Hospital admits breaking law in sterilizing girl


karrie
#1
Hospital admits breaking law in sterilizing girl whose growth deliberately stunted





SEATTLE (AP) - A hospital has acknowledged breaking state law when doctors performed a hysterectomy on a severely developmentally disabled girl whose growth was medically stunted to make caring for her easier for her parents.

Sterilization surgeries must not be performed on children without a court order, Children's Hospital and Regional Medical Center acknowledged Tuesday after an investigation by the state Protection and Advocacy System.

The hospital also agreed to appoint "someone with a disability rights perspective" to its ethics committee.

The girl, identified only as Ashley, underwent surgery in 2004, when she was six, to remove her uterus and breast tissue and was given growth-stunting hormones.

The hospital's ethics committee supported the treatment but noted that court review would be required. A lawyer for the girl's parents disagreed, saying the state law did not apply in Ashley's case, and the hospital performed the procedures without court permission.

"We deeply regret that a court order was not obtained and that an independent third party was not sought to represent Ashley," said Dr. David Fisher, the hospital's medical director.

"We take full responsibility for the miscommunication between the ethics committee and the treating physicians," he said.

"We have introduced new safeguards so that procedures requiring a court order will have one obtained before they begin."

Ashley cannot sit up, walk or speak. Her parents say keeping her small will allow them to continue caring for her at home even when she is an adult.

Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.

Some critics call the parents' actions perverse and akin to eugenics.

On their blog Tuesday, Ashley's parents praised the vigilance of the advocacy group that investigated the case. But they also said they hoped requiring court orders in such cases would not create obstacles for parents seeking the best care for disabled children.
 
eh1eh
#2
People should mind their own business. They don't have to care for the girl.
 
folcar
#3
Some critics call the parents' actions perverse and akin to eugenics.

I love these critics as they tend to not know the damage they can cause by such thoughtless social politically correctness. My family is experienced with this issue and the female member who is developmentally challeged got pregnant twice. The courts prevented the family from having her sterilized, as it was to be her choice. Instead they allowed a person with no ability whatsoever to raise children, and or care for them. Who mentally in some aspects of her thought process is not above a grade 2 level, cannot hold a job or even understand the concept of work to have kids. I am a firm believer in respect and complete care for those suffering from such disabilities, but the laws that apply to people of sound mind and body should not be applicable to people in these situations. There rights need to be protected, there bodies and lives respected and treated with dignity. However it must be understood that they are not normal in every sense of the word. Anyone with experience will tell you the term special needs is an understatement.
 
karrie
#4
Quote: Originally Posted by eh1eh View Post

People should mind their own business. They don't have to care for the girl.

I agree, to an extent.

Both Canada and the US have a bad history for sterilizing people who did not deserve it. Those laws are in place for a reason. The hospital shouldn't have circumvented them, and must admit it to prevent a similar, more serious abuse in the future. The article isn't saying they shouldn't have done the procedure, just that they didn't go about the legalities of it properly.
 
eh1eh
#5
Quote: Originally Posted by karrie View Post

I agree, to an extent.

Both Canada and the US have a bad history for sterilizing people who did not deserve it. Those laws are in place for a reason. The hospital shouldn't have circumvented them, and must admit it to prevent a similar, more serious abuse in the future. The article isn't saying they shouldn't have done the procedure, just that they didn't go about the legalities of it properly.


Yes, indeed, and folcar brings a perspective that speaks to that. Certainly a technicality in the law shouldn't stand in the way of what 'should' be done.
 
karrie
#6
Quote: Originally Posted by eh1eh View Post

Yes, indeed, and folcar brings a perspective that speaks to that. Certainly a technicality in the law shouldn't stand in the way of what 'should' be done.

Folcar's perspective, to be totally frank, is what led to the mass sterilizations of people that courts felt 'shouldn't' have kids. That can be a pretty broad range of people, and it's why the laws are there. They can be (and have been) applied much too broadly, and rob people of their basic human rights to reproductive freedom.

