Friday, January 05, 2007

The Ashley Treatment.

A story surfaced this week on a girl "frozen in time", to use news writer's hyperbole. In short, Ashley is a nine year old girl diagnosed shortly after birth with "static encephalopathy of unknown etiology". Exactly how this diagnosis differs from what was once known as severe/profound mental retardation escapes me, but I may simply be dating myself. Nevertheless, the end result seems to be the same - the mental and motor capabilities of the little girl are arrested at a level more or less equivalent to those of an infant a couple of months old. She can smile, she can cry, she is aware of her environment, and kicks and wiggles and seems to like music. However, she cannot move herself, feed herself, hold her head up, roll over or change her position in bed. She is, as the parent's website says, "tube fed and dependent on her caregivers in every way." Today she is nine years old, weighs 65 pounds, is reportedly otherwise healthy with no medical problems, and lives at home with her parents and two siblings.

At age six, the parents undertook a series of procedures to prevent Ashley from attaining full adult size and sexual maturity. All of these procedures were performed at the Seattle Children's Hospital, and have been reported in peer reviewed medical journals. The procedures included high dose estrogen therapy to prematurely fuse the growth plates of the long bones, thus limiting final height and weight, hysterectomy to remove the uterus (the ovaries were left in place), and surgery to remove the breast buds, to limit breast growth. Although these procedures are certainly unusual for a six year old, none of them alone, or together, is especially dangerous, complex, or uncomfortable for the patient. Indeed, simple hysterectomies in adults are every day procedures, breast bud removal is quite common (in boys, generally, for gynecomastia, though I also see it done in young girls who have supernumerary breasts), and there is considerable experience with high dose estrogen use in girls for height limitation (I certainly don't agree with it or condone it, but it's not a medically mysterious procedure). In short, there's nothing experimental, dangerous, or heroic about the procedures themselves. It's the reason that the procedures were done that is producing the media spotlight.

The parents undertook these procedures for their little girl, quite simply, because they believe that the procedures posed little risk, and they would help greatly in the maintenance of her life and well being. I think the parents make powerful arguments supporting their course of action, and I refer you to their website here.

This is not an easy case. Although I have no idea whether Ashley's parents are Catholic, this is a Catholic website and we should think about the problem using Catholic principles. Are the parent's actions clearly condemned under Catholic moral principles? Let's consider. First, their intent is good. Having no reason to disbelieve their website, I accept that their motives are primarily in Ashley's best interests, and one thing which is clearly in her best interest is to remain in a home surrounded by family, rather than to end up in an institution. Caring for her at home indefinitely is much more feasible if she's 65 pounds and sexually immature, than if she's full adult weight and size, and sexually mature. It's also a reasonable supposition that, subsequent to these procedures, her overall health might be better, longer. The question, in my mind, is, given that their intent is good, have they engaged in an evil means to secure their intent?

To answer that question, we first answer the following: (1) given that a deliberately contraceptive act is never justifiable, does the removal of Ashley's uterus fall into this category? The primary reasons for her hysterectomy (according to the parent's website) relate to medical management as she ages, although "inability to become pregnant" is an acknowledged secondary "benefit". In other words, the main reason for her hysterectomy appears to be medical management, with contraception a secondary effect. As the primary reason for the hysterectomy was not contraceptive, and in light of the fact that Ashley would not ever be able to become pregnant in any way which is morally acceptable, can her hysterectomy be justified under the principle of double effect? (2) Does her overall treatment, which has, after all, had a profound effect on her body, diminish her dignity or do her violence as a person? In order to answer that, I think we would first have to define exactly what the question ‘diminish or harm her dignity as a person’ means in Ashley's case.

In addition, her treatment raises other profound questions. If it's OK for Ashley, for what other sorts of handicapped persons might it, or something like it, be acceptable? How handicapped does one have to be before this sort of thing is acceptable? What sorts of medical problems might a 45 year old, 65 pound, sexually immature Ashley have, that she might not have had if she'd been allowed to mature normally? What will a 45 year old, 65 pound sexually immature Ashley look like? She's not "frozen in time", and she certainly won't look like 9 year old Ashley.

So, if I may offer a layman’s opinion at this early stage, I am unconvinced that what Ashley's parents have done is clearly wrong, given my admittedly incomplete understanding of Catholic medical ethics. But their actions do raise a lot of important questions and concerns, and they set a dangerous precedent in our civilization, a civilization which shows itself increasingly unable to grasp the meaning of what it is to be human; i.e., created in the image of God. I'm sure there will be more to come on this issue from reliable Catholic priests, ethicists, and thoughtful laity

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