of willful ignorance” is never a worthy death.

willful ignorance shouldn’t be celebrated in any functioning society. when it is, and by the majority, that society is guaranteed to be on the brink of total social (and perhaps physical) total collapse.

think on that, lee.

meg:

I would like to have the boy’s educational situation investigated also. The boy is 13, homeschooled and illiterate? What is going on with this? …. This poor child cannot read or write. …

In other reports is was noted there issues with his birth, which had complications and there may have been loss of oxygen. He is learning disabled, and even if he lives to be an adult he may never learn to read.

His lack of literacy may not be related to the homeschooling, but to his own birth related disabilities.

I have an adult child with a severe learning disability, and some other issues. He has a fantastical view of the world and explaining points of reality can be frustrating. Even though my son can read, I would not consider him competent in making certain decisions.

One makes the best choice they can based on the information they have and THEIR estimate of its value. Are you going to feel any remorse if Daniel has the chemo and radiation and dies anyway, or will you know you did the right thing making him do it your ‘better’ way? And beyond that: suppose Daniel escapes the treatment and LIVES. Will you be unhappy at one of the five percenters providing anecdotal evidence for resisting coercion?

Medical treatments work a lot better when the patient believes in it. If Daniel asked me what to do, I would say do the chemo; it’s your best chance. But I would not take him a gunpoint down to the hospital and make him. When the government makes you do something, you don’t always see the rest of us holding the gun, but it’s there. Because you are sure of the compelling interest you don’t mind using that gun, I on hte other hand think the gun itself is bad and think government power should be resisted every time.

Check out the most ignored of the Bill of Rights: the 10th amendment. The power to choose one’s medical care is surely not one of the enumerated powers of the state and should, but no longer does, remain with the people. You can pick virtually any liberty or right you think we have and see it slipping away. (to those who know better)

lee,

i see you are “libertarian or die” and i cannot talk you out of it.

it is very sad that you would condemn a child to death to prove your personal feelings about government.

it’s nice to support beautiful ideals in theory, but putting them into practice is always messy, because human lives are always messy.

my last question: what makes you think this kid should die, ill-informed and without real choice, just so your theoretical ideals of a perfectly “free” society can live on in your own head?

you are suffering from a great and terrible hubris my friend. it is scary that you would make martyrs out of ignorant children for it.

You’re one helluva one-trick pony, Lee. Yeah, self-determination for all, above all, at any cost, at any age. We get it. Now unless you have anything else to say…

Luna,

Because I don’t compel does not mean I condemn.

I would hope that Daniel lives, whichever path this actually goes down. I wish he had appealed, won the right to choose, and I think he had a chance, particularly if he could have delayed till he was older, and then if he still needed it – chosen the chemo. Now he’s going to be hunted down like dog, and treated like a rat in a cage. His family is probably ruined by the good intentions of others, but it’s for the best.

Science as religion is still religion, and compulsion is the hallmark of religion. Freedom is the antidote, not the poison.

Lee:

I wish he had appealed, won the right to choose, and I think he had a chance, particularly if he could have delayed till he was older, and then if he still needed it – chosen the chemo.

He would not even know what to choose considering his learning disabilities. You do not seem to understand that this particular child is not competent to make any decisions.

Waiting until he is older will not help. My son is twenty years old and while he could read when he was thirteen, but is still severely learning disabled. This is a choice my son cannot make, and making a wild ass guess based on my experience with a child who has severe learning disabilities, Young Master Hauser would not be able to make competent decision even if he were twenty years old.

Unless Daniel Hauser is found and given some real information and real counseling he has been condemned to a horrible painful death. His mother has shown complete incompetence in dealing with her disabled child. Instead of helping him through the painful parts of his therapy, she enabled his death.

My son does have some other health issues that require medical intervention. He presently complies because it just requires a daily pill and an annual checkup. If were something that caused pain I could see him balking and not wanting to go. But, as his parent I would be encouraging to go, begging him to comply, and giving him all the comfort I could. I would not be going into hiding with him.

I am reading between the lines here, but the latest Star-Trib report says Mrs Hauser’s attorney, Susan Daya, accompanied mother and son to their doctor’s appointment Monday morning. The family van is still at the farm, so someone picked up the Hausers. The court could not reach either Mrs Hauser or Daya on their cell phones.

Daya is a member of Nemenhah. She also goes by the name Susan Daya Hamwi. Putting two and two together suggests Daya is the transporter.

From the Star-Trib:

Joyce said he was ready to set an appointment for Daniel with an oncologist, and recommended doctors at Children’s Hospital of Minnesota, the University of Minnesota or Mayo Clinic, but Colleen Hauser declined.

He said he also tried to give Daniel more information about lymphoma, but that his mother and a woman accompanying them — who identified herself to the doctor as California attorney Susan Daya — left in a rush, saying they had “other places to go.”

I bet they did. Woo-ville.

But Susan Dey was such a good lawyer in LA Law!

