Melbourne, Australia
CAN it be ethical for a young girl to be treated with hormones so she will remain below normal height and weight, to have her uterus removed and to have surgery on her breasts so they will not develop? Such treatment, applied to a profoundly intellectually disabled girl known only as Ashley, has led to criticism of Ashley’s parents, of the doctors who carried out the treatment, and of the ethics committee at Seattle Children’s Hospital, which approved it.
Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve.
In a blog, Ashley’s parents explain that her treatment is not for their convenience but to improve her quality of life. If she remains small and light, they will be able to continue to move her around frequently and take her along when they go out with their other two children. The hysterectomy will spare her the discomfort of menstrual cramps, and the surgery to prevent the development of breasts, which tend to be large in her family, will make her more comfortable whether lying down or strapped across the chest in her wheelchair.
All this is plausible, even if it is also true that the line between improving Ashley’s life and making it easier for her parents to handle her scarcely exists, because anything that makes it possible for Ashley’s parents to involve her in family life is in her interest.
The objections to Ashley’s treatment take three forms familiar to anyone working in bioethics. First, some say Ashley’s treatment is “unnatural” — a complaint that usually means little more than “Yuck!” One could equally well object that all medical treatment is unnatural, for it enables us to live longer, and in better health, than we naturally would. During most of human existence, children like Ashley were abandoned to become prey to wolves and jackals. Abandonment may be a “natural” fate for a severely disabled baby, but it is no better for that reason.
Second, some see acceptance of Ashley’s treatment as the first step down a slippery slope leading to widespread medical modification of children for the convenience of their parents. But the ethics committee that approved Ashley’s treatment was convinced that the procedures were in her best interest. Those of us who have not heard the evidence presented to the committee are in a weak position to contest its judgment.
In any case, the “best interest” principle is the right test to use, and there is no reason that other parents of children with intellectual disabilities as profound as Ashley’s should not have access to similar treatments, if they will also be in the interest of their children. If there is a slippery slope here, the much more widespread use of drugs in “problem” children who are diagnosed as having attention deficit hyperactivity disorder poses a far greater risk than attenuating growth in a small number of profoundly disabled children.
Finally, there is the issue of treating Ashley with dignity. A Los Angeles Times report on Ashley’s treatment began: “This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.” Her parents write in their blog that Ashley will have more dignity in a body that is healthier and more suited to her state of development, while their critics see her treatment as a violation of her dignity.
But we should reject the premise of this debate. As a parent and grandparent, I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.
Here’s where things get philosophically interesting. We are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more advanced mental level than human infants. Just making that comparison provokes outrage in some quarters. But why should dignity always go together with species membership, no matter what the characteristics of the individual may be?
What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.
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