Stunting the Growth of a Mentally Disabled Child—Is It Moral?

Physicians have treated a 9-year-old girl, who is severely mentally disabled, by removing her uterus and injecting her with estrogen in order to stunt her growth . The girl, Ashley, is unable to talk, walk, lift her head, clean or feed herself. Her mental development is perpetually stuck at 3 months of age. The stunting was done at the request of her parents who argue that keeping her small means they can more easily care for her at home.

Naturally, this decision has provoked some bioethical handwringing. Uber-bioethicist, Arthur Caplan, at the University of Pennsylvania argues :

"Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families."

Actually, we don't know how much help Ashley's family has received from their church, local charities, or even government social services. Even if the family was showered with such "help" as Caplan believes the rest of us should pay for, it is quite possible that they would come to the same conclusion about what is best for Ashley. Such tough decisions should remain in the hands of parents. For what it's worth, based on the evidence I've seen, I think they made the right decision. 

Ashley's parents make their case here. Photos of Ashley here.

Comments

[Libby Tarian]

Even if the family was showered with such "help" as Caplan believes the rest of us should pay for

This is the key point. What nerve Caplan has to think that a society should force others to help care for those who cannot care for themselves. Another commie looking to punish success and redistribute wealth because taking care of the less fortunate makes him feel good.

[jf]

I predict that some people are going to complain that this is one tiny step down the road to euthanizing the disabled.

[kcjerith]

If only someone would hae thought of this treatment when bush was a child

[Timothy]

I find this somewhat disturbing, but I can't place my finger on anything besides a visceral reaction as to why.

[Smith]

If the baby is shoved back into the womb, then they can just abort it.

Otherwise they'll have to wait until it gets to be Terry Schiavo's age before killing it.

[highnumber]

My initial reaction was like yours, Timothy. I read the family's blog yesterday. I respect and understand their decision.

[Kyle Rose]

Libby, put the emphasis on "force." It's generally a good thing to help those in true need in whatever way you feel is most appropriate, but robbing someone under the threat of force (which is how government achieves all of its ends) is attempting to get a right from two wrongs.

[J.C.]

"Truly, I say to you, as you did it to one of the least of these, my brethren, you did it to me."

[jp]

Such tough decisions should remain in the hands of parents.

I don't think we should be so quick to give parents carte blanche. Parents in this situation & making this decision have a conflict of interest (i.e., stunting growth may be good for the kid but also makes life a lot easier for the parents), and the kid has rights that she is not able to assert on her own. This strikes me as one situation in which the state's power would be appropriately involved -- specifically, in subjecting the parents' decision to an evidentiary proceeding similar to a guardianship hearing, so that it can be ascertained whether the stunting really serves the best interests of the kid. (You know, standing for non-coercion and all that good stuff?)

[tarran]

Libby,

There is a vast difference between helping a handicapped person with the resources at ones disposal, and taking a gun and forcing other people to do it.

In fact, there is a world of difference between persuading people to contribute to a charitable cause and forcing them to do it with the threat of kidnapping.

BTW, just so I keep things straight, you're Ted's sock puppet right?

I get so confused these days about who is who.

[andy]

You're the assholes, Ronald Bailey and Libby Tarian, because you automatically assume he was talking about forced wealth redistribution, even though he said nothing to the effect.

There are far too many people on this site who reflexively go for people's throats if they mention that awful word "society." One can believe that more people should assist/give money to cause X without believing that government should force them to. How is that so hard to understand?

[Ron Bailey]

jp: The kid has the mental capacity of a 3 month old and always will. There is no evidence that Ashley is not well cared for. You might make another decision were you Ashley's parents, but for me it is very hard to see what moral purpose letting Ashley develop physically would serve.

[Warren]

I'm convinced these are sane, loving parents doing the best they know how. That should be enough for anybody. I'd like to see this story fade away. Putting this family under the spotlight of public attention isn't helping anybody.

[Aresen]

The real question is what are the limits of parental control over their children.

