An astoundingly inaccurate headline about the Daniel Hauser case

It's a lovely, sunny day here, so I'll be brief. I've written several posts about the case of Daniel Hauser, the 13-year-old who refused chemotherapy and is now on the run from the law with his mother to avoid having to comply with a judge's order that he receive effective, science-based treatment. One strange aspect of this story is that he may be receiving aid from Billy Best, a man who, as a teen, also had Hodgkin's disease and, at age 16, also ran away to avoid chemotherapy.

Here's the story headline:

Man Who Survived Without Chemo: 'I'd Still Fight': Man Who Ran to Avoid Chemo in 1994, Says He'd Help Mom and Teen Now on the Lam

What's so breathtakingly inaccurate about this headline? Easy. Billy Best actually did undergo at least a couple of rounds of curative chemotherapy for Hodgkin's disease, possibly more, over four or five months before he decided to run away. He did not "survive without chemo." Most likely, he survived because of chemo. But, like virtually everyone with an "alternative cancer cure testimonial," he doesn't attribute his good fortune in having survived 14 years to his conventional medical therapy. He attributes it to woo:

"I ran away because I believe the chemo was poisoning me and it would kill me before it cured me," said Best.

In the past Best claimed that roots, Indian rhubarb and slippery elm helped him stay cancer-free, but told "GMA" on Saturday he "used something called 714-X."

He's also making disingenuous and dubious statements:

"That's not an issue here," said Best, who instead critiqued the widely circulated statistic that Daniel Hauser's cancer would have 90 percent cure rate with chemotherapy.

From the video:

The 90% you're talking about is a big issue because that's an ideal statistic they'll put out there. And I know that he's had treatment and then stopped treatment. So, if he was to begin it, it wouldn't be 90%, and that was something we talked about in court. So I just wish that people would understand that 90% I don't think it applies to him at this time.

This is probably true, but even relapsed Hodgkin's disease after a full course of treatment still has a good probability of complete remission. One figure I've seen quoted on the NCI website is around 75%. The woo that Daniel is pursuing provides about as close to a 0% chance as there is, and his odds of being cured fall the longer his mother keeps him away from effective treatment.

Billy Best is not a good example upon which to base decisions in the Daniel Hauser case, but that doesn't stop him and other advocates of cancer quackery from pointing to him repeatedly as a "proof" that "alternative cancer cures" work.

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"

More like this

Over the last couple of weeks, I've been blogging regularly about the case of Daniel Hauser, the 13-year-old boy with stage 2B Hodgkin's lymphoma who, after one course of chemotherapy in January, refused to undergo any more, citing a faux religion run by a woo-meister naturopath and Native American…
Over the last week, I've written about the case of a 13-year-old chemotherapy refusenik named Daniel Hauser, who lives in Minnesota. After having been diagnosed with a highly curable form of cancer, Hodgkin's lymphoma, back in February and having undergone one cycle of chemotherapy that apparently…
I've been writing a lot about the case of Daniel Hauser, the 13-year-old boy with Hodgkin's lymphoma who underwent one course of chemotherapy and then decided he wanted to pursue "alternative therapy" based on fear of chemotherapy and the faux Native American religion that his mother had taken up…
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…

I was just wondering-is there any chance of survival without chemo? Has anything like that ever been documented. I just wonder-I wonder what the spin will be if he doesn't get treatment and dies..What are they going to say? I am reacting to this whole thing as a mother-yes, it must be hard to watch your child go through chemo-but as a mother isn't it your job to do every and anything possible to help your child? I can not understand, why, if she didn't care for her first doctor-she didn't get another medical opinion?I do know what it is like to feel desperate-especially with a child. However, desperate does not excuse stupidity.

Has anything like that ever been documented

Yes, although rarely. Occasionally even a really vicious tumor like NSCLC or pancreatic regresses. Thought to be due to a delayed immune response to the tumor (aka the body finally gets its act together.) NOT something I'd want to count on happening, though, if I had HL or any other cancer.

You know what? For non-contagious diseases, let's just let parents do as they like with their minor children. Consider it legalized abortion through the 57th tri-mester.

By only-half-joking (not verified) on 25 May 2009 #permalink

You know what? For non-contagious diseases, let's just let parents do as they like with their minor children. Consider it legalized abortion through the 57th tri-mester.

By only-half-joking (not verified) on 25 May 2009 #permalink

Somehow I am surprised you fail to realise that ideology always trumps science: it is one of the main unrecognised axioms in philosophy. As long as we are faithful to our believes we do not need such petty materialistic things as facts.

By Tsutsugamushi (not verified) on 25 May 2009 #permalink

It's 94% water. And injected

It sounds like another quack treatment, but "94% water" is hardly an argument against the effectiveness of an injectable therapeutic. Even effective injectable therapeutics tend to be mostly vehicle.

Some people are claiming that this is part of a religious ritual. Some religion from the internet.

Since the ritual is essentially a parent sacrificing her child on the complementary altar of alternative medicine, she should end up spending some quality time with Susan Smith. Of course, this mother will get out first, since the media see some imaginary difference between the cases and this mother is only killing one child.

She can always claim insanity. Killing your own child does have that I'm not faking being crazy effect.

Maybe Oprah will give her a prison blog, so this Murder Mom can be the next Mumia.

The Boston Herald was mentioning this Billy Best last thursday on the front cover, seemingly approvingly.

I'm not a fan of the Herald, and this didn't help my estimation of them.

Orac,

I swear I press the post button only once!

By S. Rivlin (not verified) on 25 May 2009 #permalink

I guess we'll see this mother as a "courageous" example on Jenny McCarthy's newest show. Probably show pictures of the dead body of her son as revealing how the medical establishment/big pharma wants kids to die, or some other BS like that.

Hopefully this case will have a fringe benefit - an "Abraham's Law" for Minnesota. Orac has a lot to say about it in other posts, but in general, it allows Virginia parents, in conjunction with their children, to choose their medical care without being accused of neglect. And maybe in Minnesota they will push the child's age down to 13 (it's 14-17 in the original Abraham's Law).

