Drastic treatment of profoundly disabled child - who decides?
Moms View Message Board: The Kitchen Table (Debating Board): Drastic treatment of profoundly disabled child - who decides?
See this article in the Seattle Times: \newurl}http://seattletimes.nwsource.com/html/localnews/2003699286_childrens09m.html,Ashley}
Ashley is a profoundly retarded child, who, according to doctors and her parents, will never have more than 3-month old intelligence. When she was 6, her parents had surgeries and other treatments performed, including a hysterectomy and treatments that will limit her size growth and physical maturation. The parents said it was for her "comfort" and in her best interests.
The doctors who performed the hysterectomy and the hospital now agree that they should not have performed the procedures without a court order after the appointment of an independent child advocate.
I don't know how I feel about this specific case with this specific child and her specific disabilities. Objectively, I think the parents and doctors were wrong, but subjectively, I don't have to deal with taking care of Ashley, as her parents do - so I don't know where I come down on this.
I do know that "bad cases make bad law", that is, cases with extreme circumstances which go through the appellate route often result in bad "general" laws based on a case with very unusual and extreme circumstances. No lawsuit has been filed in this instance that I know of, but it is always possible.
I don't know how I feel about this.
I can understand why this family wanted it done, I too worry about what will happen now.
Where do you draw the line.
It reminds me of sterilization of the mentally and physically handicapped. Who gets to decide.
I feel for this family.
Ashley
I agree that extreme cases probably don't make good law. What works good for one case probably wouldn't work good for another case.
The hospital did indeed make a serious mistake by not covering their legal bases and going forward with the court review. However, the hospital probably knew that the likelihood that the court would grant them permission to sterilize Ashley was slim to none, so they made up some phony reason to proceed at the risk of violating ethics laws.
The doctor said, "Ethics committees are not for people with political agendas." I fail to see how this issue, at this particular point, is political. I see it as ethical and moral. It becomes corrupt when it is turned into a political agenda.
I am concerned about drawing the line as well. This is scary in that the hospital (or the doctors) grants itself the omnipotency to decide what is best for the ones who do not have the capacity to understand what is happening. This is indeed the slippery slope. Where does the ethics line stand? What happens to the severely demented elderly? Alzheimer's patients? The mentally ill? The comatose? How do we decide how to deal with the human beings who cannot contribute to society, as Ashley allegedly never will?
For these situations, we would have to allow judges to review past decisions or to set precedence based on their best interpretation of existing laws. I understand that not every case can be decided by existing laws, and we cannot make a new law every time a challenging case comes up. However, without a standard to guide us in our decision making processes, chaos will result in our society. Why even bother with ethics if the standard by which to apply decisions is altered with every new challenge or is ignored altogether?
We are not given the circumstances leading up to her brain damage, and we do not know how many doctors have evaluated her. However, the parents' reasoning suggests that simply because something is difficult that it is not worth enduring.
This was a hot topic on the "parenting kids with special needs" boards I'm on a few months ago, and people were strong in their beliefs on both sides.
I have been blessed to parent 4 children who have/had the same kinds of needs as Ashley, and I can't imagine putting any of them through unnecessary surgery. Sonja died when she was 21, and she had just started developing. She never had her period, but even if she did have it, it wouldn't have made any difference as far as care goes. She wore diapers, so nothing would have changed. I feel the same way about Chrissy, who will be 13 next week. We'll deal with it.
Emily is 12, has started developing, and I'm sure she'll have her period within the year. She gets moody, and I think she gets crampy. During those times I give her ibuprofen, just like I would do for myself. Emily can walk, but she still wears diapers. Again, care won't really change. Emily is an average size for a 12 year old.
The parents want to keep Ashley looking young to make things easier on her. I do everything I can to make my girls look age appropriate. Chrissy might wear a size 8, but I want her to look 13. She shouldn't look 5 all of her life just because she's tiny.
Anyhow, that's just me, and everyone in this position will have their own opinion. Mine is that everyone should live their life with dignity, and with respect from those around them.
Could the parents have been worried about what might happen to her when they are no longer able to care for her, or when they have passed on and she is in a long term care facility?
The children Marcia is "blessed" with are also very blessed to be in a loving, safe environment where their welfare is paramount.
What if Ashley or another profoundly disabled girl were placed in a facility/hospital where the care is lax? What if she were sexually assaulted? Then there is the possibility of a pregnancy to deal with ...
Not condoning or condemning. Just another point to consider.
Ame
|
Members