While this child has no ability to make rational decisions, I am still very uncomfortable with the notion that the parents can take actions which could be viewed as real injury.

[tarran]

JP,

While I agree that the notion that parents "own" children is a bad one, I can't see how any third party could have a moral claim to decide what is best for the child.

This is actually one of those interesting ethical questions:

1) Should the child be seen as having nay rights? After all, a 3 month old is less sentient than a grown pig, and pigs are not accorded rights in general.

2) If she has rights, are they meaningful? She can't exercise any rights she might have, in that she has no control over her body and cannot form thoughts.

3) Who should have control over her body, in that she lacks such control? Do her parents own her body, in that they are the sentient beings that have produced and maintained it? If other people do not own it, what moral authority does the state have to exercise such power given that it is impossible for such power to be delegated to it?

4) Is the surgery actually harmful? Few would get upset if the parents had her hair cut without her consent, or a bad tooth pulled. Why is this intervention so different?

I find these questions kind of interesting.

For the record, I too was initially emotionally repulsed by the notion, but found the parents explanation of their reasoning persuasive. Bed-sores are no joke. They are a serious health risk.

[steveintheknow]

I am fine with anyone feeling uncomfortable with the decision made, or even calling it immoral. As long as the parents get to make the decision, I am fine with it.

[Cab]

The argument needs to be shifted from whether or not it is moral to stunt her growth to whether or not it is moral to NOT stunt her growth. Stunting her growth not only won't hurt her, it will ensure her better care. On what moral grounds would somebody oppose that?

[Dave B.]

Its not like the parents made this decision alone. There were tons of doctors and even an ethics committee involved. What more could you ask for?

[tarran]

Andy,

It has universally been my experience when someone says "society should", what they really mean is "people who work for the government should force other people to"

In fairness to Arthur Caplan, in my experience, he is pretty good about advocating that people be permitted to make decisions about their own lives. My major problem with him is that he seems to think that the government should be funding all forms of scientific research (for the record, I think the proper answer is th that the government should fund nothing). And the times I've heard him interviewed, he has used "society" and "government" interchangeably.

[Les]

I tend to agree with Cab on this, but it raises questions I've always struggled with.

The thing that sets us apart from the apes is our brain and everything that comes with it. Ashley has less mental ability than a chimpanzee, but if she was a chimpanzee, she would have no rights at all. So what makes us human and therefore deserving of rights? And what makes a chimpanzee who is smarter than some humans undeserving of rights?

[jp]

If you accept (1) that all living people have a right to non-coercion, (2) that parents in this situation have an unavoidable conflict of interest (who wouldn't rather care for a 75-pound invalid than a 150-pound one?), and (3) that one valid purpose of the state is to prevent individuals from initiating force on each other, then I think a good case can be made for the morality of state intervention here. Not that the state should ban stunting in these circumstances, but that it should help make sure the stunting is serving the best interests of the kid.

Let's say you're totally demented and have $1 million in the bank. Your kids put you in a cheap nursing home, to which you have no ability to consent, where the food is insufficient and the staff is careless. Obviously, this is a worse life than you can afford, but it serves the kids' interests because it means more of your estate will pass to them. Normally, kids can't do this without a court hearing, because the opportunities for abuse are too great. I think the stunting-growth situation poses the same problem.

[Libby Tarian]

Libby, put the emphasis on "force." It's generally a good thing to help those in true need in whatever way you feel is most appropriate, but robbing someone under the threat of force (which is how government achieves all of its ends) is attempting to get a right from two wrongs.

I agree totally. For example, it enrages me that the government robs from me to pay police to protect the property of others.

[Libby Tarian]

If you accept (1) that all living people have a right to non-coercion, (2) that parents in this situation have an unavoidable conflict of interest (who wouldn't rather care for a 75-pound invalid than a 150-pound one?), and (3) that one valid purpose of the state is to prevent individuals from initiating force on each other

#1 and #3 are mutually exclusive

[Cab]

Why is there a conflict of interest? Why can't the parents and the child both benefit? What, exactly, is the detriment to the child?