Why would this be a good thing? 1. It really should be the patient's choice, even if the patient is a child. 2. The state has better use for it's funds than hunting down and forcing reluctant patients into unwanted treatment. 3. It keeps the kooks off the front page.

Orac, a few years ago you stated in one of your posts that you thought Abraham was doomed. I believe he is still alive, so that poses an interesting possibility. Have you predicted enough 'dooms' so that a scorecard could be produced? I started reading your blog a few days ago, so I don't know if you make this prediction fairly often in response to medical craziness or not. But I do think something like the 'five-year survival rate' after an Orac 'doom' prediction would be interesting.

Lee,

Do you really think 13 year olds grasp the knowledge necessary to make medical decisions?
Having seen 13 year olds in these situations, I'd say the answer is generally no.

I apologize if any 13 year olds reading this are insulted - under life and death circumstances asking a 13 year old to make an intelligent decision is cruel, and really inappropriate.

I've actually used 714-X on a patient. It wasn't my idea-he and his family were quite interested in alternative therapies and he really wanted to try it. Since he'd really exhausted all conventional treatments for his progressive terminal disease, it seemed like a reasonable idea to help him try anything else he wanted. He didn't have any adverse effects I ever recognized, assuming the progression of his disease, alteration in mental status and death within 3 months would have happened anyway.

Whitecoat Tales,

Usually yes, particularly if their parents concur, as in Abrahams's Law. Medical care should not be involuntary. The doctor in Daniels's case said this was the only time this had happened to him (feeling it necessary to try to overrule the parent's bad choice, Daniel's choice too), so this doesn't appear to be the tip of an iceberg of people wanting to avoid more standard care. Most people faced with cancer want a mix of quality of life and longevity, with them getting to pick. Medicine provides the choices and the advice. The people involved should get to make the choice. Doctors generally push the choice they think is best, and usually patients accept it, when they don't - move on.

If, in good conscience, the physician can't provide the choice they picked, then let someone else. Abraham's Law allows this by definitively reserving the choice to the parents.

How far should it go Lee?

Why stop at Chemo? Why force a god-fearin' Christian child to go to the hospital after a car accident? That's involuntary. You have no choice if you're unconscious, those paramedics will take you right to the hospital. I say, if you're going to make a stupid fucking pandering to ignorance under the guise of "Parents know better than every-fucking-body else on the planet, reality and logic be damned", then have some balls and don't stop there. Make it a hard requirement that before *any* treatment of a minor can begin, emergency or not, that the parents have to consent to said treatment at every stage, in writing. Notarized.

After all, it should be a parent's choice if their child is pulled from a car wreck, or left there for God to rescue.

JCW,

Let me be a tad more precise. Someone should not have medical care that they have specifically rejected forced on them.

Do you consider chemo an emergency in the same sense that a car accident is an emergency? I don't think it is the same at all. Ordinarilly one does not know the wishes of an unconscious accident victim, and so gives them treatment thought appropriate. HOWEVER. You are perhaps familiar with the medical tags worn on necklaces or bracelets, mainly informing caregivers of allergies or specific health issues. If someone one were to wear one of those, and state on it that they prefered no care until authorized, then I think that should be respected.

Modern medicine continues to prove a great boon, but it is not one that should be forced on the unwilling. Freedom is a bigger boon, and allows for bad, studid, or even fucking stupid choices. And I think freedom still allows you to disagree with every-fucking-body else.

Oh good - I saw this headline at ABC News yesterday, and e-mailed them to query whether their writers/editors were dishonest or just incompetent (shockingly, the only response I received was their auto-reply). I felt like it was a bit of an angry rant at the time, so I'm happy to see that at least I wasn't the only one annoyed by the headline.

Freedom is a bigger boon, and allows for bad, studid, or even fucking stupid choices.

I just don't think you'll convince me that "Freedom" also includes the option to make fucking stupid choices for a child.

And I'm sure you won't convince me that Daniel Hauser has an understanding of the situation sufficient to make a "choice" in any meaningful sense. Have you read the testimony he gave in this case? It's not like he's a particularly precocious or well-informed thirteen year old. He's essentially been tricked into believing that "painless" herbal treatments offer him the same hopes for survival as the chemotherapy. Of course he "chose" the herbs. But he didn't do so in any truly autonomous sense.

Freedom is a bigger boon, and allows for bad, studid, or even fucking stupid choices.

I just don't think you'll convince me that "Freedom" also includes the option to make fucking stupid choices for a child.

And I'm sure you won't convince me that Daniel Hauser has an understanding of the situation sufficient to make a "choice" in any meaningful sense. Have you read the testimony he gave in this case? It's not like he's a particularly precocious or well-informed thirteen year old. He's essentially been tricked into believing that "painless" herbal treatments offer him the same hopes for survival as the chemotherapy. Of course he "chose" the herbs. But he didn't do so in any truly autonomous sense.

Usually yes, particularly if their parents concur, as in Abrahams's Law.

Than you need to go read about neuroscience, and psychology. 13 year olds are still learning formal operations. Their perceptions are concrete. That means they can't balance a pain now vs a positive benefit in the future. That's why many 13 year olds need to be forced to clean their rooms and study for class, and do their homework. Your knowledge here is not sufficient to really have a discussion.

How far does it go?
What if the parent's want to treat by starvation?
What if they'd like to treat by euthanasia?
What if they'd prefer treatment solely with narcotics (I've seen this one personally so don't say it's contrived)
There are limits on what any physician can ethically provide.

Not providing chemotherapy to a 13 year old who can't provide informed consent in the setting of a mother who clearly is deluded on the subject is one of thos situations. You NEVER responded to my discussion of informed consent on the other thread. by the way

Medical care should not be involuntary.

How about vaccines? 2 year old says they don't want the shot, parent who lacks education or has misinformation on the subject says "I don't want my baby to have pain from a shot", do they really have the information to make that decision?

The doctor in Daniels's case said this was the only time this had happened to him (feeling it necessary to try to overrule the parent's bad choice, Daniel's choice too), so this doesn't appear to be the tip of an iceberg of people wanting to avoid more standard care.

