Wednesday, March 28, 2007

A "pillow angel"...

While an article in the Nation magazine, entitled "Judge Not?", delved into unrelated topics such as racial inequality, lack of universal health-care, the conditions at Walter Reed, and dubbing the concept of "Who are you to judge?" as "glib libertarianism", seeming all to sell the usual liberal agenda, I must say that I did find myself agreeing with some of the opinions put forth by the author of the article, Nation contributor Patricia J. Williams.

Some excerpts:
"For the last several months, I've been fretting about the policy implications of the case of Ashley, Seattle's so-called "pillow angel." Ashley is a 9-year-old child who was born with a debilitating disorder that caused her brain to stop developing at about the age of three months. She is sensate, she smiles, she seems at times to recognize her family members and to enjoy music. But she can barely move and will never learn to speak. When she was 6, Ashley's parents subjected her body to a series of interventions ostensibly designed to keep her small, easy to lift and thus less prone to bedsores and to render her permanently childlike.
"To these ends, her breast buds were removed, in part because of a family history of breast cancer but, more immediately, to accommodate the harness straps that hold her upright. According to her parents' blog, "developed breasts...would only be a source of discomfort to her." Her appendix was removed because were she to get appendicitis it was feared she would not be able to communicate her distress. She was given sufficiently high doses of estrogen to insure that her growth plates would close, limiting her height. This, despite the fact that estrogen at such doses carries other risks, most significant an increase in the incidence of blood clots; but her parents felt that being able to easily lift her outweighed that possible detriment. Her uterus, too, was removed, to spare her the pain of menstrual cramps "or pregnancy in the event of rape.
"I think this course was wrong for Ashley. Who of us, with full capacity to consent, would undergo the painful invasiveness of a full hysterectomy just to prevent cramps or as a prophylactic against rape's violations? Why then should it be permitted in the case of someone who has no capacity to protest?
"This was also very wrong as a matter of ethics and public policy. There seems to be, in the national debate about this case a popular consensus that the parents were well motivated, so who are the rest of us to judge? [...]
"I do not question either how much Ashley's parents love their daughter or how overwhelming their responsibilities must be. I do, however, fault the hospital establishment for allowing these surgeries to happen. In essence, the hospital allowed ethical questions about Ashley's long-term care and comfort to be privatized by deferring so unquestioningly to her parents' posited love."
I too wonder how ethical all of this is. And if we allow such things as this under these sort of circumstances, then what else? As Patricia Williams goes on to ask in her article, "why not remove all her teeth to spare her the pain of cavities? Why not excise her fingernails to spare her the pain of accidentally scratching herself? Why not remove one of her healthy spare kidneys and donate it?—that might make her and the world a little lighter."

Maybe some of what the parents have done here was for the best. Then again perhaps euthanizing is for the best? And if it is not only acceptable but in the best interests of the patient to do this then why not mandate it? For instance in the case of wards of the state...

I most certainly do not support the notion that the government mandate either procedures like this, nor euthanasia, I think the government should stay out of it — neither forcing nor prohibiting persons or their legal guardians in making such decisions. I do wonder, though, how can someone both argue that it was ethical and/or legal for Terri Schiavo to have been euthanized, yet argue against this?

Some other articles on this subject:
The Guardian — Frozen in time: the disabled nine-year-old girl who will remain a child all her life by Ed Pilkington

Time magazine — Pillow Angel Ethics by Nancy Gibbs part1

Time magazine — Pillow Angel Ethics by Nancy Gibbs part2

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