[Eric the .5b]

As usual, the dumber comments are from the "What me, RTFA? I'm too busy trolling!" crowd.

The treatment has been done because the poor girl's bedridden for life, barring mind-boggling advances in medical science. It makes her less prone to suffering the ailments of the bedridden. This has nothing to do with wealth redistribution - it's a question of medicine.

[Timon19]

When I heard this story yesterday on the BBC World Service, I had much the same sort of visceral, but unidentifiable objection. Then I listened to some of the arguments for it and was persuaded to the parents' side for the most part. Except then someone read a blog post where the parents said something like: "We can put her on a pillow and she just stays there. We want to keep our 'pillow angel' (yes, they said 'pillow angel') forever".

That is non-specifically creepy. I can't put my finger on why, but it is.

Then again, both the Englishman and the Irishwoman arguing against used 5% of the logic of most of the parents' side, so...

[Mr. Nice Guy]

Yeah. There seems to be quite a bit of buzz over the internet and the newspapers over this story, with many people weighing in.

So this child will forever have a brain of an infant, so they are using modern medicine to ensure that brain is forever housed in an infant's body?

How can anyone even begin to debate this? The whole thing is just seriously fucked up. Fucked up.

[jp]

Why is there a conflict of interest? Why can't the parents and the child both benefit? What, exactly, is the detriment to the child?

The parents and the child can both benefit, as seems to be the case here. But what about the parents whose child, for example, only appears to be stuck with the intellect of a 3-year-old, and who find a doctor who sympathizes with them and is not too particular about ordering tests and what-not? If the parents have the final say, then that child will be stuck in permanent pre-pubescence, even though she has (let's say) enough intelligence to enjoy adulthood as much as someone with Down syndrome does. That child has suffered a detriment without having any say in the matter and without having any independent review of the parents' decision.

[lunchstealer]

JP, There's already an aparatus for state intervention, if necessary. There is some state agency, usually some sort of Child Protective Services department, that has authority to prosecute child abuse.

I think the biggest problem with state intervention is deciding WHEN the state should intervene. Here we have one case where it is arguable that the state could intervene, but we shouldn't build policy based only on the most extreme case. It's easy to argue against state intervention in trivial cases like 'the parents decided not to buy cough syrup for their kid with the flu'. But I think this one is a grey area, and I don't think it's necessary to grant a new state power just on the basis of this one case.

Ultimately, anything that makes caring for her easier means she's going to be less likely to be neglected. So if it's in the parents' best interest, that's less important than the fact that this is arguably in the child's best interest as well.

[jp]

There's already an aparatus for state intervention, if necessary. There is some state agency, usually some sort of Child Protective Services department, that has authority to prosecute child abuse. . . . I think this one is a grey area, and I don't think it's necessary to grant a new state power just on the basis of this one case.

I agree -- the apparatus probably exists already in most, if not all, states. It would be a matter of government agents' deciding to look at this treatment if (as I expect) it becomes more common.

I'm arguing strongly for the interventionist position not only because I think it has a lot of merit but also because I'm surprised that so few commenters here and at Marginal Revolution and on my local talk radio station seem to see the potential for abuse as this treatment comes to the awareness of caregivers. In addition (full disclosure), I manage the assets of my demented mother, and one of my sisters-in-law is mentally retarded and will probably become my wife's and my responsibility within a few years.

[Shelby]

I support what Ashley's parents are doing in this horrible situation. I wonder, though, what the proper course would be if her mental age were a bit greater? My initial thought is that if it were, say, six years, most people would strongly object to permanently "infantilizing" her body. What if it were two years? Any thoughts?

[Robert]

If I could be convinced that the kid has no concept of the future, then I'd have no problem with her parents killing her, inasmuch as she wouldn't mind. However, it seems the parents don't want her dead, and actually like having her around as a big baby. So then the question becomes not whether she has a concept of future, but whether she anticipates growing up. Again, if she doesn't anticipate growing up then she can't mind not growing up.

