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Thursday, January 28, 2010

Playing God and the Ashley Treatment

In Diekema and Fost article, "Ashley Revisited: A Response to Critics", the authors seek to address 25 distinct and substantive ethical arguments that contend the Ashley Treatment is unethical. I was one of the critics supposedly engaged and summarily dismissed. This bothers me but not because I strenuously object to what was done to Ashley. I cannot get this article out my head because there is no effort on the part of Diekema and Fost to really engage their critics. This is frustrating in the extreme. The entire tone of their article is dismissive and to date I have refrained from objecting to how they framed what I wrote in my 2007 article, "Protest from a Bad Cripple", published by Counter Punch. I recently came across a quote from Diekema that has inspired me to directly address what they refer to as "Objection 12 You are playing God".

I did indeed write that Diekema and his deceased colleague, D. Gunther, were caught "playing God". In reply Diekema and Fost argue there are several problems with this argument. First, "if playing God refers to intervening with nature's or God's plan than all of medicine involves playing God". Second, "if we play God in offering certain interventions we also play God when we decide not to intervene". Third, "if God is responsible for Ashley's condition then he is also responsible for creating those with the ability to alter her condition".

Frankly, the reference to "playing God" was a throw away line meant to emphasize a point. And what was the point I was trying to get across? I will quote my next sentence, one that appeared in the second paragraph where I suspect Diekema and Fost stopped reading: "The Ashley Treatment affects not just one girl in Seattle but all people—those with and without a disability. Doctors have established a precedent with Ashley—it is ethically and socially acceptable to mutilate the bodies of disabled people. What Ashley and her doctors have failed to grasp is that all disabled people share a common bond."

In retrospect I could have used a word other than "mutilate" but at the time I wrote the article I was furious. Then, as now, I considered the Ashley Treatment to be ethically questionable at best. My views have not changed appreciably. But to suggest that in some way I object to the Ashley Treatment due to the presence or absence of God is grossly misleading. Even if Diekema and Fost object to what I wrote they could at least direct their comments to substantive issues I raised. For instance, here is paragraph worth delving into:

"In choosing this course of action I consider the parents to be modern day Frankensteins or a perverse Modern Prometheus as Shelley’s 1818 classic novel was subtitled. In coining the term the Ashley Treatment and Pillow Angel doctors have not only over reached the bounds of ethics in medicine but sent a shot across the bow of every disabled person in American society. The message is very clear: disabled people are not human—they are profoundly flawed and extreme measures will be taken to transform their bodies. Consent is not necessary as the mere presence of disabled people, particularly those like Ashley with a profound mental disability, is inherently unacceptable. Modern science however has come to the rescue and doctors have the technology and know how to prevent her from becoming Frankenstein--a developmentally disabled adult."

To their credit Diekema and Fost may have understood my point as they wrote "this argument is trying to convey the sense that decisions of this kind are arrogant". Yes, arrogant is a word that I think nicely fits Diekema and in particular Fost. They are arrogant in a way that gives doctors a bad reputation. Apparently decisions that led to the Ashley Treatment can "easily be made in humility". They suggest a "theological lens through which to view decisions like those made on behalf of Ashley is the notion of stewardship". Humility is about the last word I would associate Diekema and Fost with. But the notion of "stewardship" is likely closer to the truth. It is possible Diekema and Fost consider themselves stewards--stewards of the less fortunate. People like Ashley that don't talk back. How convenient for them. What they apparently don't like is when those they theoretically "steward", people like me, talk back. Let me be clear: they are the experts when it comes to caring for the human body. In contrast, my expertise lies in the cultural construction of disability and it ramifications. Ashley is impacted by her disability as am I. Yes, my cognitive ability is not impaired but that does not mean the bias, stigma, and social isolation I experience is any different from what Ashley and her family encounter. There are social solutions to this that Ashley's family and her doctors do not want to consider. This thought echoes a recent comment made by N. Tan ad I. Brassington in their article "Agency, Duties, and the Ashley Treatment" published in the Journal of Medical ethics (November 2009): "In a sense the wider Ashley Treatment-taking into account that it also involved a hysterectomy, appendectomy and breast bud removal to protect against problems of as yet unknown severity that might not appear anyway—might represent less of an attempt to meet the challenges of Ashley’s condition than an attempt not to have to meet them. At the very least, it is not obvious that the Ashley treatment was the only or even the best response to the challenge of caring for her. Again, it is not clear that it would be acceptable to deal with most patients in this way: so, again, we might want to know whether and what different rules apply here".

What indeed are the rules that apply here? If the Ashley Treatment would not be considered for a so called normal child why are they socially and medically acceptable for Ashley? This is a discussion worth entering into, one Diekema and Fost have avoided via quotes taken out of context. But I suspect as Ashley's humble "stewards" they need not discuss such matters with a pesky crippled scholar such as myself. This is unfortunate as we people with a disability have much to say and share a lot in common with Ashley. She may lack the agency to understand such a debate but it does affect her life as well as mine. I wish Diekema and Fost were willing to listen an engage in this debate.

Tuesday, January 26, 2010

Ashley Treatment and the Parental Update

Ashley X parents have updated their blog. I know this because I have read the reactions at two sites: Mysteries and Questions Surrounding the Ashley Case (also posted at What Sorts of People) and Life with a Severely Disabled Child. I urge people to read these two reactions to the parental update. I am not surprised by what Ashley's parents have written. However, I am distressed by their continued salesmanship for such an ethically questionable "treatment". There is not doubt the parents think they have the answer for not only their daughter but all other so called "pillow angels". This term remains creepy years later and does nothing but divert attention from the meaty issues involved in the Ashley Treatment or what doctors involved now call growth attenuation.

I remain adamantly opposed to the Ashley Treatment. I would like to believe I am open minded on the subject. I keep reading, and hoping the major players involved, Douglas Diekema and Norman Fost among others will actually engage in a productive dialogue with those critical of the Ashley Treatment. To date, this has not happened in large part because, like Ashley's parents, they know they have the one and only answer to treating children with profound physical and cognitive disabilities. Critical views are read and dismissed. There is no real effort to engage in a nuanced debate and disability rights activists such as myself are quoted out of context or characterized as being driven by a political agenda. Ashley's parents views are even more strident. While I may disagree with people such as Diekema and Fost nor are my concerns regarding the ethics involved allayed by their work at least they make the pretense of engaging with others. Ashley's parents in contrast are not content with attenuating the growth of their child. They are now akin to the used car salesmen of growth attenuation. I have tried to be restrained in my criticism of Ashley's parents but the latest update to their blog, January 13 third anniversary, was disheartening and biased in the extreme. Ashley's parents raise six bulleted points:

1. Ashley has a significant scoliosis, a curve of 56 degrees that has been stable for the last 14 months. If her scoliosis gets worse, to 75 degrees, surgery to straighten her spine and protect her organs will be required. The lack of progression of her scoliosis has lead her parents to wonder if growth attenuation has slowed its development. This is pure speculation. Scoliosis treatment has changed radically in the last four decades. As one who spent years in braces and eventually had scoliosis surgery I am well aware much of what was done to me decades ago could be considered experimental. Science has advanced as has the treatment of scoliosis but there is by no means a definitive course of treatment. To suggest growth attenuation slows the progression of scoliosis is misleading if not irresponsible.

2. Ashley's parents report that a dozen parents from all over the world have contacted them and reported their children (boys and girls) have had the Ashley Treatment. No country or countries of origin is identified. The parents also maintain that some hospitals have provided treatment while others have not. They refer to a case where the hospital ethics committee approved the treatment but hospital officials declined citing public relations concerns. These statement are dubious. For instance, they make a point to mention that both boys and girls have received the Ashley Treatment. To the best of my knowledge, no doctor, including Diekema, has suggested growth attenuation was a viable option for males. As for for hospital administrators declining to perform the Ashley Treatment because of adverse public relations seems misleading. I suspect the truth is that it is legally difficult to sterilize a minor. The laws in this regard are quite strict (not that they helped Ashley). Moreover, if the Ashley Case was looked at as setting a precedent lawyers would surely be aware of the added safeguards agreed to by the hospital and WPAS.

3. The parents refer to a 2008 panel on growth attenuation at a pediatric conference held in Hawaii. For more on this see the Mysteries Surrounding the Ashley Case website. The parents state most people attending this conference and panel in particular were in favor of growth attenuation. This may or may not be true. The parents were not present nor was I. They seem to rely on the private email from an unnamed physician present. It is worth pointing out here that the panelists included David B Allen, Douglas Diekema, Norman Fost, and Michal Kappy. All four have written and are outspoken proponents of the Ashley Treatment. These men can hardly be considered an unbiased source.

4. According to the parents, at the 2009 Treuman Katz Center for Pediatric Bioethics Diekema stated that the ethics committee at two major children hospitals have investigated growth attenuation and concluded there was no ethical reasons why the treatment could not be performed. If this is true, why did Diekema not identify the hospitals by name? This could only lend more credence to his position. Is it possible he exaggerated to make a point? Is this claim true?

5. The parents refer to an article in Pediatrics entitled "Growth Attenuation Therapy" noting that two pediatric endocrinologists and two bioethicists are in favor of the Ashley Treatment. This is correct and misleading at the same time. The people they are referring to are none other than Allen, Diekema, Fost and Kappy. The same men who were in Hawaii to present their findings.

6. The parents refer to an article in the American Journal of Bioethics, "Ashley Revisted", by Diekema and Fost that I have already critiqued on my blog. This paper is dreadful and utterly failed to do what it set out to do--engage critics of the Ashley Treatment. What the parents do not mention is the devastating rejoinders that accompanied the AJOB article. As is the custom for AJOB, critics had a chance to reply to the target article. Of the nine people that replied, I would consider eight sharply critical. The authors of these critiques are a diverse group and their comments worth serious consideration.

I did not expect Ashley's parents to suddenly be balanced when they updated their blog. But their rigorous and unrelenting sales job for growth attenuation is hard to understand. They had their proverbial fifteen minutes of fame and were on Larry King. What more do they want? Such updates come across badly, as though they are slapping themselves on the back for a job well done. What the parents have done is make some inroads among four men--Allen, Diekema, Fost and Kappy. All their references in medical journals refer to these men alone. No mention is made of a single critic. Hundreds of "supportive" and private emails are referred to on their blog yet not a single critic is identified or worthy of passing reference. One possible explanation for this is the fact the parents accept without question a medical model of disability. That is their daughter's problem is a physical and cognitive deficit. This is of course correct but the solution to the issues need not be met with a radical surgical solution. Doctors under a medical model of disability are the "experts" and this is true provided this expertise is limited to the human body. When it comes to the social ramifications of disability I have a far greater understanding than most people, including Ashley's doctors. I have spent much of my adult life thinking about disability and its meaning inside and outside of a hospital. I do not mean to dismiss the profound consequences of Ashley's disabilities but rather know that many of the issues she and her parents will encounter have well established solutions. They appear to me to not like these solutions and have instead distanced themselves from the very people who could provide answers to the dilemmas they will encounter. In short, Ashley's parents and their most recent update reveals they are hopelessly misguided. This is sad, a social failure if you will, and one I hope will not delude other parents into making a comparable mistake.

Monday, January 25, 2010

Errors in Fact: Baby Isaiah Updated

If one thing characterizes this blog I hope it is my passion. I passionately believe in disability rights. There is no doubt in my mind that disability rights and civil rights are one in the same. This passion is great but has a down side--sometimes I let my passion get ahead of me. I did this in my last post and as a result made some errors in fact. Two people were kind enough to point this out--Sam Sansalone and Barbara Farlow. Barbara Farlow left a long comment on my last post I urge everyone to read. She has also been kind enough to communicate with me via email. So what errors did I make?

I implied Barbara Farlow's daughter Annie died in the United States. This is wrong. Farlow has written about her experiences in Canadian and medical ethics journals. I read an interview with Farlow and articles she wrote, one that was published in the Hastings Center Report. I incorrectly assumed she was an American. Farlow has much to say, all of which is critically important, about her experiences with the medical establishment, human rights, and the legal system. Farlow is seeking to bring public awareness to a problem that is incredibly complex. But I would argue that complexity is a red herring. The fact is children, even those with what are deemed "lethal anomalies" deserve medical care, care that is in their best interests. This is what Farlow sought for her daughter and what every parent expects when dealing with a sick child. Based on what I have read Farlow's daughter needlessly suffered and as she wrote in her comment to my post " this reality must set off major alarm bells". I hear those bells loud and clear and can only hope through her efforts the medical establishment will as well.

I referred to Sam Sansalone and his daughter Katya who had Trisomy 13 like Farlow's daughter. I quoted Sansalone and those quotes came from Life Site News. While the quotes are correct I did not mean to imply Sansalone was speaking on behalf of the Family to Family Connections at Alberta Children's Hospital. Sansalone was speaking personally as the father of Katya. Sansalone is Co-Chair of the Advisory Committee to Family to Family Connections but he was not in any way representing the views of this group. I apologize for this error. I also need to point out that Sansalone did not claim that a child with or without Trisomy 13 is denied medical treatment or access to health care in the United States. The suggestion that what Sansalone and Farlow respective daughter's experienced takes place in other countries is my opinion. An opinion, that I will seek to support in future entries. But this contention is mine not Sansalone.

I spent a great deal of time this weekend thinking about Farlow and Sansalone. I remain as impassioned and troubled as I was last week. Here we have educated, dedicated, and caring parents that wanted what was best for their respective children. The medical system failed them and in my opinion did so in spectacular fashion. Both have become fierce advocates as a result in the hope no other children will experience a similar fate. I wish them well and hope to remain in contact with them as they have much to say. Frankly, I think the entire system inside and outside of the medical establishment must be changed. We need to embrace what children, all children, have to offer the world. We do not get to pick and choose who we decide treat. If a child, a so called normal child, receives routine medical care than what does it say about us as when we withhold the exact same treatment from child with profound disabilities. Judgments are being made and I would contend they are based less on science than an inherent bias against the most vulnerable and dare I say costly humans. The problem is not a matter of semantics but rather life and death--and I am not being melodramatic--just ask Sansalone and Farlow.

Two thoughts have looped through my mind the last few days. First, I wish an organization like Family to Family Connections existed when I was a sick child. I am sure my parents, and especially myself, would not have felt as isolated and alone. I surely would not have been as scared as I was when I approached major surgeries and painful procedures. I am sure my parents would have benefited from talking with other parents that were going through a comparable experience with their child. Second, I admire the determination and courage it takes to assert one's self as Sansalone and Farlow have done. I sincerely hope they have a strong bond as I suspect they do. But what I worry about is the children that do not have outstanding parents. What happens to children that have Trisomy 13 or comparable condition whose parents are not as dedicated? What happens to children or those whose parents simply accept what their doctor suggest? Farlow wrote to me that in the 1960s, the veritable Dark Ages of neonatology, that 15% of children like her daughter lived beyond a year. Now, they quote 5% live to six months. Could it be these children are encountering a lethal form of discrimination? I cannot answer this question but it is one worth serious thought. Afterall a recent report I read in Pediatrics revealed neonatal nurses thought death was preferable to life with a profound physical and cognitive disabilities. And here is where I am not all that different from such children. I know there are people that see me and a few who tell me directly that they would prefer to be dead than use a wheelchair. This comment always leaves me speechless. What, I wonder, is the point of making such an observation? Surely asserting one's social superiority is a variable but far more is going on socially. The same can be said when it comes to the treatment of children with profound disabilities and I hope Farlow and Sansalone can make others think about this important subject.