What is the role Dr. Fost has been playing in the Ashley X case?

At the beginning of the “debate” between Dr. Fost and Dr. Lantos on the Bioethics Channel, the interviewer said, “Dr. Diekema and Dr. Fost were both involved in the Ashley X case”. Dr. Fost himself put a little distance from the case by saying “what the Seattle team had done” in explaining what “we” the authors thought to write the recent AJOB article. But that led me back to one of the questions I have been pondering for a long time: What is the role Dr. Fost has been playing in the Ashley X Case?

Dr. Diekema and Dr. Wilfond had their residency at the University of Wisconsin. Dr. Diekema introduced Dr. Fost as “mentor of mine” at the 2007 bioethics conference of the Seattle Children’s Hospital. Dr. Fost has been one of the star speakers at the conference for years. He’s been often invited to speak at the hospital seminars, too. So we can easily imagine that he is very close to the hospital (or to the Truman Katz Bioethics Center, at least) and that he must have a strong influence on Dr. Diekema and Dr. Wilfond who are both directors of the bioethics center. But did we know that Dr. Fost was “involved in the Ashley case”?  As we remember, he was one of the independent professionals in the initial controversy of 2007. An unbiased ethicist invited by the media to comment on the case. Or he acted like one, at least. He was invited by the Scientific American to join the email debate on January 5, 2007 and also invited to join the debate in the Ashley segment of Larry King Live on January 12. So he was involved in the controversy, yes. But he was not there in the controversy as someone ”involved in the Ashley X case”.

Some examples of what he said in the two debates:

I also agree with the father’s observation that having her size be more appropriate to ‘her developmental level will make her less of a “freak” (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring. (Scientific American)

The detailed account of the medical basis for the decisions in Ashley’s case, as well as the careful ethical reasoning that they relied on, are well documented in the article by Gunther and Diekema, and the father’s extraordinary detailed account of how and why they came to their conclusions. Whatever disagreement critics may have, it is not possible to say this decision was made casually or quickly, without careful consideration of the relevant facts and arguments. (Scientific American)

It strikes me this is an incredibly caring couple who wanted to do what was best with their child. They got a lot of consultation and thought about it very carefully. The used treatments that were not experimental, as people claim. Estrogen has been around for decades, using it to slow down growth has been done before, taking the uterus out of profoundly retarded children to reduce the fears associated with menstruation and reduce the risk of cancer. These are standard things of pretty low risk……..the father’s Web site, which was remarkable. These are good parents who want to care for their child at home as long as possible…….(Larry King Live)

(When Joni Tada questioned the legality of the decision) I can not imagine what law has been violated. These are asking licensed doctors, very respected doctors to provide treatments that is clearly of benefit or at least of potential benefit. These are pretty low risk treatment. I would like to know what law it is that they violated. I cannot think of any. (Larry King Live)

When I first read the two articles back  in 2007, I couldn’t believe that there was anyone who would praise that evasive Gunther & Diekema article as “well documented” when the paper totally lacked in the details of the specific ethics committee or its ethical discussion. I couldn’t understand at all how it was relevant whether the parents were caring or good, or whether the doctors were respected or not. “What kind of ethicist is this?“ I wondered and that question made me curious about him. (You will find some of the result of my research here. )

Dr. Fost was not in the growth attenuation symposium of May 2007. He may have been there in the audience, but he was not among the speakers, as far as I remember. He was invited to the pediatric bioethics conference of the hospital in July 2007  and commented on the Ashley case shortly at the beginning of his presentation and praised the hospital for its candidness to go public with the case for open discussion, again commenting as someone outside. In May 2008, he was the last speaker of the growth attenuation panel at the AAP conference in Hawaii in 2008. The next time we saw his name in the case was January 2009, in the list of the members of the growth attenuation working group mysteriously set up by the hospital. And that was probably just about the time, I imagine, when he started teaming up publicly with Dr. Diekema to promote this controversial therapy. He wrote two papers with Dr. Diekema last year. The two physicians look like a promoting engine for growth attenuation (with accompanying possibilities of “prophylactic” hysterectomy and/or mastectomy) that should be OKed for severely disabled children in general without court orders, despite the agreement between the hospital and WPAS. And there was the letter sent to Ashley’s father by a physician who had attended the 2008 growth attenuation panel in Hawaii. (What kind of physician-parent relationship is that, whoever the sender was? )

And it was Dr. Fost, a professor of the University of Wisconsin, debating on the case with Dr. Lantos in the Bioethics Channel last week, not Dr. Diekema who was the ethicist in charge and was directly involved in the case.