[Maurkov]

I don't see how this is any different than getting a feeding tube.

Inappropriate for healthy people? Check
Will aid in her care? Check
Is it the least invasive way to achieve the medical goal? I don't know. I'm not a doctor.

Ethicists should be thinking about it. There is a boundary condition where this treatment isn't appropriate for someone who will eventually develop a 3yo's or a 7yo's cognitive ability. But in this case, it's a no-brainer.

[GM]

I can't believe people are actually debating the ethics of this. It is a total no-brainer. Ashley will in no way be served by full sexual maturity. The parents rob her of nothing. The visceral reactions that people speak of have more to do with Ashley's disability than with any procedures carried out at the behest of her parents.

[Eddy]

I'm arguing strongly for the interventionist position not only because I think it has a lot of merit...

jp,
Assume the situation was reversed. The family wanted the child to grow normally but the State intervened took the kid and then enforced the stunting. Would you still advocate intervention?

Flip it back. If the State intervened and stopped the procedure does that imply the State accepts the responsibility for any abuses that result from that decision? Inasmuch as we already know the answer to this last question is no and that abuse by the State is at least as likely as by an individual, why should the State be allowed a choice?

[jp]

Eddy -- The role of the state would be as a check to help make sure that the situation really warrants the stunting procedure. (I wouldn't support a law that empowered the state to require that kids be stunted.) If the parents can make a sufficient showing, then they would be permitted to do it. I think we agree that the kid has a right not to be abused, that the kid is totally powerless, and that there are parents who abuse their kids or even use them as instruments. Judges have been known to make dumb decisions, too. But on balance I think the net amount of abuse will be lower if we require parents who want to use the stunting procedure to establish before a judge that it's appropriate for their kid.

[Shelby]

I can't see that involving a judge is more likely to lead to the right outcome than, say, involving an ethics panel. And it's not as though doctors are going to be lining up to do the things Ashley's parents have had done. Any doctor, and any insurance company paying for it, will insist on thorough vetting. It's really a non-problem, given the need to have doctors involved. (They aren't saints, but their own self-interest will lead to this result.)

[jp]

I don't have any experience with ethics panels, so I can't really form an opinion on whether they'd work as well as or better than a judge. I will say that family court and chancery court judges do this kind of thing regularly, know how to get the most out of adversarial presentations, and have a nose for when witnesses are BSing, plus the judicial system provides a well-established procedure for review. The judicial system worked well, for example, in the Schiavo case (it was the legislators who mucked that one all up).

And it's not as though doctors are going to be lining up to do the things Ashley's parents have had done.

Maybe, maybe not. A tearful mama at her wit's end can be pretty compelling.

[Xmas]

I think the big issue here is that the girl is unable to move around on her own. If she gets too big for her parents to move, she'll suffer from bed sores and other complications of being completely bed-ridden.

Also from the article, she had started developing sexual characteristics at age 6 (precocious puberty is the proper term, I think.) They've already taken drastic steps to stop that process.

The British are all over the story because, in Britain, she would have had an advocate assigned by the court before any such medical procedure was taken.

[Eddy]

The British are all over the story because, in Britain,...

they need to be told where to put their pens.

[grumpy realist]

Dunno how much relevance this has to the story, but what I read wasn't 3 years old mentality, but 3 MONTH-old mentality.

There's also a great different in slinging around a 40-60 lb person and a 150 lb person.

And for all the people who feel "icky" about this, I haven't noticed any of them volunteering to run and join in the ranks of people caring for this girl.

It's very easy to hold a moral opinion if the adverse effects never fall on you.

[Ted]

Just so you folks know, Libby T. is a sock puppet I'm using to troll the forum. Nice to see all I need do is change my name and all you suckers pile on. Bravo.

