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Wednesday, February 4, 2009

Ashley X: Intrigue and Ethics Collide

It has been more than two years since Ashley X, the so called Pillow Angel, was thrust into the national spot light by her parents. In 2007 and 2008 hundreds of articles were written about what the press dubbed the Ashley Treatment. This controversial case has generated violent reactions and two factions exist: those that support the parents decision to attenuate their daughter's growth and surgically remove her breast buds and uterus. In contrast, disability activists and civil rights groups are staunchly opposed to growth attenuation and the bundle of surgical procedures performed on Ashley X.

Since I first read about Ashley X I have consistently hoped common ground could be found between those for and those against what I will refer to as the Ashley Treatment. I am staunchly opposed the Ashley Treatment but I am not a doctor and I have been and remain open to why some doctors think the Ashley Treatment should be a viable option for children with profound cognitive disabilities. I want to know how an institution such as Seattle Children's Hospital can ethically and medically justify why growth attenuation and surgery is necessary for what I consider a social problem--the failure to recognize the civil rights and bodily integrity of children with profound cognitive deficits. Thus I have followed the Ashley X case as closely as one can and in the last month I have spent a great deal of time reading what has been published in medical journals, disability rights magazines and blogs, and the mainstream media. I have also contacted key figures on both sides of this debate albeit with mixed results. Before I get to my own views let me provide readers with references to material that I think is thought provoking. I leave it up to readers to delve into these references.

1. The Seattle Children's Hospital website, specifically the Treuman Center for Bioethics. Under events see the Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities, May 16, 2007. The hospital has archived this event and one can see the entire symposium. The archived tape is fascinating as one gets a sense of the people and personalities involved.

2. Emi Koyama has reviewed the 2007 symposium and the most recent symposium held in January 2009 on her personal blog ( and at the website What Sorts of People. Emi is the director of Intersex Iniative, a Portland Oregon national advocacy organization for people born with intersex conditions. Her notes are very good and insightful. I agree with much of what she wrote but not all.

3. What Sorts of People website. Dick Sobsey at the John Dossetor Health Ethics Centre at the University of Alberta has blogged about Ashley X and has a series entitled Thinking in Action: The Modern Pursuit of Human Perfection. See What Sorts of People entry on January 24, 2009 for specific links to his writings on this subject.

4. The Hastings Center Report for January February 2009, V. 39, #1. A subscription is required to read anything more than abstracts of the work of Susan Gilbert, Alicia Quellette, Douglas J, Opel and Benjamin Wilfond, Erik Parens, Gregory E. Kaebnick, and Alice Dreger. As a group, these papers present a nuanced view of the issues involved in not just the Ashley X case but the conundrums that doctors encounter when dealing with ethical issues in medicine.

5. I have saved the most controversial reference for last. Mysteries and Questions Surrounding the Ashley Case. This blog maintained by the anonymous hua hima is explosive, the information it contains subject to intense debate. I do not agree with a good bit of what is written but it has forced me to think about the Ashley X case in a way I never would have done.

In spite of the fact two years has passed, I think more questions than answers have resulted from the Ashley X case. All attempts to settle the debate associated with the Ashley Treatment have failed. Here I include the 2007 Washington Protection & Advocacy System (WPAS) publicly released report and the two symposiums held by Seattle Children's Hospital. Based on my reading and thoughts I cannot get past two fundamental issues.

