FEW people in the past week can have missed the extraordinary story of a 9-year-old girl named Ashley. Ashley鈥檚 brain will always function at the level of an infant and she is bedridden. To help them cope with Ashley, her parents chose to stunt her growth with hormones and to remove her uterus and developing breasts. Debate has raged over whether Ashley鈥檚 parents have violated her rights and stripped her of her dignity simply for their own convenience (see 鈥淥perating in whose interest?鈥�).
There is no doubt that these interventions are extreme. Some have reacted with a feeling of revulsion. But as the debate unfolded it became clear that Ashley鈥檚 best interests were uppermost in her parents鈥� minds. Her quality of life is defined by her levels of comfort and interaction with others. Each intervention was chosen to increase one or both these factors.
Ashley鈥檚 parents consulted several doctors and presented their case to an ethical panel of some 40 professionals. Doctors foresee potential benefits for Ashley and no serious long-term risks from the treatment: certainly none that would exceed the health risks she faces from being bedridden.
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It is true that Ashley鈥檚 parents made choices for her. But Ashley cannot make them herself, and will never be able to do so. She is profoundly disabled: unable to communicate or even to hold up her head. If there were a chance she would ever be able to choose to enter a relationship and bear children, the debate would be very different, but that is not how Ashley鈥檚 life will be.
Some people have objected to Ashley鈥檚 treatment on the grounds that it starts us down the slippery slope to a world where parents can make their own lives easier by imposing medical or surgical procedures on their children. This is precisely why society needs ethical panels or court-appointed advocates to ensure that children鈥檚 interests remain top priority. By publishing Ashley鈥檚 story, her doctors have provided a template for how such oversight can be carried out.
Still, there is a yawning gap in the decision-making process. We do not know if bedridden people with profound mental impairment who are short and light live happier lives than their taller, heavier peers. Only randomised controlled trials will answer that question. Surgeons in particular need to overcome their resistance to subjecting surgical procedures to such rigorous testing.
Until such trials take place, Ashley鈥檚 treatment will stay an inconclusive experiment: whether it will make her life better than it would otherwise have been will remain a matter of opinion.
