Pillow Angel Ethics

(3 of 3)

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.