Yes, because an anecdote is clearly representative of the world...
No, in my experience we quite regularly feel it necessary to question patients decisions. My anecdote is just as good as that doctor's.

Most people faced with cancer want a mix of quality of life and longevity, with them getting to pick.

Thats fine. But thats not what happened here. Daniel Hauser thinks he went from chemo with sideefects, and a 90% cure, to herbs without side effects +100% cure. This is incorrect. So long as this is his thought, than he isn't balancing "quality of life and longevity", he's balancing being conned with being ignorant.

Medicine provides the choices and the advice. The people involved should get to make the choice. Doctors generally push the choice they think is best, and usually patients accept it, when they don't - move on.

When the patient clearly hasn't understood the information, we have an obligation to not let them move onuntil they DO understand.

If, in good conscience, the physician can't provide the choice they picked, then let someone else.

In good conscience, according to the basic ethical guidelines we're all not able to provide the Hauser's choice. No doctor, anywhere. Any doctor who is, is in pretty clear breach of basic basic ethical principles.

Sorry to butt in, but maybe this might clarify things a bit.

Lee, you say that people should have a right to make stupid choices. However, the choice made here is not so much stupid as inconsistent.

Consider the following scenario: the parents of a kid are getting divorced, the dad is staying at home and the mom is moving to another town. The kid is asked where they want to live. The kid responds that they want to live with the mom, but in the same house as they all grew up in. Unfortunately, that choice is not one of the possibilities, and so won't happen. Even after explaining this to the kid, the kid might not be willing (or able) to change their mind or express a preference among the viable options. In this case, other parties have to make a decision that is not what the kid wants, based on what they think is the best of the available options.

In this case, if I understand it right, D. Hauser has selected a similar "impossible" option. If he had chosen not to take chemotherapy _and_ accepted that he had significantly reduced his chances of living, that would be a discernable choice, and while regrettable, would be rather more difficult to argue with. However, it appears he instead indicated that he does not want chemotherapy _and_ he does not want to die. If that is the case, and if you accept that chemotherapy is the only practical way to keep him from dying, then there is a fundamental inconsistency in his choice. Since he has not picked a viable option, outside parties need to become involved, and the courts reasoned that his desire to live outweighed his desire not to go through chemotherapy, a rather reasonable choice.

By my one cent (not verified) on 25 May 2009 #permalink

lee, lee-

well, daniel hauser's original oncologist -the medical professional whose spent the most time directly involved in daniel's case- has stated that his tumors will most likely kill him by obstructing his airway in a few weeks to perhaps a month at most, if they remain untreated. and the day before they fled, daniel told the doctor performing the x-rays/examination that the court ordered that the mass in his chest was causing him "extreme pain."

does extreme pain coupled with the possibility of death by suffocation in a matter of weeks sound like something that requires "emergency" care when it's happening to a child?

but i forgot, you're so obsessed with the concept "freedom" that what's actually happening means little to you.

do you follow the laws of wherever you live? or do you speed through red traffic lights, steal what others would ask you to pay for, pour used motor oil on your neighbor's vegetable patch, etc. just because "freedom still allows you to disagree with every-fucking-body else" and their general ideas about living in a civilized state?

Marita,

In this particular case, Daniel made a choice, and his parents are helping him implement it. For me, anyway, it would be a much tougher call it Daniel and his parents wanted different choices. I think their choice is a poor one, but they agree, and I think it is their right to pick poorly. I have read his testimony, and I think he is competent to make this decision about himself. I do not think he fully understands the choices. But I really do not believe that anyone ever 100% understands all the ramifications of the choices they make. I definitely don't like using government force when the arguement is something like: if only you knew what I knew, you would make the same choice that I would make - so I will make you accept my choice regardless.

Lee,

I still don't think that you're getting that Daniel didn't really make a "choice" if one of the options was a completely fallacious one. If he could show that he understands that using the herbal treatment is a vastly inferior treatment to the chemotherapy (which isn't just a matter of "if only you knew what I knew" - there's loads of scientific evidence to back it up), I might consider that he'd actually made a choice. But he's been lied to by people he should be able to trust. He didn't choose a real option, he chose a fairy tale, and he's clearly not competent to identify the difference. That's not exercising freedom. There is no free choice for him if only one of the options is actually what he thinks it is.

lee-

i'm still waiting for you to tell us if your are a law-abiding citizen of somewhere. or if you are living out your ideals alone in some self-created libertarian compound with a satellite internet hook up.........

people cannot coexist with other people if they are all literally free to do anything they want all the time. they end up hurting each other, or somehow stepping on the other people's "freedoms."

besides, being a prisoner of ignorance -like daniel hauser- cannot be logically construed to be living and choosing "freely." please stop making this argument over and over again, it's tedious. it is evident you care nothing about this boy's life or death, only about how you imagine that forcing chemo upon him will lead to someone forcing something upon you -selfish and tedious.

besides, i bet you already live somewhere where things are "forced" upon you constantly, unless you admit that you break all the laws of your society all the time.

@Lee

I'm still waiting on you to say something that shows you even understand what Informed Consent IS.
If you don't get that, than you're just rambling for the sake of being contrary, since that's a key concept at the heart of this debate.

Can anyone confirm this? I read somewhere that Daniel might be functionally illiterate. As if we need more ammunition beyond his age, I submit that this makes it even less likely that he's gotten all the information he needs to make an informed decision...

Can anyone confirm this? I read somewhere that Daniel might be functionally illiterate.

Mandy - in one of the previous threads on this issue, someone posted a link to the transcript of Daniel Hauser's testimony in the case. At one point, they ask him to review and read from a document he signed on the issue, and his mother requested the proceedings be stopped, and that he be removed from the room. While he was gone, she basically told the judge that he wouldn't be able to read the document in question, or at least not more than bits and pieces of it, and to ask him to do so would likely reduce him to tears. There was a bit that was left off the record during the exchange when he's out of the room, but I got the impression that he had some sort of developmental disability resulting from something that occurred at birth, and that he couldn't read properly as a result.

Hopefully someone else will be kind enough to provide the link in question?

