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Wednesday, Nov 4, 2009
I think it’s good that for many the initial reaction to the Pillow Angel story is concern or distress. The human race does have a history of sterilizing the mentally or physically handicapped which, over time, we’ve come to recognize as a gross violation of moral and ethical standards. Our reaction shows that we haven’t forgotten this uncomfortable history, and we’re afraid to repeat it.
What this knee jerk reaction doesn’t take into account is that we have come an incredibly long way in all areas since that time. We’ve advanced civil liberties and medical science. We’ve created a completely new field called Bioethics.
As science continues to advance, we will be facing more and more of these kinds of dilemmas. A truly enlightened society will be able to weigh factors in individual cases, just as the doctors at Seattle Children’s did, as opposed to making knee jerk defensive positions and depriving people of truly miraculous treatment, purely on the grounds that it’s not appropriate for everyone, therefore it should not be available to anyone.
Small side note - I have an issue with the comparison of Ashley to Terry Schiavo.
I believe that a lot of the issues that arose from the Schiavo case came from the fact that people remembered her running around, laughing, walking, talking - being truly alive and lively. Her family knew her when she could sing along with the radio, bake cookies, stuff like that. To watch a person go from functional to completely non-functional is difficult enough without remembering what that person was like before. People look for hope in these circumstances where there might not be any - they look for ways that her smile might be like her "old" smile, when the similarity is only occurring because of the shape of her face.
Terry Schiavo was in a persistent vegetative state for years stemming from an undetermined event that severely damaged her brain. Ashley has also been "stopped" by an unexplained brain event. But she is not vegetative.
Ashley's case is different. She stopped at 3 months. She responds to stimuli the way that any normal 3 month old would, but that's it. Her family has no history of her baking cookies or driving a car or anything like that. That kind of hope is lost to them - there is no "old" Ashley. Ashley has no autonomy, and she never did.
I'm not posting to register an opinion, just pointing this out.
If this were the Netherlands, things would never even have come to this point. Euthanasia would have been performed when Ashley was 3 months old, and frankly, it would have been the right decision.
and protected from abuse at an institution, I want to point out that Ashley will probably live long after her parents are dead.
Dimes to dollars she spends years in an institution at some point in her life, despite this treatment.
And rosmar, dimes to dollars her time in an institution (should that come about) will be better (much less risk of bed sores, more activity possible, etc.) because of the decision that Ashley's parents and doctors made.
(I work in a children's rehab hospital, in a care- and activity-providing capacity, and I support Ashley's parents' and doctors' decision.)
This is obviously an incredibly complicated issue.
But I keep coming back to her personhood. Yes--she cannot speak for herself; she's not mentally advanced enough to be an advocate for her own health. But what of her individual humanity? If she was suddenly granted full, 'normal' intelligence--what would she think of the fact that a team of doctors (and her parents) had physically altered her, out of convenience?
I'm trying to put myself in her place. I know that's not the popular sentiment--it seems like most letter writers think we should put ourselves in the parents' place. But she is a Person. Why can't we let her live her measured life without surgically altering it to please our own persons?
"Convenience" makes it sound like they opted to use cake mix instead of cooking from scratch.
It's a matter of being ABLE to care for her themselves, and take her places, and not traumatize her with blood and pain and pelvic exams.
Good friends of mine are going through an awful trial. He's wheelchair bound and increasingly weak with MS. She keeps getting injured in caring for him and has had surgery on her arm. Do they subject a grown intelligent (up until recently independent) man to being cared for intimately by strangers? Does he end up in a home if she is hurt worse next time? It's not a matter of cake mix -- its a matter of awful decisions to be made as best they can.
There are two critical issues here, which most of the letter writers seem oblivious to. They are the ethics of the procedure itself and the ethics of how the decision was taken. Both are in doubt here.
An internal ethics board is subject to the pressures of any internal organization. There is to me, no clarity as to whether this hospital has an independent patient ombudsman, who would be free of those pressures. I also don't see any external organization which was able to review the procedure. Without external, independent review, this procedure should never have even been considered.
The parents seem thoughtful and to wish the best for their child, which is admirable. They also, in particular the mother, have considered some of their child's potential fears upon maturation. They are faced with the particular concern of a child who will not die before them, thus leaving them with the unknown of what happens after they die. It is instinct for them to protect their child, from the world, and perhaps from herself.
There is however, an incredibly troubling specter over the entire process. By justifying the complete removal of all sex organs as unnecessary, the doctors and parents have entered the realm of eugenics. They have called upon the worst lapses of medical ethics of the 20th century. Rosemary Kennedy comes to mind, robbed of the chance to perhaps develop, by parents both well-meaning and ashamed.
I doubt that there can ever be a satisfactory agreement on the ethics involved, and the Ashley Treatment will remain either a black mark on the hospital that performed the work or another footnote in an ongoing debate about our very contorted ethical debate. Had this happened in Germany, Salon readers would be on the barricades, screaming for blood.
An Israeli columnist issues a scathing indictment of Israel and calls on the U.S. to apply pressure.
Even when government officials purposely subject an innocent person to brutal torture, they enjoy full immunity.
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What was once depicted as a grave act of lawlessness -- Bush's NSA program -- is now deemed a vital state secret.
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