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The "Ashley Treatment"

Bioethics

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1theolojen
Edited: Mar 15, 2007, 2:52am Top

Do you think parents of severely disabled children should have the option of seeking treatment that will keep them "child-sized" their entire life?

This topic generated some VERY interesting discussion with my undergrads. I suspect some of you have heard of the "Ashley Treatment." See the following articles:

http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html

http://blog.bioethics.net/2007/01/is-peter-pan-treatment-moral-choice-no.html

and Ashley's parent's blog: http://ashleytreatment.spaces.live.com/blog/

2kageeh
Edited: Mar 15, 2007, 4:00pm Top

I understand the reasons the parents give for doing what they did to their daughter but I believe it was ethically wrong for the physicians to have agreed to it, and I do not believe it is legally defensible.

An analogous situation was common decades ago when parents of the mentally disabled sterilized (or were forced to sterilize) their children "for their own good" -- i.e., 1) to prevent further sullying of the gene pool (eugenics) and 2) to prevent them from bearing children who may or may not become further burdens upon society. That heinous practice was legally sanctioned in 1927 by the Supreme Court case Buck v. Bell which contained this infamous sentence "Three generations of imbeciles is enough”. The case was never directly overturned but Skinner v. Oklahoma effectively ended the practice in 1942.

The question presented by Ashley’s case is where does one draw the line? If Ashley had already grown too large and heavy by the time her physicians agreed to the surgery, would it have been ok to remove her legs to keep her small? Her arms? Bind her head to keep it from growing larger and heavier?

Parents of disabled children often feel blessed by God, especially chosen to care for a very special child of God. How do these beliefs, admirable as they may be, lead to the idea that the child can be hacked up and deformed to make caretaking easier for the caretakers? There is nothing God-like about performing unnecessary surgery period, let alone for someone’s convenience.

Caring for a disabled child or adult is an overwhelmingly onerous burden appreciated best by those who have actually done it but it is morally reprehensible to destroy, in any way, the basic human dignity and integrity of the person being care for. There are ample accommodations available now, and even more to come in the future, to ease somewhat the burden of care; prophylactic deforming surgery is not and should never be one of them.

3theolojen
Mar 16, 2007, 2:11am Top

kageeh...

Well stated. I also found myself drawing analogies to Buck v. Bell when I first heard about this case, and subsequent requests for such treatment. I find Art Caplan's statement probably the most poignant of all in this debate:

"I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. 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."

If these services existed at the capacity that is necessary (especially home health assistance) it would be interesting to see if such treatment requests would ever be made (or granted).

4reading_fox
Mar 16, 2007, 6:09am Top

#3 sums it up very well.

If you dislike the practise of the pharmacological solution are you prepared to pay the (dramatically?) increased taxes to fund the alternatives? The carers won't necessarily be in a position to fund them.

It is a very tricky ethical problem, and as such it must be examined on a case by case basis: but in some circumstances I think this probably is the current least worst answer.

5mdbenoit
Mar 16, 2007, 7:59am Top

I think the issue is larger than just the actual process; what are the legal rights of severely disabled people? We have a man in Canada who killed his daughter because she was not only disabled but in constant, excruciating pain. Was that an act of mercy, or simple murder? The courts thought the latter.

To me, and I'm far from a philosopher or an ethicist, using such processes as the Ashley treatment is synonym to lowering the person to the level of an animal. We spay and neuter our cats and dogs. It lengthens their lives, sure, but we do it for our own and society's welfare. It amounts to practicality.

With Ashley, it was more "practical" to keep her small and sexless. Her right as a person have been removed from her.

6kageeh
Edited: Mar 16, 2007, 8:47am Top

Message 4: reading_fox -- I don't agree that Ashley's treatment is "the least worst answer". It is simply the worst answer.

Her caretakers' costs will be, at most, minimally reduced by keeping her small and neutered. The greatest costs are in sustaining her life and physical health regardless of her size and maturity. And, as mdbenoit says in #5, at what cost was this destructive surgery to Ashley's right as a human being to remain whole?

7reading_fox
Mar 16, 2007, 9:49am Top

#6 I believe though I am ony superficially familair with the case that in this specific instance it was the nebulous "quality of life issue" that was the deciding factor. This way she gets more than might otherwise be the case.

the monetary costs in my #5 are a general point for a general but similar case should it arrise in the near future.

I don't think we as outside "observers" should comment on the specifics of one individual where the decision has already been made - for the best overall interest of the child, who is incapable of making such a decision on her own.

This is one of the hardest issues in ethics - quality of life. How much do you value an extra moment of happiness, now vs potentially in the future?

8kageeh
Mar 16, 2007, 6:14pm Top

Message 7: reading_fox -- you are right in saying it's presumptuous of us to debate what happened to Ashley after the fact, and for a host of other reasons. But that was the issue presented here in the Bioethics group. And I can't help but be bothered by the decision and the precedent it sets in the minds of others similarly situated. How many more Ashleys will there be?

However, I am wondering about whom you are referring when you ask how much we should value an extra moment of happiness, now vs potentially in the future? I believe, and I could be wrong, that the decision in Ashley's case was made for the "happiness" of the parents who claimed they could more easily care for her if she remained small and light. Ashley's happiness was not really an issue unless you attribute some to her being able to remain in her parents' care longer. And we don't know if that is true or not. Maybe when the cameras are off, she is abused and would prefer different caretakers. In a philosophical debate, one must consider all variables.

When a person is in an essentially locked in state where she cannot communicate her wants, needs, and thoughts with more than maybe ambiguous sounds, we cannot assume to know what she is thinking. She could have much higher brain function than anyone knows but is unable to express it. If that were true, imagine her fear and pain when the surgery was done. No matter what your stance is on her situation, this was medically unnecessary surgery -- with all the misery that accompanies any surgery.

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