Ashley Treatment Deemed Illegal

May 8, 2007 5:54 PM

FollowupFilter: The "Ashley Treatment" is a violation of Washington state law, ruled an investigative report today. The hospital that performed the sterilization acknowledged that a miscommunication was to blame.
posted by pineapple (141 comments total)

From one of the linked articles:

Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."

You know. As a woman she has the right to have 100% functional girl-parts for a possible non-familial caretaker to impregnate someday. Really, all women are to society as a whole = vaginas with legs, right? Note that the sterilization is what everyone's worried about, not the other procedures.

I still think the parents had her best interests at heart and that the courts should stay the hell out of such highly personal and specific decisions.
posted by bitter-girl.com at 6:16 PM on May 8, 2007 [3 favorites]

QUICK SOMEONE CALL JOHN ROBERTS
posted by The White Hat at 6:21 PM on May 8, 2007

Ah, so what? The important thing is, they had good intentions.

Just like Mr. Justice Holmes and the Commonwealth of Virgina in Buck v. Bell. Or the SPCA, when they make sure other pets are fixed.
posted by orthogonality at 6:21 PM on May 8, 2007 [1 favorite]

I'd like to believe that Ashley's family would have had no trouble getting a court order, had they gone in front of a judge. While the first couple paragraphs of the original article elicit an immediate WTF!? response, anyone who heard all the circumstances would have to agree the family was making a loving and considered choice that would improve Ashley's quality of life.

But in the bad old days, people were sterilized against their will for comparatively minor disabilities. No one wants to go back to that. I think it is appropriate to have an additional layer of review in place to protect disabled people in general, though in Ashley's case the decision was a responsible one.
posted by Methylviolet at 6:28 PM on May 8, 2007 [2 favorites]

I'd like to believe that, too, Methylviolet. Then again, I'd also like to believe that the judiciary of this country doesn't have their collective heads up their you-know-whats. And then Congress gets in on the act, and (come on, say it with me now) -- SCHIAVO!

No one wants to go back to the bad old days. Back then, though, would a girl with disabilities this severe even still be alive? It's a whole new world of decisions brought on by medical advances. Going back to the original MeFi thread about this, it seems there are a lot of men who think a period, or cramps, or whatever are No Big Deal.

And there's such a fuss about the sterilization, but not the other stuff? Why IS that? As a woman, it kind of freaks me out... like the Supreme Court's "no health exception" ruling recently which gave women everywhere the big ol' middle finger. YOU are not important, but your uterus and its contents are.
posted by bitter-girl.com at 6:35 PM on May 8, 2007 [1 favorite]

bitter-girl.com writes "And there's such a fuss about the sterilization, but not the other stuff? Why IS that?"

History. Eugenic sterilizations of the developmentally disabled. Really fucked-up stuff.
posted by mr_roboto at 6:42 PM on May 8, 2007

Ah, so what? The important thing is, they had good intentions.

It isn't just that they have good intentions. It's that their intentions are well-founded. This is a little girl who will not be able to defend herself when she's older. She also will not understand the changes taking place in her body as she physically matures, and those kinds of changes are scary enough to girls without developmental disabilities.
She can't use her reproductive system willfully. Her rights are not being taken away by sterilizing her for her own protection and comfort.

I agree that this case and any future cases like it should require heavy review, but they shouldn't be denounced as criminal right off the bat, either.
posted by katillathehun at 6:54 PM on May 8, 2007 [1 favorite]

Hiya mr_roboto -- sure, I know the historical antecedents. What bothers me is that of all the things they could have singled out as ethically iffy, it's the sterilization they zoom in on. Keeping her limbs from growing? No prob. Messing up the girly bits? OH HELL NO!

And, in my opinion, it's that kind of logic that leads to problematic legal thinking towards able-bodied women. Which, if you think about the big picture, is more disturbing, since they actually have full powers of agency over their body and choices that Ashley does not and probably never will have.
posted by bitter-girl.com at 6:54 PM on May 8, 2007 [1 favorite]

I see what you're saying, Bitter-girl -- god knows there are some right-wing whack-jobs in the judiciary. And we know that there are lots of people who see women's rights as subject to cultural interpretation while men's rights are human rights. We don't disagree.

However, you wouldn't have to be an anti-abortion wacko or male supremacist to feel that the sterilization was the biggest deal here. (a) Major surgery on completely healthy tissue is not something to do lightly, and (b) having/not having children is arguably the most significant life choice a person makes. Removing breasts or stunting growth just are not as ethically fraught.

I'd be interested to know what the anti-abortion wackos do have to say about this -- would they come down on the side of choosing the best quality of life for this girl, or that of mandated fruitfulness and multiplication?
posted by Methylviolet at 7:03 PM on May 8, 2007

First, do no harm.
posted by ikkyu2 at 7:06 PM on May 8, 2007

Actually, the history of forced sterilization encompassed not just the disabled, but also the impoverished, and/or african americans.
posted by BrotherCaine at 7:09 PM on May 8, 2007 [2 favorites]

Agreed, Methylviolet -- I would be interested to hear what the wacko-wing has to say.

(Personally, I'd be super-extra-interested to hear what they would have to say if her parents weren't around to care for her and she was a burden on the state welfare system -- they're never much for the babies after they're born, are they?)

I agree with you that having or not having children is indeed a very significant life choice, and one which I'd like to see remain a choice for the women of this country. But barring some medical miracle, Ashley is not going to be making that choice. If anything, it'd be made for her (i.e. rape), since she isn't a puppy or a kitten and won't grow up & be bred by her owners.

Apologies for the last visual there -- but hopefully you see where I'm going with that -- no one has the right to get her pregnant since she cannot reasonably consent.

And so why not make her more comfortable, which this surgery -- although major -- surely will? If I remember right, ovarian cancer runs in their family, so this was also a preventative measure, since she wouldn't be able to indicate discomfort if anything should go wrong.
posted by bitter-girl.com at 7:12 PM on May 8, 2007

Maybe her parents should just make sure she has a "cot death." They've already decided she's not really a person; why not free her and themselves of the burden of her woefully imperfect existence? All they'd need to do is leave lots of plastic bags and wrappings around.

As to sterilizing her, unlike most of the other proposed "treatments" I've read about I don't see why spaying her is such a bad thing. Of what benefit to her is fertility? Can she even wipe her own ass?
posted by davy at 7:18 PM on May 8, 2007 [1 favorite]

Oh I see from this it's a done deal; I'd lost track. To quote a snippet:

'The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.

Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.'

Now THAT was downright barbaric. Euthanasia would have been better.
posted by davy at 7:22 PM on May 8, 2007 [1 favorite]

Why not just box her?
posted by davy at 7:23 PM on May 8, 2007

So: I think they should have sterilized her, on rethink at least with hysterectomy she won't get her period and have cramps, but I don't think they should have procrusteanized the poor kid for their convenience.
posted by davy at 7:28 PM on May 8, 2007

I knew the no one was advocating for her--not the parents, not the hospital, not the lawyer.

This is still appalling and dehumanizing, and now it's criminal. The head of the Ethics Panel didn't know the state law? Bull. Not one person on staff at the Hospital knew that you needed a court order? Bull. The lawyer didn't know? Bull.
posted by amberglow at 7:32 PM on May 8, 2007

amberglow writes "The head of the Ethics Panel didn't know the state law? Bull. Not one person on staff at the Hospital knew that you needed a court order? Bull. The lawyer didn't know? Bull."

Why would they break the law intentionally, though? It just looks bad for them, especially when all they needed to do was obtain a court order.
posted by mr_roboto at 7:35 PM on May 8, 2007

and the hospital says she's a 3-month-old mentally, but 3-month-olds aren't old enough to recognize blood or know what it is, or to be terrified by it, contrary to what they said.

In closing, let me say again that we believe we acted in Ashley’s best interests. The decisions in this case were achieved only after long deliberation and discussion. We understand that there is disagreement over the conclusions we reached. That disagreement should have been brought before an impartial decision-maker — a judge, in a court review — to assure all points of view were considered before undertaking the procedure. In the end, however, our process for review failed to assure compliance with the legal requirements. We can never let that happen again, and we will not.
They admit they never went to even one single impartial person at all about this--unbelievable.
posted by amberglow at 7:38 PM on May 8, 2007

Yeah, well, the Supreme Court's supposed to be full of impartial legal genius-types and look how badly they f***ed up last week with this no-health-exception nonsense, on a procedure that affects thousands more women than Ashley every year.
posted by bitter-girl.com at 7:41 PM on May 8, 2007

Why would they break the law intentionally, though? It just looks bad for them, especially when all they needed to do was obtain a court order.
Because they wanted to do this? Because they believed this was the best action to take? Who knows? The doctors and the parents all had their own reasons--that's why you must go to impartial people when you want to do radical stuff like this. The hospital had to have known that, yet they didn't do it? It's not believable.
posted by amberglow at 7:41 PM on May 8, 2007

It's not even about whether the impartial person is a good judge or a bad judge--it's about presenting the situation to someone who does not gain personally by the actions desired.
posted by amberglow at 7:44 PM on May 8, 2007

I think some people need to realize the difference between sterilization (i.e. "having one's tubes tied"), hysterectomy i.e. "womb removal" (leaving the ovaries, oophorectomy (taking out the ovaries but leaving the uterus) and spaying (where they hack all the female innards out). For the sake of clarity.
posted by davy at 7:46 PM on May 8, 2007 [2 favorites]

Not following proper established procedure in such an unprecedented and extreme case is simply not done by reputable hospitals and doctors. It's really beyond "unacceptable" or just "a mistake". Hospitals have lawyers too--why were they listening to the parent's lawyer alone? WTF?
posted by amberglow at 7:47 PM on May 8, 2007 [1 favorite]

As usual, I'm in close agreement with amberglow.

bitter-girl.com, it's not the sterilization alone that makes this playing god, it's the whole damn package.

It seems more like sculpting a miniature poodle or a bonsai tree than caring for a person, more like easing the parents' (admittedly very real and very onerous) burden that improving the life of the child.
posted by orthogonality at 7:48 PM on May 8, 2007 [3 favorites]

What, for the sweet love of Jeebus, was "gained" personally by the parents or the hospital? They didn't tack on a mermaid tail so they could add her to the circus sideshow for fun and profit. They didn't sell her to an underground kidney-removal organization and leave her in a bathtub full of ice so they could take off and go to Maui. They made her physical difficulties easier to bear both for her and for them as caretakers, enabling her home care to continue much as it has thus far without further complications.

