Thursday, November 02, 2006

Should severly disabled kids be kept small, so that they are easier to care for?

I don't know what to think about this one -- I cannot imagine having to make such a decision and cannot imagine the tears and agony of these parents:
From Reuters:
6-year-old given hormones to stunt growth so parents can care for her.

New York - In a report published in a medical journal this month, two doctors describe a 6-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home.

The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee.

In their report in the Archives of Pediatrics and Adolescent Medicine, Drs. Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explain the reasoning behind what they hope will generate a healthy debate.
To read on, click here.


Kelly Hills said...

Wow, they finally decided to do it? Interesting.

I was at UW when this was happening; it was one of my first experiences with the difference between thinking about ethics in medicine and experiencing ethics in medicine. It's one thing to weigh in with your opinion in a vaccuum, and another to do it in front of the people your opinion impacts.

This case in particular made me wonder why we view technology as something that must be used to always augment or enhance our selves and our lives, to always use it as a progression 'forward', instead of a way to pause or even regress, if that's what's necessary. Of course, we can argue over what is necessary, but that knife cuts both ways - I doubt most of us feel a lot of end of life technology is "necessary", yet it still happens.

Anyhow, with this case in particular, it almost seems to hinge on the idea of quality of life, and the fact that the child will have a better one if she's size-stunted. It allows her to stay with the family, the environment she knows and is comfortable in, and makes it possible to continue giving her the high quality of care she's been receiving so far.

I think some people would like to cry selfish on the part of the parents, because they'd like to keep life as easy as possible for their family and taking care of their daughter, but that's just focusing on the "easy" part, and not seeing how relative that term is. Sure, they'd like things to be as easy as possible to keep their daughter at home - but when we stop to think about what "easy" is in this particular case, we can see that it's not how those of us without a severely disabled child would define the word.

Rachel said...

Ah, I was just about to send you this story!

Anonymous said...

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The questions come down to whether the girl's right to life and liberty are being infringed. Another way to put it would be to question whether the parents are acting in her best interest.

If as the article reports, she's always going to have the mental capacity of an infant, then maintaining her body at the size of a smaller child is not depriving her of the right or ability to determine her own fate. And the intention is evidently to keep her healthy and alive.

I remember the controversy in my hometown back in the '70's over a hysterectomy for a girl with very severe mental retardation. And I've seen lots of families struggle to continue caregiving as their children grew and entered puberty.

I agree with the family and the ethics committee's decision.

Someone recently encouraged me to follow my instinct toward what he called "maternalism." But I don't think I came to this conclusion just because I believe that I know best.

Pillow Angel said...

The heroine of this discussion is our daughter Ashley. If you are interested in the full story about the "Ashley Treatment" see: and for Ashley's photos see: