The WPAS Report: A court order is not just a formality

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.

Unequivocal

John Hockenberry's got a really strong essay on the "Ashley" controversy, just posted at his blog (thanks to Ruth at Wheelie Catholic for the tip). He's not hemming and hawing here....

I am not going to argue that Ashley’s parents are immoral or unjustified in what they did. I will argue that they are no longer Ashley’s parents. Regardless of their love and affection for their daughter their decision to remove her breasts and uterus and maintain her in a state of pre-puberty is not a parental decision. It is more the kind of control one might enforce on a pet to manage the relationship. It is something a farmer managing the productivity of his or her operation would naturally enforce on livestock. This would be done humanely, morally, and no-doubt with considerable tender affection and love for the subjects. There would be no outcry and no controversy, yet no one would confuse these acts of husbandry as parenthood.

Of course, some cultural forces can produce pretty warped definitions of parenthood--the examples are well-known and numerous. I just finished reading Lisa See's Snow Flower and the Secret Fan--it's set among women in 19c. China, among whom a "good mother" is the one who most skilfully breaks and deforms the bones in her daughter's feet with excruciating bindings. (I'm reading it as part of a book club attended entirely of mothers of young children--most of us have daughters just the age of the girls in the story, so it resonates and haunts at that level as well as other levels.) What warp in the cultural fabric makes the Ashley scenario seeming like a decent choice to so many people?

Ashley Treatment continued ...

Dear blog posters (whether I agree with you or not!)

You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents. Source: http://benandbenniewaddell.blogspot.com

Interested in your thoughts. I may not be able to blog mine until Sunday. MD

PS: Thanks for the contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.

Sigh.

I didn't want to post about this story.

I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."

Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.

And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.

And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.

Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.

UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.