Now, I'm not saying they shouldn't have brought in a second or third or fourth opinion... but like the Schiavo case, there are plenty of cases where an outsider's opinion isn't worth the hill of beans they're overthinking, because THEY DON'T HAVE TO CARE FOR HER.
posted by bitter-girl.com at 7:50 PM on May 8, 2007 [4 favorites]

from an interview with the ethicist (hah!) in Jan:

...CNN: You pledge to do no harm, but this was the first case of its kind. How do you proceed knowing it was without precedent?

Diekema: One of the difficult things about being a physician is sometimes you don't know for sure. We strive to do no harm, but that has to be balanced against what good you might do for a patient. Ashley had a surgical procedure and that involves some pain and risk, but it was our assessment after very careful consideration that the potential benefits would ultimately outweigh the risks. ...
posted by amberglow at 7:52 PM on May 8, 2007

Ok, but why, orthogonality, is the sterilization at the top of the objectionable list when these rulings come down? I posit that it's because she's female and our society has a great big ol' problem with women controlling their fertility even if they're disabled and have the mental state of a 3-year-old. Which, frankly, is pretty creepy.

Stopping her growth is a little more radical, if you ask me, but because it helps her parents care for her more easily, people don't seem to object quite as much.

Bonsai trees don't get bedsores, so their size isn't an issue.
posted by bitter-girl.com at 7:54 PM on May 8, 2007

They made her physical difficulties easier to bear both for her and for them as caretakers, enabling her home care to continue much as it has thus far without further complications.

That's what they gained--and it was invaluable to them, obviously, since they went to all this trouble to have it all done, even tho it was unheard of and had never all been done before.
posted by amberglow at 7:54 PM on May 8, 2007

Why would they break the law intentionally, though? It just looks bad for them, especially when all they needed to do was obtain a court order.
posted by mr_roboto at 10:35 PM on May 8

To get a test case to bring before the courts is my guess. But regardless amberglow is absolutely right, where was her advocate?

Really, all women are to society as a whole = vaginas with legs, right? Note that the sterilization is what everyone's worried about, not the other procedures.

Sterilization is the easiest to deal with legally because as a procedure it has a lot of caselaw behind it, whereas the caselaw on forced hormone therapies is thin.

And here's a newsflash for you - in the eyes of the State, women are simply breeders. The reason you have rights (in teh bill of rights an elsewhere) is because it was well understood that you needed enumerated rights to prevent the state from completely screwing you over.

The more the government becomes a provider of it's citizens general welfare, through social security, medicare, general health care, schooling, etc), the more the govt will have a legitimate interest in regulating reproduction either to encourage it or discourage it to control the population that it has to support. The govt can pass laws about who you can have sex with and where you can pee. And if the govt can require you to get a driver's license based on the simple premise that your car is using their highway, they can surely find some way to regulate your ability to create new humans the state will have to care for.
posted by Pastabagel at 7:56 PM on May 8, 2007

bitter, some of us feel that the parent's comfort and fears about the future shouldn't determine whether this person gets to grow or not. That she has rights of her own--rights that needed to be advocated for, and weren't. She's not a pet, but a person. She's not a dog that needed to be fixed. She's not a pillow angel nor a little doll. She's a human, and humans grow up--it's messy being human, and bloody too if you're a woman. It's not comfortable and adorable being human. It's not what parents would want, for the most part, in any child, let alone a severely disabled one, but that's life, no? She has a life, and she has rights. Preemptively chopping breast buds and removing ovaries and giving her hormones, and restricting her growth, etc--that's not what humans should do to other humans.


The hospital press release itself says that only now will they have disability-rights advocates on ethics panels.
posted by amberglow at 8:00 PM on May 8, 2007 [1 favorite]

And just after the section you quoted of the ethicist's interview, amberglow:

As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation. They don't understand why there is blood coming from that part of their body, and it's impossible to make them understand. Unlike a normal 11- or 12-year-old, you can't explain to them this is a normal part of your development. The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood.

So much for your theory on that one.

With that, I'm off to bed.

But wait -- there's more. On preview, Pastabagel:

And here's a newsflash for you - in the eyes of the State, women are simply breeders. The reason you have rights (in teh bill of rights an elsewhere) is because it was well understood that you needed enumerated rights to prevent the state from completely screwing you over.

We sure are. Here in Ohio, goddess help you if you're in a massive, brain-destroying car crash and you're one day pregnant, 'cause the good people who make the laws around here (good people = heavy sarcasm) decided there'll be no pulling the plug as long as you're functional as a human incubator. Sick.

I've told family + boyfriend to sneak me out of the hospital if that ever happens.
posted by bitter-girl.com at 8:02 PM on May 8, 2007 [1 favorite]

A deafening silence from the right. All I'm finding are pretty measured responses from pro-life blogs, and nothing from the big guys like NRL or Operation Rescue.

The purpose was to prevent healthy and natural development, not treat an illness or ameliorate an injury. The motive was love, I agree. But, in the end, I think it was wrong.

Even if her parents intention is solely for Ashley's benefit, something still rings me as morally lacking here.

The first-quoted guy has a lot to say, particularly that he sees the decision to do this without judicial review as indicative of sexism!

If anyone has a link to a Righty editorial on this, help me out yo.

*/ For me, the furthest I can go is to say that I think the parent's decision was a reasonable one, and I see that it may indeed contribute to the girl's quality of life. An impartial judge would agree, I think. Future cases may not be so clear cut, and so I think they should be reviewed by judges. I am not quite able to say Ashley's treatment was The Right Thing to Do... because it squicks me and makes me sad -- like the Donner party, or Sophie's Choice -- I just cannot speculate on what I would do. */

Judges, though, usually manage to keep it together and come to a rational decision. There have not been very many Terry Schiavos. There have been a lot of nutto parents and shall-we-say proactive hospital staff. This isn't like an abortion -- where the procedure carries little risk, time is of the essence, and above all the patient consents, and so adding hurdles is unnecessary and punitive -- this is a big, big deal. Notice nobody is getting thrown in jail, and the procedure has already been done on Ashley -- they're just saying, whoa, next time let's get a disinterested advocate for the patient in here before we do something like this. Yes, let's.
posted by Methylviolet at 8:03 PM on May 8, 2007

Ashley's a little girl who already had experienced being terrified of blood.

So much for your theory on that one.

It's not a theory. It's actually probably just the ethicist taking the parent's words for it too, knowing how they went about this. No one tested that statement for fact, i bet.

And 3-month-olds know pain--they don't know blood. It's fact.
posted by amberglow at 8:05 PM on May 8, 2007

She's a human, and humans grow up--it's messy being human, and bloody too if you're a woman. It's not comfortable and adorable being human. It's not what parents would want, for the most part, in any child, let alone a severely disabled one, but that's life, no?

Ok, can't resist this one. Damn. What if, let's say, she came from a family chock-full of the genetic markers for the really horrific breast cancer instead of the ovarian cancer that does run in her family. And we can say with a really high degree of certainty that she will develop horrible and painful breast cancer if she's allowed to keep and develope her breast buds. Who in their right mind is going to say that she has a right to get cancer, suffer pain and go through treatment that could have been avoided had she gotten a preventative surgery?

I cringe at this whole "pillow angel" nonsense -- bleargh. These parents sound like the kind of semi-creepy "touched by an angel"-y people who freak me out a little. But damn, who's got Ashley's best interests in mind more than her own parents? In the Schiavo case, I'd argue her husband had more of a right than the parents since, when you grow up and get married you voluntarily give those rights to your spouse. (Something that pisses me off about the same-sex marriage debate is that parents can step in and undo 20, 30, 40+ years of life together with your SO if you die sans will, etc).
posted by bitter-girl.com at 8:08 PM on May 8, 2007

All they'd need to do is leave lots of plastic bags and wrappings around.

I take it that you don't have kids.
posted by Balisong at 8:11 PM on May 8, 2007

What if, let's say, she came from a family chock-full of the genetic markers for the really horrific breast cancer instead of the ovarian cancer that does run in her family.
Then you don't do anything until she actually has breasts for cancer to grow in? Or you take her for mammograms her whole life and for genetic tests? This was not done because of cancer--this was done as part of the whole desexing package for their pillow angel.

But damn, who's got Ashley's best interests in mind more than her own parents? In the Schiavo case, I'd argue her husband had more of a right than the parents since, when you grow up and get married you voluntarily give those rights to your spouse.
No, you actually retain your rights as a human and as a citizen. It's only when you can't speak or advocate for yourself that others step in.

Ashley's parents did what they wanted. They didn't do what she wanted. You can agree or disagree with them, but this was done to her by them for their benefit.
posted by amberglow at 8:18 PM on May 8, 2007

Look, people. Either this thing - this "Ashley" is a pet. Or it is not a pet, it is a human being.

If it is a pet - an owned creature - you spay it, same as you spay a cat. You dock its tail and its ears if you so choose. You harness it to a cart, like oxen.

If it is a human being, you - a doctor - don't do those things to it without its consent.

You people yammering on in this thread - are you aware that this is bigger than Ashley? For every Ashley whose parents give enough of a care - and who possess the wealth and specialized resources - to take care of their own Ashley at home, there are 100 "Ashleys" with static encephalopathy dumped off on the state.

These not-so-lucky Ashleys are cared for in a fostercare industry that is probably only marginally more humane than a factory poultry farm. Foster parents establish a stable of 8-12 "Ashleys" and care for them. The motive is profit- you can clear a hefty six figures, after expenses, if you're organized and careful with this kind of thing. There is a sizable cash bonus every month if one of your Ashleys is severely developmentally delayed, needs a wheelchair, or has other disabilities.

Do you understand that this fostercare industry has a serious incentive to perform this kind of procedure on nonconsenting wards of the state? While we are at it, why not surgically implant a gastric tube into their stomachs? - it makes feeds so much easier and cheaper when we can just buy one liquid protein-slurry pump with 12 outlets. Why not colostomize and cystotomize them all - it'll save hundreds of hours of caregiver labor every week, toileting them, if all they have to do is change a bag once a day?

In fact, why don't we just take these owned creatures that contribute nothing to society, and grind them to a pulp and feed them to hogs? They're not wanted by anyone and they have no civil rights - not even the right to the inviolate integrity of their own bodies.

Is that what you people really want? Because if you keep yammering, it's what you're going to get.

And when you are old and locked up in a nursing home, you may personally regret it.
posted by ikkyu2 at 8:18 PM on May 8, 2007 [6 favorites]

bitter, do you actually agree with those parents whose kids die because they don't believe in doctors or medicine? or those parents who cage their children?