Sorry luna1580, didn't realize you'd already made a link. Anyway, I'm glad that it looks like things will end happily now!

this article reveals that daniel's birth was plagued with complications:

"When he was ready to be born, the doctor hadn't shown up and he wasn't getting his air," Hauser said.

Complications from the lack of oxygen forced hospital personnel twice to revive Daniel, his father said.
"They told us he could have learning problems," Hauser said. "He's slower that way."

-anthony hauser

http://www.startribune.com/local/45554457.html?elr=KArksLckD8EQDUoaEyqy…

and this column notes that he couldn't even read the word "the"

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

Jill, no problem! i just inadvertently reposted hedberg's tevlin link :)

@Lee "In this particular case, Daniel made a choice, and his parents are helping him implement it."

No. It sounds much more like Daniel's mother made a choice, and she badgered him into believing it. The kid does not have the ability to think for himself. This woman completely controls him. She homeschooled him, keeping him from getting a decent education that would allow him to make informed decisions, keeping him from interacting with the outside world. He is clearly not able to make decisions on his own---he can't even read the word "the".

If this were a sound-minded kid who genuinely could decide things for himself, it would be one thing. But the boy's cultish upbringing and his learning disability seem to make that impossible.

I have read several of these blogs and I am getting more and more angry. Haven't any of you well meaning people heard of anyone who died with chemo and radiation. What makes you think that Western medicine cures everybody? What makes you think that natural medicine never works? And if this boy and his parents are aligned on this decision to seek alternative treatment since when did a child become the property of the AMA?

Get as angry as you like. It doesn't change the fact that chemotherapy has a high probability of curing Daniel and the woo he was pursuing has a virtually 0% chance of doing so.

I s'pose if Daniel does return but it's too late for treatment - would he still get treatment, die anyway and the parents say "told you chemo wouldn't work"?

Yolanda:

Haven't any of you well meaning people heard of anyone who died with chemo and radiation.

You have not read much of this blog. I highly suggest you go back in the archives and read some more.

You should also check out the actual information on this young man:
1) He did start chemo, and the tumor shrank.
2) He stopped because it hurt.
3) He is severely learning disabled is does not understand the real risks.
4) The alternative methods used after the chemo failed and the tumor came back.
5) The latest news is that he has returned and is in the hospital being evaluated.

What makes you think that Western medicine cures everybody?

Please point out where that statement was made in this blog. The reason that the term "90% cure rate" is used is because it does not work for one out of ten with this particular kind of cancer. The numbers are more dire for other cancers like pancreatic cancer.

What makes you think that natural medicine never works?

The absolute lack of evidence. If you have any, please post the journal, title, authors and date of the pertinent papers with that data and evidence.

In the mean time, to assist you in the evaluation of papers and how to look at scientific evidence please go to your local public library and obtain the following two books (Amazon links only used for information):
Snake Oil Science
Trick or Treatment

Hi,

I was just wondering if Daniel and his family are willing to try alternative medicine. There is one in particular I can think of, which has a very high success rate and no side effects have been seen so far. Does anyone know how to get in touch with his family? thanks

I have read several of these blogs and I am getting more and more angry. Haven't any of you well meaning people heard of anyone who died with chemo and radiation.

In addition to the comments already made, does anyone else get the impression that Yolanda is considering "cancer" as a single disease, rather than a general name for many diseases? All cancers are not the same, nor are they equally treatable. Of course we have heard of people who have died despite treatment. Most of us probably know someone who has died despite treatment.

However, if anyone knows someone who had this specific disease, Hodgkin's Lymphoma, they're much more likely to know someone who survived because of the treatment rather than dying in spite of it. As has been stated, the cure rate with chemo for this specific disease is 90%. If only the treatment for all forms of cancer was so effective...

There is one in particular I can think of, which has a very high success rate and no side effects have been seen so far

Fascinating! Do tell us more.

In addition to the comments already made, does anyone else get the impression that Yolanda is considering "cancer" as a single disease, rather than a general name for many diseases?

Not an uncommon 'misunderstanding' amongst those with neurotic mother/healing obsessional behaviour; it's far easier emotionally to go all Nurturing[tm] and subsconciously imagine yourself an Ancient Wisdom dispensing Athelas to injured hobbits.

Lenora:

I was just wondering if Daniel and his family are willing to try alternative medicine. There is one in particular I can think of, which has a very high success rate and no side effects have been seen so far.

You really haven't read much about young Danial, have you? Try going back and read all of the posts where the types of alternative meds were described, and the subsequent result: the return of the tumor.

Do tell us the journal, title, author and date with the pertinent evidence that a particular version of alternative therapy had a high success rate. You might want to plug its name into the little search box on the left hand side of this page and see if it has been addressed by the blog owner.

By the way, Lee, here's a link for your post in #15:
http://scienceblogs.com/insolence/2008/06/starchild_abraham_cherrix_tur…
Pretty simple to find, actually. Seeing as you've "started reading your blog a few days ago" but also said that: "a few years ago you stated in one of your posts that you thought Abraham was doomed," I'm sure you would've run across this, what with all the years of reading Respectful Insolence you've gone through in the past few days.

By LibraryGuy (not verified) on 25 May 2009 #permalink

What makes you think that natural medicine never works?

A few natural medicines do work. Aspirin is such a one. When shown to work, modern medicine will use them.

But because a few natural medicines work, it cannot be assumed that all do. In this case there is absolutely no reason to assume that some random herbs are good for all cancers.

It's not about "natural" vs "artificial", it's about effective vs ineffective.

Mark P:

A few natural medicines do work.

That is very true, except without controlling the dose they can become deadly. While digitalis is very effective for some heart conditions, trying to get it in the form of foxglove tea could kill you!

Lee,

From comment 28:

I have read his testimony, and I think he is competent to make this decision about himself. I do not think he fully understands the choices. But I really do not believe anyone ever 100% understands all the ramifications of the choices they make.

Double talk does not make your point. Why do you believe that nobody being able to predict every possible contingency is the same as having the capacity to make an informed decision about care, whether to consent to care or to refuse care?

