Pillow Angel Ethics

By NANCY GIBBS

What kind of doctors would agree to shorten and sterilize a disabled 6-year-old girl to make it easier for her parents to take care of her? Dr. Daniel Gunther and Dr. Douglas Diekema, who revealed the details of the Ashley Treatment in the Archives of Pediatric & Adolescent Medicine, were intent on improving the life of the child whose parents call her their "pillow angel"; they think their critics don't understand the extreme nature of this case. The critics, especially advocates for the disabled, think the doctors don't understand the true cost of what they have done. Talk to all sides, and you confront every modern challenge in weighing what medicine can do vs. what it should.

The case: Ashley, now 9, is a severely brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her the way they wanted to. So they set out to keep her small. Through high-dose estrogen treatment over the past two years, her growth plates were closed and her prospective height reduced about 13 in., to 4 ft. 5 in. "Ashley's smaller and lighter size," her parents write on the blog defending their decision, "makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc." They stress that the goal was "to improve our daughter's quality of life and not to convenience her caregivers."

But the treatment went further: doctors removed Ashley's uterus--to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape--and her breast buds because of a family history of cancer and fibrocystic disease. "Ashley has no need for developed breasts since she will not breast feed," her parents argue, "and their presence would only be a source of discomfort to her" since the harness straps that hold her upright go across her chest.

The parents say that the decision to proceed was not a hard one for them--but the same cannot be said about the doctors. For the 40-member ethics committee of Seattle Children's Hospital, "it took time to get past the initial response--Wow, this is bizarre--and think seriously about the reasons for the parents' request," says Diekema, who chairs the bioethics committee of the American Academy of Pediatrics and was brought in to consult on this case.

Keeping Ashley smaller, the doctors argue, has medical as well as emotional benefits: making it easier for her to be moved around means better circulation, digestion and muscle condition and fewer sores and infections. Her parents could continue to lift and bathe and dress her without assistance. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing." Looking back on the committee debate now, both doctors admit there was an instinctive, emotional ingredient in the decision to proceed. "I think in the end it was the obvious bond and love that exists between Ashley and her parents that convinced them this was the right thing to do," Gunther says.

And 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 suffering, 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.

Autopsy the doctors' argument, and you find that they concluded they could remove Ashley's uterus and breasts because she would be better off without them; they could keep her short because, since she'll never have a job or a romance, she wouldn't suffer the social consequences of small size. "To those who say she has a right to develop and grow," argues Gunther, "[I say] 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.

Ashley may be an extreme case, but she is a terrifying precedent. Critics note that development in the disabled can come very, very slowly, so deciding when a child is only 6 to change her body irreversibly could amount to a medical form of identity theft. Ann McDonald-Cacho in Berkeley, Calif., was told there was no hope for her son Philip, who had a diagnosis of the same condition as Ashley's. There's no way to know if Ashley will ever be able to sit up or control a wheelchair with her head as Philip eventually could. "They flew to the worst-case scenarios," she says--worrying about what might happen to Ashley and intervening drastically to prevent it. Removing her uterus will not protect her from abuse, only from pregnancy. Was there really no better way?

And how far would doctors go to make a child more portable? Would it be O.K. to amputate her legs, since she can't use them either? Frequent touch is indeed important, but is it really so much harder to hug someone who is 5 ft. 6 in. or take her to the table at dinnertime? Turning people into permanent children denies them dignity and 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 and 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 infantilizing."

The doctors knew that the treatment would be controversial, although they did not quite foresee the media storm that would erupt when they invited their peers to weigh in. "I felt we were doing the right thing for this little girl, but that didn't keep me from feeling a bit of unease," admits Diekema. "And that's as it should be. Humility is important in a case like this." Gunther too understands the intense feelings the case inspired--but "visceral reactions are not an argument for or against," says Gunther, adding that this was not a girl who was ever going to grow up; she was only going to grow bigger. As for the extreme analogies, growth attenuation is nowhere nearly as risky and disfiguring as amputation, Diekema says. It just accelerates a natural process by which the body stops growing. Parents who give their short children growth hormones do so for social more than medical reasons, he notes. How can it be O.K. to make someone "unnaturally" taller but not smaller? To warnings of a slippery slope, Gunther tilts the logic the other way. "The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope," he says. "If we did not use therapies available because they could be misused, we'd be practicing very little medicine."

Those deploring the Ashley Treatment as a medical fix for more than one family are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors openly consider allowing euthanasia of the sickest infants, which is 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 it "think more radically about nonresuscitation, 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 hers was a life worth fighting to preserve.

With reporting by Jeninne Lee-St. John