When are parents allowed to do things or not? Why?
posted by amberglow at 8:20 PM on May 8, 2007

like the Supreme Court's "no health exception" ruling recently which gave women everywhere the big ol' middle finger.

Speaking of which: How the Supreme Court's Validation of the Federal Partial-Birth Abortion Ban Act Affects Women's Constitutional Liberty and Equality: Part Two in a Two-Part Series
posted by homunculus at 8:28 PM on May 8, 2007

bitter, do you actually agree with those parents whose kids die because they don't believe in doctors or medicine? or those parents who cage their children?

I'm not Bitter-Girl, but I just had to ask - do you see such cases as similar, amberglow and - if so - why?
posted by katillathehun at 8:32 PM on May 8, 2007

more here, including the parents' statement: ... Prior to the surgery, we had consulted with a disability lawyer and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley's case since:

1- Given Ashley's developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be.

2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it

While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. . Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley's.
...

Onerous burden? No.
posted by amberglow at 8:33 PM on May 8, 2007 [1 favorite]

The "parents" who caged their adoptive children happened about a 30-minute drive from here, so we got a lot of daily updates on the news during that trial. They weren't so much parents as the sort of let's-rake-in-the-state-money types ikkyu2 references, and they had a history of abusing their (normal, biological) children. Should they have been allowed to even be foster parents, let alone to severely disabled children? Probably not.

As for parents who don't believe in medical treatment, I think there's a fine line there. For every case we read about where the parents won't allow a hospital to do a perfectly ordinary procedure for some religious or cultural reason, there's also a case where the hospital or doctor is pushing for treatment beyond the ordinary scope of care, and the parents just want to allow their child to die with a little dignity not to mention a little less medical intervention.

Above, when I referenced granting one's spouse the right to make decisions about one's care, it was (although not clearly stated) in the event that one cannot make one's own decisions. This post struck a major chord with me -- who would *you* trust to make a decision like this about your body and health? In just about every case I can think of, the parent or spouse is a more preferable option than the state.

When the parent or spouse is available, that is -- in the case of wards of the state, as ikkyu2 referenced, then perhaps a little extra oversight is required to keep these foster parents from taking on more and more disabled kids than they can manage just to bring in more money.
posted by bitter-girl.com at 8:36 PM on May 8, 2007

katilla, i see it as similar in a way, especially regarding parents' rights--the parents in all cases are doing extreme things. I don't think parents' rights are absolute, and in the things i mention, courts have punished parents for doing them. Parents cannot just do anything to their children.
posted by amberglow at 8:36 PM on May 8, 2007

Sorry for the extra italics...my eyes are actually starting to blur & wanting to read the great article homunculus linked is not helping. More in the a.m. -- have fun without me.
posted by bitter-girl.com at 8:42 PM on May 8, 2007

from my link above--if it wasn't for these people, no examination of the Treatment would ever have taken place-- Disability Rights Washington
posted by amberglow at 8:43 PM on May 8, 2007

more here, including report excerpts: ... -The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and at the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interests.
-Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interests of the child. Thus, the other aspects of the "Ashley Treatment" - surgical breast bud removal and hormone treatments - should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
-The implementation of the "Ashley Treatment" also raises discrimination issues because, if not for the individual's developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law."
...
posted by amberglow at 8:48 PM on May 8, 2007

from Disability Studies at Temple U: ... The court order in sterilization cases is not just a formality--this is not a case where somebody forgot to sign some paperwork. In pursuit of a court order, the family would have had to demonstrate (among other factors) that the child was likely to engage in sexual activity, that they had tried other less drastic means of preventing conception, and that "the proposed method of sterilization entails the least invasion of the body of the individual." ...
posted by amberglow at 8:52 PM on May 8, 2007 [1 favorite]

I wonder now if the lawyer knew they wouldn't have gotten approval?
posted by amberglow at 8:53 PM on May 8, 2007

All I can say is that it's very easy for those of us outside of these cases to make judgments (in either direction), while it must be very difficult to make the decisions and deal with the consequences when you're the parents or caregivers.

This thread is all black and white (NOT BINARIST) while this case seems be nothing but nuance and shades of grey.
posted by maxwelton at 9:10 PM on May 8, 2007

Ok, but why, orthogonality, is the sterilization at the top of the objectionable list when these rulings come down? I posit that it's because she's female and our society has a great big ol' problem with women controlling their fertility even if they're disabled and have the mental state of a 3-year-old. Which, frankly, is pretty creepy.

Because sterilization has been specifically used in the past as a form of eugenics. And, to put it bluntly, if one family can do that to a child this disabled without any legal framework or repercussions, another family can do it to a far less disabled child. Worse, the government could do it to children it considers "disabled" or "handicapped".

That's what happened in Alberta in the 1930s and 1940s. Situations such as this one which seem reasonable were used to justify the wholesale sterilization of Aboriginal girls, kids with learning disabilities and Asperger's, girls who claimed to have been molested (because they were obviously sexually disorganized liars), and the like. The overwhelming majority of kids sterilized in the Alberta scandal grew up to be normal, except that they were sexually neuter.
posted by watsondog at 9:15 PM on May 8, 2007 [2 favorites]

watsondog - you make very very good points against forced institutionalized sterilization.

This ia a particular instance where both the pros and cons of sterilization have been considered.

This person will never achieve the mental competency to decide whether or not to engage in practices that might lead to childbirth. Inuendo upthread suggests that such people with her disorder are at risk of aquiescing without understanding to someone else injecting their penis and semen (with DNA carrying sperm) into them.

In this particular situation sterilization has beneficial outcomes for this person. Do no harm? There's precedence that doing nothing can result in harm.

Can you imagine this girl after she gave birth to a baby? What level of care could this baby recieve? How much emotional attachment is possible? Could the girl even care the the baby on even the most basic physical/emotional level?

Do no harm, indeed. You have to ask yourself; to whom the 'no harm' must be done to?
posted by porpoise at 10:44 PM on May 8, 2007 [1 favorite]

Porpoise, Ashley wasn't just sterilized. She was sterilized, and then every organ in her body that could produce estrogen, including her breast buds, was surgically removed. She was also subjected to a regimen of injected hormones intended to stunt her growth. As a result, her bones did not grow normally and she became deformed.

This is not something that you would expect a mentally healthy 6 year old to give assent for. (Assent is the name for what children and the mentally disabled can give; it's not legally binding like informed consent or the lack thereof, but it's good practice to obtain it when it can be obtained.)

Given that you are administering treatment that a mentally healthy 6 year old might well be likely to refuse, and which would clearly not be in the best interests of that mentally healthy 6 year old, there's a seriously high hurdle to cross to argue that the treatment is appropriate for the mentally disabled 6 year old, just because she is mentally disabled.

Intentionally deforming a person's bones and resecting their healthy organs is not a treatment for mental retardation; it does nothing to ameliorate that condition. Ashley is still mentally retarded. Since a physician is administering these treatments to a patient, the physician must try to determine that the treatments will not be harmful, will be helpful, will respect the patient's inherent right to autonomy, and will not result in a greater injustice than was present before the treatment.

Even according to Ashley's parents, the treatments were performed for the purpose of increasing their own convenience, and, secondarily, to deal with societal ills like sexual abuse of the mentally disabled. To make an analogy, this is like asking a doctor to euthanise a wealthy old miser hospitalized with pneumonia, because her kids, who hold health care proxy, are poor and they could use the inheritance. Such an act may be convenient for the kids and useful for reducing the social ill of their poverty, but for the doctor to carry this out would be a violation of the doctor-patient ethical relationship. It would never be condoned.
posted by ikkyu2 at 11:25 PM on May 8, 2007 [3 favorites]

bitter-girl.com writes "Ok, but why, orthogonality, is the sterilization at the top of the objectionable list when these rulings come down? I posit that it's because she's female and our society has a great big ol' problem with women controlling their fertility even if they're disabled and have the mental state of a 3-year-old."

Couple of things here, bitter-girl.com.

One, this isn't about "women controlling their fertility". It's about parents controlling a minor's fertility (albeit for the best of reasons, a minor who will never be able to consent, etc., etc.) Two, humans not concerned with the fertility/integrity of their reproductive systems got out-bred and went extinct millenia ago.

But frankly, sterilization isn't the top of my list: it's the whole package. Keeping her tiny, so they can cart her around, removing breast buds (why? possibly to prevent a caregiver molesting her, possibly to prevent breast cancer, but it seems prudish and, for lack of a better word "aesthetic" too).

For me, I guess it comes down to this: either the profoundly mental disabled are human, or they are not. If they aren't, not to put too fine a point on it, why not painlessly euthanize them? But if they are human, there has to be some limit to how parents or guardians can alter these people who cannot give consent, for mere convenience.

But I could probably swallow this if it were purely about the (putative) quality of life of the child, or even the convenience/ability of the parents to care for her (because that will in turn affect the child's quality of life).

But -- for me -- the real squick comes with "pillow angel". Now I know the parents are going through something I can't imagine, etc., etc., but to my ear it sounds like fucking accesorizing and denial: "She's not disabled, she's a kind of angel! Like a a human pillow we can throw on the sofa! Or a shar-pei! She's like an angel, God's special gift to us, and we'll keep her small and huggable and physically infantilized to match her metal state, and we'll hug her and squeeze her and..."
posted by orthogonality at 11:30 PM on May 8, 2007 [2 favorites]

Although time consuming, I think it is instructive to read not only the links provided here, but also the links provided in the previous post (1st link) and the discussion in that thread. A lot of the arguments I see so far are pretty reminiscent of what has already been said.
posted by Tikirific at 11:48 PM on May 8, 2007

Ashley wasn't just sterilized. She was sterilized, and then every organ in her body that could produce estrogen, including her breast buds, was surgically removed. She was also subjected to a regimen of injected hormones intended to stunt her growth. As a result, her bones did not grow normally and she became deformed.

Just as a clarification, this is not totally accurate. Her uterus was removed, but not her ovaries. One of the reasons cited for the removal of the uterus was in fact the uterine bleeding that the increased estrogen in her body (this is the hormone that is actually fusing her growth plates) would likely cause. And of course there were the other cited factors of 1) Menstration/cramps and 2) Risk of pregnancy.

The reasons given for removing her breast buds were that 1) Ashley would have no use for them 2) Family history of cystic growths (likely painful) and breast cancer and 3) Source of discomfort when bedridden.

Whether you think these are valid reasons or not (or whether there can be any case in which these are valid reasons) are completely your opinion, but these are the factors cited by the parents and doctors involved. Other reasons such as:

But -- for me -- the real squick comes with "pillow angel". Now I know the parents are going through something I can't imagine, etc., etc., but to my ear it sounds like fucking accesorizing and denial

are of course, pure speculation.