You are advocating that a 13 year old, possibly illiterate child, be allowed to make life and death decisions because you believe in anarchy? It certainly is not part of the Libertarian philosophy. Libertarianism is about adults making informed decisions.

This kid is not an adult. Informed decisions require the capacity to understand the consequences. This kid gives no indication of being able to make any kind of informed decision. Neither do you.

But you think it is OK for his mother to kill him, because Why not? Maybe Springer will be more lively when they get this family (minus one thirteen year old) on the show.

What if the parents want to sacrifice their child to God on an altar? Any altar. Any God.

Is there any reason that we should doubt the ability of the child to consent to being sacrificed?

What if the bills are tight and the parents want to put Junior out on the street, selling his body, to help pay the bills? If Junior consents, why not?

I need to know, Lee, because my bills are higher than usual this month. I am also thinking of adopting and opening my own Chicken Ranch. When should I expect you to stop by?

Yolanda,

I have read several of these blogs and I am getting more and more angry. Haven't any of you well meaning people heard of anyone who died with chemo and radiation.

The mother-in-law of the author of this blog is just one example of someone who has died in spite of treatment. A friend of mine died last month. Thank you very much for your insensitive know-it-all comments.

What makes you think that Western medicine cures everybody?

Conventional medicine does not cure everyone. Nobody here suggested that it does. If you even read the post you commented on, before posting your spam, you might have noticed where the 90% likelihood of success was mentioned.

What makes you think that natural medicine never works?

If there were evidence that any of these quack treatments worked, they would be adopted by conventional medicine. Without evidence, the best that can be said about any of these treatments is that it is experimental. When the research is completed, if the results show a higher success rate than placebo, then comment on the effectiveness. Until then, do not try to poison children with your voodoo. Killing children is something that is wrong. You should be ashamed.

And if this boy and his parents are aligned on this decision to seek alternative treatment since when did a child become the property of the AMA?

Aligned? Are we aligning chakras?

The child is not the property of the AMA. The child is not the property of the parents to do with as they please for their own misguided amusement, either.

As I asked Lee:

What if the parents want to sacrifice their child to God on an altar? Any altar. Any God.

Is there any reason that we should doubt the ability of the child to consent to being sacrificed?

What if the bills are tight and the parents want to put Junior out on the street, selling his body, to help pay the bills? If Junior consents, why not?

You child abusers ought to be ashamed.

Wait, wait, WAIT - I've read a gajillion protesting comments from the alternative medicine side claiming this kid has every right (and competency) to make this "decision" for himself and he's NOT ONLY merely thirteen, but a developmentally delayed thirteen?! WHAT are we even arguing about? *Of course* he is not exercising informed consent.

I throw my hands up. Thank goodness he's back and, IIRC, in the hospital.

It is a sad indictment of the theocratic control of USA politics that there should even be debate over this, but the depth of stoopid demonstrated by some commenters on this subject staggers the imagination. It also clearly demonstrates the delusions shared in common by the mainstream batshit insane. My sympathies to the growing hordes or Americans battling these freaks.

The issue is far simpler than these loons think and comes down to two sentences. People have rights. Parents have obligations. End of story.

Minors are are a special case only in that they can be shown to not be fully neurologically developed and in most cases will not have sufficient experience to formulate "informed consent". The best and most efficient way we have to protect this developing adult is by leaving their biological parents in the role of guardian. Not all parents are up to the task. Other cultures, especially the more stable civilisations of our tribal past (eg Indigenous Australians - ~50,000 years stable society) and the extended families of many Asian countries are examples of good, caring parenting models that do not implicitly bestow custodianship upon the biological parents only as a matter of course.

We should not confuse parenting with human rights. We do not insist on a licence to raise children, but we impose a regular review process. When parents fail to protect their children their licence to raise children is revoked by the community through the agency of the courts and a better custodian is appointed. This process is as it should be. Whilst not ideal, even the love-deprived environment of a orphanage, with education, food and physical protection is deemed a far more nurturing environment that the harm likely to be caused by the parents.

I still don't understand how courts can remove a JW's child from the custody of the parents, give them the required transfusion and then hand them back to the parents to do the same again (and fuck knows what happens behind their closed doors). It's like "You didn't kill them this time, here, have another go"

When parents are found guilty of child abuse it will be because they were judged guilty by 12 of their "peers". The charges will arise from legislation previously passed by elected representatives. This is not big brother or the AMA stealing children. Only religists and their apologists try to justify wholesale stealing of children by rule of law (google the "stolen generation" for just one example).

The court order for treatment in this case was administrative and protective, not criminal. Ignoring (or as happened here - openly defying the order) however is a different matter. Neglect, reckless endangerment and whatever appropriate child abuse related charges also need to be laid (but I'm not sure what is applicable under your legal system).

Nor are these child protection laws only in your part of town - they are global laws held as important by the vast majority of humans on the planet. Only the relatively small numbers of Islamic and Christian dominated governments think they can own or dominate by violence other people (eg children, women). The 2 billion plus atheists in China would rightly condemn this religious nuttery. If it lead to death, the chances are the murderous parent would likely be shot in the back of the head in the prison yard and their warm organs put up for sale. Abhorrent admittedly, but at least the guilty party, not another innocent child would be the victim - and lives may be saved through the donor organs. After a short while, the religious crazies would stop their inane bleating about "parental rights".

As a corollary - homeschooling is clearly one way these sociopaths try to avoid auditing by authorities and the community in general. These wackaloon wingnuts need to stop worrying about Obama taking their guns and turning them all into muslims and instead worry about being held accountable for their actions.

By Peter McKellar (not verified) on 25 May 2009 #permalink

In this particular case, Daniel made a choice, and his parents are helping him implement it.

REAlly?

A child who is illiterate made this choice? Based on what? Someone read him the options and all pertinent data? He may be developmentally disabled. Did they have to read it to him multiple times?

His *parents* made this decision, and he, like any kid is trying to make them happy. Daniel Hauser, in no way, shape, or form, made an informed decision, no matter how much you wish to make it sound that way.

You people are so easy to troll. Lenora made it very obvious.

You people are so easy to troll. Lenora made it very obvious.