What is the role Dr. Fost has been playing in this case?

The mystery of April 2008

Thanks to Ashley’s father, we now know about the growth attenuation panel in the AAP annual conference in May 2008. Dr. Diekema of the Seattle Children’s Hospital chaired the panel. This piece of new information bothers me. The panel had been planned for some time before the conference, of course. Dr. Diekema must have been involved in the planning. But as I pointed out in my post before the last, the growth attenuation working group set up by the hospital had its first meeting in April 2008. I wonder if the working group members were aware of the plan when they first met to “evaluate” the controversial therapy.

In fact, one other thing happened in April 2008 in the hospital. The hospital administration originated the safeguard policy for growth attenuation on April 11, 2008, belatedly, because it was something that they had agreed with WPAS to implement by September 2007. The policy goes, “ The consent of parents or legally authorized surrogates is necessary but not sufficient in the case of consent to growth-limiting medical interventions for individuals with developmental disabilities. Where one or more growth-limiting medical interventions are proposed for an individual with a developmental disability, a court order authorization must be obtained before scheduling or otherwise initiating any such growth-limiting medical intervention. For purposes of this policy, a “growth-limiting medical intervention” means any medical intervention, including surgery or drug therapy, that alters or is intended to alter a patient’s potential for normal physical maturation, such as linear growth. This policy specifically applies to high-dose hormone treatment intended to limit the patient’s normal physical maturation, and breast bud removal undertaken in connection with such high-dose hormone treatment.” If that was how they had “evaluated” growth attenuation, there should be no need for them to set up a working group to start an “evaluation” anew.

And how does this all make sense? In April 2008, the same hospital prepared a safeguard policy for growth attenuation requiring court order authorization in accordance with the 2007 agreement with WPAS on one hand and on the other, had set up the working group,  had it start a new and obviously unnecessary “evaluation” and had one of its physicians plan the panel knowing he had a very strong opinion that court authorization is not necessary for growth attenuation. I just don’t know how these could all be compatible.

What led me to the mystery was a new legal paper I just read, by the way. Growth Interrupted: Non Therapeutic Growth Attenuation, Parental  Medical Decision Making, and the Profoundly Developmentally Disabled Child’s Right to Bodily Integrity written by Mary Koll,  J. D. candidate of the University Illinois College of Law in the January issue of its journal.  She highly acknowledges the agreement between the hospital and WPAS, just as Dr. Quellette did in her excellent legal analysis of this case (2008). But I think they both missed something. Agreeing to do something is not as good as actually doing it. The hospital agreed to do so much in 2007. But how much has actually been done? What has become of the agreement after the joint press conference? It seems that nobody has checked on it. Or has anyone? Has WPAS (DRW now), for example?

Dr. Lantos “Nobody knows what went on in that ethics committee meeting”

Visit this bioethics site and go to the Bioethics Channel from the link there. Yes, this debate between Dr. Fost and Dr. John Lantos who wrote a critical commentary in AJOB deserves a listen.

Dr. Lantos says court review is absolutely necessary, pointing out three problems of ethics committees in cases like the Ashley case: there’s no transparency, there’s no due process, and there’s no accountability. He says “Nobody knows exactly what went on in that committee meeting.”

How true……

“The Ashley Treatment” has been done to a dozen of children, Ashley’s father says, but who sent the email to him?

In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”

Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.

Here, I would like to raise a question about the father’s update. Who is “ an attending doctor” who sent the email and reported to him about how the conference had gone?

The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father. (Please note that “the Pillow Angel” is replaced by ” the Pillow Baby,” and “puberty attenuation” is added to growth attenuation.) The details of the panel from the program are as below.

May 4,　2008

9:00am–11:00am

4195 The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental

Disability

PAS/LWPES Topic Symposium ~ HCC, Room 316AB

Target Audience: General pediatricians, pediatric endocrinologists, developmental pediatricians and ethicists.

