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DBL%20Hendrix%20small.png College chemistry, 1983

Derek Lowe The 2002 Model

Dbl%20new%20portrait%20B%26W.png After 10 years of blogging. . .

Derek Lowe, an Arkansan by birth, got his BA from Hendrix College and his PhD in organic chemistry from Duke before spending time in Germany on a Humboldt Fellowship on his post-doc. He's worked for several major pharmaceutical companies since 1989 on drug discovery projects against schizophrenia, Alzheimer's, diabetes, osteoporosis and other diseases. To contact Derek email him directly: derekb.lowe@gmail.com Twitter: Dereklowe

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May 20, 2009

But You Can't Make Them Take It?

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Posted by Derek

Well, we can all study biochemical mechanisms in tumor cells every day of the week. And we can crank out tens of thousands of potential clinical candidates to hit them, run the assays, and then turn around and do it again. We can send things through all sorts of tox testing, take them to the clinic, try them against all sorts of terrible cancers, and amass enough data to make it through the FDA. Then we can let the oncologists continue to try variations, combinations, and regimens in the continuing search for something that works.

And every so often, we actually succeed. Childhood Hodgkin's lymphoma has one of the highest cure rates of all cancers. We can actually do something about that one (as opposed to, say, pancreatic cancer, which we can't do much about at all). Children who would otherwise die - and die slowly - now get a chance to live, to grow up.

But we can't, apparently, convince everyone of this. Many readers will have heard over the last few days of the case of Daniel Hauser of Minnesota, a 13-year-old diagnosed with Hodgkin's a few months ago. Instead of going in for rounds of chemotherapy, the boy (who has said that he doesn't believe that he's sick) and his family have opted for "Native American alternative therapy", and have fled from a court order. The boy's mother, who apparently does believe that he's sick, has said that she's treating him with "herbal supplements, vitamins, and ionized water".

These will, almost certainly, allow the lymphoma to kill him. Chemotherapy and radiation, on the other hand, will very likely allow him to live. If someone is bleeding to death from an arterial wound, anyone trying to heal them by invoking spiritual powers or alternative therapies would (and should) be shoved aside by any onlooker with a tourniquet. Daniel Hauser is bleeding to death as well: just more slowly, and in front of many more onlookers.

Comments (31) + TrackBacks (0) | Category: Cancer | Current Events | Snake Oil


COMMENTS

1. You're Pfizered on May 20, 2009 8:24 AM writes...

And when he dies his mother will claim that it was 'meant to be'.

Unfortunate situation.

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2. Tyrosine on May 20, 2009 8:45 AM writes...

Individual's right to parent be damned; this sounds like criminal negligence to me.

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3. Zak on May 20, 2009 8:55 AM writes...

If that poor boy dies I hope his mother gets Murder 1.

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4. Hap on May 20, 2009 9:03 AM writes...

He's not old enough to drink, or smoke, or fight, or have sex (well, legally, anyway) - there might be some reason for that. (He can be killed for his crimes in some jurisdictions, though...). At least part of the reason for all of those legal statuses is the belief that children are unable to appreciate the consequences of their actions - that they lack the basic logical framework to understand the effects of the actions and the experience (either first or second-hand) to understand whether those consequences are what they actually want. Given that, I'm not certain why his decision to allow himself to die should be considered writ.

I also wonder how much input/control his parents have had over his decision, and how much information they had to help him make it well. It sounds like they don't have much information, and briongs up the worrying possibility that their son may be dying for the beliefs of his parents. That would be sort of hard to swallow - it's hard enough to die for your own beliefs and to leave others with the consequences of that decision, but it seems reprehensible to expect someone (let alone your child) to die for what you believe, particularly when said death does neither your beliefs or anyone else any good.

People make the decision that the (nonfinancial) costs of cancer treatment are not worth the added life. I just don't see that he has the information or experience to make that decision, and deciding that he can and should die prevents him from having a chance to make that decision for himself someday. It's irreversible, and so when one decides to allow him to die, one ought to make sure that he knows as much as possible about what that decision means.