I don't particularly advocate taking the parents' statements at face value, and don't presume to have a clear perspective into what life was like for this family or what the true intentions of the parents were. At the same time, I also haven't seen any evidence that this was done for mere convenience's sake or as a result of some previously unknown neuroses of the mother and father. As such, I don't think it's particularly useful (though you're all free to do so) to argue over whether the procedure was moral or immoral because many people's opinions seem to be completely dependent on the context of the procedure.

On the other hand, you're of the opinion that this procedure was completely immoral regardless of the circumstances, then I guess I must respectfully disagree with you. If all the medical/personal reasons cited were valid and true and the patient's condition represented accurately, then I see no ethical dilemma.

Once again, I refer anyone interested to the previous thread, which had many links that discuss these issues at greater length and depth (amberglow provides links to a number of websites and several members relate their personal experiences in the matter).
posted by Tikirific at 1:02 AM on May 9, 2007 [2 favorites]

Speaking as the sister of a mentally retarded woman, I want to thank ikkyu2 and others advocating for the patient's rights for the comments. I wanted to agree with what Ashley's parents did. Had it only been the hysterectomy, I could have accepted it. The hormone treatments and the breast bud removal is beyond the pale. Their "reasons" are a weak set of arguments which amount to nothing other than their own convenience.

They should have visited a place like Casa Angelica where individuals like their daughter are cared for with love and respect. From the Canossian nuns who run the place, Ashley's parents could have learned how to deal with her adult body, prevent bed sores, and incorporate her into the family activities. Unlike the three children pictured on the site, most of their patients have a mental capacity of under a year.

For my sister, we've discussed birth control and sterilization as it would have eased our minds and settled some of our fears. My sister is not on any form of birth control and has had no surgeries. My sister is able to make some decisions but can be easily manipulated into making the decision you want her to make. If you rephrase the question, you'll get a different answer. The assent that ikkyu2 mentions becomes meaningless. So, my family and my sister's respite care providers have to be constant chaperons. We've stopped her from having sex on more than one occasion. If she one day becomes pregnant, my husband and I will ask for custody of the baby.
posted by onhazier at 6:57 AM on May 9, 2007 [1 favorite]

Even according to Ashley's parents, the treatments were performed for the purpose of increasing their own convenience

Convenience? I wouldn't use the word convenience.

They want to continue caring for her at home. If she reached 125 pounds, they wouldn't be able to do that. I think she's better off with her parents caring for her than in some facility. The questions here are tough, but it's not like this was decided on a whim by either her parents or the medical commmittee that agreed to do the procedure.
posted by agregoli at 7:32 AM on May 9, 2007

They should have visited a place like Casa Angelica where individuals like their daughter are cared for with love and respect.

Are there a lot of places like Casa Angelica?

I don't intend to be glib but my understanding has always been that facilities for developmentally disabled chidren are a far cry from a group home where nuns supervise the care "with love and respect," and kids get to go to horse camp and ski camp. I could be wrong as I have only the knowledge gleaned from mainstream media, so I'm happy to learn the facts. Are there really lots of options for humane and respectful care for developmentally disabled children whose families can't care for them?

The ruling against Seattle Children's has not swayed my belief that Ashley's family, along with her doctors and the committee of ethicists involved in her case, did what they believed to be best for Ashley's quality of life, and that they sleep just fine at night. I also believe that no amount of reading about it from afar on the Internet is going to somehow make me more informed, more medically educated, more concerned, or more equipped to declare The Right Thing to Do, than that particular group of people.

I don't buy the notion that the doctors were acting in their own best interest; I think it would actually have been easier if they'd left the decision to the courts, as it prevents them from committing to their own ethical stance on the issue and possibly risking career-ending publicity, sanctions, or even violence at the hands of opponents.

Still, I can't swallow the suggestion that at no point, one of the cadre of legal staff who considered this case didn't say, "We should get a court order." Seems like it was very likely a "don't ask, don't tell" decision in order to be able to proceed unhindered.

And, I believe the court order was 50/50 likely to be granted, depending on the political and religious leanings of the judge on the bench... but I also think that, regardless, the publicity from the court order would have stopped the surgeries.
posted by pineapple at 8:26 AM on May 9, 2007

Pineapple, your point is well taken. Casa Angelica is an Intermediate Care Facility for the Mentally Retarded. Each state has at least one. The fact that more are needed is a different discussion. Nationwide, approximately 129,000 patients are served in these facilities currently. Information about such facilities is easily found through a state's department of social services, department of health or, if you know a few related terms, a quick Google search.

I pointed out Casa Angelica because I'm directly familiar with it. I did some volunteer work there in high school through a Canossian run youth group. At the time I was there, the majority of the residents were not ambulatory and were profoundly disabled like Ashley.

The aquatics therapy is done on-site with special equipment to lift the resident into and out of the pool. The equine therapy requires an experienced trainer being on the horse with the resident. Don't kid yourself about how much effort is needed to work with the residents. In some cases, we're talking about a fully grown 40 year old with the mental and physical capabilities of a 1 year old or a 6 month old. The staff and volunteers have to work in such a way that each resident is stimulated, cared for, and protected while also protecting themselves. In other words, they don't want to throw their own back out while working with a resident.
posted by onhazier at 9:12 AM on May 9, 2007

The fact that more are needed is a different discussion.

I don't agree that it's a different discussion. If the argument is made here that Ashley's parents shouldn't have pursued the treatment because they had obviously had other humane options (for example, a Casa Angelica), then we have to also fairly consider whether that option actually exists in the way it's put forth.

The fact that only 129,000 patients are able to be served, in the existing state-supervised facilities nationwide, actually creates for me an even more compelling argument for the choice Ashley's family and doctors made.

Don't kid yourself about how much effort is needed to work with the residents.

I never have. It's one of the very reasons I understand how incredibly complex the whole issue of long-term care for the developmentally disabled must be for the affected families.
posted by pineapple at 10:45 AM on May 9, 2007

They want to continue caring for her at home. If she reached 125 pounds, they wouldn't be able to do that.

What if the parents are weak or disabled, agregoli? 75 lbs is too much for them. So they propose to amputate Ashley's arms and legs to reduce her weight to a more manageable 50 lbs. This will have the side benefit of making it impossible for her to claw and scratch people when she gets into her rages, and it will make toileting easier too.

Is that OK?
posted by ikkyu2 at 11:52 AM on May 9, 2007 [1 favorite]

When the parents get old, what ikkyu2 says will be true--what happens then?

Is the point of Ashley's existence that she'll always be managable (in all possible ways) for her parents? Is that ok? Why?
posted by amberglow at 12:03 PM on May 9, 2007

Oh please. Too ridiculous to respond to.
posted by agregoli at 12:03 PM on May 9, 2007

And the parents are afraid of rape in the future--they both subjected her to procedures to help with their care of her, and to supposedly prevent future abuse that wouldn't happen if the parents continue to care for her. (And newsflash to the parents--abuse doesn't just happen to people with breasts)

I know we do pre-emptive war now, but pre-emptive desexing? come on.
posted by amberglow at 12:06 PM on May 9, 2007

Meaning, I just don't get the hysterical, over-the-top "what ifs" in this case. For this specific case, I don't believe they did anything wrong, or anything harmful to this girl. Rather, I believe, from reading everything the parents have to say about this matter, that they did this with open eyes, very careful consideration, and a ton of love born out of a desire to care for their daughter as long as they are physically able, not ship her off to a home somewhere. I don't see anything wrong with that, and neither did the medical people who approved the procedure.

I know there are a lot of slippery slopists out there, but I honestly don't see this particular case as some heinous, selfish "she will serve our needs" type thing. Your mileage may vary.
posted by agregoli at 12:07 PM on May 9, 2007

Oh please. Too ridiculous to respond to.
Not at all. The extreme lengths these parents went to, and not going to court, etc, all point to the fact that there aren't really any limits on their tailoring of Ashley.
posted by amberglow at 12:09 PM on May 9, 2007

very related, and also a group who used to be sterilized routinely: Prenatal Test Puts Down Syndrome in Hard Focus
posted by amberglow at 12:12 PM on May 9, 2007

agregoli, in the parents' response to the investigation, they state that they didn't--and even now still don't -- think the laws applied to them or to other parents of severely disabled kids. That they were somehow excused from following proper procedure. They still want other parents to do this too.
posted by amberglow at 12:24 PM on May 9, 2007

Shrug? That doesn't change my opinion of them or the decision they made. And personally, I think the law I read on it was too broad to be blanketed over their particular situation.
posted by agregoli at 12:29 PM on May 9, 2007

The law is broad for very good reasons and because of the long sordid history of abuse of these procedures. The law also mandates a court order and that a case in favor be made to an impartial observer. That wasn't done.
posted by amberglow at 12:35 PM on May 9, 2007

from pp22-24 of the pdf report: ...Parents generally have the right to make medical decisions for their minor children and provide informed consent for various procedures; however, courts have limited this authority when parents seek highly invasive and/or irreversible medical treatment of their minor children. 97 Courts and the Washington State Legislature, for example, have held that parents do not have the authority to consent to medical treatment in cases involving involuntary inpatient psychiatric care, 98 the administration of electro convulsive therapy in non-emergency life-saving situations, psychosurgery, abortions for mature minors, sterilization, and other similar invasive medical treatments, 103 particularly where the interest of the parent may not be the same as those of the child. 104 Like a number of other states, 105 the Washington State Supreme Court has addressed the question of whether a parent can provide consent for the sterilization of a minor due to a developmental disability and has held that the constitution requires court review and approval before a minor can be sterilized. 106 In In re Hayes, the Washington State Supreme Court held that a parent of a child with a developmental disability did not have the authority to consent to sterilization on behalf of her minor daughter. 107 The court found that unlike other medical procedures, parental consent is inadequate in cases involving sterilization of a child because involuntary sterilization imposes significantly on the child’s fundamental liberty and privacy interests. 108 Thus, the court held that the child must be represented by a disinterested third party such as a guardian ad litem 109 or an attorney in an adversarial hearing to determine whether the sterilization of the minor is legally warranted. 110 The Hayes Court specifically held that “[t]here is a heavy presumption against sterilization of an individual incapable of informed consent that must be overcome” 112 by proving all of the following conditions by a clear, cogent, and convincing standard (emphasis added): 113 1. the child is incapable of making his or her own decision about sterilization; 2. the child is unlikely to develop sufficiently to make an informed judgment about sterilization in the foreseeable future; 3. the child is physically capable of procreation; 4. the child is likely to engage in sexual activity at the present or in the near future under circumstances likely to result in pregnancy; 5. the child is permanently incapable of caring for a child; 6. all less drastic contraceptive methods, including supervision, education and training, have been proved unworkable or inapplicable; 7. the proposed method of sterilization entails the least invasion of the body of the individual; 8. reversible sterilization procedure or other less drastic contraceptive method will not be available shortly; and 9. science is not on the threshold of an advance in the treatment of the child’s disability. 114 The court went on to point out that not only is the strong presumption against sterilization very difficult to overcome, but the age of the child can make it “difficult or impossible” to prove each requirement. 115 In Hayes, the court stated that since the child was still only sixteen-years-old, it was not possible to prove many of the required points listed above because of the uncertainties of the child’s future development. 116 Here, the “Ashley Treatment” was performed on a six-year old child; therefore, getting court approval for these incredibly invasive procedures that result in irreparable harm to fundamental liberty and privacy interests of such a young child would likely be quite difficult. ...
posted by amberglow at 12:45 PM on May 9, 2007

The law is broad for very good reasons and because of the long sordid history of abuse of these procedures. The law also mandates a court order and that a case in favor be made to an impartial observer. That wasn't done.

