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).

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  • Posted by: - Jan. 05, 2007 1:44 PM ET USA

    No correction to be made, JW. Ed Peters notes on his blog that the Catechism (2297) forbids this kind of action, and the Code of Canon Law (1397) provides for canonical penalties on those who mutilate others. And that's all this can be called - mutilation. No matter how difficult it is to care for someone, these steps are only designed for the parents, not for Ashley. All their protests to the contrary are mere sophistries to justify their actions.

  • Posted by: - Jan. 04, 2007 5:29 PM ET USA

    RPP -- The first condition of the principle of double effect is that the action taken must be either morally good or morally neutral in its own right. One can never commit a moral evil and justify it using double effect. I don't think deliberately removing a healthy organ or preventing the physical development of a child could be morally justified, no matter what the good effect. I'm open to correction on this matter.

  • Posted by: rpp - Jan. 04, 2007 3:59 PM ET USA

    D., I think we may be judging this too harshly. I am ultra-conservative when it comes to these issues, yet I am also well aquainted with how to care for someone who is as totally dependant as this "pillow angel". Morality has much to do with motives. The principal of double-effect is in play here big time. I am unable to either condemn or condone. I am full of sympathy for the girl and family. Before commenting further, see what the parents say: http://ashleytreatment.spaces.live.com/

  • Posted by: sparch - Jan. 04, 2007 1:56 PM ET USA

    A number of years back, maybe three or four years, I read of a woman in her mid-thirties who had her breasts removed because there was a history of breast cancer in her family. She did not wish to die of breast cancer like her mother. It's when we feel we are most in control is when we are the most constrained.

  • Posted by: - Jan. 04, 2007 11:42 AM ET USA

    Why should this shock us? The only really shocking part is that the did not remove her brain an call it a "late term abortion". Better yet,, why not remove all her organs and have her stuffed? As a child I could not understand how the Nazis justified what they were doing. Today I watch as we slide down the same slope; "for their won good."

  • Posted by: Sir William - Jan. 04, 2007 9:19 AM ET USA

    S. Will's wife: Having had an adult sister who died from ALS (paralyzes over time) I know first hand how difficult it is to try to keep a paralyzed menstrating woman clean, especially if her flow is heavy. My sister tried to get doctors to remove her uterus & they would not. Oddly, they would sterilize her, but would not remove her uterus for the sake of her own comfort, at her own request and she had only 3 years to live. But the removal of breasts & estrogen therapy in a child?