I'm reading the "Investigative Report Regarding the Ashley Treatment," officially released today by Disability Rights Washington (the new name of Washington Protection and Advocacy System, WPAS, as of June 1). It's not long, it's readable, and it's fascinating. The major finding is that Seattle Children's Hospital violated state law by neglecting to get a court order before performing a sterilization on a person deemed incompetent on the basis of cognitive disability.
Why didn't they get a court order? The hospital cites communication failures. Seems to me that the money quote is this one, on p. 2 of the executive summary:
"...and the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interest." No court order, no disinterested third party representing the child.
But don't the parents represent the child? Not always. Also on p. 2: "Courts have... limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interest of the patient." So even the non-sterilization aspects of the treatment in question, by their nature, probably should have been subject to outside evaluation. The surgery was also well outside existing American Academy of Pediatrics guidelines on the treatment of complications related to menstruation in minor girls (p. 11, fn 37).
The court order in sterilization cases is not just a formality--this is not a case where somebody forgot to sign some paperwork. In pursuit of a court order, the family would have had to demonstrate (among other factors) that the child was likely to engage in sexual activity, that they had tried other less drastic means of preventing conception, and that "the proposed method of sterilization entails the least invasion of the body of the individual."
Children's Hospital has acknowledged that they violated the law in this case, and has promised to establish protective and educational policies to avoid such lapses in the future. They've also agreed to notify Disability Rights Washington (a federally-mandated watchdog organization) whenever requests for similar procedures or growth-limiting drug regimens are under consideration. And, this is a big one: they say they'll include a disability rights advocate on the ethics committee in the future.
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In case you didn't see it, Gimp Parade posted link/quote from the response by Ashley's parents:
http://thegimpparade.blogspot.com/2007/05/hospital-violated-state-law-performing.html
The total lack of awareness of history -- or even of anything past what they personally want -- is really astounding.
I agree, Moggy. Thanks for adding this link.
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