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5. Adam Man on May 20, 2009 9:20 AM writes...

A real problem today is parents who seem to see a great divide between religion/faith and modern science, as if the discovery of treatments and cures for chronic diseases discounts the ability to believe in God (or equivalent). They will also take offense to anyone telling them to seek treatment on the grounds that it's someone "questioning their faith".

As you said, it's hard enough to die for your own beliefs, but this is not a question of beliefs because it's not a personal sacrifice. It's not an issue of "having faith", it's an issue of "caring for your children dammit". When you're causing harm to others by championing your own beliefs, we're in a whole different place here.

Those parents (and the child who doesn't believe he's sick) need a wake-up call, and unfortunately it's going to come when the child passes away. It's very unfortunate.

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6. Metaphysician on May 20, 2009 9:58 AM writes...

Given that the article describes them as somehow being staunch Roman Catholic, *and* subscribing to some form of quasi-Native American new age health movement, I don't think you should even dignify this situation with "divide between faith and science." The parents don't *have* any coherent faith, just baseless paranoia about modern medicine.

When the child dies ( at this point, I don't think its an if, sadly ), whats the highest charge the mom could be put to? Manslaughter, or negligent homicide?

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7. Hap on May 20, 2009 10:05 AM writes...

I wasn't trying to imply that DH would be dying for his own beliefs, but for those of his parents. Unfortunately, I don't think there'll be a wake-up call, at least for the boy, and probably not for the parents. If the parents go to jail, they'll be "martyrs" (of course, that was a term for people who died for their own beliefs, but...).

The MLK quotation about the most dangerous things being conscientious stupidity and forthright (sic) ignorance seems apropos. It's sort of problematic how often it seems appropriate.

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8. madkathy on May 20, 2009 10:13 AM writes...

I was very sad to read that Daniel and his mother have fled rather than accept the court ordered treatment. I think the parents are making a terrible decision.

However... I am surprised by the strength of disgust and outrage this story has stirred up in the public. Yes, it should make us outraged, but so should the fact that children are going without necessary medical treatments and preventative care, not because of their or their parents' religious beliefs, but because of financial reasons. (I realize this is not the case for the Hauser family.) Shouldn't we be just as outraged, or even more outraged that our society is allowing these children to go without treatments? Of course, it is easier to point the finger of blame at Daniel's parents rather than realize that we are passively making the same choice that they have. The only difference is the justification: theirs is for religious reasons; our excuse is "I don't wanna pay for some bum's kids."

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9. Alig on May 20, 2009 10:26 AM writes...

Dear madkathy, children in America do not go without medical care because of financial reasons. We have a program called Medicaid that pays for care for children of parents too poor to afford medical care. There are also numerous other programs which will provide free or low cost care to finacially distressed families. Children go without medical care because their parents don't seek out the care. Whether it's because the parents are ill informed, lazy or too drunk or high to bother, it's the parents who are the problem. Yes I am outraged that children go without care, but I am outraged at the children's parents, not at society which provides more than ample support for those without money.

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10. Hap on May 20, 2009 10:30 AM writes...

1) Conscious decision is different than neglect - when you know (or could know) the consequences of your actions, and choose to do it anyway, it's different than when you can't. In this case, to impose death consciously on someone else for your beliefs is a whole lot easier to get angry at than neglect, which has lots of parents (at least 100M or so) and multiple causes. Murder (which is pretty analogous) is dealt with similarly.

2) Societies don't have infinite resources. They have to make choices in how to use what they do have (assuming, of course, that they have such choices), and those choices usually have consequences. while I think we ought to have universal health care, that will mean that we can't use money (resources) for other things, which will have costs, as well.

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11. Robert Bruce Thompson on May 20, 2009 11:28 AM writes...

It's tempting to make a facile comment about natural selection and this boy removing himself from the gene pool, but in reality I don't think this matter is as simple as many people seem to think it is.

