Pillow Angel Ethics, Part 2

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Nine-year-old Ashley, who was born with a rare brain condition known as static encephalopathy, at home in the state of Washington. Her parents have approved growth-stunting medical treatment that will ensure she has a child's body for the rest of her life.

The doctors who agreed to an experimental treatment for a severely disabled girl thought there were clear medical benefits to keeping her small. Autopsy the doctors' argument, and you find that they concluded they could remove Ashley's uterus and breast buds because she'd be better off without them; they could keep her short because, since she'll never have a job or a romance, she'd not suffer the social consequences of smallness. "To those who say she has a right to develop and grow," argues Dr. Daniel Gunther, "Ashley has no concept of these things." But he is talking as a scientist; the philosopher uses different tools. Just because autonomy doesn't show up on an X-ray doesn't mean it can't be harmed by a scalpel. And if rights are inalienable, they exist whether the patient is aware of them or not.

Looking back on the debate within the Seattle Children's Hospital ethics committee, the doctors admit that there was an instinctive, emotional ingredient in the decision to proceed with hormone treatments and surgery. "I think in the end it was the obvious bond and love that exists between Ashley and her parents," Gunther says, "that convinced them this was the right thing to do."

That argument sends disability rights advocates around the bend. "Benevolence and good intentions have been among the biggest enemies of disabled people over the course of history," says Arlene Mayerson, a leading expert in disability rights law, who like many critics feels intense sympathy for these parents. "Many things that were done under a theory of benevolence were later seen as wrongheaded violations of human rights. " Medicine's role is to relieve pain and improve function, but Ashley was not sick, and the treatment was untested; do we really want to start bending the rules in the case of the disabled just for the promise of some benefit in the future, advocates ask? That's not healing, it's gambling.

Ashley may be an extreme case; but she is a terrifying precedent. Critics note that for brain-damaged children, development can come very, very slowly — so deciding when she's only six to change a child's body irreversibly can amount to a medical form of identity theft. Frequent touch is indeed important; but is it really so much harder to hug someone who is 5'6," or bring her to the table at dinnertime? Turning people into permanent children denies them whatever subtle therapeutic benefit comes from being seen as adults. "I know they love their daughter," says Julia Epstein, communications director for the Disability Rights Education and Defense Fund,(www.dredf.org) and the mother of a disabled child. "But they refer to her as the pillow angel. I know that's meant to be a sweet term, but it's terminally infantalizing." Her organization issued a statement affirming that "we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct." With the right information and support, disability rights advocates believe, there is no need for a medical solution to an essentially social problem.

Doctors watching it all from the sidelines note that there are serious medical questions at stake. For one thing, there is no way to know the effect of high-dose estrogen on such a young girl. "Before moving forward wholesale, we need to study it carefully," says Dr. Jeffrey Brosco, an associate Professor of Pediatrics at the University of Miami, who wrote a dissent in the journal where the case was published. "Right now it is truly an experimental treatment." But he is sure there will be more interest: just last week a family he treats had to put their 19-year-old son into a group home, because he had become too big and aggressive for them to care for anymore. "They don't have the money for a personal aide at home," he says, noting that in Florida alone there are 16,000 people on the waiting list for home services.

In fact one thing everyone could agree on was that the case highlights the lousy state of home care in this country. "The web of support for families who really want to care for their family member is uneven and sometimes tattered," says Thomas Murray, President of the Hasting Center, an independent bioethics research institute. "If there were abundant support to help care for a fully grown son or daughter, then people might not be pushed to a radical medical option like this."

Those troubled by the Ashley treatment as a medical fix for a larger social problem are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors be allowed to kill the sickest infants — which is already legal in the Netherlands. "A very disabled child can mean a disabled family," the college wrote to the Nuffield Council on Bioethics, and urged that they "think more radically about non-resuscitation, withdrawal of treatment decisions... and active euthanasia, as they are ways of widening the management options available to the sickest of newborns." At least in Ashley's case, however much the doctors debated the proper "management options," they all agreed that her life had a value worth fighting to preserve. But as a standard, that's a pretty low bar to set.