-In this particular case, Daniel made a choice, and his parents are helping him implement it.-

I also read that the boy didn't think he had cancer. Hardly informed consent.

Yknow, I once saved someone from jumping off a bridge after the funeral of one of his friends. He is still alive and happily going about his business today after his stupid and drunken moment. According to some of the people here that means i'm against the rights of the individual. An unamerican busybody.
What would you have done Lee?

By Richard Eis (not verified) on 26 May 2009 #permalink

Rob H:

You people are so easy to troll. Lenora made it very obvious.

Not really, she was more reasonable than Evil Dawn, JB Handley, and a bunch of others who have posted even sillier things.

Why should we take you seriously when you neglected to read the error message? (next time you see it, do not go back and try again, just go to the main page and check to see if your comment was posted)

I am not here to argue for or against any of your points. I am not trying to convince anybody of anything. I just wrote a quick note to see if anybody could help me get in touch with Daniel. I will find another way to do it. thanks

I am not here to argue for or against any of your points. I am not trying to convince anybody of anything. I just wrote a quick note to see if anybody could help me get in touch with Daniel. thanks

" I just wrote a quick note to see if anybody could help me get in touch with Daniel. I will find another way to do it. thanks"

You're either a parasite looking to profit off of a boy's sickness, or a sadist hoping to hasten his demise with some garbage "treatment".

Lenora

First, what makes you think anyone here has any special insight into contacting Daniel?

Second, why won't you answer those who have asked what this great, effective alternative treatment is? That seems to be a fair question to me.

1. The State does not own the child
2. Ultimately God owns the child, but the Parent is provided the responsibility to raise that child in accordance with His Word.
3. The State does have responsibility to punish evil-doing

So, is the parent's choice to not apply a specific form of cancer treatment for his or her child considered evil-doing to the level that the state must interfere?

No medical treatment is 100% effective. Even this blog states this method is 90% effective. While that is fairly good, there are apparently 10 out of 100 cases that don't succeed.

Chemotherapy certainly lessens the immediate quality of life.

Medical costs are expensive and not always covered by insurance. Is it the obligation of the parents to go into debt whatever the cost, and to be forced to do so by the State?

The parents did not GIVE their child Hodgkin's disease. It is one of the sad consequences of our fallen world that some of us get disease early in life.

These parents are in terrible turmoil. How to care for their child? It is the Parents responsibility to weigh all of the factors and decide what to do.

They may have made a poor initial choice in this case, at least according to OUR perspective, but in a free society, it is the Parents right and responsibility to make this choice. If we give the standards to the State, then we become slaves to whatever dictate the State decides is "best" for us.

Mr. McKeller made references to "laws" and to even the atheists in China as being good arbiters of what is "good". We had laws in this country allowing slavery, China allowed female babies to be murdered since they favored male children, and in China they also regularly practice the torturous feet tying of young girls. So much for the goodness of consensus.

Some people believe that to bring a disabled child into this world is abusive to that child. If this thinking became the "norm", then would we advocate the State forcing parents to abort a disabled child in the womb or otherwise face child abuse charges?

The United States of America (Not United Socialists of America) was founded on Freedom. Patrick Henry's "Give me liberty or give me death" is sadly being thrown to the wayside as we want our government to tell us how to live.

We are not advocating anarchy here, there are definite needs for criminal laws and statutes, but the government is encroaching deeper and deeper into all aspects of our personal lives. We thought we abolished Slavery in this country in the 1860's, but alas it is alive and well.

Medical costs are expensive and not always covered by insurance. Is it the obligation of the parents to go into debt whatever the cost, and to be forced to do so by the State?

Food is expensive. Housing is expensive. Having kids is expensive. If they can't deal with the costs of having children, there are options short of allowing their child to die for lack of medical treatment.

And the socialism boogyman? Please.

doug h-

foot binding is illegal and is no longer practiced in china. this has been true for many years, so the only living examples of "lotus feet" exist on old women. in fact, it was the evil godless communist government they ended the practice for good in 1949.

since you believe an invisible supernatural being "owns" all the people of earth (if he owns the children, surely he doesn't grant them freedom and free will when they turn 18, now does he?), i guess it shouldn't be surprising that all your "facts" are wrong.

maybe lee will let you into his secret libertarian compound, if he'll reveal where it happens to be, that is.

Doug H,

Not taking care of a child is neglect.

Not being able to afford to take care of the child does not excuse neglect.

If the parents decide to lock the child up in a cage and never let the child out, is that acceptable?

If the parents decide not to deprive the child of food, is that a more unacceptable way to kill that child than to deprive the child of appropriate medical care?

Are you claiming that there is no right to healthcare, but there is a right to food?

You are advocating anarchy.

Preventing parents from ignoring a child's illness is not slavery.

That should be -

If the parents decide to deprive the child of food, is that a more unacceptable way to kill that child than to deprive the child of appropriate medical care?

I'm shocked noone has brought attention to this already

Patrick Henry's "Give me liberty or give me death"

Patrick Henry was NOT fighting for your right to neglect your children. Please stop abusing the words of our founding fathers.

As the parent of a young man diagnosed with leukemia at age 15, who endured 3 1/2 years of chemotherapy every way imaginable (orally, injected in his veins, injected intramuscularly, and injected into his spinal fluid), I can assure all of you that you have no idea what it is like to watch your child go through this. And I feel that I am qualified to say that anyone who would allow their child to die rather than go through with chemotherapy for a disease with such a high possible cure rate IS committing neglect of that child. Yes, the government should step in and give that child the best chance of living a full life.

Yes, my son threw up probably thousands of times from the chemo. He lost his hair, he lost 28 lbs., and had lots of other serious side effects (like avascular necrosis, among others). But he is alive. He is in college, doing exceptionally well. He has a wonderful girlfriend. He plays on the college soccer team and rides on the cycling team. And he has his whole future ahead of him.

No parent has the right to take that away from their child, who is not old enough to make these kinds of decisions. Do I have a problem with the government stepping in to make sure Daniel got chemotherapy? Not for an instant.