First, I am deeply troubled by the actions of Ashley X parents as well as the possible influence their social and financial position played a part in the decision making process. In the 2007 symposium several doctors commented that when they heard about what was being suggested they were appalled but after Ashley X father met with the hospital ethics committee virtually all involved changed their mind. Like Alice Dreger who was a presenter at the 2007 symposium, I think this sort of radical change in thinking is inherently problematic. In thinking about this I do not question that the doctors involved were trying to anything more than help Ashley X. However, I don't think they spent much if any time thinking about the larger implications of what they were going do. Surely having an influential and perhaps powerful and wealthy parent determined to get what he wanted influenced them. In part this is why I am so uncomfortable with how some involved have in the words of Erik Parens "made an uneasy peace with cases where a competent person, after a process of truly informed decision making, either refuses or requests a medical intervention to cope with a social problem". Parens acknowledges the situation is far more complicated when a child like Ashley X is involved and that "there is no good alternative to respecting parents' truly informed decisions. They are better situated than anyone else to grasp what is best for their child and family". Well, I for one beg to differ for a host of reasons foremost among them that this viewpoint ignores the legal conclusions reached by the WPAS.

Second, and most importantly, I cannot overlook the fact only one group of people are being considered for growth attenuation and the bundle of procedures called the Ashley Treatment-cognitively and physically disable children. What does this say about American society? To quote the words of my friend Steve Kuusisto at Planet of the Blind "its safe to say that the developmentally disabled are at the bottom of the caste system" a sad truth that any reasonable person cannot dispute. It is not uncommon for physicians to politely refuse to care for adults with cognitive issues and the medical treatment of such adults often fall onto the shoulders of their pediatricians. Thus it is fair to say to people with cognitive disabilities are stigmatized by within the medical establishment. It is exactly this group of professional that seeks to justify surgical intervention and the use of high dose estrogen to attenuate the growth of the children that are stigmatized in society and within medicine. The rationale used by Ashley X parents was dubious at best and whether it was explicit or not bigotry against cognitively disabled adults played a role. If you doubt this, since when do physicians surgically alter children to make caring for them easier? The answer to this is obvious--it is not done--unless of course one has the power, prestige, and drive to push doctors to do something they must come to an uneasy peace with. In short, I think the doctors and ethics committee took the easy way out--they refused to make a hard decision that would have upset two parents that love their daughter thereby proving that they were human and as prone to error as any other person.

To return to my original question--can common ground be found? I think this is possible. First, doctors can admit they made a mistake and acknowledge that the so called Ashley Treatment is at minimum ethically questionable and was not medically necessary. Second, disability rights activists can tone down the rhetoric and use past abuses of disabled people as a means of educating doctors and the general public about why disability rights and civil rights are identical issues. We people with disabilities must get other people to understand one can be disabled and proud, that disability is part of our human identity.


FridaWrites said...

You bring up quite a number of good points, all of which I probably can't adequately address right now (pain interferes w/decent writing function).

The Seattle group should hear what disability activists should say; that also means we would have to listen to what they say--of course we would to refute all the points that are leading them to this decision. How to get them to pay attention rather than be dismissive or defensive? Such hubris exists in medicine.

What I wondered as I read the last post is why this considered for developmental disabilities when if "the X's" had a child with quadriplegia or severe muscular dystrophy such a treatment would just be untenable in the doctors' minds. Or would it? Would these parents have come up with the same supposed solution? Has the Seattle group asked themselves this, why specifically for cognitive disability? Because if it's a viable solution for mental disability, it's a viable solution for physical disability. I am making a satirical modest proposal here--my fear is that instead of making them see their bias, such an example would cause them to just find a new market, adding new populations to the treatment.

My son was delayed by two years when he was 3 and 4; should his level of disability remained so strong rather than him emerging as Temple Grandin did, I would never consider maiming him for my convenience, despite the physical demands required to guide an autistic child, or so that I could lift and carry him. I'd far rather have injured myself to help him (and sometimes did). I don't know what the solution is--it's "not the Ashley treatment."

Ashley's parents have to realize she may very well outlive them or their ability to care for her at any size. While they've tried to freeze her in time, they are not immortal. Living with a disability or a loved one's disability requires change, creativity, and adaptation. What if they put so much time and energy into developing resources and support for people like Ashley, which benefits everyone?

hutahima said...

