surgery raises ethical questions re retarded girl

Here's a question.



What about circumcision? I understand that it's a procedure of a vastly different scale, but it, too, is the removal of a body part from someone who cannot offer consent by a doctor (or rabbi -- the moyl doesn't have to be an MD, does he?) at the behest of the parents. Does the slippery slope argument apply here, as well?

Circumcision is a straw man debate, not the topic at hand. Circumcision is more of a cultural thing, along the lines of people who pierce babies in the name of beauty. To me, both make me shudder. I would not do either because I don't believe in inflicting unnecessary pain on babies. But that's a whole 'nother frying pan to jump into/out of. Patiodog, the debate is whether it is morally ethical to keep a child little and lightweight if they are mentally impaired and would at best be inconvenienced by their maturing bodies and the functions of those bodies.

I wonder if these folks are basically caring for this child solo - and paying for all the extras with their own dollars, to boot.

Quote:

Circumcision is a straw man debate, not the topic at hand. Circumcision is more of a cultural thing, along the lines of people who pierce babies in the name of beauty. To me, both make me shudder. I would not do either because I don't believe in inflicting unnecessary pain on babies. But that's a whole 'nother frying pan to jump into/out of. Patiodog, the debate is whether it is morally ethical to keep a child little and lightweight if they are mentally impaired and would at best be inconvenienced by their maturing bodies and the functions of those bodies.

Obviously, somebody came to a different ethical conclusion on this one than you did (at least three to four people -- parents, ethicist, perhaps surgeon). You framed your answer in terms of it being a slippery-slope question, so I looked for your (or others') opinions on a matter on a much less steep portion of, for my money, the same slope.

But what it comes down to, in my eyes, is - if parents are making choices like this (it had to be something terribly difficult to do, excrusiating to weigh all the negs and positives of this choice!) - then, how can we work and improve these situations so that parents don't feel like they must make decisions like this.

Unlike what most people thought, the decision to pursue the "Ashley Treatment" was not a difficult one.

Ashley's Mom came upon the idea of accelerating her already precocious puberty to minimize her adult height and weight.

It was obvious to us that we could significantly elevate Ashley's adult quality of life by pursuing the following three goals:

1- Limiting final height using high-dose estrogen therapy.

2- Avoiding menstruation and cramps by removing the uterus (hysterectomy).

3- Limiting growth of the breasts by removing the early breast buds.

The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley's appendix acts up, she would not be able to communicate the resulting pain. An inflamed appendix could rupture before we would know what was going on, causing significant complication.

Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximizing her quality of life. The decision to move forward with the "Ashley Treatment" was not a difficult one for us as most seem to think. It was obvious that a reduction in Ashley's height (and therefore weight), elimination of the menstrual cycle, and avoidance of large breasts would bring significant benefits to her health and comfort.

To put our decision process in perspective, it is not uncommon for parents with children who have cancer or birth defects to pursue significantly more intrusive treatment (chemo or radiation therapy) or more involved surgery (limb amputations or face reconstruction), than what the "Ashley Treatment" entails. We strongly believe that the benefits that we're seeking for Ashley are not any less worthy than these other unfortunate situations entail.

patiodog wrote:

Quote:

Circumcision is a straw man debate, not the topic at hand. Circumcision is more of a cultural thing, along the lines of people who pierce babies in the name of beauty. To me, both make me shudder. I would not do either because I don't believe in inflicting unnecessary pain on babies. But that's a whole 'nother frying pan to jump into/out of. Patiodog, the debate is whether it is morally ethical to keep a child little and lightweight if they are mentally impaired and would at best be inconvenienced by their maturing bodies and the functions of those bodies.

Obviously, somebody came to a different ethical conclusion on this one than you did (at least three to four people -- parents, ethicist, perhaps surgeon). You framed your answer in terms of it being a slippery-slope question, so I looked for your (or others') opinions on a matter on a much less steep portion of, for my money, the same slope.

The reason circumcision is done to improve a body's function? I thought it was originally done to set a people apart from the heathens...

Isn't a slippery slope where you rationalize an action or a behavior as harmless in one situation, then using that case to justify increasingly unsound behaviors as rational? The Ashley treatment is used first here, for Ashley, then for other children severely handicapped in similar ways, then perhaps it becomes ok to use it for severely handicapped people in other situations, then less handicapped people faced with going into carehome facilities to make them easier to handle, and that would be a slippery slope.

Let's expose all handicapped children at birth. There's a dead end guaranteed to be without a slippery slope.

Or we could continue to treat each child--each "case" if you will--with loving, individual consideration.

Legislative bodies are not licensed to practice medicine.

And perhaps, in her case, such extremes do improve her quality of life, but trying to get worldwide acceptance for such an extreme solution marches us one step closer toward a place where body mutilation of people without voices is an acceptable practice.

The most common justificationsI've heard for circumcision among non-Jews in the U.S. are hygiene and, basically, habit (as in, "well, that's what his dad's looked like"). I saw it as a much more benign (but also much more petty) spot on the same slope -- "Let's take the hood off of Junior's dingle so we don't have to clean underneath it."

Anyway, not a big deal, just trying to find an analogy that's less loaded. It's how I've seen ethicists work in leading discussions. (Yes, I've been there. They avoid topics like this one because they're, well, hard.)

All the charities for the disabled or developmentally disabled seem to be about children. But who cares about them when they're 30 years old and still pissing their pants?

princesspupule wrote:

And perhaps, in her case, such extremes do improve her quality of life, but trying to get worldwide acceptance for such an extreme solution marches us one step closer toward a place where body mutilation of people without voices is an acceptable practice.

The part I have emphasized-- "trying to get worldwide acceptance"-- is that really what the parents are doing? I haven't gotten the impression they are doing anything more than trying to make their position clear in an attempt to lessen the firestorm this is likely to generate (a doomed attempt, likely).

If I were them, I'd be dreading that this would turn into a Terri Schiavo-like circus, and I'd be trying to head that kind of controversy off as best I could. I think that's the point of their blog, not to push for world-wide acceptance, just to get everybody to hopefully just back off.

we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden "Pillow Angels"; second, to address some misconceptions about the treatment and our motives for undertaking it.

I haven't gotten the impression they are doing anything more than trying to make their position clear in an attempt to lessen the firestorm this is likely to generate (a doomed attempt, likely).

Then why name the treatment after their daughter?

Why suggest other families w/similarly handicapped children follow a procedure conceived by another mother rather than the handicapped child's own doctors?

Why discuss it on a blog at all?