Yes, I know. That's the point of this update post.
posted by agregoli at 12:48 PM on May 9, 2007

and from p.27: ... The unsupported argument of the parents’ attorney asserts that the extent of the constitutional rights to be afforded an individual with a developmental disability for whom sterilization is sought should be determined as though the amount of constitutional rights and corresponding due process procedures were on a sliding scale in correlation to the severity of an individual’s disability. The amount and scope of an individual’s due process and privacy rights is not on a sliding scale. The court in In re Colyer specifically held otherwise when holding that incompetent individuals had constitutional interests in refusing end-of-life treatment when they were terminally ill. 135 There, the Washington Supreme Court specifically held a woman in a chronic vegetative state had a constitutional right to privacy in not being given end-of-life treatment that would only prolong the dying process. 136 Other courts have also held that individuals who cannot speak or who were unconscious also are to be afforded constitutional due process protections when their liberty, privacy, or other constitutional rights are at stake. 137 ...
posted by amberglow at 12:50 PM on May 9, 2007

bitter-girl.com said: We sure are. Here in Ohio, goddess help you if you're in a massive, brain-destroying car crash and you're one day pregnant, 'cause the good people who make the laws around here (good people = heavy sarcasm) decided there'll be no pulling the plug as long as you're functional as a human incubator. Sick.

Texas as well. In grad school (for bioethics), I did a massive research project on postmortem prenatal ventilation. It's the law in a lot of anti-choice states.

I have a standing living will that says that if I meet the Harvard Criteria for brain death, that no heroic measures should be taken, nor should life sustaining methodologies be allowed. My attorney has told me that that clause is completely unenforceable should I be even as much as 3 days pregnant and something (gods forbid) happen to me.

To the State; I am naught but an incubator.

From an ethics standpoint, I can see how this case would be troubling to many people, especially those who are not trained in bioethics, nor have much experience with caring for profoundly disabled people. And I've not spent an extraordinary amount of time researching this case, nor am I a bioethicist, but I have to say that upon initial reading of the materials available about the case, that I agree with the parents decision.

I think they should have followed the law and had court sanctioned approval, so that the child had her own solicitor, but the procedures themselves are something that I think make sense given the context. (I realize it's an unpopular position, but I do think it is the most logical one.)
posted by dejah420 at 1:22 PM on May 9, 2007

So they propose to amputate Ashley's arms and legs to reduce her weight to a more manageable 50 lbs.

ikkyu2, while I think your position is generally well-reasoned and probably the most ethically justifiable, this sort of slippery-slope rhetoric doesn't add much to your argument. And it bugs me when a reasonable person makes unreasonable arguments.

I feel for the girl's parents. They have a heavy burden to carry. Personally, I can not begrudge them taking steps to make the burden easier. However, your point that you don't do something to a mentally retarded 6-year old that you wouldn't do to a normal 6-year old in terms of overall medical care is both simple and justifiable. No need to argue against silly hyopthetical situations when you have a good argument for the actual situation.
posted by GuyZero at 1:38 PM on May 9, 2007

It's not just a slippery-slope or hypothetical anymore tho -- precisely because of the things done to Ashley and the reasons given--where is the line crossed? What's not allowable?

Seriously.
posted by amberglow at 2:49 PM on May 9, 2007

The family just as easily could have cited kicking or involuntary movement that made it harder to care for her. They could just as easily spoke of her hitting herself (like babies do)...
posted by amberglow at 2:52 PM on May 9, 2007

Wheelie Catholic: ...we need to consider whether the laws in place are sufficient to protect the rights of disabled people in the face of this kind of response.

We also need to separate out the excuses people use to try to take away the civil rights of disabled people. It is certainly true that parents of children with disabiltiies are a sympathetic group- and rightly so. They are good, well meaning people. However when they break the law or speak out publicly in ways that encourage breaking the law, it is necessary to set aside our sympathy and see their behavior for what it is.

Many who defend the parents' position in this case refuse to see that Ashley X's parents publicized this treatment on a web site, suggesting it would work for other families. Now that a finding has been made that it was done illegally, not only has no deterrent been suggested - such as sanctioning the parties involved, but the parents continue to make arguments that would put the civil rights of disabled children at the mercy of the convenience of everyone else. They criticize the very laws they broke making the same arguments that caused them to break the laws in the first place.

To which I say: Civil rights are indeed inconvenient - to those who seek to violate them.
posted by amberglow at 3:08 PM on May 9, 2007

Q: Why do women have legs?

Anyway. I think if Ashely's existence is no good to her and such a burden for her parents and/or any other "non-abusive" (ha ha) caretaker they should be allowed to have her euthanized.
posted by davy at 5:00 PM on May 9, 2007

Oh please. Too ridiculous to respond to.

Ridiculous, eh? I had the same feeling recently, agregoli. It was right around the time that I'd heard they'd amputated Ashley's breasts.

So what are you saying? Are you saying it's ridiculous to cut off someone's arms and legs, but not their breasts? Or are you saying that the two ideas are equally ridiculous? Because I want to make sure I understand you.
posted by ikkyu2 at 5:24 PM on May 9, 2007

It was right around the time that I'd heard they'd amputated Ashley's breasts.

I'm with GuyZero; this kind of hyperbole is really disappointing, coming from a doctor.

Unless it's not hyperbole, and you are publicly declaring that you can't discern the medical difference between surgically removing breast buds from a child and amputating fully-formed breasts -- as an adult woman might have to undergo with a double mastectomy.
posted by pineapple at 5:39 PM on May 9, 2007

What about pulling all the teeth of someone with Lesch-Nyhan syndrome, so they don't bite off their own fingers or their tongue? (It's been done. Heck, look at the wikipedia page - that guy has 24 hour two point leathers to keep his fingers out of his mouth.) How about mentally disturbed people who scratch and claw their caregivers? OK to trim their fingernails? Sure. How about to amputate their fingernails including the nailbeds? (It's been done.)

What about people with slightly more mental acumen than Ashley? Get their assent before undergoing these procedures, or don't bother? What if they say no? Do it anyway? What if they say yes, but then the next day they decide they didn't want the procedure and they ask for it to be undone? What will you tell that person as their physician, GuyZero? How will you choose to phrase your reply in that context?

I'm disappointed in everyone who dismisses my arguments as "hypotheticals" and "slippery slopes" and "hyperbole." Go volunteer for one day in a facility to care for these people. Hear what the caregivers are saying.

And I'm extremely disappointed in you, pineapple. There is no hyperbole here. As a doctor, I advocate for my patients, especially when they're not able to advocate for themselves. There is an easy way to avoid falling off the slippery slope. It is contained in a very old oath I took: "Above all, do no harm."
posted by ikkyu2 at 5:59 PM on May 9, 2007 [1 favorite]

They routinely used to pull all teeth out in mental institutions--and sterilize. Lobotomies remove part of the brain, and those were common too.
posted by amberglow at 6:04 PM on May 9, 2007

Let's try another analogy, agregoli.

I'm licensed to "sever and penetrate flesh" in California.

I propose the following: You, agregoli, come to my office tomorrow. I will amputate both your breasts. I can't give you hormone injections to stunt and deform your arms and legs - we're too late for that. But I will do the next best thing: I will operate on your arms and legs. I will break both humeruses, both femurs, both tibias and fibias, both radiuses and ulnas. I will remove segments of these bones, shortening your arms and legs; and I will let them knit wrong, to simulate Ashley's skeletal deformities.

For your part:

You will show up.

You will not refuse. I do not permit you to do so.

You will not sue, because I, the doctor and ultimate authority, say you are in a class of people who may not sue. This will simulate Ashley's inability to advocate for herself.

Come tomorrow, agregoli, I'll carry this out. After this your arguments will carry more weight with me.

Or do you refuse after all? Why do you refuse, agregoli? In what fundamental way do you reserve to yourself, agregoli, human rights which you deny to Ashley? Why do you place yourself in one class of human beings with protected rights, and Ashley in another?
posted by ikkyu2 at 6:13 PM on May 9, 2007 [1 favorite]

Tell you what, I'll even break both fibulas, and leave your fibias alone.
posted by ikkyu2 at 6:16 PM on May 9, 2007

I'm disappointed in everyone who dismisses my arguments as "hypotheticals" and "slippery slopes" and "hyperbole." Go volunteer for one day in a facility to care for these people. Hear what the caregivers are saying... I'm extremely disappointed in you, pineapple. There is no hyperbole here. As a doctor, I advocate for my patients, especially when they're not able to advocate for themselves.

Well, first of all, she's not actually your patient. I appreciate that you apparently feel it's your duty to advocate for every patient everywhere, but you might watch the breathless language about your oaths and moral obligations if you want people to take you seriously.

Second of all: why are you "extremely disappointed" in me, exactly? Do I know you? Are you my doctor? Have I ever represented to you or anyone at MeFi that I have some sort of character trait or life experience that would allow me to swallow down a bunch of overly dramatic logical fallacies, just because the topic at hand is a very heartwrenching one?

I completely respect your right to your opinion. I even respect that it's likely a unique and more informed perspective than someone who isn't in the medical field. I've never said otherwise, so unless we know each other IRL somehow (and I'd love the heads-up!), the fact that you're making this personal says to me pretty clearly that you've let emotion cloud your ability to reason in this conversation.