It's generally considered that if someone is so mentally handicapped that they can't care for themselves or a child, they should be put on birth control by their caregivers. If they can take well enough care of themselves to live in a situation where birth control can't be given to them, then they are thought to be in charge of their faculties enough to manage their own right to reproduction. And if a baby results, social services can evaluate and place that child in care if needed. Sterilization is a route that has proven much too easy to abuse in the past. And in the case of this young girl, sterilization isn't the desired result... stunted growth is.
 
tracy
#7
I agree that the hospital should always obey the laws.

I also think those who would judge these parents and say they are unethical should just mind their own business. Stunting her growth may very well be in her best interests.
 
#juan
#8
I don't have a handle on just how retarded this girl is. If the girl is stuck at the mentality of a two year old, the medical procedure was no doubt a good idea. In cases like this euthanasia might be indicated. but long before she was six years old.
 
Curiosity
#9
There is an expected side effect of weight gain in the developmentally disabled unless they have a problem with ingestion of food and retention...which may keep them from getting heavy.

Many people in this disabled condition put weight on far more than they would if they had an active lifestyle and if the parents believe she would be cared for in a more positive way if she were of smaller stature - I think they are the ones who should have the final say.

Additionally - some developmentally disabled females are raped - and have no way of knowing the consequences of what was done to them in violation of their right to protection. The medical team obviously are using prevention methods and I would totally agree she should not have to carry a child unless everyone thinks an abortion after being impregnated would be a 'better way to go for her' or carrying a baby to full term.

It has nothing to do with eugenics...her parents made the final decisions, along with the doctors who obviously felt it would introduce a possiblity of a better caregiving lifestyle....if the doctors performed it under sanctioned medical facilities, it was an agreed to procedure.

I am pleased to see some medics paying attention to the disabled in our community. Generally they are shuffled into a corner in some 'community meeting place' for a few hours a day to give respite to their caregivers and they have little socialization.... unless they are higher functioning adults. Because of the hysterectomy I am inclined to believe this girl is of lesser capabilities.

Edit: I just read she is severely mentally disabled. Then the parents and the medical team have my vote. In so doing I hope they are able to have the laws amended in cases such as this one.
 
folcar
#10
I agree mass sterilization should not even be considered, but the option should be available to families with children who are severely diasabled. One issue here people tend to due is they lump the whole group of developmentally challenged folks into one group. When there are such a vast array of diseases and conditions that effect them. Some are just slow, others are so fargone that the question remains is anybody really home. In my families case the person has no concept of raising children, money, work, and a whole slew of other areas that are just incomprehendable. But several other areas are and sex is something that was discovered and is liked, as it is with most of us. However safe sex and the consequences of unprotected sex are things that are not in that area of understanding. It is a huge issue that has been extremely hotly debated over the years and will continue to be so over what to do with developmentally challeged folks who are fully functional physically but the upostairs is a mess. The burden raising and caring for them is already huge, i look at this option as a worry that can be dealt with and eliminated. But whatever is done as i stated previously must be with respect and dignity.
 
Curiosity
#11
Just the fact the parents are able to care for her as they age themselves by maintaining her small stature as she is immobile, seems a much better decision than what might have to happen if she grew to full adult size and had to be warehoused. The decisions was a good one .... the fact the 'ethics' people were not even on staff at the hospital was the hospital's oversight, not the medical team nor the parents.
 
karrie
#12
Quote: Originally Posted by Curiosity View Post


Edit: I just read she is severely mentally disabled. Then the parents and the medical team have my vote. In so doing I hope they are able to have the laws amended in cases such as this one.

I strongly disagree with the laws needing to be amended. As they stand, parents and medical practitioners are able to have these procedures carried out, once an independent third party reviews to ensure that the patient is not being forgotten or opressed by those decisions. I think that's a great system, and one that should be preserved. I don't think this girls' rights were violated, and I think the procedure was the best thing for her... but it still should have gone through proper channels.
 
karrie
#13
Quote: Originally Posted by #juan View Post

I don't have a handle on just how retarded this girl is. If the girl is stuck at the mentality of a two year old, the medical procedure was no doubt a good idea. In cases like this euthanasia might be indicated. but long before she was six years old.