Watch "Lion in the House", a PBS documentary on child cancer. Just 4 hours, but most people I know could not stand to even sit through those 4 hours of watching families living with children with cancer. Try experiencing years of it. Yes, it is tough. DAMN tough.

The people declaiming that parents should have the right to stop the treatment of their children do not recognize, in my mind, that the parents are likely doing it for selfish reasons -- because they are tired of having to go through it, scared, or just want their own pain (from watching their sick, crying kids) to end. Parents do not have the right to take away their child's chance at a full life.

And sorry, but no 13 year old is capable of understanding the nature and consequences of their decision on this type of issue, with their life at stake. If the parents are not going to make rational decisions to save their child's life, then the courts ought to step in, in the child's best interests.

2. Ultimately God owns the child.

Well he's doing a sucky job of looking after them since we need to keep sorting out his crap. And excuse me...owns...like a pet perhaps? or does your god own children like slaves?

By Richard Eis (not verified) on 26 May 2009 #permalink

1. Patrick Henry was fighting against the oppression of the State, exactly the point I was making in my short letter.

2. We are in a fallen world and evil abounds. God has provided a wonderful salvation plan for all His Children, even those who are suffering from illnesses like Cancer. If they believe in the Lord Jesus Christ, they will be saved and will one day reign in Glory with Him. During our time here on earth, we can only do our best to glorify God and to take care of his little ones in our own families and all over the world (and yes, this does include providing them the best medical care we can).

3. I never said nor implied it was right for a parent to abuse or neglect their Children. In fact, it is their obligation to take care of their children as best they can. That is exactly what Mrs. Hauser was trying to do, even though WE don't necessarily agree she was making the right decision.

4. I also mentioned that the State DOES have the right to punish evil-doing. The question before us was whether the decision of a parent to choose one medical care approach over another requires the State's role of stepping in.

We do know that Chemotherapy is not 100% effective. We do know that there are some cases where Chemo is not administered and the patient lives.

Djlawman points out the terrible suffering he went through with his son. His son is alive, but there was no guarantee that his son would live through the treatment. Many cancer patients are treated and end up dying anyway, and the treatments severely lessened the quality of life they could have had in the end.

I'm only saying that these decisions are very very difficult, and I for one do not want the State to come in and force me to choose one medical procedure over another for whatever disease I may have or that my son or daughter may have.

5. As to rights, the right to healthcare is NOT the right to _receive_ healthcare, for then I am imposing on the rights of others (those with the skills, knowledge, and equipment that they paid for are somehow obligated to provide my healthcare?). Rather, the right of healthcare is the right for me to choose the healthcare I wish to receive.

Parents will not always make the right decision, but it is also clear that States don't always make the right decisions either. Bad things are going to happen as we are all sinful beings. We must not, however, keep falling into the trap of allowing our government to be our parents in order to protect us from ourselves.

In an amazing show of backsliding Doug H:

We do know that Chemotherapy is not 100% effective. We do know that there are some cases where Chemo is not administered and the patient lives.

Except in this case there is knowledge that not doing something means a 100% chance of death (the tumor has grown back enough to cause a great deal of pain), and there is evidence that the treatment for this particular kind of cancer works about 90% of the time!

Also, next time specify which god has ownership. Did you mean Thor, Loci, Zeus, the Flying Spaghetti Monster or other? Because that is very important information.

Doug H, you state "Djlawman points out the terrible suffering he went through with his son"

but you purposely neglected to include that Djlawman stated this: " And I feel that I am qualified to say that anyone who would allow their child to die rather than go through with chemotherapy for a disease with such a high possible cure rate IS committing neglect of that child. Yes, the government should step in and give that child the best chance of living a full life."

Perhaps you should actually read the entire post and think about the other comments made in that post, then rethink your comments.

Doug H,

You are free to do whatever you want to your body in the name of whatever mystical flavour of the month you choose. But you cannot do that to another human being.

Respecting another person's rights - especially a minor's - is more important than respecting your superstitions. If people like you want to avoid the state interfering in their private lives, avoid having children. Or alternatively learn to respect them.

Doug H.,

1. Patrick Henry was fighting against the oppression of the State, exactly the point I was making in my short letter.

If the state were forcing medical care on a competent adult, you would have a point. Here the state is acting to prevent the neglect of a minor. This is an entirely different case from what you suggest.

2. We are in a fallen world and evil abounds.

Please stop encouraging the evil of child neglect.

God has provided a wonderful salvation plan for all His Children, even those who are suffering from illnesses like Cancer.

.

This salvation plan is for salvation after death. Nowhere in the Bible does Jesus suggest that killing our children is the route to their salvation.

You are recommending the Susan Smith approach, not the Christian approach.

If they believe in the Lord Jesus Christ, they will be saved and will one day reign in Glory with Him.

They will be saved after death in this world.

Ignoring the cancer is not a treatment for cancer.

Saying that the child will be with Christ in Heaven, does nothing for the child while the child is still alive.

Encouraging the child to follow some religion found on the internet, is not going to help the child achieve Christian Salvation. Or are you are trying to preach against Christianity, too. There is so much double talk, here. It is hard to know what you mean to be taken seriously.

So, if the parent wanted to nail the child to a cross to be like Jesus, there would not be any problem with that, in your opinion?

What happens to the child's body in this world is a matter of politics to you. All that matters is what happens in the next world.

During our time here on earth, we can only do our best to glorify God and to take care of his little ones in our own families and all over the world

Nailing Daniel to a cross would be a clear sign of glorifying God, based on what you write.

On the other hand, if we are to take care of children in this world, nailing them to crosses is probably something that Jesus would frown on.

Christ did not seem to be that fond of being nailed to a cross, when He experienced crucifixion.

(and yes, this does include providing them the best medical care we can).

.

You left out the part - Except in this case!

Where is preventing effective medical treatment in any way a part of providing them the best medical care we can?

Where?

3. I never said nor implied it was right for a parent to abuse or neglect their Children. In fact, it is their obligation to take care of their children as best they can. That is exactly what Mrs. Hauser was trying to do, even though WE don't necessarily agree she was making the right decision.

Of course you did.

This is entirely about neglect.