Third of all, your implication that anyone who supports Ashley's family's choice can't understand what it's like to "care for these people," is downright rude. You don't know what the lives or families or experiences might be, of any of us, and it's egocentric to suggest that anyone whose opinion contradicts yours must just be clueless and uninformed.

Fourth, while you're on your high horse about how you alone know what the caregivers feel, I invite you to revisit the original thread where the exact kind of caregiver you seem to have the monopoly on understanding, weighed in.

Finally, I noticed that while rejecting my suggestion of hyperbole, you never answered my question. In this comment, you equated surgically removing breast buds from a child with amputating actual breasts. Do you truly not know the difference? Or were you purposely exaggerating to make your point?
posted by pineapple at 6:27 PM on May 9, 2007 [1 favorite]

They definitely violated Ashley's rights, but I cant fault them for it. So what if it was for their convenience? They are the ones that have to care for her. I sure as hell aren't volunteering, as I can barely take care of myself. Should we strive to avoid such rights violations in the future, especially considering past history of forced sterilization in this country? Probably. Am I going to stay up late at night worrying about how this is going to affect Ashley? I'm sure as hell not.

"She's a human, and humans grow up--it's messy being human, and bloody too if you're a woman."

But she'll never grow up, and never would have. She may physically have matured, but mentally she would always have been 3 months old. I can't think making her a freakish, stunted child physically is all that big a difference from the crappy hand she was dealt by life in being a freakish, stunted infant mentally. As for whether or not she is human, I'll leave that to the philosophers. To me she just barely qualifies, on the level of chimps (who I also would not subject to unnecessary surgery if I could help it).

As to whether the hospital violated the law intentionally, I seriously doubt it. Never attribute to malice what can be explained by incompetence.
posted by BrotherCaine at 6:33 PM on May 9, 2007

...explained by incompetence. Unless it's the current government doing it, in which case it's probably meant to enrich their own selves.

It will be very interesting to see what happens in the Canadian system when such a challenge comes up. We had the Robert Latimer case, in which the father claimed compassionate killing. Ten years to life.
posted by five fresh fish at 6:41 PM on May 9, 2007

Pineapple, you expressed disappointment with me. I am just returning your favor.

Breast buds are breasts are mammary glands. I understand that breast buds, being less mature, are generally found on less mature individuals. I don't understand why you're bringing up this distinction, though. Is there an ethical distinction between immature and mature mammary glands that I've overlooked?
posted by ikkyu2 at 6:58 PM on May 9, 2007

Pineapple, you expressed disappointment with me. I am just returning your favor.

Yep. A pretty clear indicator that you've lost reason. You might have another look at the comment.

Breast buds are breasts are mammary glands.

Maybe when you need them to all be the same for a histrionic argument on the Internet. I have no idea what kind of medical training you have that you're happy to just blithely ignore the Tanner stages, but no, breast buds aren't the same as breasts.

I'm bringing up the distinction because it was disingenuous of you to equate the two different body parts for dramatic effect. From what I've read, the physical "trauma" of surgical removal of breast buds has been compared to that of removing a mole*. Please look in the face of a woman who has undergone a radical double mastectomy and tell her that you think the procedures are equal, and ask her what she thinks of that.

You're playing medical ingenue in order to make your point; presuming you're actually a learned person of science and not just playing one on the Intarwebs, it's conduct unbecoming. If you want to get up on a wild-eyed soap box with a bunch of medical truthiness, feel free, but don't do so while waving your doctor's cred around at the same time.

*If I'm wrong, I strongly encourage anyone to correct me. I looked high and low for an authoritative source to confirm what I've previously read, but was unsuccessful.
posted by pineapple at 7:41 PM on May 9, 2007

Pineapple, you are being disingenuous, not I. If I were trying to make my point in the way you suggest I should make it, I would look for a woman who underwent radical double mastectomy against her will and without her consent, and I would ask her what she thought about removing the breast buds of a 6 year old girl who could not consent and, more importantly, could not withhold consent.

What do you think that hypothetical woman would say? Do you believe that she would say, "Well, removing my breasts against my will was a big deal. because the blood loss was estimated at 500 cc - but if they hadn't budded yet, well then that'd be more like removing a mole without my consent, EBL only 10 cc. No big deal."

I look forward to the next straw man you set up in lieu of actually engaging me in a discussion of the points I raise.
posted by ikkyu2 at 7:59 PM on May 9, 2007

Ahh, the straw man accusation. It's almost like Godwin around these parts, isn't it? Maybe there should be The MeFi Law -- "People who start citing types of logical fallacies are least likely to use them correctly."

I haven't ever suggested you make your point any way at all -- it's you who keeps bringing in the issue of consent... when all I have ever taken issue with your histrionic, medically inaccurate verbiage, especially since you are allegedly a doctor. Specifically:

"It was right around the time that I'd heard they'd amputated Ashley's breasts." - ikkyu2

So, let's get right down to it. Answer the question directly -- no more dancing and twirling while you obfuscate with ethical flash powder. Webster defines amputation as "the operation of cutting off a limb or projecting part of the body."

Are you declaring, as a doctor, that what happens when the breast buds are removed from a 6-year-old child is medically equal to "amputation"?

Not in your heart, not in your perfectly pristine ethics, not in your clearly superior commitment to the Hippocratic oath, not in your omniscient awareness of how all caregivers of the developmentally disabled think, but in your medical knowledge, based on medical training (you know, that wacky science stuff),

is breast bud removal surgery, performed on a 6-year-old, the medical equivalent of an amputation? Yes or no?
posted by pineapple at 8:25 PM on May 9, 2007

Yes. Amputation means cutting off a body part.

What is your point? Do you even remember?
posted by ikkyu2 at 8:53 PM on May 9, 2007 [1 favorite]

My point remains what it has been since I entered the discussion with you: putting any ethics issues or discussion of the Ashley treatment wholly aside -- because I have never questioned the opinions presented here on the ethics -- it's irresponsible of you as a doctor to behave the way you have been in this thread. This is a bioethics discussion; they're complicated even for laypersons. Whereas, you've spent months, maybe years, presenting yourself at MeFi as a dignified, empathetic medical professional, and instead of shining here with your grace and brilliance.... you start equating a minor surgical procedure with a major one, and then equating that minor one with multiple limb amputation. You're alleging that the Ashley treatment means that all foster children will end up maimed in boxes then fed to hogs. You're fearmongering. It's tacky and unbecoming.

As you have surely already realized, it didn't really matter what you answered, because you'd unfortunately painted yourself into a corner with your hysterics upthread. "Yes" is a medically disingenuous and emotionally dishonest answer (and I challenge you to demonstrate any single reasonable medical opinion out there that corroborates your position, since every single article I've found on this opposes you). "No" would have merely confessed that you were simply playing high drama for the crowd with your comment. (Frankly, I'd have preferred the latter, which I could write off to temporary passion and overreaction.)

If you want to argue with magical thinking, you don't get to also puff your science skillz/doctor cred around too. Take your stethoscope off and roll around in the dirt for a good philosophical throwdown with the rest of us civilians, or leave it on and act responsibly. But pick one or the other.
posted by pineapple at 9:46 PM on May 9, 2007 [1 favorite]

True, dat. Or maybe it's a case of he says potato and you say potato.
posted by five fresh fish at 10:00 PM on May 9, 2007

(gosh, that works eversomuch better in voice...)
posted by five fresh fish at 10:01 PM on May 9, 2007

I wish ikkuyu2 could be my doctor. I'm not used to MDs advocating FOR their patients, unless they mean to "help" them like they did Ashley.
posted by davy at 11:45 PM on May 9, 2007 [1 favorite]

Pineapple, this thread's for discussing the Ashley treatment, not a place for you to work out your personal problems with me. Take it to email.

And when I say that, you'll notice I don't have my email address in my profile. That's because I don't want to get any email from you. Email someone who cares.
posted by ikkyu2 at 11:57 PM on May 9, 2007

It's not just a slippery-slope or hypothetical anymore tho -- precisely because of the things done to Ashley and the reasons given--where is the line crossed? What's not allowable?

None of it allowable. What was done to her wasn't allowable, but some people went and did it anyway.

My point is that you don't have to concot an even more horrific situation to prove that the current situation is unethical. The current situation is unethical all by itself.

I'm disappointed in everyone who dismisses my arguments as "hypotheticals" and "slippery slopes" and "hyperbole."

I'm not dismissing your arguments. I agree with you. But I agreed with you before you put forward the analogy of cutting off her arms and legs. Personally, I thought that analogy actually weakened your argument. I don't agree with what Ashley's parents did - I understand why they did it (within my limits to understand anybody), but that's not the same as saying I think what they did was right.

As a doctor, I advocate for my patients, especially when they're not able to advocate for themselves.

And more doctors should do so.

There is an easy way to avoid falling off the slippery slope. It is contained in a very old oath I took: "Above all, do no harm."

It's ridiculous for me to tell you anything on this point, as you're the doctor and have infinitely more experience than I do. So I'm not lecturing you here, but giving my opinion and asking if I'm right.

Sometimes doing nothing causes harm. Sometimes the only way to do less harm than doing nothing still causes harm. it doesn't take an oncologist to see that chemotherapy is no walk in the park, but it's better than doing nothing. But either way causes some harm. So we have a situation where either path will cause harm. So who measures "harm"? Personally, I agree with you that what Ashley's parents did was more harmful than if they had done nothing. But not everyone agrees as it's a pretty bad set of choices either way.

So while "do no harm" is a pretty good rule, it's not always cut and dry. Right?
posted by GuyZero at 6:32 AM on May 10, 2007

Also, while I think most of your requests for clarification are rhetorical, on reflection, I don't understand this:

What about pulling all the teeth of someone with Lesch-Nyhan syndrome, so they don't bite off their own fingers or their tongue? (It's been done. Heck, look at the wikipedia page - that guy has 24 hour two point leathers to keep his fingers out of his mouth.) How about mentally disturbed people who scratch and claw their caregivers? OK to trim their fingernails? Sure. How about to amputate their fingernails including the nailbeds? (It's been done.)

Uh, so are you saying that it's ethical or unethical to have performed these procedures?
posted by GuyZero at 6:52 AM on May 10, 2007

Ikkyu2 was illustrating other cases where "treatments" resulted in removing parts of people's bodies. Presumably this occurred without their consent or even assent. That is unethical.
posted by onhazier at 9:00 AM on May 10, 2007 [1 favorite]

I don't see how it could be blanket unethical in all cases.
posted by agregoli at 9:12 AM on May 10, 2007

I don't see how it could be blanket unethical in all cases.

Because people have rights--all people, even the disabled and retarded and those who can't speak up for themselves.

