Still thinking on Ashley
I'm crossposting this comment of mine from a discussion I'm participating in elsewhere:
One thing I find so frustrating about the widespread discussion of the "Ashley Treatment" is the complete unwillingness by so many people to assess the parental decisions. Understandably, people are sympathetic to their situation and are rightly giving them some benefit of the doubt. But the decision-making process between medical professionals and parents of disabled kids is always really complex, always done on a steep learning curve, and always involves pressure from those medical experts that parents do not always have the experience to rationally assess. It's relevant that the parents' website expressly states that they did not have any doubts about this decision and want very much to offer and push this treatment for other children. That's an incredibly worrisome degree of certainty and salesmanship about a complex and murky ethical decision, if you ask me.
I could name a few less extreme but questionable ethical medical practices I was subject to as a child with a physical condition that intrigued the medical community my parents consulted beginning at the time of my birth. At the age of nine (same physical age as Ashley) I was examined in a medical boardroom by about 20 medical professionals who saw nothing problematic with me wearing only panties and walking around the boardroom table so that individuals could touch my muscles and discuss what they all saw in my body. There was technical debate and also discussions I completely understood about this or that failure of my muscles when I was asked to perform. A joke or two was made, probably as attempts to lighten the atmosphere, but the laughter is a distinct part of the unhappy memory that has stuck with me these past 30 years. A photographer took pictures that I was sure ended up on the newsmagazine show 20/20 a couple years later as falsely-labeled examples of anorexia. I doubt that was true, but it's always haunted me. I was a bright nine-year-old, but I didn't consent to those pictures of me in only my panties and I don't know who has seen them or where they ended up.
My parents can easily see now -- and even did in the confusion of that day -- that it was an inappropriate and harmful venue in which to give a child medical care, but they were desperate and hopeful and didn't know if the consequences of this ordeal would lead to some cure or treatment that, on balance, would make it worthwhile. They gritted their teeth and stuck it out, hoping for something useful to come of it. Lots of medical decisions are like that. It does not mean the parents should not be judged or culpable for what is decided. The ends do not jusitfy the means, especially when the ends are so completely unknown. And it seems telling and worrisome that Ashley's parents lack any self-reflective doubt about a clearly uncertain situation. It's dishonest about the dynamics, at the very least.
6 comments:
Yes! You hit it right on.
As a parent, healthcare decisions (educational decisions, too) can be agonizingly difficult, and it's hard to know if you've made a good decision at the time (and perhaps, ever, in some situations). Over the years, we've moved with love, prayer, hope, research, discussion and great caution, and still have made mistakes. It's humbling, and I hope my children will forgive me for the mistakes that I make.
Although they obviously don't see it this way, it's hard for me to not to feel self-serving arrogance in Ashley's parents' choice.
Janet
Yeah, we were just talking about this tonight--our son has had a dozen surgeries, and not once has anyone in a position of oversight or guidance come and talked to us about the decisionmaking that went into those surgeries. I mean, they've been fairly routine procedures, we think we've made good decisions in our son's best interests, and so far so good on the outcomes, but... what *would* trigger a review of some sort? At what point would he be assigned some kind of advocate? I have no idea. Kinda frightening, really.
Penny, I wish this case would bring about a wide discussion about ethic committees and how they operate, what inabilities they might have to judge adequately as well as what special kinds of expertise. Also, I have wondered before what sort of institutional biases ethics comittees are particularly vulnerable to.
Let's quit beating around the bush on this issue and call it what it is, and that's child abuse.
The parents deserve NO sympathy whatsoever. They need to be tracked down and prosecuted.
Ditto for the doctors who performed this atrocity on Ashley.
Aside from the fact that I am not sure people who consulted a medical ethics board before progressing CAN be prosecuted, I don't believe they are undeserving of all sympathy. It's not like there's a handbook for what they should do.
I have strong opinions about this too, but they do not extend to an unequivocable belief that these parents deserve punishment.
I have to say that I strongly disagree with the comment that the parents should be prosecuted.
Blue's right - there is no real instruction manual for decisions like these, and they did their due diligence. I once worked for a children's hospital research unit that often submitted proposals to the hospital ethics committee. Although it's impossible to protect completely against bias, staff try to guard against it as much as possible. That's why there are representatives from many stakeholders, such as doctors, nurses, psychologists, parents, etc. The hospital I worked at had a parent rep on their ethics committee.
This was no rubber-stamp decision. If you examine what child abuse is, this decision bears no real resemblance: there is no willful intent to harm in this act, professionals (her doctors) and experts (the ethics board) were consulted, and even though the general public didn't know about it, this has been a transparent process.
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