Daniel is not a child. He's a young adult, whom I think is entitled to at least some degree of autonomy in deciding what treatment he is willing to undergo. Militating against that, he is apparently not very bright, poorly educated, and subject to strong influence from fundamentalist religious wackos. Still, he's old enough to have at least some appreciation of the issues, and I think we need to give some weight to his wishes.

More importantly, I think this is a very slippery slope. We're proposing to use government force to overrule the decision not just of a minor, but of that minor's parent or parents. Frankly, I think Daniel's wishes should be considered even if both his parents were all in favor of chemotherapy. With both Daniel and his parents opposed, I think we're on very shaky ground.

Besides, it really is very difficult to justify logically disputing a decision by someone who is volunteering to become a victim of natural selection.

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12. Edward Virtually on May 20, 2009 11:42 AM writes...

i'm a rabid opponent of the state using its power to force people to undergo medical treatment. if the state was trying to force the child to undergo mandatory education or counseling, it would not be so objectionable, and i still think _that_ should be the goal here. but the idea of the state strapping an unwilling 13 year old to a table and keeping them sedated so they cannot resist (the boy has vowed to punch and kick anyone who tries to administer chemo therapy) is repellent and is not a valid use of the state's power.

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13. Anonymous on May 20, 2009 11:52 AM writes...

Many religions hold the belief that our lives on earth are simply a temporary period where we are expected to do God's will until He calls them to be reunited with Him in the afterlife.

Would the discussion change if the boy and his parents admitted he was sick, acknowledged that treatments would be effective in treating the disease, but said they believed the boy would be simply prolonging his wait for an eternal paradise?

I'm not agreeing with them, I just wonder if people are bothered by the fact that their decision is based on religious principles, or if it is the particular variation of religious principles that has people so up in arms.

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14. Hap on May 20, 2009 11:53 AM writes...

1) I think the original argument stands - 13 isn't old enough for the state to respect one's decisions on a variety of life-or-death matters, and I don't really see a reason to overrule those laws here. His wishes are not valueless, but they aren't necessarily well-informed or fully capable, as befits the decision he proposes to make. (With the nomenclature, I'm following what I remember of the Boston Globe style guide, which set 16 as the young man/woman limit, and considering the general physical and mental maturation of females wrt males, that might be optimistic on the male end.)

2) IANAL, but isn't there a variety of case law on the responsibilities of parents for their children wrt medical attention (at least when they can)? This isn't exactly virgin territory for law, I don't think, and I suspect (but don't know) that the case law is unlikely to favor DH/his parents' position.

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15. Yeahright on May 20, 2009 12:13 PM writes...

I once made a deal with my math teacher that if I had gotten an A on the final he would give me an A in the class. I took the test and let me tell you I was very nervous. I didnt do all the needed work in class but I had happen to be the smartest one in the class. Needless to say I score 90 percent and when the teacher saw the test I was scared because the agreement was an A which at the time I was thinking meant I needed to get a perfect score.

This is what I am trying to say there are no perfect scores here. No perfect results. He still has a 15 percent chance to die. And when it comes to the mind and soul that 15 percent might as well be 100. You made the comment about the tourniquet sometimes the best tie doesnt even hold.

I agree with everyone here about the outrage of the mother's actions. But even if I had diminished capacity, if I had to write in crayon or blood do not resuscitate it still should be my choice. I am deeply sadden that no one here understands that. I am deeply sadden that no one can identify with the pain and heartache that a mother and father might feel because they see their child sick and they can do nothing but watch.

Yes he has a chance and everyone should give him that oppertunity but to force it on him is ungodly even if he is a child.

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16. bearing on May 20, 2009 12:36 PM writes...

I also agree that the parents are making a terrible decision.

I give great weight to civil liberties, though, and to the right of a family to remain intact while making the best decisions they can. It's a slippery slope to allow the government to force a person to accept invasive medical treatment. And it's a slippery slope to allow the government to overrule medical decisions made in good faith for their own children.

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17. Hap on May 20, 2009 12:47 PM writes...

