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Medical Ethics - "Pillow Angel" Case

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I have a feeling the discussion can take a TOK turn but I'll just post it here for now.

Pillow Angel Ethics

What kind of doctors would agree to intentionally shorten and sterilize a disabled six-year-old girl to make it easier for her parents to take care of her? The question has had message boards steaming for days, but the answers are in no way easy.

Dr. Daniel Gunther and Dr. Douglas Diekema, who first revealed the details of "The Ashley Case" in the Archives of Pediatric and Adolescent Medicine, think that many of their critics don't understand the nature of this case. Talk to them, and you confront every modern challenge in weighing what medicine can do, versus what it should.

The case: Ashley is a brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her; so they set out to keep her small. Through high-dose estrogen treatment over the past two years, her growth plates were closed and her prospective height reduced by about 13 inches, to 4'5". "Ashley's smaller and lighter size," her parents write on their blog "makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc." They stress that the treatment's goal was "to improve our daughter's quality of life and not to convenience her caregivers."

But the treatment went further: doctors removed her uterus to prevent potential discomfort from menstrual cramps or pregnancy in the event of rape; and also her breast tissue, because of a family history of cancer and fibrocystic disease. Not having breasts would also make the harness straps that hold her upright more comfortable. "Ashley has no need for developed breasts since she will not breast feed," her parents argue, "and their presence would only be a source of discomfort to her."

The parents say that the decision to proceed with "The Ashley Treatment" was not a hard one for them, but the same cannot be said for the doctors. "This was something people hadn't thought about being a possibility, much less being done," says Diekema, who chairs the bioethics committee of the American Academy of Pediatrics and was brought in to consult on this case. For the ethics committee of Seattle Children's Hospital, which reviewed the proposed treatment, "it took time to get past the initial response—'wow, this is bizarre'— and think seriously about the reasons for the parents' request," says Diekema.

First they had to be sure there would be no medical harm: removing breast buds, Gunther says, is a much less invasive procedure than a mastectomy. The hormone treatment was commonly used 40 years ago on lanky teenage girls who didn't want to get any taller. "The main risk," Gunther says, "is of thrombosis or blood clot, which is a risk in anybody taking estrogen. It's hard to assess in a young child because no one this young has been treated with estrogen." There were very few reports of thrombosis among the teenage patients, he says, "So I suspect the risk is fairly low. After treatment is finished, I don't see any long-term risk, and we've eliminated the risk of uterine and breast cancer."

The ethics committee essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argue, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing."

They knew that the treatment would be controversial, though they did not quite foresee the media storm that would erupt when they decided to publish the case and invite their peers to weigh in. "I felt we were doing the right thing for this little girl—but that didn't keep me from feeling a bit of unease," admits Diekema. "And that's as it should be. Humility is important in a case like this."

Gunther also understands why the case has inspired such intense feelings—but notes that "visceral reactions are not an argument for or against." This was not a girl who was ever going to grow up, he says. She was only going to grow bigger. "Some disability advocates have suggested that this course of treatment is an abuse of Ashley's �rights' and an affront to her �dignity.' This is a mystery to me. Is there more dignity in having to hoist a full-grown body in harness and chains from bed to bath to wheelchair? Ashley will always have the mind of an infant, and now she will able to stay where she belongs—in the arms of the family that loves her."

But how far would Drs. Gunther and Diekema take this argument? Would they agree to amputate a child's legs to keep her lighter and more portable? Hormone treatment is nowhere near as risky and disfiguring as amputation, Diekema retorts; it just accelerates a natural process by which the body stops growing. Parents of short children give them growth hormones for social more than medical reasons, he notes. How can it be O.K. to make someone "unnaturally" taller but not smaller? To warnings of a slippery slope, Gunther tilts the logic the other way: "The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope," he says. "If we did not use therapies available because they could be misused, we'd be practicing very little medicine."

Source: http://www.time.com/time/nation/article/0,...1574851,00.html

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Someone actually PMed me on TSR asking for help for her TOK presentation on this topic which is how I got the link to this article. Well I really have to say it would certainly make an interesting TOK presentation.

Thoughts? (Not necessarily in TOK sense, just in general)

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Personally, I agree with what they did. I'm with the ethics board - the benefits definitely outweighed the costs.

I assume that the TOK presentation is in the general "how do we know what is 'good' or 'right' category? I argued pro-euthanasia via a case study, making the 'truth' circumstantial, rather than global. I think the same could be done here - medical procedures *can* be the 'ethical' choice in *some* cases. You'd need a different case that did not receive treatment and could be seen as ethical though.

I don't see how being short has removed her dignity at all, and removing her uterus and breasts have simply made life more comfortable for her. It was unlikely, I think, that a mentally retarded person to her degree, would have children, simply because she wouldn't have reached that mental stage of development. Being smaller, too, would have made the pregnancy difficult for the child, if not the mother. And breasts? I can't see them helping her at all - only hindering.

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Well actually in the (rather long) TOK advice I gave the girl who PMed me I actually told her to talk about these AOK: ethics, emotions and language, with ethics being the obvious big one. However that's not why I put this up here. I just wanted to see what people here thought about this situation, in general.

Looking at it from a totally practical point of view, yes, I can see that there are certain advantages to this treatment. However don't you find it just sick? I'd call this bordering on mutilating her, considering they're removing all the parts of her that makes her female (in essence) and reducing her to a sort of sexless child. At least that's the first impression I got.

And consider, where does it stop? Technology nowadays have advanced to the degree where people are considering doing this, among other things like creating designer babies to be stem cell donors, or euthanasia - where does it all stop? Is there a limit?

I just wonder, though, can she talk? Can she express her emotions? Does she actually know what is going to happen to her and that she is somehow different? Can this trigger emotional response in her?

Also, is it really fair that they're trapping her in a six-year-old body as the years go on, whatever the reasons?

Just some things that came to mind when I first read this. I can't take a stand right now actually...but if I have to, I have to say I'm bordering on being against it, despite the fact that I totally understand the practicality behind it and the mindset of the parents wanting to make the child's life a little more comfortable.

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"Where does it stop?"

I think that the first question that needs to be asked in order to address this completely is "where did it start?" It started with one girl, her parents, an ethics committee, and some wary doctors. It should be noted that this was not at all 'rushed in to' - there were discussions, and the reason for an ethics board is to ensure that the decisions were the *best* that could be made.

What was done improved her quality of life significantly. I do not see a problem in effectively removing her gender, as her mind will not progress to any stage of puberty, at which point she would have possessed this gender. In a young girl a uterus is rendered obsolete.

Most decisions that are not "standard" are reviewed by an employed group of ethicists. I believe that this will continue, because of cases such as this. The limits are imposed by the ethics committee. (That said, I'm not against designer babies either, so you might be able to see the 'open' views of practicing I hold.)

If we can say that "it was correct" I believe that we would be wrong - and I cannot think of a reason to disagree. Saying that "it was the best decision in this case at this time", however, is completely different. If, and only if, everything is subject to modern ethics, it is likely to stop at a point deemed ethical. I believe that point would be a point where disadvantages and benefits were perverted, and rather than being considered for the patient, were considered for the carers - the parents, government, nursing staff, and so on. Or, possibly worse, where cases were decided on a 'who can pay' basis.

I have not gone into detail, so I hope I've not skipped chunks of reasoning.

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My head totally understand your reasoning, but intuitively, a lot of things still make me very uneasy. That may be a combination of things: my mindset when I was reading this - trying to find both sides of the argument to help someone for their TOK presentation - and then that "both sides" kind of logged into my brain, the fact that my own TOK presentation was on the ethics of designer babies and what happens when it has negative effects on the family - thus shaping my paradigm so that I just find this disturbing, the fact that I am not a medical student nor do I ever want to be so I don't understand the whole technicality behind all this...So...yeah. :lol:

@Deus: I think something broke. What happened to sigs appearing just once on a page? - Fixed.

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I understand the board's decision as well, but the idea that they're acting like God and choosing the form of their child just can't leave my mind. This could be because that idea is coming from a religious paradigm, so really I could never agree to something like this, especially for a child at such a young age!

plus they've stripped her of her emotions! so her days are the same aren't they? I'm sure she still has some hormones and can feel happiness and what not, but they've taken away so much of hers by taking out her uterus that there's no doubt she's going to feel some form of emptiness inside, and who knows if she can channel that in any form of language... which may lead her into depression... then again I'm not expert at these things, I'm just imagining what it would feel like it that girl was me...

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Yeah, see, this is where it gets tricky. It's a brain-damaged 6 year old girl. One of the arguments the doctors are making is that she won't reach the stage to have developed mentally enough to feel a lack, apparently. But as I said, I wonder, if she can still feel something...

And I don't like the fact that they're playing God either. And I'm not religious in anyway.

Yes, before you say anything, I do realise that even under normal circumstances, parents have the right to make medical decisions for their children at a young age, let alone this is a brain damaged child. But all the same. It just disturbs me.

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well I'm sure she'll feel a lack when viewing other children playing and acting normal while she's sitting down, undersized next to her parents doing nothing! doesn't have to be an internal lack...

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well I'm sure she'll feel a lack when viewing other children playing and acting normal while she's sitting down, undersized next to her parents doing nothing! doesn't have to be an internal lack...

True. But she'd feel that either way, whether they do all this "treatment" for her or not, considering her current already existing condition.