What sanctions are there for a lawyer who assists a client in contempt of court?

wheatdogg!

i emailed jon tevlin of the star-tribune directly about this case’s nemenaha links (and the truth about landis) before he published his first column about it. he emailed me back several times in correspondence. i directed him to your first blog about it, in addition to several other links (like ‘feminist mormon housewives’). he may well have found all my links on his own, but i’m sure he wouldn’t disregard any new input on the recent developments.

i encourage you to do the same (if you haven’t already) if you feel you have any further information about it. he seems to be the one in the MSM most committed to exposing the woo aspects of this terrible situation.

here is one of his more recent columns on the issue:

http://www.startribune.com/local/45190127.html?elr=KArksUUUU

Lee, can I assume you’re against any age of consent laws?
If a 13 yo can refuse life-saving therapy (without that his chances are less than 5%, btw) then what sense does it make that he can’t drink, a decision with far less immediate consequences? Or smoke. Or have sex.

Most western jurisdictions, afaik, do not forbid the minor to smoke, drink or have sex. Rather they ban the sale, providing or furnishing of alcohol and tobacco to minors or forbid the adult to engage in sex with a minor. There is no legal sanction pre se for the minor. Rightly so, I think. The age of consent laws are there to protect the minor, not criminalize her/him. It is the responsible adult who faces criminal sanctions.

The fact that a 13 year old can, if found capable of discernment, refuse medical treatment is inherent in an individuals exercise of hers/his fundamental rights. The limitation on drinking and smoking is not a very incisive cut of an individuals autonomy, whereas imposing health care and or religious choices is.

He is going to die from this disease, and likely in the next 6-12 mo in the most optimistic projections. Unless he somehow is one of those one in a trillion spontaneous remissions. Which is sad because he had a better than 50% chance of long-term survival with timely treatment initially. At this point, with regrowth and further delay in treatment, maybe the merciful thing to do is let him die at home with his family.

Dragging this through the courts while he’s dying is not particularly merciful.

I’m curious Orac, since you brought up the subject:

My children made themselves known to their mothers in the first trimester. Bonding was strong. The ones that were lost to miscarriage were mourned. If someone had caused a miscarriage (say they attacked the pregnant mother), it would have felt like murder of my child. How can a conscious decision by the mother to end the pregnancy be so different?

So…the father has got rid of his crazy wife…and disabled son in one fell swoop.

Anyone should be able to turn down a good deal, even if he doesn’t know how good of deal, even a life-saving deal.

For instance that two-year-old with a life-threatening infection should be able to refuse the antibiotics that will save hir life because, you know, we have to respect hir right to say NO!!!

Thanks, Luna. I also emailed the Star-Trib, and right now it is my best source of information. I have read Tevlin’s columns, and he’s spot on the Nemenhah Band’s sketchy background.

I wish the other MSM would get on the bus and also expose the bogus Native American religion the Nemenhah Band expouse. Real Native Americans do not need this kind of negative publicity. Colleen, Daniel and Susan Daya Hamwi (if it is indeed her) better stay away from any rez.

He was informed, he rejected consent, and you want to say he has to do it anyway.

NO, he was not “informed”, he was told. BEING told does not constitute being informed. You just said you read the post on informed consent. One must actually understand to be informed.

In real life, if I was consenting you, me giving you all the information doesn’t mean you are informed. You must be able to repeat the information back to me (without word for word parroting!). I promise, Hauser couldn’t do that.

It would appear that your political glasses are coloring your ability to think critically in any other situation. Libertarianism is just anarchy for adults.

“which showed that his tumor had grown back to its original size.”

They’re “treating” the kid since February with their quackery and still the tumor grew back to its original size (before chemotherapy). Shouldn’t they realize that it’s not working?

I can imagine that someone is so taking in by quacks that he/she stops chemotherapy and tries an alternative “treatment”, but I just don’t get how they continue to believe in it even when they’ve got proof that it’s not helping.

Lee, you must be one of the “libertarian means never having to think” folks- first with the asinine nazi crap, now the “the kid was informed” bullshit. After all that, your statements about hoping the boy survives don’t ring true.

“Are you going to feel any remorse if Daniel has the chemo and radiation and dies anyway”
Remorse, as in feeling bad because giving him the chemo was a bad thing? No, because that is is best (only, realistically) CHANCE for survival. I haven’t seen anyone say it’s a sure thing. Sadness if he were to die? Yes.

“or will you know you did the right thing making him do it your ‘better’ way?” I’d know we gave it the best shot.

“And beyond that: suppose Daniel escapes the treatment and LIVES. Will you be unhappy at one of the five percenters providing anecdotal evidence for resisting coercion?”

I’d be thrilled if he were to live, and would be just as sure that it had nothing to do with the “anecdotal evidence” crap carrying any weight.

Quite the imaginary world you live in Lee – a sad, stupid one, though.

FWIW, even though Lee’s language is hyperbolic, I think from a human rights point of view this is not so clear cut. I have some reservations about this…

Let me state first of all that Hauser’s parents are total assholes and there is zero justification whatsoever for what they are doing. They’re choice to discourage their son from getting chemotherapy is morally and ethically indefensible.