1) Except they could do something, and won't. 15% is better than 0%, after all.

2) You're sort of old enough to make those choices. We expect that adults have the ability to reason through their choices, to have an idea what they don't know (or to at least get help if they don't). Children (and he's 13, so that still applies, mostly) don't have either the internal capabilities (logic and reasoning) or the access to people and data that could help them decide what to do, and so we don't assume that they have the choice. If my child won't go to bed, she doesn't get a choice - I am more knowledgeable than she is (mostly) for a long time to come, and I and my wife are ultimately responsible for the consequences of their behavior (which she is unlikely to appreciate). In this case, the parents have decided that the responsibility for their son's life isn't theirs, when it is theirs and can't be refused. Their son won't have the ability to unmake the decision once made - he doesn't have the knowledge now, and won't get it later (because he won't be here). The people who do have it are the parents, and they are refusing to use their knowledge and authority for their son. They are not helpless - they have chosen not to help.

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18. TFox on May 20, 2009 12:48 PM writes...

If Daniel was 38, this wouldn't be in the papers: patients have a near-absolute right to refuse treatment, even if it kills them. The exceptions are things like emergency care for the unconscious and those suicidal due to mental illness. The threshold for the latter is I think quite high; just making decisions your doctors disagree with doesn't count. This case is only interesting because the parents are also making decisions on their son's behalf that go against best medical advice. These happen occasionally, and are hard -- between my repugnance for the state forcing care against someone's will, and my repugnance for the parents' level of knowledge, care and belief, I'm not sure where I'd stand.

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19. Ruth on May 20, 2009 12:59 PM writes...

The newspaper reports this young man has learning disablilities and cannot read (homeschooled). I have an autistic child the same age, and while she can read, her ability to make informed choices is that of a younger child. These parents failed to provide apropriate education/therapy and are now denying this boy life saving treatment.

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20. Metaphysician on May 20, 2009 1:10 PM writes...

*cough* Let me just speak up to say, my reading of the article in question does not scream out "fundamentalist whacko" so much as "new age quack medicine whacko." Note that the Christian sects who refuse medical care are, to the best of my knowledge, all Protestants of some form or other.

Which is to say, lets not go using overly broad brushes, especially when its probably the wrong one anyway.

*resident lapsed Catholic*

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21. enoon on May 20, 2009 2:53 PM writes...

If the mother said that an invisible 6 foot tall rabbit told her to treat her son with fizzy water and vitamins, wouldn't we call her sanity into question? Please. This should be the case with all "belief systems".

All belief is make believe.

The mother seems to be mentally ill -- but wishy-washy news reporters seems unable to call her on it. Just because her "beliefs" are "Native American" she gets a pass on the mental health front? Come on.

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22. Anonymous on May 20, 2009 3:04 PM writes...

Paging Charles Darwin, Charles Darwin to the lobby please.

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23. bad wolf on May 20, 2009 3:19 PM writes...

God, these 'slippery slope' arguments and references to 'natural selection' are ridiculous. Are any of you telling me you wouldn't push a 'developmentally disabled' kid out of the way of an oncoming car? If not, I'm not that impressed with your opinions.

As for the boogeyman of government interference with parental rights, this was a court case in which the state and doctors made a case, to an impartial but apparently better-informed judge or jury, that in this case treatment was required. That is exactly the kind of 'checks and balances' you have in a society, in which parental rights are priveliged but not beyond an impartial juror's judgement. It's not perfect but is neither an example of Big Brother nor Joel Steinberg.

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24. Anonymous on May 20, 2009 3:27 PM writes...

May I remind you that right now a Wisconsin couple is on trial for killing their 11-year old daighter by refusing her medical care?

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25. Chemoptoplex on May 20, 2009 3:53 PM writes...