It was routine to pull the disabled's and mental patients' teeth. And to sterilize the women. And to lobotomize them. ...

Now we're seeing the actual desexing and bonsai-ing of a person. It's not fearmongering to wonder what's next. Nor to equate what they did to Ashley to amputation and other things--it's natural, given the horrific history of altering those who are different.
posted by amberglow at 9:52 AM on May 10, 2007

Why should Ashley have to suffer toothaches or gum disease?
Why should Ashley have to suffer bed sores?
Why should Ashley have to suffer her period?
Why should Ashley have to suffer breasts smooshed by the restraining straps?
Why should Ashley have to suffer anything?

Where's the line there? They're all the same rationale the parents gave. There's nothing that doesn't fall under that rationale--amputations included.
posted by amberglow at 9:55 AM on May 10, 2007

Why should Ashley have to suffer toothaches or gum disease?

Yes, but what if one of Ashley's teeth develops a cavity, just like anyone else's teeth might? Should we say that it's unethical to pull her tooth because she can't give consent (or even assent)? (No)

All my dad's upper teeth were pulled when he was a teenager. For no real reason - I guess he had crooked teeth or something. Of course, he had the mental competency to give consent. But if it's acceptable to do under "normal" circumstances, there must be a situation where it's acceptable to do to someone who can't give consent when it's in their best interest. The issue is how we tell that from a situation where it's a mere convienence for the caregiver and violates the person's rights.

My issue is that the ethics of how to treat Ashley can be determined without having to go down a slippery slope, which is to me a much weaker argument. And let reiterate for those not following too closely, I agree that, with the information given, this wasn't a good decision by the doctors or Ashley's parents.
posted by GuyZero at 10:21 AM on May 10, 2007 [2 favorites]

I think we're on the same page here, GuyZero.

Since you asked, I think it's fundamentally unethical to declaw a person because they scratch their caregivers. My experience is colored by the memory of a young retarded child's hand; the caregiver had yanked all 5 nails out with pliers after being scratched one day. That resulted in jail time for the caregiver and the kid got moved into another foster home.

With regard to Lesch-Nyhan syndrome, I don't know what the right way is to stop these kids biting off their tongues, but pulling out all their teeth does not seem to me to be the right thing; nor does severing their masseter and temporalis tendons, rendering them incapable of closing their jaw (which IIRC has been proposed but never actually performed.) Kids with Lesch-Nyhan still have to eat and if you take out all their teeth the pleasure of eating - one of the few things in life these kids seem to be able to enjoy - is greatly reduced.

The slippery slope is relevant for other reasons than simply the weight it lends to our arguments, GuyZero. In particular, it shows up in my examination room, and the examination room of other neurologists. Every parent of a disabled person would like me to do something to make their burden lighter, and I'd like to do it for them; they look to us - people who've debated these issues and thought them out - for guidance on what is appropriate and what is not.
posted by ikkyu2 at 10:57 AM on May 10, 2007 [1 favorite]

Yes, but what if one of Ashley's teeth develops a cavity, just like anyone else's teeth might? Should we say that it's unethical to pull her tooth because she can't give consent (or even assent)? (No)

So you fix her teeth when a cavity arises. You don't pre-emptively pull her teeth out just because it may happen. That's the difference here. The parents pre-emptively did all these things to her.
posted by amberglow at 11:34 AM on May 10, 2007

the caregiver had yanked all 5 nails out with pliers after being scratched one day.

Ugh. Pretty horrible. But again, while I don't approve, I understand to a degree. These people are making decisions at the margin, economically speaking - you're only increasing the disabled person's suffering by a tiny amount to decrease your own suffering a lot more. Such is the difference between ethics and economics.

if you take out all their teeth the pleasure of eating ... is greatly reduced.

Heh. I find your phrasing darkly humorous. It seems like the issue is that they enjoy eating somewhat too much.

The slippery slope is relevant for other reasons than simply the weight it lends to our arguments

Hm, well, again, I don't think so. The slippery slope argument asks "where do we draw the line?" when there is no line to be drawn. Asking where the line should be drawn is exactly the approach that Ashley's parents took. They said "uterus, breasts, yes; legs, no". The slippery slope is entirely the wrong way to frame the decision because morality cannot be measured in teaspoons.

I think I dislike the slippery slope so much because, honestly, I thought her parents had made an OK decision until I had read some of the comments in this thread. My thinking was purely economic - it seemed like a fair trade for a girl who was born into suffering. But when cast in the light of her rights as a human, it's obviously wrong.

But I've gone on long enough. Thanks for the relevant examples of other disabled people and things done to "help" them. It's enlightening to learn that this is far from an isolated issue - simply an extreme case.
posted by GuyZero at 11:47 AM on May 10, 2007

it seemed like a fair trade for a girl who was born into suffering.

But that's not true either. She's not suffering, nor can anyone say for sure she would have with her breasts and uterus and full height and growth. She's not the one hurting at all (except for what the parents have now pre-emptively subjected her to).
posted by amberglow at 12:13 PM on May 10, 2007

I don't see how it could be blanket unethical in all cases.

Because people have rights--all people, even the disabled and retarded and those who can't speak up for themselves.

I still don't agree that it's blanket unethical for all cases. I'm sorry, we just have different opinions on this one.
posted by agregoli at 1:16 PM on May 10, 2007

She's not suffering, nor can anyone say for sure she would have with her breasts and uterus and full height and growth. She's not the one hurting at al...l

Don't you think you're being rather presumptous, given what others have said, in both threads, about how severly developmentally disabled people react to their own puberty and menses?

It seems that there is a lot of presumption about the parent's and doctor's true motivations in this thread, when most of us are do not have any expirence in being a caregiver in such a situtation, or the expirence in bioethics as the board and the doctors involved in the decision, and even then, they are often colored with undue emotion. I'm pleased that the law that requires court orders for sterilizations in cases like these, but decisions like these should be more the domain of the parents/guardians, the caregivers, doctors, and ethics boards.

Also, a lot of people are arguing about state intervention in the growth hormone/non-sterilization surgery aspect, and the report only talked about the sterilization. Not even the state found a compelling interest there.
posted by Snyder at 1:32 PM on May 10, 2007

Give us some ethical examples.
posted by amberglow at 1:32 PM on May 10, 2007

It seems that there is a lot of presumption about the parent's and doctor's true motivations in this thread
Their statesments past and present, and that they didn't follow established law move it from presumption to fact. The parents and the hospital have addressed it--the hospital admits wrong, and the parents still say the law shouldn't apply to them or other parents like them. It's not presumption.


Also, a lot of people are arguing about state intervention in the growth hormone/non-sterilization surgery aspect, and the report only talked about the sterilization. Not even the state found a compelling interest there.
The report did talk about the other things done to her, and recommended that they all need court orders too. Sterilization is the only thing that has case law and a legal record so far, from what i've read. Read the full report--they talk about every single thing done to her, and what should be procedure for the future. I'll add too, that this was a federally-mandated investigation.
posted by amberglow at 1:36 PM on May 10, 2007

The parents and the hospital have addressed it--the hospital admits wrong...

Only that they didn't get a court order, not the action itself. And I'm inclined to agree.

It's not presumption.

Actually, you presume a lot in this thread.

It's not a theory. It's actually probably just the ethicist taking the parent's words for it too, knowing how they went about this. No one tested that statement for fact, i bet.

Ashley's parents did what they wanted. They didn't do what she wanted. You can agree or disagree with them, but this was done to her by them for their benefit.

I wonder now if the lawyer knew they wouldn't have gotten approval?

You paint the parents in the worst light possible, in order to bolster your argument. I'm enclined to give the benefit of the doubt to parents who went to a lawyer, pediatrcians, and a bioethics board before proceding with anything.

You've said she is not suffering, how do you know? Even if she is not know, when she begins menses, she will (menstrual cramps, among other things,) and will have no way of relief or communication. What purpose does it serve to include a new source of pain in her life besides her ill-defined "rights"? As to what she "wanted"? Not only is there no way to determine that, she is incapable of "wanting" anything in regards to this. She wants to be warm, held, fed, interacted with, like any other baby. You write as if she is missing out on some great life learning expirence, I'd like to know what she would be missing. Can you tell me what she will now miss out on, without inserting what you would want into the argument?
posted by Snyder at 3:34 PM on May 10, 2007

Amberglow, Guyzero: Here are some ethical examples: you remove a tooth with a cavity in it, or you trim the nails or cut the hair of someone who can't consent. Those things are OK. Other things are not. You have to draw a line.

Consider the technically magnificent brain pathology studies available in panthothenate kinase associated neurodegeneration. The clinicopathologic studies are the finest of their kind.

Why were the studies so good? Because the doctors involved gave a thorough examination to the patients, then had them killed. Their fresh, still-warm brains were delivered to the pathology laboratory four hours later. Read about it here.

This was not some rogue physician behaving at the fringes of antique medicine. Julius Hallervorden was a world-renowned expert, practicing in a major university, in a Germany that had until very recently been leading the world in social, civil, and scientific development. His training was similar to mine - the best the era and the nation had to offer. I believe that his intentions were good - to help characterize and solve the problem of this wretched disease. But I also believe he should have known better.

Before you tell me there's no need to draw a line in the slippery slope, because it can't happen here, you tell me who speaks for Hallervorden's victims. Tell me who speaks for the African-American men in Tuskegee, condemned - by the very doctors from whom they sought help! - to 40 years of untreated syphilis, when penicillin was freely available and 100% effective.

I tend to assume everyone entering a discussion like this knows these historical facts. But maybe that's specious. Maybe they haven't been shouted from the rooftops as often as they should have been.

But don't tell me I'm being breathless and histrionic, goddamnit. I'll happily yell louder than this if it prevents this happening again to even one person. Because if you are blind to the facts of history you are doomed to repeat it.
posted by ikkyu2 at 3:45 PM on May 10, 2007 [1 favorite]

Because if you are blind to the facts of history you are doomed to repeat it.

I think the key distinction between what you mention, and the Ashley Treatment, is that in the cases of Tuskegee and Hallervorden, the reason behind the killing or withholding of treatment was research, with no regard for the patient, while, agree or disagree with the course of action, the Ashley Treatment was focused on her and her quality of life.
posted by Snyder at 4:19 PM on May 10, 2007

Snyder, let me quote here the last sentence from my link, which I would commend to everyone's attention:

..we must not bury the memory of the numerous victims of a medical profession that acted as an instrument of a philosophy that denied human beings their autonomy and dignity. Although the names of the victims are lost in the fog of history, we can perhaps begin to honor them by reflecting on these words from William Seidelman whenever we encounter the sorry tale of medicine in the Third Reich: "What needs to be published and studied today is not the `scientific' data from the experiment, but a recounting of the consequences of ethical compromise where human life and dignity become secondary to personal, professional, scientific and political goals.