[plunge]

I'm a little sick and tired of advocates for the disabled going off the trolley track. There is precisely 0 chance in our society of disabled people being euthanized. And yet they speak as if this was just right around the corner, seizing on cases like this and the Schiavo one and then COMPLETELY IGNORING all the other _specific_ factors in those cases that make them very very different from anything else, and very very far from a general policy.

It's as if Al Sharpton were screaming that we're THIS close to the genocide of African Americans because a hospital accepted a DNR for an elderly black man.

[jgray]

mental capacity of a 3 month old?

if that's all it has they might as well
kill it and get a dolphin or an elephant or something. at least those would be smarter

[Robert]

"There is a boundary condition where this treatment isn't appropriate for someone who will eventually develop a 3yo's or a 7yo's cognitive ability."

Why should eventual hypothetics matter? As long as you make sure to prevent the person from developing that cognitive ability, the person never knows s/he would/might have had, and so misses/loses nothing. All value is subjective. If you don't miss it, you suffer no loss.

[pigwiggle]

Why should eventual hypothetics matter? As long as you make sure to prevent the person from developing that cognitive ability

From what I have read, they aren't retarding cognative development, rather preventing sexual development.

[Larry A]

Caplain's argument: "Keeping Ashley small is a pharmacological solution for a social failure - the fact that American society does not do what it should to help severely disabled children and their families."

From the parents: Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor's call her condition "static encephalopathy of unknown etiology", which means an insult to the brain of unknown origin or cause, and one that will not improve. That's a lot of expensive help. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists. That's a lot more help. And the surgical procedures and estrogen therapy aren't cheap either. In short, the parents were given a great deal of help, including the treatment to stunt Ashley's growth.

The committee includes about 40 individuals from different disciplines and is evenly composed of men and women. After we presented our case we waited outside while the committee deliberated the issue. The committee chairman along with Doctor Diekema, ethics consultant, conveyed the committee's decision to us, which was to entrust us with doing the right thing for Ashley. There was one legal issue that we needed to investigate related to "sterilization" of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley's case due to the severity of her disability, which makes voluntary reproduction impossible.

Personally, that is "government intervention." The ethics committee had the power to refuse the treatment, and decided it was ethically justified.

I will say that family court and chancery court judges ... know how to get the most out of adversarial presentations,

This was not an "adversarial" presentation, and should not have been turned into one. Ethics committees are specifically formed to answer just these questions, and if there is a credible dissent within the committee a judicial appeal is nearly automatic.

This one ain't broke. Don't fix it.

[jp]

In thinking about Larry's comment, I've done some follow-up research on procedures for the termination of life-sustaining treatment of people in permanent vegetative states. It appears that in many (perhaps most) jurisdictions, the surrogate decisionmaker can make the decision to terminate treatment "in an informal forum," and then that decision may be challenged in court by interested parties (including family members, the doctor, and the hospital). If it's challenged, then the surrogate decisionmaker has to meet the legal standard for establishing that the termination of treatment is what the patient would have wanted (or, in some jurisdictions, what a reasonable person would want). See, e.g., In re Guardianship of Browning, 543 So. 2d 258 (Fla. Dist. Ct. App. 1989). Thus, it appears that, if the surrogate decisionmaker's decision is not challenged (i.e., the doctor, hospital, etc., go along with it), the life-sustaining treatment is terminated without any judicial review.

Since that seems to be the case for the decision to essentially end someone's life, and AFAIK it seems to work all right, then I guess a comparable regime will work for the decision whether to stunt a child's development.

One caveat, however, is that the surrogate decisionmaker usually has some information about the patient's wishes regarding end-of-life treatment, or at least we can consult our own life experiences and extrapolate from how we would want to be treated. On the other hand, with a patient who has never developed beyond a 3-month-old's intelligence, it's obviously impossible to have information about how the patient would want to be treated, and likewise we have no comparable personal knowledge on which we can base guesses about the patient's wishes or foregone experiences. So there is a difference worth considering between the protections that should be afforded to a once-normal adult who became a vegetable and those that should be afforded to a person who never fully developed into self-awareness.