I reject the slippery slope arguments. This is pretty cut and dried: they are unfit parents and he needs to be removed for his own safey. If he was malnourished because they believed the D in vitamin D stands for Devil and that makes it evil, the kid would be taken away for his own safety. If they allowed him to bleed to death from an injury because they refused to drive him to the hospital because they're not supposed to leave the house on certain days they'd be in as much trouble. Their refusal to take action in this case makes them unfit parents. Once he is 18 years old he can throw his life away for any foolish reason he wants, but until then his parents have a duty to keep him from dying from preventable causes.

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26. Chrispy on May 20, 2009 4:31 PM writes...


One of the main issues here is that Hodgkin's disease if untreated is pretty near 100% fatal. It hasn't been until recently that we figured out how to cure this one, and the cure rate is really quite high.

This boy's parents are ignorant and should be removed from the decision making process.

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27. Bruce Hamilton on May 20, 2009 4:55 PM writes...

Tragic. Unfortunately, these tragedies are media magnets.

Those parents have shoes I would not wish to walk a mile in. I assume that the US, as in New Zealand, requires the court to consider all aspects, take expert advice, and act in the best interests of the child.

By fleeing, the parents have unfortunately created a situation where consensual treatment is going to be very difficult, and the inevitable outside intervention will hurt all involved.

Perhaps the family's past experiences with the health system has made them distrust medical professionals. The communication methods used didn't work.

In a similar case here, the child died,and a subsequent inquiry recommended changes to the way medical professionals communicated options to families to ensure they understood consequences of choices, and also provide continual counselling.

There will be no winners, outside of lawyers and media.

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28. BigSky on May 20, 2009 7:40 PM writes...

Stepping back from the personal responsibility aspects of this specific case, look at the physicians responsibility in cases involving the Non Hodgkins variety of leukemia.
For those patients with NHL they usually start on the Rituxin Mab in the oncologists office even though the labeled Mabs, Bexxar and Zevalin, work better. The thing is, oncologists do very well by administering Rituxin in their office but they don't make anything by referring the patient to a radiopharmacy for the labeled versions... so they usually keep their patients on Rituxin until they prove refractory and THEN send them on.

Sometimes you can't make 'em take it and sometimes you can't make 'em prescribe it.

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29. anon on May 21, 2009 8:12 AM writes...

"Note that the Christian sects who refuse medical care are, to the best of my knowledge, all Protestants of some form or other."

Depends on your defination of medical care; the Pope would have you refuse contraception, abortion, IVF, and stem cell therapy. I would say forbidding abortion in a clear-cut case like, say, anencephaly constitutes unreasonable behavior.

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30. Eric on May 21, 2009 12:28 PM writes...

The courts did consider the child's option, the option of the parents, the religion in question, and the statements from the doctors.

In the end the court rejected the child's opposition because he was unable to understand the nature of the illness, the treatment, or the ramifications of his actions. Being unable to read is probably a contributing factor.

They rejected the parents opinion on the matter because they have no rational basis for believing that this treatment will work. The law requires the parents provide reasonable medical care and their particular choice of care has no support from the medical community ( because, let's be honest here, they are quack remedies ).

The courts rejected the religious arguments because the boy could not name and elaborate on any major tenant of his faith.

And to top it off we are not dealing with giving a kid some anit-biotics here. We have a terminal illness here. Left untreated he will, short of a miracle, die. Treatment is almost 90% effective ( would have been 95%, but they bailed on it the first time ).

Had he been an adult without any major mental competence issues this would be a non-issue, but as a matter of law and good public policy we require that parents provide reasonable medical care. Had the parents and child been steadfast and knowledgeable in the faith it would have held more sway with the courts. Had this treatment been less effective, or the ramification of withholding less severe all would have changed the outcome.

But this is not the case, this was a well reasoned court decision that probably should have happened earlier.

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31. Jonadab the Unsightly One on June 1, 2009 6:38 AM writes...

Notwithstanding the undeniable tragedy of cases like this, I do still believe it's on the whole a good thing (for society in general) that people have the right to refuse medical treatment. Yes, some people will exercise the right for bad reasons and in an ill-advised fashion. But that's true of any legal right you allow people to have.

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