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Sunday, Nov 8, 2009
I'm jumping in to agree with everyone who said that there was a lot of medical ethics involved in this decision. The panel of people involved was a broad panel, and many of them were trained in medical ethics. So, you can't actually say they didn't attempt to consider the decision from all the ethical points of views possible. This is the best decision IN THIS CASE.
This woman has no autonomy that can be protected by anyone other than her guardians. Her parents are the surrogate decision makers for her, and they protect her autonomy. They are proxies for her in this case, and they must imagine what she would want (if that's at all possible), and if they can't imagine it (lack of information about any kind of want of a 3-month old beyond care, nourishment, stimulation), they must do their best to decide in her place.
What benefit is it to this woman (who has not AND will never advance beyond a 3-month-old mental state, if her prognosis is to be believed) to have menstruation, menstrual cramps, sore and bloated breasts, regular pap smears, and eventually mammograms (doesn't breast cancer run in the family, too)? Absolutely none given her condition. There is absolutely no benefit for a 3-month old to have these things. What benefit is there for her to be close to her family, and stimulated as much as she can be through interaction? Quite a bit.
For those of you who want her to have autonomy, do you think her parents should themselves (or pay an outside worker) to stimulate her sexually once her sexual organs are fully developed? Is it in her rights to have sexual stimulation? How often? If you think that sounds weird and possibly bordering on rape, that's because this woman doesn't have full autonomy because she can't ask for or indicate that she desires such.
I can't see how you think the parents decided this for their own benefit. Yes, they will certainly benefit by having her caretaking remain the level it is now (rather than becoming increasingly difficult), but the medical ethics panel would not support a decision for those reasons. The parents made the decision based on doing their best as surrogate decision makers in the place of a woman who cannot make a decision nor indicate her preferences (nor even form preferences about these kinds of decisions).
The anger at these parents is unreal. Back off. If they really wanted to make it easy, they could have lopped off her arms and legs--but they didn't, they love her. They just cut up her breast and insides and forced her to take heaps of hormones that are likely to compromise her health in unintended ways down the road. That's all. She still has her arms!
Lost in this dialog, as we bicker about the rights of the parents, is Ashley.
Sick people will do sick things, breasts or not. The hysterectomy will prevent pregnancy in the event of sexual abuse. Keeping the girl small and thus in the care of her parents will likely prevent sexual abuse, but then if she's in her parents care who are they worried is going to abuse her? The breasts part was just weird, and if there is to be a surgery, why not after her breasts developed?
I think the problem most people have with the procedure is that it looks like the parents are mutilating their daughter for the sake of their own desires and not so much her comfort. The parents may want the best for their daughter and I'm sure they're sincere, but their motives and needs shouldn't factor into this decision at all. Either it's acceptable to do to people or it's not. Put another way, if it's ethical when she's a child, it should still be ethical when she's an adult; preventing her from growing breasts is the same choice as cutting them off after she does.
Sure, she won't be reproducing, so cut out her uterus. She won't be knitting or running either, so cut off her arms and legs as well as they'll just get in the way and make her heavier and harder to care for.
I love the posters that lecture us that if you haven't cared for someone with a disability, you aren't permitted to comment. Apologists for the parents please consider that this issue has the child at its heart, not the parents.
Rebecca Clarren writes, "Already at least three other families have approached doctors at the Seattle hospital, asking them to create their own Pillow Angels..."
No.
Ashley became a "pillow angel" when her brain stopped developing. She was a "pillow angel" before the surgery and remained one afterwards. Her parents coined the term to describe her life with a brain that did not grow, not her life with or without a uterus and breasts.
This sentence seems to me evidence of deep bias against the parents.
Does anyone else find it interesting that a female doctor was not consulted for this article? Isn't there a huge divide in medicine right now concerning the fact that most treatments are based on a male patient?
The most enlightening fact in this article is the lack of procedure for ethical decisions made within medical institutions. I think digging a little deeper into this disturbing fact would have been a better use of two pages instead of spinning personal controversy like every other news agency on the planet.
"She's a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure"
Excuse me? How exactly would you expect her to exercise that right? I'm not sure what the laws are on something like this, but it's pretty clear to me that someone with the mind of a 3-month old would not be able to give consent, not to mention the question of exactly what kind of circumstance would even put her in such a position. Which means that any 'sexual pleasure' she experienced would have to be as a result of rape...
...ok, actually, it just occured to me that I forgot about masturbation. So is this about defending her right to at least experience the small pleasure of masturbating? I might be down with that, but the downside is that it would lead to feelings of frustration, as she would be saddled with a desire that she would never realistically be able to completely fulfill. The issue is certainly complicated, but overall, I don't think the sexual pleasure argument holds up.
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