Objectives:

– Understand the ethical, social, and developmental implications of growth and pubertal attenuation therapy in the severely

disabled child

– Integrate potential medical and surgical approaches to growth and pubertal attenuation therapy in the severely disabled child

Chairs: David Allen, University of Wisconsin Children’s Hospital, Madison, WI; and Douglas Diekema, Children’s Hospital and Medical Center, Seattle, WA

Growth and puberty attenuation in children with profound developmental disability has recently received national and international media attention since the publication of the Seattle case known as the “Pillow Baby.” Many pediatricians and endocrinologists are now being approached by families of similarly affected children who wish for similar medical/surgical treatments raising various medical, social, and ethical questions.

9:00 Overview

David B. Allen, University of Wisconsin, Madison, WI

9:05 Endocrinological Aspects of Growth Attenuation

Michael S. Kappy, The Children’s Hospital, Denver, CO

9:30 Social Concerns About Growth Attenuation

Robert A. Jacobs, Childrens Hospital Los Angeles, Los Angeles, CA

9:55 A Developmental Perspective

Douglas Vanderbilt, Childrens Hospital Los Angeles, Los Angeles, CA

10:20 Ethical Aspects of Growth Attenuation

Norman Fost, University of Wisconsin, Madison, WI

10:45 Discussion

Program developed by the Lawson Wilkins Pediatric Endocrine Society and the Pediatric Academic Societies

So the panel was chaired by Dr. Allen, pediatrician of the University of Wisconsin who specializes hormone treatment, same university and same interest area as Dr. Norman Fost. It was chaired also by Dr. Diekema. The last speaker of the panel was Dr. Fost. Interestingly, these three were all members of the growth attenuation working group comprised by the Seattle children’s hospital which held its first meeting in April 2008, just a month before this panel. Then, adding the second speaker of the panel to these three, we have all the authors of the article “Growth-Attenuation Therapy: Principles for Practice” in the June issue of the Pediatrics, about which I wrote here and here.

The email sender wrote “we asked for a show of hands” and must be one of the speakers, not anyone in the audience. So who is the doctor who sent the email and reported to Ashley’s father about how the conference had gone? The email also said, “Everybody seemed agreed that it should be studied or that a registry should be created if this moves forward. It should be interesting to see what happens in the endocrine community after that discussion.” It is the father’s plan to make it a study by making a registry of children who go through this treatment. The sender sounds like someone who knows his plan and is willing to work to help him realize it. (If you visit the father’s update and read the full quotation, you will note the humble tone of voice of the text message, too.) And it is someone who attended the panel. So who is the doctor who sent the email to Ashley’s father?

“‘The Ashley Treatment’ is against physician’s moral duty to themselves,” says Naomi Tan

In the November issue of the Journal of Medical Ethics, there’s a great paper on the Ashley case by Naomi Tan of Center for Social Ethics and Policy, University of Manchester and I. Brassington. It is titled “Agency, duties and the ‘Ashley Treatment.’”

http://jme.bmj.com/content/35/11/658.abstract

Reading its full text, I find it reassuring that the authors, unlike some others who have written papers on the case, have obviously read pertaining documents very rigorously and have steadfast understanding of the facts. After describing the case and pointing out some ethical problems in the justifying rationale by Ashley’s father and the doctors, that are not very different from those already pointed out, the authors proceed to a philosophical discussion.

If we call creatures with autonomy and personhood “agent” for the sake of ease, and think that Ashley is a “non-agent,” would it justify the invasive treatments done to her? The authors give two different arguments to conclude that it wouldn’t.

In the first, they write, “although a family might consist of agents, it is not an agent in its own right. And if we are prepared to treat one non-agent – such as a family – as a “direct” object of moral concern, then it is hard to see why we mightn’t have the same attitude to another non-agent – such as Ashley.” But the beauty of the paper is in the next argument of physicians’ moral duty. Here they point out that the doctors’ rationale to justify the Ashley treatment is based on the assumption that moral agents (doctors here) act in a moral way because of the moral status of the recipient of their good act. And quoting from Kant, they claim that we owe our moral duty to ourselves, not to the moral status of the recipient of our act. It is the duty to maintain our humanity, our capacity to act as moral agents. We have to act in a moral way and it is the duty to ourselves because cruelty to non-agent like animals, for example, dulls our compassion and as Kant says “gradually uproots a natural predisposition that is very serviceable to morality in one’s relations with other men.” It is about virtue rather than rights. We also have a duty to refrain from acting wantonly for the same reason. That makes causing Ashley to suffer surgically because of the suffering that may or may not be caused doubly immoral in light of the physicians’ moral duties to themselves.

