Recommended By Dr. Mom

New at Reason: Another kid is gravely ill; his doctors and the state insist on a medical procedure; his parents refuse (not for religious reasons this time, but for some understandable medical reasons). The old question: Do you have the freedom to kill your kids? Ron Bailey gives a diagnosis.

Comments

[Madog]

I'm with Ron. I'm not sure what the cut off point between childhood and adulthood should be though. 18 or 21 always seemed a little arbitrary.

[Citizen]

Consider the case of an elderly parent who is mentally unable to make a reasonable decision about their medical treatment. We allow that their family (spouse, children, PofA) make that decision for them. And while it is illegal to strangle your elderly mother when she is close to death, it IS legal to refuse treatment for her. The result is the same but the mode a bit different.

I think that this is at least relevant in the issue of children. When people are unable to make rational decision for themselves, we generally permit others to do that for them - even if the decision is potentially life ending. Seems like that's what's going on in the case of this child.

[MD Spouse]

An excellent article, with excellent citations to JS Mill. I believe the word "children" should be replaced with "dependents."

My spouse is a surgeon at a large hospital in a major city. A family last night informed the hospital staff they did not want their 64-year-old mother intubated, in order to help her breathing problem, or treated invasively at all. She suffers from lymphoma. In my spouse's opinion, this woman is eminently treatable, but the family seems to have entered into a "death watch." I asked what one does in such a case, to which the answer was, one abides by the family's wishes, and one documents one's actions accordingly.

I'm not sure what rights society has, what rights dependents have, and what rights guardians have, but such stories as the one my spouse told me sadden me to great extent.

[Tommy_Grand]

good article. tough issue

[Kevin Carson]

The question remains, in case of the incompetents of dependants, who is a more competent judge of their welfare: the parents or the State? Given that the State's "wisdom" reflects the interests of the licensed White Coat Mafia and Big Pharma, I don't give a rip for its evaluations of chemo.

I for one would not under chemo under any circumstances. It wrecks your immune system and leaves you with a liver that has trouble detoxifying an aspirin. The whole theory behind it is that it's slightly more toxic to the cancer cells than to the rest of you--so if you can survive it, you might have a few more years cancer free, with what's left of your liver. Shit on that.

I would instead probably undergo an intensive detoxifying regime based on raw foods, and take large amounts of B-17, Hoxsey's Red Clover, green tea, and megadoses of antioxidants. I'd put the rate of success of such "patent medicine quackery" up against chemo any day.

[Eric Hanneken]

The problem with vesting the state with that much power over children is that there's no guarantee they'll use it wisely (witness public education). Parents have more incentive, and more knowledge to make good decisions for their children. Sometimes that means trading off quantity of life (or probability of living) for quality of life, but bureaucrats are biased toward measurable values.

On the other hand, let's not forget that there are three parties here: the state, the parents, and the child. If Parker Jensen wants the chemotherapy, I don't think the rules should force him to obey his parents. As Bailey noted, children are a tough question for libertarians, and I don't pretend to have all of the answers.

[fyodor]

It's hard to imagine siding with the parents IF the kid wants the therapy. But if the kid goes along with the 'rents, I'd have to leave it to them. Not sure where this fits in the presumed either/or principle...

Sidenote: It's usually assumed that we're prejudiced to think that doctors are men. But I started out reading MD Spouse's post with the assumption that the spouse who is an MD was a woman, until I realized that MD Spouse was being deliberately coy on the subject and that I had no way of knowing either way. Does this mean that my expectation that Hit & Run kibitzers will be male exceeds my expectation that a given doctor will be male? Or does it mean...something else? (I suppose they may also be a gay couple, though perhaps that would indicate a not (yet) technically accurate use of "spouse"...)

[fyodor]

Guess I crossed posts with Eric Hanneken!

[thoreau]

The case of this kid is particularly tough. The parents seem open to medical treatment, but they believe that in this case the potentially devastating side effects mitigate against further treatment. I might evaluate the risks in a different manner, but I understand their point. These are not recalcitrant parents substituting quackery for medicine or people who really don't care if their kid dies.