I really like the way that this is stated and I feel that it is applicable here.
posted by ikkyu2 at 4:31 PM on May 10, 2007 [1 favorite]

Snyder writes "I think the key distinction between what you mention, and the Ashley Treatment, is that... the Ashley Treatment was focused on her and her quality of life."

How do you know? Why are you so sure?

If the doctors who bonsai's Ashley were focused on Ashley's welfare, why didn't they press for the appointment of an impartial guardian ad litem rather than circumventing the law?

Frankly I suspect the contrary -- that the doctors were enamored of breaking new ground, and let their ambition cloud their judgment, and yes, their empathy.

(And man, am I impressed by ikkyu2 in this thread. As he days, some things do need to be "shouted from the rooftops", and I thank him for doing so!)
posted by orthogonality at 4:40 PM on May 10, 2007 [1 favorite]

How do you know? Why are you so sure?

I don't "know" in a truly philosophical sense, but I am confident. Why? The parents, the doctors, and a board of 40 ethicists all agreed it was, and, barring that, at least it was phrased that way, that this is what was best for Ashely. None of the examples given by ikkyu2, could possibly phrase what they did as being in the best interst of the affected patient.

Frankly I suspect the contrary -- that the doctors were enamored of breaking new ground, and let their ambition cloud their judgment, and yes, their empathy.

What new ground were they breaking? None of the procedures they performed were at all new, just the reasoning and combination. What are your reasons to accuse them of unethical and unempathetic behavior?

ikkyu2, I guess I just don't see any direct connection, especially in regards to this quote, "...human life and dignity become secondary to personal, professional, scientific and political goals." Which of these goals are in evidence here?
posted by Snyder at 4:58 PM on May 10, 2007

ikkyu2 quotes "..we must not bury the memory of the numerous victims of a medical profession that acted as an instrument of a philosophy that denied human beings their autonomy and dignity"

Man, I am loathe to wade into this discussion... I feel that the ethical issues involved are truly fraught, and I'm a little surprised that so many of you see it in such black-and-white terms. But I wanted to respond to this quote, particularly to address concerns about the patient's "autonomy and dignity". I don't think autonomy can be an issue in this case, as Ashley is not an autonomous individual and she will never be one. I do this that human dignity, however, is a good lens through which to view the case. Unfortunately, while dignity is incredibly important, it is also incredibly subjective....

I guess that's why I don't know how to think about this.
posted by mr_roboto at 5:03 PM on May 10, 2007 [1 favorite]

ikkyu2, to clarify, it's not that I think the ethics of this are obvious, but that the situations between Ashley and the situations you bring up are different enough that little expierence can be brought from one to the other.
posted by Snyder at 5:24 PM on May 10, 2007

I'm enclined to give the benefit of the doubt to parents who went to a lawyer, pediatrcians, and a bioethics board before proceding with anything.

They did not follow the laws. They knew of them, but decided on their own that they did not apply to their "pillow angel". They even told the hospital they had complied. The parents & the lawyer ignored a law they didn't want to follow. And the hospital did not doublecheck, as they were supposed to. All these things are in the parent and hospital statements.

The parents are still even today advocating these procedures for other parents while repeating that the laws are too onerous--that getting a court order or approval is somehow too much, but doing all this to a child isn't??? Appalling.

No one advocated for Ashley. Not one person. There's no more doubt or benefit to give the parents, the lawyer, or the hospital board, which itself should be fined at the very least. Completely unprofessional and unethical on the lawyer and hospital's parts, and incredibly devastatingly selfish on the parents' part.
posted by amberglow at 6:33 PM on May 10, 2007

Snyder, the doctors and hospital ethicist got enormous publicity and were published for this treatment in pediatric medicine and other medical journals. I imagine they now have a full roster of clients from this too. Google their names.
posted by amberglow at 6:35 PM on May 10, 2007

amberglow, I finally read all of the other thread, and realised that not one thing from anyone else, including words from a parent in a very similar situation, has moderated your opinion on the procedure or the parents and doctors. You seem to prefer a moral absolute, so I'll leave you to that.
posted by Snyder at 6:41 PM on May 10, 2007

Can you tell me what she will now miss out on, without inserting what you would want into the argument?
Sure--she'll now miss:
--growing tall enough to see things that now she's too short to ever see.
--having an adult reach of her arms, for toys, or leaves on a tree, or for a full and complete hug that would reach around someone else's whole body, etc.
--discovering the simple pleasures of those parts of her body that were excised.
--being recognized and treated with the basic respect afforded to adults in public places or in crowds or anywhere really, even to the limited extent she would have been able to comprehend the reaction to her. She'll never be adult-sized now, so will always be treated as a child--our physical sizes determine how the world sees and treats us. Those differing experiences as she would have grown up are now closed to her forever.
...
(there must be millions more--Ashley's life is now far more limited and circumscribed than it would otherwise have been had these things not been done to her--even with her disability.)
posted by amberglow at 6:50 PM on May 10, 2007

Snyder, i'm actually much more angry now that i know for sure they ignored the laws and proper procedures (if you care). When the story first came out, no one assumed they would simply act as if the law doesn't apply to them.
posted by amberglow at 6:55 PM on May 10, 2007

Snyder, the parents did this largely for their own convenience. Those personal goals came into conflict with Ashley's right to autonomy over her body, and so Ashley's human rights were subordinated to them.

I really would hate to believe that doctors did something like this for their own personal glory or fame. But I've heard of worse.
posted by ikkyu2 at 8:07 PM on May 10, 2007 [1 favorite]

Goodness. Moral absolute is right, synder. I cannot see this as a black and white issue and I think it's foolhardy to paint it as such.

At any rate, I hope that Ashley's parents are able and allowed to care for her for years to come. I can't imagine a better environment for her than what her family provides.
posted by agregoli at 6:33 AM on May 11, 2007

When it comes to basic rights, you have to be absolute. There's no gray area allowed or else we get Tuskegee, and Nazi experiments, and all the horrors of the past that we've finally stopped.

This is a return to those days, and it's abhorrent.
posted by amberglow at 12:27 PM on May 11, 2007

Snyder, the parents did this largely for their own convenience.

I think "convenience" is not the word to describe this. As agregoli mentioned upthread, they could have very easily left her in a home and never dealt with her again. That could easily be labeled convienence with little argument. In this case, it's not just about their ease, but of making Ashley as comfortable and happy as she is now, also knowing that as she ages and becomes bigger, many of the things that make her comfortable and happy become less feasable. I don't think that's just convenience.
posted by Snyder at 1:42 PM on May 11, 2007

but freezing her at this size and preventing maturity prevents all new and different things that might make her happy and comfortable as she grew too. Stopping the clock like this prevents good -- not just bad. They also let their future fears outweigh any possible medical advance coming in the future, and let those fears justify actual surgery and hormonal intervention on a girl who wasn't in pain or in need of them.
posted by amberglow at 5:01 PM on May 11, 2007

And...still not feeling that this particular case involved monsters of parents who have physically wronged their daughter.
posted by agregoli at 4:45 PM on May 12, 2007

freezing her at this size and preventing maturity prevents all new and different things that might make her happy and comfortable as she grew too.

Has anybody esposing this view interacted with a three-month-old baby? They are practically plants. I have two former three-month-old babies whom I love very much, and did then, but cheez. Three-month-old babies want to be fed, physically comfortable, and held. Maybe have some music or something to look at. That's it. Anything else -- they do not care. So what fosters the things a three-month-old baby would care about, improves his quality of life. Consequently anything that made him physically uncomfortable or less likely to be held, impairs his quality of life.

There have been good points made here about what is or is not appropriate to do to a human being without his express consent; I can see how it might be wrong to do all this to Ashley even if there was complete certainty that it would improve her quality of life simply because she is a person and we just don't do this to people. Fair enough. But to argue that maturing physically would contribute to Ashley's quality of life? No. Pubic hair and being tall are not on the list of things three-month-old babies care about, and in that, the most significant sense -- Ashley would never have grown up, and never will. No matter what they do.
posted by Methylviolet at 6:23 PM on May 12, 2007

3-month-olds are far more than plants.
posted by amberglow at 7:20 PM on May 12, 2007

I side with Methylviolet.

Someone up there changed the context to that of a three year-old. Ashley is not that mentally developed: she has the capabilities and capacities of a three month-old infant.

It's more than a little freaky that she occupies a nine year-old's body. A twenty year-old body controlled by a three month-old mind? That's cruel.

However, I sincerely doubt the three month-old brain claim: surely she isn't colicky and nursing and only barely recognizing her parents.

God, parents of a perpetual three month-old. What a nightmare.
posted by five fresh fish at 7:26 PM on May 12, 2007

"we get Tuskegee, and Nazi experiments, and all the horrors of the past that we've finally stopped."

Amberglow, I hope so very much that you are not in for future disappointment on this, but my faith in human nature is limited enough that I suspect you are.

five fresh fish, that Latimer case is heartbreaking. I know what it's like to love someone who is destroying themselves, but I can't imagine feeling like I had to kill someone I loved because they were suffering.
posted by BrotherCaine at 9:19 PM on May 21, 2007

The Latimer case is one that helps underscore the need to balance life-saving against compassion. When it comes to living with extreme pain, if a person can not communicate their desire to continue living with the pain versus gently dieing, I strongly support the latter. Our religions (and my areligion) say that there is a better life after death (alternative, nothing after death): surely, then, it is better to pass into the afterlife than suffer agony for endless years.
posted by five fresh fish at 4:18 PM on May 22, 2007

Amberglow, China is doing experiments on its living prisoners that make the Nazis look like two-bit punks. They're doing goddamn live organ transplants, taking people apart bit-by-bit while artificially sustaining their flesh past death.

Which reminds me to AskMe...
posted by five fresh fish at 4:20 PM on May 22, 2007 [1 favorite]

(and, then again, not.

This weekend the Canadian media re-reported this issue; apparently there has been confirmation of the practice.

It freaks me out: ethically, I've got to boycott the country. Practically, half the product I handle at work is from China; my next computer purchase is coming up as this machine fails, and it is literally impossible to avoid Chinese manufacture of that; etcetera.

I despise how my country has failed to call China to the carpet for this.)
posted by five fresh fish at 4:41 PM on May 22, 2007

(and then, then again, it might all be media manipulation by the Falun Gong.)
posted by five fresh fish at 6:39 PM on May 22, 2007