Sterilizing disabled girl, ethics concerns

[Texsox]

http://www.cnn.com/2007/HEALTH/05/08/ashle...ling/index.html

 

• Sterilization of profoundly disabled Washington girl violated law, investigation finds

• "Ashley's treatment" removed girl's uterus, breast buds, at parents' request

• Treatment has raised ethical questions, angered disability advocacy groups

[NorthSideSox72]

http://www.cnn.com/2007/HEALTH/05/08/ashle...ling/index.html

 

• Sterilization of profoundly disabled Washington girl violated law, investigation finds

• "Ashley's treatment" removed girl's uterus, breast buds, at parents' request

• Treatment has raised ethical questions, angered disability advocacy groups

I don't like it. Makes my skin crawl, in fact. I am sure the parents' lives must be very, very trying, having this person in their care. But that should never justify the actions they took.

[Texsox]

Their child will never be able to make decisions for herself. The parents made a decision that would improve her quality of life. She will never know the difference. I have a difficult time criticizing and seconde guessing her parents or the Doctors who performed the operation. It was probably the kindest thing they could have done for her.

 

Yet, I am uncomfortable with this and can not figure out why.

[NorthSideSox72]

Their child will never be able to make decisions for herself. The parents made a decision that would improve her quality of life. She will never know the difference. I have a difficult time criticizing and seconde guessing her parents or the Doctors who performed the operation. It was probably the kindest thing they could have done for her.

 

Yet, I am uncomfortable with this and can not figure out why.

I wasn't sure why either at first, but I'm pretty sure now that I hate the idea of a person being turned into a doll. That's what happened, as far as I can tell. This makes the parents' lives easier. But at the cost of robbing someone of their identity in so many crucial ways. I just can't see it being justified.

 

But this is obviously a very personal choice and decision, and luckily, this sort of thing is obviously very rare. I can see the other side of this, and the pain the parents would go through. Tough place to be.

[Texsox]

I was considering quality of life issues and it seems her quality of life is better off now than without the surgery. Looking at history, and possibly not specific to this case. We have developed the medical technology to keep people alive that may not have survived before. We accept that intervention and generally believe it is a good idea. Now when we want to alter the life that medicine saved with more medical intervention, we balk.

 

You are right, the doll reference is what creeps me out.

[FlaSoxxJim]

This is simultaneously a textbook slippery slope sort of case and also a situation where our ever-improving ability to perform medical 'miracles' greatly outpaces our ability to deal with the bioethical dilemmas that are created.

 

Mired in the bioethecist's impasse, I am unable to attain any clarity regarding the parents' decision. But this is very much like the case a few months ago where a similarly profoundly disabled boy was given a procedure that would permanently stunt his growth so that he would remain small enough that the parents would be able to always pick up and transfer the kid. You can understand the parents' rationale in that situation but at the same time, yeearrgh that is an extreme liberty to take with another human being.

 

And the problem is that there are limitless conceivable combinations of profound disability, parental commitment, parental ability to provide care, monetary considerations, institutional care potential, legal issues, etc., with each of these factors falling out along its own continuum.

 

In the end, I think we can only deal with these from a legal standpoint because we are not capable of universally making the necessary ethical determinations. If someone is found to have broken the law in applying such "treatments" on those in their care, then the matter should be dealt with appropriately within the legal setting. And in doing so, if it can be determined that unique extenuating circumstances caused a law to be broken when a guardian was truly doing what he/she thought was in the best interest of their child, then that should positively affect prosecution and sentencing outcomes for the guardian.

[jheath160]

I have a daughter with Down's Syndrome, and I can, in some ways, understand what these parents have done. While I don't agree with what they have done completely, I can understand why they would not want her to ever be able to conceive a child. After all, it would most likely be born with a disability (most likely more severe), and who would provide care for the child?

 

I have not had to look into any of this for my own daughter yet, but have considered having a tubal ligation or similar procedure performed prior to her 18th birthday to prevent pregnancy for her.

 

It's not an easy decision, but until you've been a parent to a child with a disability, you may not fully understand their actions.

[FlaSoxxJim]

It's not an easy decision, but until you've been a parent to a child with a disability, you may not fully understand their actions.

 

I agree with that. And I think parents such as yourself are incredible in the dedication and love shown in caring for special needs family members. You don't know what you're made of until you are thrust into that situation I guess, but the lifetime of strength and compassion necessary to care for, protect and raise severely disabled children is an inspiring, awesome thing and I only hope it's something I am capable of.

 

Welcome to SoxTalk, btw.

Edited May 10, 2007 by FlaSoxxJim

[jheath160]

Welcome to SoxTalk, btw.

 

Thanks for the warm welcome.