Wow, that's a whole other debate. lol.

It's really hard with developmental issues in babies, to tell what medical treatment and therapy will be able to do for them, as far as 'repairing' them to a point.

As for this girl, I don't think there IS a mental age apparent, since her retardation is so severe.
 
Curiosity
#14
Quote: Originally Posted by karrie View Post

I strongly disagree with the laws needing to be amended. As they stand, parents and medical practitioners are able to have these procedures carried out, once an independent third party reviews to ensure that the patient is not being forgotten or opressed by those decisions. I think that's a great system, and one that should be preserved. I don't think this girls' rights were violated, and I think the procedure was the best thing for her... but it still should have gone through proper channels.

Karrie

That is exactly what I was writing. The law should be amended to let the medical staff make the decision regarding severely retarded adults by a simple recommendation to the ethics committee. The court should not have to be involved in this type of case - placing an even greater financial burden on the family. In mild to moderate retardation, there always should be a third party but in this case - it seemed a procedure which could have been handled by written recommendations through channels without any court proceedings.

I am not suggesting the third party be circumvented at all. There are scales of retardation and in this case, it is a matter of legalities taking an unnecessary precedence over what is strictly a medical determination.

Ethics committees could not possibly come up with a more satisfactory solution than the medical team and the parents did.

These committees are great watchdogs when parents are non-caring or medical staff are obstructive, but it seemed all the parties were working here in the best interest of the child.

I say bless the parents in this most heartbreaking situation.
 
Niflmir
#15
Quote: Originally Posted by Curiosity View Post

Karrie

That is exactly what I was writing. The law should be amended to let the medical staff make the decision regarding severely retarded adults by a simple recommendation to the ethics committee. The court should not have to be involved in this type of case - placing an even greater financial burden on the family. In mild to moderate retardation, there always should be a third party but in this case - it seemed a procedure which could have been handled by written recommendations through channels without any court proceedings.

I am not suggesting the third party be circumvented at all. There are scales of retardation and in this case, it is a matter of legalities taking an unnecessary precedence over what is strictly a medical determination.

Ethics committees could not possibly come up with a more satisfactory solution than the medical team and the parents did.

These committees are great watchdogs when parents are non-caring or medical staff are obstructive, but it seemed all the parties were working here in the best interest of the child.

I say bless the parents in this most heartbreaking situation.

I understand why they did this, although I tend to side more with #Juan's way of thinking, that euthanasia might have been more humane. As to the ability of the hospital ethics committee to skirt the legal system, I have no problem with this, but I would like to emphasize how important it would be for the staff of the ethics committee to be made up of trained legal professionals. They should basically be specialised judges so that we avoid the sterilization nightmares that Karrie mentioned.
 
Curiosity
#16
Niflmir

It's a tough call and I think each case should be weight on its individual merits. I understand the girl lis now eight - so the parents had six years of falling in love with the child before they made that decision.

I don't know the degree of retardation but no doubt she responds to some stimuli and that in itself gives the parents the satisfaction of knowing they are 'caring' for her as best they can.

The difficulty with many cases like this is the child outlives the parents and then what becomes of them? Perhaps that is the next step the parents must take - in ensuring she will have lifelong care.

Sterilization may have been a radical decision, even retardation of growth, but it sounds to me like the parents have done some homework and taken advice in order to give her the best quality of life that she can be expected to have.

None of us know unless we have walked in their shoes..... Again - that they have chosen to give her life and care for her..... I admire them whether. Euthanasia is a drastic option and who could make that decision, and who could live with it.

What I find odd that it is now making its way into the media - what happened to the rights of privacy for this family - medical mistake or not???
 

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