I think we should note that the medical interventions actually tend to the difficulties and problems in caring children with severe PHYSICAL disabilities, with or without mental disabilities. Transfering them from bed to wheelcair, taking them out for family events, changing their postures or making them confortable while they lie in a place...all these are about caring children with sever physical disabilities with or without mental disabilities. The Ashley treatment is really about physical disability. It looks as though it was about cognitive disability simply because cognitive disability has been used to justify the use of the intervention. The hospital and the working group are literally saying that a severely physically disabled child with no or little mental disabilities has dignity not to be invaded with this intervention, but a child with the same severe physical disability is not entitled to the same dignity if the child has profound mental disabilities. How is that notion different from the one of Peter Singer?

Thaddeus Mason Pope said...

The ethics committee was supposed to be the independent "check" on what the clinical team planned to do? You imply that they were influenced by the family just as much as the treating providers were.

Can you please expand on why you think the ethics committee did not, as you say, explore the "broader implications" of the proposed interventions?

Was it a feature of this particular ethics committee? Or ethics committees in general?

Thaddeus Pope

william Peace said...

Frida, I agree the working group in Seattle needs to include and listen closely to what disability rights activists have to say about Ashley X. Having disability scholars such as Adrienne Asch and Paul Miller involved in the working group is not enough. This is not a criticism of Asch and Miller--they are first rate disability studies scholars--but they are not activists.

The working group has been dealing with the implications that growth attenuation is selectively used on one group of children--those with profound cognitive and physical disabilities. Part of this discussion has focused on identifying what a "profound cognitive and physical disability" is. Based on my reading no agreement or consensus has been reached. What worries me about this discussion is that it assumes growth attenuation is a viable medical option. Perhaps growth attenuation is indicated in rare cases but I think it raises more questions than answers. It also does not solve a problem, blatant discrimination against people with a cognitive disability, that is social in nature.

Huahima, You get to the heart of the issue and the hypocracy involved with regard to Ashley X parents. Growth attenuation and the surgery performed was not medically necessary. By itself this is not out of the norm as many surgeries are performed that are elective and obvious examples abound. What made Ashley X parents unusual was their determination or drive to not only attenuate the growth of their child but remove her uterus and breast buds. As I have stated this is a medical solution to a problem that is largely social and as you point out makes it physically easier to care for Ashley X. The parents position and self serving blog are disingenuous because they have rejected all other options available to them. Parents are given great leeway when deciding what is best for their child and the vast majority make the correct decision. Sadly, I cannot put Ashley X parents in this group.

Thaddeus, You are asking an exceedingly difficult question. I wish I could provide a definitive answer but I cannot. Yes, I did indeed imply Ashley X parents played a major roll and profoundly influenced the ethics committee. This point is acknowledged by many.

As to how the ethics committee in Seattle worked and did not work I suggest you read the WPAS report that is available on line. Multiple failures took place and built in safe guards were ignored, not followed or misunderstood. This is all detailed in the WPAS report. I think more was involved than procedural errors but I may be wrong.

I do not think the doctors in Seattle had any idea that the Ashley X case would become a media firestorm. They knew what was done to Ashley X was controversial but the debate they expected did not take place within the confines of the medical establishment. Instead, a frenzied public dug its teeth into the story and as a result misinformation abounds.

hutahima said...
This comment has been removed by the author.
william Peace said...

huahima, There are twenty men and women on the working group. Paul Miller and 10 others have direct ties to the University of Washington/Seattle Children's Hospital. Asch who you mention is a Director of the Center for Ethics at Yeshiva University and to the best of my knowledge not an employee at UW. No working group is perfect and having 11 of 20 members from the same institution is not out of the ordinary. Aside from the utter lack of disability activists, I would have expected someone associated with the WPAS would be involved as well.

Stephen Drake said...

A couple of thoughts - maybe more than a couple - to add to this. I'm with Not Dead Yet and was working closely with FRIDA, the disability rights group that led the efforts in the Ashley X matter.

FridaWrites - The Seattle group *should* hear what disability activists have to say. But, if you check around, disability activists have been systematically shut out of events such as these (even the recent event regarding "personhood" that featured disability studies scholars in dialog with bioethicists). Considering it's activists who have "carried the water" for the disability community in public discourse such as Ashley X, futility, etc., the exclusion is hard to defend.

In relation to Ashley X, one important feature that gets lost is that this is a discussion that was caused by the professionals who published an article about the procedure - followed up by a blog by the parents of Ashley. In both cases, the clear purpose was to encourage other medical professionals and families to consider the "Ashley X Treatment" as a legitimate option.

For anyone who follows research in the area of ethics committees, the failures of this committee shouldn't come as a surprise, btw. A couple of years ago, the American Journal of Bioethics published a study revealing the lack of standards, training, and community participation that are rampant in ethics committees across the country. Although the article didn't say this, the picture painted is a recipe for the technical definition of "groupthink" as described by psychologist Irving Janis.

william Peace said...

Steve, You make a number of excellent points. Sadly, disability activists have indeed been excluded from the debate that has taken place in Seattle at the University of Washington. This is a major failure and members of the working group are aware of this fact.

I do not know if the doctors involved in the care of Ashley X planned on promoting the so called "Ashley Treatment" as a viable medical treatment for other children with cognitive disabilities. Based on my reading of the literature published in medical journals, their views have evolved since 2004. I know Dr. Diekema for instance maintains there is no such thing as the Ashley Treatment. He thinks this phrase was created by the media and the doctors involved in the working group refer specifically to growth attenuation. In contrast, there is no doubt the father of Ashley X intended to not only manipulate the media but promote the so called Ashley Treatment for other "pillow angels". This terms is downright creepy and I find the blog the father wrote self serving.

hutahima said...
This comment has been removed by the author.
hutahima said...

Sorry about the mistake in my last comment I just deleted. I just want to point out here that there is someone from WPAS in the working group.David Carlson is Associate Director of Legal Advocacy of WPAS(now DRW). He is one of the two authors of the WPAS investigative report. He was one of the panelists in the last symposium at the university of Washington, too.

One other thing. Maybe 11 out of 20 from a same institution is not out of ordinary, but if the 11 are from the very institution that was directly involved in the controversial medical intervention?

william Peace said...

Huahima, The WPAS report was bitterly disappointing. Yes, Carlson is involved with the working group.

I do not mean to imply that the working group is not biased. And I think Steve point about group think is spot on. The working group has consistently rejected disability activists for dubious reasons foremost them the belief that they cannot be reasoned with. The result is a consensus of thought and a conclusion that was reached well before a report or paper is ever released or published. This is and has been an on going problem with ethic committees. In the Ashley X case it has led me and many others to wonder exactly what is going on in Seattle.

ablemate said...

I would be interested to read an update on what is happening currently. I would be surprised to hear, for example, that no lawyers were involved in the hospitals decision to operate. It also seems clear that the committee agreed to the proceedure after the father argued the case personally. Ashley, of course, was and still is, unable to argue her case and so one would expect an adult in a position of trust to argue for her. No person appears to have argued the case for leaving her to develop naturally.
At the end of the day this proceedure has been developed to manage severely disabled children. As stated previously it is not of particular concern that Ashley is mentally impaired. Thsi may have facilitated the proceedure since a mentally alert child would demand explanations and maybe be talked to by an independent adult but, of course, this was impossible.
it is of utmost importance that this proceedure is never carried out again until all sides have had their day in court first.

william Peace said...

Ablemate, Disability Rights Washington monitors the hospital. Given terrible publicity, Seattle Children's will never again perform the Ashley Treatment. Ashley's parents remain in the news from time to time advocating growth attenuation. The lasting legacy is that growth attenuation is now performed underground. Deeply disturbing.