Before anyone says she doesn't feel, she's brain damaged, not brain dead. >.

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loool you're putting up your counter arguments under your arguments :lol: we should link GoFi here to show them how it's done :P

and yea I guess your right, meh I hate ethical issues.. because in the end it's not the argument which is going to define right and wrong, it's the decision/belief. So really no point arguing

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I think the whole scenario is extremely interesting.

I also believe that it seems unfair for the parents to strip this girl of her gender regardless of whether it'll be of more benefit to her or not. As was mentioned before, she isn't brain dead so obviously she's going to realize that something is missing when she hasn't changed ever. I also wonder in what manner she communicates and to what extent she can feeling internally.

However, I do understand why her parents did this to her. But still, it begs the question as to why they even meddled with such a case. Sometimes its just better to leave things as they are. We're born this way for a reason I'm sure. And if we keep altering the body to fit the ideals that we have, then will it reach the point where we're all super-beings or all the same?

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I disagree with what they did.

Just because she is brain damaged does not give her parents the right to strip her of the right to grow, and develop breasts... Dehumanizing their daughter, and giving her even more reason to be different from the rest of the world will not help her. Maybe they would be an inconvenience to her parents, and maybe her, but thats part of being human. We grow, we menstruate, we go through puberty. Maybe it would be nice to get rid of the whole process, but it is part of growing up despite your mental ability.

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Maybe it would be nice to get rid of the whole process, but it is part of growing up despite your mental ability.

But is it better to grow up or is it better to be loved? Personally, I would find loving and caring for a child much easier than a full-fledged adult. i.e. whenever you see a baby or a baby animal, you go 'awwwww!' Rarely will an adult be 'awwwww'ed at.

So in a way, who is more selfish? The parents who believe that these procedures will significantly decrease the load on them while giving her a better quality or life , or those who are against the procedures, believing that it is 'wrong' to play 'God' and that there may be emotional/psychological implications in the future?

But how far would Drs. Gunther and Diekema take this argument? Would they agree to amputate a child's legs to keep her lighter and more portable?

I don't agree with that comparison. Amputation is evasive, while not growing bigger is not. Yes, you may argue the that procedures are evasive to some degree, but losing something that you once had and noticing something you never had are not the same. The uterus and breasts in this case don't count as a child would hardly be able to know they had these bodily parts, and so would be unable to make the comparison when they're gone.

Dehumanizing their daughter, and giving her even more reason to be different from the rest of the world will not help her.

How is it 'dehumanizing'? Gender is not specific to only humans.

We're born this way for a reason I'm sure.

How cruel of fate. To what extend to you believe that there is a reason for everything? i.e. is there a reason why some are born more beautiful, more wealthy, more healthy, more intelligent than others? Should we not do what we can to make the best for ourselves?

Just curious. :D

Edited by moneyfaery

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But is it better to grow up or is it better to be loved? Personally, I would find loving and caring for a child much easier than a full-fledged adult. i.e. whenever you see a baby or a baby animal, you go 'awwwww!' Rarely will an adult be 'awwwww'ed at.

So in a way, who is more selfish? The parents who believe that these procedures will significantly decrease the load on them while giving her a better quality or life , or those who are against the procedures, believing that it is 'wrong' to play 'God' and that there may be emotional/psychological implications in the future?

How is it 'dehumanizing'? Gender is not specific to only humans.

Her parents are going to love her whatever happens. Just because she is going to grow up "cute" doesn't make it any better for the parents. I fully understand that they are doing it, and I don't necessarily disagree with it, it will make THEIR lives alot easier. But they don't say that, they say its going to be easier for their daughter, who either understands what they are doing to her, or else cannot know the difference of how these differences are affecting her. They say it is easier for them to include her in activities, but is she not going to fit into the car anymore because she's a normal size.

Dehumanization pertains to them turning her into some kind of perfectly maintainable idea of a child, not taking away her gender. They are turning her into something that no longer caries out the function of a normal human being. Maybe she is never going to be able to be like other people, but they don't need to accentuate the differences any more than is.

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Honestly, I think it was the parent's decision in this case. They are the one's taking care of her. While I do agree that it does feel wrong, it is actually far better as far as conserving her dignity goes in this case. Also, it does NOT violate her rights--there are legal codes and certain laws in place for such cases in which the patient is indeed unable to make his/her own decisions in which case the legal caretaker(s) will make the decision. For those of you saying it isn't legal, it would help to read the exact codes. It is legal, and what's more, if the doctors were ok with it, you can be sure that there isn't much of a chance of anything happening as a result of the treatment--no doctor is going to go out of their way to pursue an action or surgery or treatment which could result in them being sued for malpractice. The benefits would have had to VERY STRONGLY outweigh the risks and possible complications in order for them to even have considered the treatments.

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