So I don't know about this particular case. The parents deserve considerable leeway in making decisions, but the kid deserves the best chance of survival. So I don't know whether it's appropriate for the authorities to intervene on behalf of the kid. But I do enjoy Ron Bailey pointing out that even if we keep our eyes clearly focused on matters of principle there will still arise thorny cases that defy easy solution.

And Kevin, speaking as a scientist who has great respect for my colleagues in biology, medicine, biochemistry, and statistics, I'd say that the case for modern medicine has already been made and won. Adults who want to opt-out are free to do so, of course. But I kind of enjoy the fact that the "White Coated Mafia" was able to prevent me from losing vision in my right eye, and I don't begrudge "Big Pharma" any of the money they made on the medicines that saved my eye.

Better living through chemistry, baby!

[Todd Fletcher]

The article cites statistics for kids who may have died needlessly from lack of treatment, but how about balancing this with statistics of how many have been killed by doctor prescribed treatment? Isn't that also a concern?

[Mark A.]

thoreau, hear hear!

Kevin,

When was the last time you went to see a, ahem, "white coat mafioso"? I don't know how it is where you live, but my doctor is quite open-minded about suggesting herbal remedies and the like (she facetiously refers to herself as a 'witch doctor'), though she also will prescribe "Big Pharma" drugs as she sees fit. In any event, I don't have to have the prescriptions filled, and there are a number of cases when I passed. The doctor I had before her was much the same way regarding alternative medicine, as well as the one before that (I've moved a lot recently).

Point: One's doctor very likely wants one to get/ feel better. One is, after all, her customer.

[Phil]

I'd put the rate of success of such "patent medicine quackery" up against chemo any day.

Oh, let's do, let's! You first.

[Anonymous]

This is bullshit. Until we know who to blame for the cancer, we ought to let them make up their own minds.

[Steven Crane]

I'd like to come up with a witty "It's for the children!" remark here, but I'm unable. Rats.

[Kevin Carson]

Mark A.,

I don't dispute anything you say. I know personally of local MDs who recommend Vitamin E and CoQ-10 for congestive heart failure, for example, and I have great respect for Andrew Weil. But such practitioners are definitely struggling against the "dominant paradigm" and the licensing boards' view of "accepted practices."

thoreau,

I'd go without hesitation to an MD for any kind of physical trauma like a fracture or laceration, or for an acute infection like pneumonia (the allopathic La Cosa Nostra saved me from a bout of the latter five years ago). For a chronic illness, however, I'd take anything a mainstream MD says with a grain of salt, and put his advice in the mix with my own research into the alternative and integrative options.

[Jason Ligon]

I'll take anything that can survive multiple double blind studies against a placebo that were correctly arranged. Nary a one of the purported natural wonders seemed to meet that test when I looked them up in consideration of my wife's grandmother's cancer.

Hyper oxygenation, shark cartiledge, that quack in Mexico with the herbal bottle, vitamin megadoses, cleansing and 'purifying', and raw foods were all in the bag a few years ago. No serious scientific study places any of these things above the sugar pill, so I'll have the sugar pill and the unclean cheeseburger, thanks.

Chemo is horrible to watch, and it is only effective for certain cancers. It certainly wrecks the body and should not be sold as a cure, but that doesn't mean lawn clippings will do the trick.

[thoreau]

Kevin-

I'm all for exploring every option. It could very well be that plenty of "alternative" therapies have real benefits. My problem with so many purveyors of "alternative" therapies is that the information on them is full of fog and mumbo-jumbo.

I have nothing against the ancients who systematically went through countless herbs and therapies and documented which ones worked. We owe them a tremendous debt. And I have nothing against them applying the best theories available at the time and saying "Well, the reason this herb works must have something to do with balancing ying and yang" or whatever. But modern science has produced a much more comprehensive picture that provides tremendous insight into what's actually happening.

Drawing on information at every imaginable scale, from the details of individual protons and electrons on a molecule, through the molecular level to the cellular level, the tissues, the organs, the functioning of organ systems, and observations on the body as a whole, modern science can put together a very good picture of disease and health. One can start with an observation on the macro level ("Patient has poor motor control"), integrate that with information on particular muscles and nerves, combine information on the cells, and go all the way down to the details of chemical bonds in the pharmaceutical molecules that will treat the problem.