They write, “Not acting for a reason generates a reason not to act” and conclude “we cannot do to them what we would be unwilling to do to their brothers.” They also say that the problematic and worrisome aspects of the Ashley case “seem to be worthy of further investigation; and the results of this investigation may well resonate beyond questions of what we may do to one disabled girl.”

Not acting for a reason generates a reason not to act…….. This seems to be true not just to “the Ashley treatment” but to many other ethical issues like futile care theory, genetic testing, surrogacy and such. Maybe human-beings have a moral duty to themselves to refrain from doing something just because it is technically doable and refrain from harming our corrective humanity, our ability to sympathize, understand, accommodate, love and care.

This paper also reminds me of this great post by Dr. Sobsey.

Dr. Norman Fost’s latest comments on surrogacy

Dr. Norman Fost, who wrote two papers on the Ashley case and growth attenuation with Dr. Diekema this year, says on surrogacy, “It’s paternalistic to tell a competent woman how she can use her body, whether it’s to work in a coal mine or as a surrogate mother. “ He also says, “It’s not clear why that (commodification) would even be of any great consequences to the child if he or she is raised in a loving home.”

http://www.thedailypage.com/isthmus/article.php?article=27617

His comments on other issues such as savior sibling, steroid in sport are listed here.

Maybe we should pay more attention to him when we think of the Ashley case or growth attenuation. Dr. Fost is Dr. Diekema’s mentor. Dr. Diekema had his residency at University of Wisconsin where Dr. Fost has been teaching. And Dr. Fost has always been there in the Ashley case controversy from the very beginning as you can see in the post linked above. Only he pretended to be an uninterested third party ethicist when he strongly defended the case in the Larry King live or in the Scientific American debate in early 2007.

One of the biggest mysteries of the Ashley case: Did the hospital intentionally lie at the May 2007 press conference?

 Did the hospital lie at the May 2007 press conference?

Dr. Diekema and Dr. Fost wrote two papers this year on the Ashley case and growth attenuation respectively. (I wrote about them here and here.) I find both of the papers quite daring. Not just daring in that the authors justify and promote the controversial interventions but also daring in that they virtually negate the official announcement the hospital made at the press conference of May 8, 2007. In the announcement, the hospital said that they had broken the law, that it had been a communication breakdown resulting in illegal hysterectomy, that there wouldn’t be any of “the Ashley treatment” interventions without court orders, and that they would implement a safeguard policy against the interventions. Dr. Diekema argues now in the two papers that the ethics committee approval was good enough without court review. What about the official explanation by the hospital that it was an error in communication that ended up in illegal hysterectomy? Does he mean the court review was knowingly neglected? This leads me to one of the questions that have been nagging me for a long time. Did the hospital publicly lie at the press conference of May 8, 2007? Were they empty admission and unfaithful promises?

There’s a proof that the hospital at least tried to be faithful.

I’ve long been curious about how the hospital has kept swaying so incoherently in this case. The hospital once admitted Ashley’s hysterectomy was illegal in the press conference and promised they would implement a safeguard policy. But as I pointed out in the post Did the hospital back down on the agreement with WPAS?, they implemented the policy for involuntary sterilization on November 15, 2007, but seem to have backed down on the promise of the safeguard policy for growth attenuation, as far as what I have found on the internet is reviewed.

The mystery here is the fact that the document itself was prepared by Senior Vice-President and General Counsel on April 11, 2008, even though it hasn’t been approved as yet. How they had to separate the promised safeguard into two different policies is a mystery. Why it took them so long to originate the second one after the implementation of the first policy for sterilization is another. I smell some kind of trouble or disaccord that had to be cleared before they finally originated the document, but it is speculation. Anyway, the important point is that the hospital administration clearly tried to be faithful to the promise up until the April 2008. The prepared document should be a proof that the hospital was sincere when they made the promise at the press conference and at least tried to stay true for about a year after that. Something must have happened after the conference over the safeguard policies within the hospital. Something that forced the hospital administration to back down on the promise they had publicly made.