That said, I am not 100% sure how I feel about the state mandating a medical treatment, even for a minor, when there are not other people being put at risk (as opposed to if he had a contagious disease). I am not saying I think Hauser is fully capable of informed consent, no no no. But if his parents say they don’t want it, and if he says he doesn’t want it (even if that is a result of parental brainwashing), then I feel that it may be going beyond the boundaries of what gov’t ought to be doing.

I think that allowing families to “opt-out” of mainstream systems is an important check on the potential for the mainstream to go awry. In a sense, it is strength via diversity. For instance, it is very important to allow private schooling and homeschooling — even if a disappointing fraction of those who are homeschooled are indoctrinated with fundamentalist or wooist belief systems — in order to prevent any possibility of a tyrannical government using public schooling to indoctrinate children for a self-serving purpose. (And if you don’t believe there’s any risk of America ever having a tyrannical self-serving government, see also the last eight years) The cost of letting parents make sub-optimal (sometimes extremely sub-optimal) decisions for their children is weighed against the benefit of protecting parents from sub-optimal government-mandated decisions.

Okay, before I get totally flamed, let me reiterate again that I’m ”not sure” how I feel in this case. Absolutely none of the “opt-out” rationale I mentioned above has any practical application to the Hauser case at all. Here, the “strength in diversity” argument falls apart because we can scientifically prove that the non-mainstream treatment the Hauser’s want to use is a load of crap. (In contrast, one cannot ever scientifically prove that a particular ideal is or is not being used to promote a self-serving tyrannical gov’t, for example)

The fear would be that a corrupt government in the future would actually mandate a medical treatment for self-serving reasons, despite poor scientific evidence. Surely, if that were to occur then those capable of understanding the science would speak out… but what worries me about that reply is that it ultimately relies on the electorate to weigh whether the a given government is abusing/misrepresenting scientific evidence — and uh, since 60% of Americans don’t believe in evolution…. yeah, exactly.

Clearly there will never be a woo-style conspiracy where the government and tens of thousands of scientists are so in the pocket of a corrupt industry (Evil Oncology! heh) that nobody will speak out about it and/or the scientific evidence so thoroughly suppressed. But I don’t discount the possibility that the government and maybe a few hundred scientists could ever be in the pocket of a corrupt industry; and even if tens of thousands of scientists were speaking out against it, I’m not sure I trust the electorate to know the difference.

Bottom line: Isolating this particular case, there is no doubt whatsoever that the moral and ethical thing to do is to get Hauser the treatment he needs. However, the law deals in generalities… and in the general case of a minor refusing mainstream medical treatment, I am not quite sure how to ensure that the government only ever mandates treatment in a moral and ethical manner.

I do want to distance myself strongly from Lee’s comment that “science as religion is still religion, and compulsion is the hallmark of religion.”

First of all, science by definition is not religion. Woo in the name of science is called “pseudoscience”, not science.

More meaningfully, I strongly disagree with the assertion that compulsion in the name of science immediately implies it must be religiously motivated (or even science-as-religion-motivated).

There are plenty of times when compulsion is justified on scientific grounds… Involuntary commission of a dangerously mentally insane person, for example. Or, knock on wood that this will never happen, but a deadly pandemic could conceivably require mandatory quarantine. Compelling drug addicts to go to treatment programs (as opposed to jail) is compulsion in the name of science — and you damn well better believe that’s not religious! (Quite the opposite, the Religious Right seems to be jacking the whole deal by demanding righteous punishment as opposed to humane treatment… but I digress)

My qualms are in how to guarantee long-term that the gov’t is always getting the science right when they mandate treatment. If we could be sure that some future corrupt and/or incompetent government (Bush III? ) would never use this precedent to mandate bogus or self-serving treatments, then I’d be more than happy to say that the gov’t should step in any time a parent refuses treatment in a way that puts their children at significant risk. This “science as religion” thing is a red herring.

Oh, and one more thing… My opinion leans towards agreeing that the treatment ought to be mandated anyway, despite concerns I have about the long-term potential for government abuse. The minor’s interests are just so clear-cut and so compelling that I’m thinking it outweighs the murky long-term ramifications.

Exhibit A in why it worries me to see government mucking around in the field of medicine and decreeing that “they know best” when it comes to science: The Bush administration’s policy on stem cell research.

“Exhibit A in why it worries me to see government mucking around in the field of medicine and decreeing that “they know best” when it comes to science: The Bush administration’s policy on stem cell research.”

True, but I’m not sure this point is relevant here. In Daniel’s case we know what the best (not perfect, I agree) course of action is, because of years of accumulated evidence, and that is the basis for recommendation – from a court.

In Bush’s case the science was ignored, by proclamation, in essence.

II continue to hope Daniel is found and, treated, and cured.

A 13 year old girl can become pregnant through rape (meaning, she can come from a great family but have the unspeakable happen).
She can ask, in most jurisdictions, for a court or judge to act in loco parentis, so in effect, she can have an abortion without parental consent.
What happens in emergency situations when a minor is brought into the ER: do you chase down parents for consent, or do you treat the emergency? Doesn’t the child get treated without consent? Heck, even adults get treated without consent in emergencies, no?
Lee, when you get Hodgkins, you are free to refuse all the treatment for yourself. You are not free to refuse for your child.

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