Let's face it, the ability to combine information from so many different sources, so many different scales of observation and levels of abstraction, is far more "holistic" than some babble about "positive energies". Now, the tremendous power of this approach may breed arrogance and reluctance to consider older therapies that have been tested by the equally powerful approach of time and experience. But the best medicine will be obtained when time-honored cures are combined with a very modern scientific understanding of the human body that draws on so many different types of information.

I'm not saying that you, Kevin, fit into the "it's positive energy, man" mold. I'm saying that most of the alternative medicine fans that I've encountered personally have fit into the mold, so I'm skeptical of the advice given by purveyors of alternative cures. If you can point me to more reputable sources of info I'd be interested.

[Warren]

This is NOT a tough issue. There is no compelling evidence of mental incompetence, therefore there is NO state interest. NONE.

I'm surprised that Ron, who has repeatedly argued for Laissez Faire policy in regards to all manner of medicine looming in the near future, should advocate that children should be ripped from the arms of loving parents and subjected to the tender mercies of a Nanny-State.

[thoreau]

Warren-

I think Ron's point is that parents who deny their children life-saving medical care are not acting as loving parents. In that case, the "nanny state" is the lesser of 2 evils.

The main question is whether or not the parents are making a reasonable decision that balances the risks of the therapy against the risks of avoiding the therapy. If the decision is a tough call then the wishes of the parents should be respected. If they're making an obviously bad decision then their biases and/or ignorance is interfering in the well-being of a child who could enjoy a healthy future.

To sum it up in a one-liner: A child is a responsibility, not property.

[Mark A.]

Madog,

I've long thought the same thing about the minority/majority issue. I am certain that there exist thirteen-year olds with a MUCH better grasp, at least generally, of many important personal and societal issues than many forty-year olds (of course, I'm sure there are many, many more 13-yr-olds who THINK they do). I think the arbitrariness of the 'age of majority' stems at least in part from the fact that emotional and social maturity and reasoning capacity are not discrete variables, i.e., you do not suddenly become mature at a well-characterized age. It is a smooth, continuous, evolutionary process that (at least for me) never stops (or has not yet).

Perhaps the age of majority can stay at 18 (unless you want to have a drink now and then -- we couldn't have that! tsk tsk tsk :)), but younger people can sue for majority with all rights and priveleges thereunto appertaining. The problem with this approach, of course, is that it gives the gov't one more thing to do badly.........

[Michael Yuri]

I was disappointed that an article subtitled "Is Libertarianism for Adults Only?" seemed concerned only with which set of adults gets to make life and death decisions, rather than whether the kid himself deserves any say in the matter.

Obviously, this is still an important issue in cases where the kid is too young to understand what is happening. However, it seems to me that 12 years old is well beyond the point where a person should have to sit helplessly while others (regardless of whether it's his parents or the state) make life and death decisions against his will.

Medical decisions like this often have no clear right or wrong answer. It is very possible that the course of treatment with the highest survival rate also carries with it the highest risk of serious side effects or permanent disability in the event that the patient does survive.

Which treatment is better is often depends a lot more on risk tolerance than on any objective standard. The more true this is of a given decision, the more reason that that decision should be placed in the hands of the individual who is actually affected.

[Russ]

The case of a guardian's responsibilities to the dependant isn't much differenct from those of a trustee to a beneficiary. A guardian's failure to act in the best interest of the minor is a breach of the implicit contract between the two.

If (and only if), in the likely case that the child does die or suffer other harm, the "allegedly negligent" parents should be tried to determine if they were in breach of contract.

Knowing that one's child-rearing choices may be subject to a jury's review can only help to reinforce the responsibility associated with guardianship. So by all means, refuse the treatment if you believe it to be the right choice, but be prepared to accept the consequences. That's what responsibility is all about and what juries are for.

[Wild Pegasus]

If the young man is 12 years old and of sound mind, I see absolutely no reason whatsoever that anyone should make his medical decisions for him. A 12 year-old is not fully cognizent as an adult, but he is getting close. Most ancient societies had a rite of initiation that made 13 year-old boys into full-fledged men. It's only recently that the law and society have treated 17 year-olds and even 20 year-olds as children to be protected from harm through the power of the state. The warriors of the War for Independence would have scoffed, as farmers with wives and children at the ripe age of 15 were out taking it to the British.

