The ‘Ashley Treatment’

Biomedical Ethics has always intrigued me.  This groundbreaking case has shocked and amazed me.  When I mentioned it to one of my professors, he exclaimed: “THIS HAPPENED IN AMERICA?” 

Ashley is a 9 year old girl with static encephalopathy, an idiopathic condition that renders her permananently disabled.  Her doctors removed her breasts, uterus, and ovaries at the request of her parents.  They also used high-dose estrogen to force her growth plates to fuse and stop the growth of long bones.

Many people are outraged, accusing the parents of orchestrating the treatment to maintain a more “portable and manageable” child. 

Her parents claim that the treatment was done to decrease Ashley’s discomfort by eliminating menstrual cramps and bedsores.  They also claim that there is a family history of breast cancer, but there is no mention of BRCA testing.

Here’s a link to the story on CNN.

Here’s a link to the family’s blog.

What do you think?  Please comment below…

3 thoughts on “The ‘Ashley Treatment’”

  1. Initial reactions of surprise aside, it can be difficult – at best- to judge someone else in a situation like this. It certainly sounds like these parents are not only commited and dedicated, but who truly have their daughter’s best interests at heart. Having to care for someone who requires complete care 24/7 is no mean feat- and it sounds like the family is doing this pretty much all on their own. It would be ‘easier’ to have her admitted to a group home, but apparently these parents feel they can offer the best care for their daughter- kudos to them. To know that this burden is only going to become more unmanageable (i.e., larger) as they grow older and become less able to handle it is cause for real concern on their part.

    The treatment certainly is extreme. But it seems it was done with the patient’s best interests at heart. If this were a case where the surgery / treatment had been done on an institutionalized patient simply bacause the staff thought it would be easier for them I would have much greater concerns.

    The fact that the family presented this case to the staff and ethics committee at Children’s Hospital (something they did not have to do) speaks to their efforts at getting all the facts and feedback they could.
    I can hardly see myself advocating such treatment to anyone. But neither can I see myself critizing these parents for their actions. Perhaps we would be a much better society overall if all parents were as committed as Ashley’s.

  2. where’s the doctor who performed the surgery? he should be banned from medicine–this is absolutely ridiculous.

  3. Initial outrage aside, I think this is perfectly reasonable. Here we are dealing with a child under the age of 16, who in addition has significant learning disabilities and is unlikely to have capacity to consent through some combination of an inability to understand the facts, remember them long enough to make a decision, weigh them up and/or communicate her decision.

    As such, her parents can consent to treatment on her behalf, and it is up to doctors to decide what treatment is ‘in her best interests’. As I remember the case, this girl has little if any awareness and understanding of what goes on around her. As such, is it truly in her best interests to grow larger and possibly develop sores and/or need care in an institution as her parents grow unable to do so? Is it truly in her best interests to have a period once a month, possibly with associated pain?

    Against the benefits of the operation have to be weighed the downsides – operational risks (relatively low), increased risks of endometrial cancer if not all of her uterus is removed (avoidable by careful surgical technique) and the inability to mature into an adult and have sexual relationships (apparently no more reduced by this surgery than it would otherwise have been)

    Interestingly, there has been a recent case here in the UK where a man with learning disabilities has been sterilised to prevent him conceiving another child, as it was felt that the distress it caused him made this procedure to also be in his best interests. He was felt able to consent to sex, but unable to appreciate its consequences

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