quality of life

By Diogenes ( articles ) | Jan 04, 2007

The parents of a child afflicted with a severe brain impairment have carried out a number of calculated mutilations intended to improve her quality of life by eliminating future inconveniences and possible medical complications. According to the (London) Times, the child's parents instructed doctors "to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth."

Because of her small size, the parents say, Ashley will receive more care from people who will be able to carry her: "Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings ... instead of lying down in her bed staring at TV all day long."

By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia -- and the removal of her uterus means that she will never have a menstrual cycle or risk developing uterine cancer.

Maybe, maybe not. What I find disturbing, if not surprising, in this story is where the child's parents deal the aces and where the deuces in making their decisions. For example, they seem to take it as given that medical science will not find ways to treat the child's impairment or to ameliorate the hardships expected to attend puberty (we're told that, at present, "she cannot walk, talk, keep her head up in bed or even swallow food"). On the other hand they seem confident that the surgery and hormone therapy will have only positive effects, and astonishingly sanguine about the improved social life the child will experience as a consequence. The child's father offers what he takes to be a religious justification:

"Some question how God might view this treatment," he wrote. "The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal ... to maximise her quality of life."

It's the arbitrariness and -- I suppose -- the finality of the arbitrariness that are unsettling, because the steps are taken in anticipation of hardships and not in response to them. Of course we'd feel sympathy for a child who was neutered in the process of excising a lethal cancer. But surely it makes a difference to a person's spiritual and emotional life to mutilate her with the purpose that she'll never mature sexually -- even if there's no foreseeable possibility of a physiologically or socially normal existence in either case. Somehow parental prerogative has crossed a line into a kind of pet ownership ("we spayed kitty for her own good"). It would be a horrible plight for a parent to be constrained to remove a diseased organ from his child, and we could share the anguish of his decision -- but can we say the same about the choice to remove a healthy organ?

Ashley, aged nine (Times photo).