The boy should decide.

Now, if the boy were 4 years-old or not of sound mind, it falls to the person who holds the power of attorney to decide whether the boy is treated or not. Incredibly, I just read a supposed libertarian say that the state holds the ultimate power of attorney over children instead of their parents. Perhaps he might consider the thousand years of common law that says otherwise.

FWIW, his cite from Mill is why we deontologists stress a priori over utility. Mill went right into public education, the grossest folly ever foisted on a free people.

- Josh

[jim winstead]

something missing from ron's piece (as far as i noticed) is a mention of the doctor they were apparently turning to for a second opinion. q daily news has more.

[Kevin Carson]

Jason Ligon,

How many controlled, double-blind studies have been done on balloon angioplasty?

[Kevin Carson]

P.S. It's pretty hard to test Hoxsey's Red Clover on a level playing field with the other stuff when the FDA jackboots are shutting down the tests.

And it's funny how Big Pharma and the government (like there's a difference) steer most of the money for those controlled, double blind studies toward stuff that the drug companies can patent.

[Sebastian]

As someone who works for a company that develops drugs, I can assure you that there is real science behind the process. It's not just a conspiracy between the big drug companies in the government. If the stuff didn't work, it wouldn't be allowed on the market.

I can also assure you that there is a difference between Big Pharma and the FDA. Just ask Schering-Plough how much they are enjoying paying a half billion dollar fine for violating CGMP regulations.

I'm not arguing there aren't problems with the current regulatory system, but I don't think it can be argued that the FDA and Big Pharma are involved in a conspiracy to screw the American consumer.

[Abiola Lapite]

One point that none of those who are advocating that the boy decide have taken into account is the influence of parents on the decisions of their children. Instead of acknowledging the psychological realities at work, everyone seems to be treating this story as if it were merely a gedankenexperiment in a law class.

How many children are there in the world who would be able to ignore the pressure to go along with whatever their parents had decided on their behalf, especially if the parents had gone to the extreme of fleeing the state to ensure that they got their way? How realistic is it to expect this child, who has known nothing of life, to be capable of weighing the pros and cons in a detached manner, when the natural human tendency is to expect that one's parents want the best for oneself, and, in particular, that they would go to almost any lengths to ensure that one survives?

Frankly, I don't think that there's any real room for argument here about what the right thing to do is, if one possesses the slightest bit of moral feeling. Only a simple-minded ideologue would argue that the parents' right to decide for their children must always come first, even at the cost of the life of their child. Would any of you making arguments of this sort continue to hold your positions if this were a case of incest?

The child's needs absolutely must come first in this situation, and the facts of the matter seem simple enough - whatever the consequences of chemotherapy, they are easily outweighed by the fact that without it, he almost certainly will die. It is just plain stupid to talk about possible sterility when the alternative is certain death, a state that is hardly ideal for the maintenance of fecundity, and as a certain insightful character once pointed out, even a living dog is better off than a dead lion. Unless the results of chemotherapy will be to keep the child in a lifelong state of physical agony, he ought to have the treatment, and as soon as possible.

[howdt]

'Adults who want to opt-out are free to do so, of course.'

really, where?

'he almost certainly will die'

as we all will
---
Do your own research into the efficacy of any substance that you plan to use. Real medical science is not what you read about in the papers (as I'm certain Bailey will attest). People (and MDs) should learn a bit more biochemistry rather than relying solely on big pharma for clinical and chemical information.

But who really cares what is in the pill?

[Anonymous]

the thing is the doctors dont know if he might be among those that for whatever reason never have a recurrence of their cancer. i dont know how many people ive met that said the docs gave them six months and there they are years later still alive and kicking.

[Abiola Lapite]

"as we all will"

Huh? So why don't you stop looking out for traffic before crossing the street? Or start juggling steak knives with your eyes closed? You're gonna have to die sometime anyway, right, so, hey, why not now?

[nm156]

Life, liberty, and the pursuit of happiness. Treat the boy. And, God willing, none of us will ever have to make this kind of decision for one of our own.

[fyodor]

The main question is who speaks for the boy: himself, his parents or the state -- or a combination thereof?

If the state has a role, then the "reasonableness" question becomes inevitable.

[Jim]

I guess I'm conditionally with the 'keep the government out of the decision' crowd. It will be better on average to let parents (and perhaps their children themselves, if they be of soundness of mind to make the decision) than to delegate such things to the government.

A friend of ours had a two year old daughter with cancer. The cancer was in the girl's hip and the doctors recommended amputation up to the hip bone. Her parents were understandably reluctant to accept such a lifelong-disabling treatment on a girl who had barely even learned to walk. They then ended up getting a second opinion, went for Chemo treatment and the girl if fine now, both legs intact.

I remember her telling us, before this was all over, that every now and then she would wake up in the morning and feel good about life for 30 seconds or so, and then remember, 'Oh my God, my baby has cancer.' I can only imagine what that must have felt like. I can't really imagine having to deal with that and then having to run from the law because you disagreed with a physician's diagnosis and simply wanted to get addtional opinions. This is a fairly clear cut case of why you don't want to get the government involved in these types of decisions.

I'm also surprized that Ronald Bailey, who has spend so much time writing about the parent's right to decide for their children with respect to issues of genetic engineering, would back state action in this case. If anything this is the exception that proves the rule. The vast majority of parents love their children and want to do what they think is the best for them. Perhaps their fears of chemo are warranted, perhaps they are not. In any case, I don't think the government should be the deciding voice in this issue.

[Anthony]

This isn't such a hard case, because there are reasonable odds for survival without chemo, and significant odds of death even with chemo; chemo is pretty debilitating, and not just in the ways mentioned in the article. In this case, I'd say the parents have the right to make such a decision, though I think the child ought to have some right at an age less than 18 to make his own decision on such matters.

A hard case would be where the parents wanted to deny treatment for religious reasons, and the child wanted treatment, and didn't share the parent's faith in their faith-healer.

[Highway]

I think I'm in the camp with Anthony, and conditionally on the side of the parents. Personally, I don't know if rushing into chemo is the best thing for this kid, and I doubt any news stories could communicate enough information about it for us to judge. I realize that some parents feel rushed into medical treatment, and don't really feel like they know what's going on. I also realize that doctors feel an urgency about most cancers, especially in kids, and want to start treatment immediately. But it seems that that there's some doubt at least in what the cancer diagnosis is, and whether it's still continuing in the boy. Chemo's an awfully serious thing to do 'just to make sure', especially when there's a reasonable chance that it's unnecessary.

If I were in the situation, I'd want to wait a little bit before putting my kid through chemo. Maybe spring for an MRI or CAT scan on a frequent basis (every 3 months or something) to see if he'll get another tumor. THEN maybe go for the chemo. But not while there are reasonable doubts.

[Anonymous]

The problem with the government's case is that they are making the parents' reasoned decision tanatmount to killing the kid or sentencing him to death.

Part of being a libertarian is understanding that you should never ever give the government the benefit of the doubt.

In fact, I think I'm a libertarian because I have a younger sister. Throughout my upbringing, during every conflict with her, my parents (especially mom) gave me the same line: "You're older, you should know better." This was used when I was 8 and she was 5, and when I was 17 and she was 14. I think I reached the age of majority at age 6. And I think that's reasonable. Every kid has the potential to be smart, loving, and responsible by that age; anyone who doesn't is being raised poorly. But do you think the government wants smart, loving, responsbile kids by age six? Hell no.

[R.C. Dean]

"The main question is whether or not the parents are making a reasonable decision that balances the risks of the therapy against the risks of avoiding the therapy."

This is a very dangerous road to go down, because it makes every medical decision that every person makes, for themselves or others, subject to review by a government agency charged with determining whether it is "reasonable."

Medical decisions made by sane, decisional people should not be subject to "reasonableness" review by bureaucrats. Period.

[Kevin Carson]

Sebastian,

If by "conspiracy" you mean a cabal of persons meeting in a secret headquarters, twirling their mustaches and rubbing their hands together, I agree (unless, of course, the Carlyle Group includes drug companies). You don't need a conspiracy centered on a small group of persons. The state serves corporate interests largely automatically, because of the interesting ways that corporate and government institutions intersect.

[Rahman Sabrina]

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