The Ashley Treatment

By now, most readers have probably heard about the so-called Ashley Treatment.  As her parents explain on their newly created blog:

Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.

[ . . . ]

The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

As one might expect, much controversy has followed the story.  Ashley's parents stress that they pursued the Ashley Treatment for her benefit, not for the benefit of her caregivers (i.e., the family):

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

This is a difficult case, and I simply haven't really decided what I think about the situation yet.  However, I will list below some different bloggers' takes on the case, including disability bloggers.  Most bloggers I have found seem to disagree with the parents' decision to undertake the Treatment.

Art Caplan thinks the treatment is morally wrong.

Stephen Kuusisto also finds much wrong with the treatment.

Penny Richards, who lives some relatively similar experiences with her own child, also disagrees with the Treatment.

Rachel is shocked.

Thoughts?

UPDATE 1/16: Ben & Bennie Waddell have authored several posts expressing support for Ashley's parents' decisions.  You can also check out some of the discussion regarding this subject in the comments here and here. 

Comments

[R. Alex]

The very thought of it makes me want to squirm and I fear for precedent allowing something like this might set. It's extremely difficult to imagine myself in the situation of the parents, but it seems to me something like this solution requires a bigger problem. The problem being what this will "fix", not the general state of the child, which is certainly unfortunate.

[Daniel Goldberg]

Hey Alex,

Thanks for visiting (and commenting). I agree on the "squirm" factor present here, though I'm wary of moral intuitionism as the criterion of morality. I think intuitions are an important ethical marker, but lots of things that "feel" wrong or right to us may not continue to earn such desert upon reflection or hindsight, if nothing else.

Also, I think it's interesting that you use the word "fix" inasmuch as I think the "fix-it" mentality prevalent in the culture of Western allopathic medicine has caused a great deal of mischief, especially for disabled people (Not saying you meant this at all, only that it's interesting you chose the word "fix").

[Connie]

Steve (Kuusisto) wrote a post that I just uploaded on his behalf called "TV Land". In it he talks about the recent coverage on CNN by both Paula Zahn and Larry King. Your blog post discussing the "social model" of disability came in very useful. We've linked to it. Thank you.

Oh, and I've also added you to our Blogroll. Welcome to the Planet of the Blind!

[Daniel Goldberg]

Hey Connie,

Thanks so much for the links and the kind words. I've been meaning to create a Disability blogroll (including Planet of the Blind). I'll let you know when it's up.

[Nina]

As a parent of a child with severe/profound developmental delays, cognitively and physically, much identical to Ashley's, I can completely understand the reasoning behind the decision that was made by Ashley's parents. It is more than just not having or finding resources for the parents or family, it really is about the safety and quality of life for the child. As my son gets older and bigger, he will not be able to enjoy the simple things that he can do now, as in rolling over or moving about as he does now. Already he expresses frustration as he tries to turn over at times, but cannot because now his body weight is more than he can control due to his low muscle tone. Every child with special needs is very unique and every family as well... you really cannot "empathize" if you are not the parent of Ashley or even my son. I do not think that this treatment should be an option for every child or every family, but I think that it should be an option for some. Due to possible misuse or abuse of this, there needs to be some sort of screening. There should be guidelines or qualifying criteria for applying for this type of treatment. I think that many are afraid of opening Pandora's Box, but, I think that we should not criticize the parents for wanting to personally take care of their child and enjoy her life instead of leaving her to the system or putting her in an institution. I think that it is great that there are so many child advocates, but please do not narrow your scope of vision by just looking at the child, but look broader, looking at the whole picture, the quality of life as a whole for the child and family.