These parents, or perhaps just the mother, are not taking care of their child.

What Mrs. Hauser was trying to do is something we can only speculate on, since mind reading is as effective as alternative medicine cures.

Her actions clearly demonstrate that she does not understand medical care. She does not seem to be able to communicate an understanding of the illness to her son. Perhaps this is because she is not competent to make informed decisions on cancer care, due to her own lack of understanding.

We appear to have one medical illiterate making decisions for a child, who appears to be illiterate. This is not informed consent/refusal. This is a case where the state needs to step in to protect the child from the unintended harm of the incompetent parent.

The state should not allow this neglect by an incompetent parent. Pretending the child is making this choice is ridiculous.

4. I also mentioned that the State DOES have the right to punish evil-doing. The question before us was whether the decision of a parent to choose one medical care approach over another requires the State's role of stepping in.

The decision is not one of choosing one medical care over another.

The choice is between medical care and the belief that wishing it away will make it go away. Taking a bunch of herbs and spices is the same as just wishing, except that just wishing has fewer side effects.

We do know that Chemotherapy is not 100% effective. We do know that there are some cases where Chemo is not administered and the patient lives.

Chemotherapy is not 100% effective. True.

Nothing is 100% effective.

Even death by lethal injection does not always work. The list of things that are not 100% effective is endless.

Rejecting a medical treatment for a lethal condition, because it is only 90% effective is such a bad decision that the government is justified in stepping in and acting to protect the child from neglect. Allowing a mother to permit the death of her child is neglect. Where does the ability to use your children as property for your own amusement end, if this is permitted?

Spontaneous remission is something that occasionally happens. It is remotely possible that spontaneous remission could happen here. Expecting spontaneous remission - counting on spontaneous remission is not realistic in this case.

I'm only saying that these decisions are very very difficult, and I for one do not want the State to come in and force me to choose one medical procedure over another for whatever disease I may have or that my son or daughter may have.

There is no suggestion of the government coming in and telling you what kind of treatment you must have. Stop trying to bring this red herring into the debate. Unless you are a child, this is not relevant to your medical care at all.

These decisions may be difficult in some cases.

In this case, there is no ambiguity.

On the one hand a dead child, who dies not understanding the betrayal by his parents.

On the other hand a living healthy child, who grows up and becomes an adult. Maybe understanding that he was neglected by his parents. Maybe hating the government for causing him discomfort.

Alive and able to make decisions for himself. Something you would take away from him.

5. As to rights, the right to healthcare is NOT the right to _receive_ healthcare, for then I am imposing on the rights of others (those with the skills, knowledge, and equipment that they paid for are somehow obligated to provide my healthcare?). Rather, the right of healthcare is the right for me to choose the healthcare I wish to receive.

You are able to make your own healthcare choices. How you pay for them is up to you.

Claiming that this has anything to do with a right to healthcare is as logical as claiming that you have a right to food.

You are able to make your own food choices. How you pay for the food is up to you.

Deciding to prevent your child from receiving food, because it is your choice, is as valid as preventing your child from receiving appropriate medical care, because it is your choice.

You are not permitted to neglect your children by making incredibly stupid choices, because that is neglect. As in this case.

Parents will not always make the right decision, but it is also clear that States don't always make the right decisions either.

Now are we going to start posting platitudes as a way of boring everyone to death? That might work.

Bad things are going to happen as we are all sinful beings.

Apparently platitudes justify neglect.

Enough with the platitudes, Polonius.

We must not, however, keep falling into the trap of allowing our government to be our parents in order to protect us from ourselves.

Again, you completely distort the situation. No adult is being protected from himself.

A child is being protected from the parents' neglect.

This is not about politics. This is about neglect.

The last part of that should have this as a quote, followed by my comments. I left out one set of blockquotes.

We must not, however, keep falling into the trap of allowing our government to be our parents in order to protect us from ourselves.

Again, you completely distort the situation. No adult is being protected from himself.

A child is being protected from the parents' neglect.

This is not about politics. This is about neglect.

It seemed to me in reading over most of the points above that most people think it is obvious and not even worth talking about that the State has the absolute right to impose a particular medical care practice on someone's child.

While in this case it seems clear, we need to think about what this precedence means. The intent of my posts have been to give you some food for thought on this matter and provide the warning that we need to think about the road down which we are traveling. I would like to thank you for your responses, because it has given me much to think about as well.

The law states that a guardian is neglectful when he "neglects or refuses to provide care necessary for his or her [the child's] health"

The key here is "necessary", and how is that defined?

I think we would all agree that for the parents to do nothing at all would certainly fit the definition of neglect. I don't know anything about this alternative method they were thinking about, and it certainly doesn't sound very promising from the little I've read.

While in this case, then, it seems like it should have been an obvious choice, in other cases it might not be so obvious. What if there are 12 different possible treatments for a particular ailment? Is the State going to mandate I use only the method they think is "necessary" for my child?

I still maintain that choosing _which_ medical treatment our children receive is best left in the hands of the parents rather than the state. The parents have raised the children and know them best. The state can only have limited insight into any one family, and they often don't know the particulars about any one hospital or doctor who might be under consideration. Even Mr. McKellar pointed out cultures that include extended family in the decision making process; again it is not the State.

The State should be making sure the child is getting medical care, but should not be forcing any single hospital, doctor, or procedure on the family.

P.S. I have included the State telling me what healthcare I need to have (rather than just my children) as well because it is closely related. There is talk right now about mandatory Flu shots for everybody this fall, for example.

DougH, but you really hare simply missing the point. Parents can make decisions about medical care. But, Parents cannot make a decision not to treat a child with cancer -- and trust me, I have read every imaginable medical journal article, and all these claims of natural or alternative "cures" are pure bunk -- engendered simply by the fact that Congress has refused to allow the FDA to regulate health claims by "natural" supplement producers.

If these "natural" supplement or food producers were required to provide the same strict medical proof that regulated medicines are required to provide, you would not see any of these claims that mangosteen cures cancer, etc. etc.

These alternative "treatments" are nothing better than placebos, sugar pills. they DON'T WORK against cancer.