 Dr. Diekema’s comments against the hospital announcement

We don’t have any solid facts and all we can do is speculate here, but what I think might be a clue is laid out in my post What Dr. Diekema spoke and wrote right after the joint press conference of May 8, 2007. What he spoke and wrote right after the press conference was filled with strong dissatisfaction and  frustration over the hospital announcement. I simply couldn’t understand his audacity when I first read his remarks in the media then. It seemed incredibly daring for a physician to go so openly against the official announcement of the hospital he works for. But his action may not seem so peculiar if we consider the fact  that there was someone else sharing his  frustration. Ashley’s father also reacted in his blog to the hospital announcement. The two were not satisfied at all at the hospital’ admission and promises and didn’t mind making it abundantly clear to the public (and also to the hospital?). I just wonder if that had anything to do with the safeguard policy for growth attenuation that was originated by the administration but has not yet been finalized.

Why did Dr. Diekema and Dr. Fost write a paper at the same time as the working group was meeting?

This mystery of  inconsistent swaying by the hospital actually goes back to one of the two papers mentioned above.  The growth attenuation paper by Dr. Diekema, Dr. Fost and others, published in June in the Pediatrics. The paper was seemingly being written at the same time as the working group, of which three of the authors were members, was meeting to ”evaluate”  ethical appropriateness of growth attenuation. According to Dr. Wilfond’s explanation at the symposium, the growth attenuation working group first met in April 2008 and worked till December. The paper was accepted by the journal in October 2008. I wonder if the other working group members were aware of this paper bein written independently. If I were a member, I would be offended. If the authors were writing the paper justifying growth attenuation while they were sitting in the working group meetings at the same time,  what does that mean? It looks as though they had not cared what would come out of the group discussion. Or as if they had not been satisfied with what was being discussed in the group? Or was there someone else outside the group again who was not satisfied with the way the group discussion was going?

(Please note the working group that had been mysteriously comprised without any official announcement from the hospital or any explanation about the shift from its 2007 announcement is certainly another example of its incoherent vacillation.)

Is Dr. Diekema really the voice of the hospital?

 I imagine critics assume that Dr. Diekema has been the voice of the hospital. Many people assume that the hospital, Dr. Diekema and Ashley’s father are in on this together. They are “the involved” in this case and it is automatically assumed that they are one. But are they really? What if they are actually two parties? What if there is a power conflict between the two parties and the conflict has sometimes tipped the power balance between them as this case took unexpected turns in its long and complicated development, resulting in the incoherent sways of the hospital? Has Dr. Diekema really been the voice of the hospital?

And after all these complicated developments of the case, what if the two parties share one same interest in trying to make growth attenuation a general medical practice available to other disabled children, one same interest for different reasons, one to fulfil a self -righteous dream and the other to complete their cover-up act?

The 6th Pediatric Bioethics Conference of Seattle Children’s on ethical issues in prenatal and neonatal care in July 2010

 Tiny Babies, Large Questions: Ethical Issues in Prenatal and Neonatal Care

 Sixth Annual Pediatric Bioethics Conference Friday and Saturday, July 23, 24, 2010

Bell Harbor International Conference Center, Seattle, Washington

 http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/

Dr. Norman Fost, who coauthored the Ashley paper with Dr. Diekema in AJOB this April, will be one of the speakers as usual. His presentation is titled, “Whatever Happened to Baby Doe? The Transformation from Under-treatment to Over-treatment.”

Reading “Ashley Revisited: A Response to the Critics” by Dr. Diekema and Dr. Fost

Reading the article “Ashley Revisited: A Response to the Critics” written by Dr. Diekema and Dr. Fost and published in AJOB in April, I find same dishonesties repeated from the initial 2006 paper by Dr. Gunther and Dr. Diekema. I also find new pieces of information revealed for the first time and newly altered explanation. But it is quite interesting that the new information and explanation do not always coincide with their previous explanations and as a result, rather seem to have ended up in betraying or confirming their deception after all.

(I pointed out some of the mysteries and questions about the initial 2006 paper here by the way. )

 1. 　reasons and motivations

 The authors are extremely dishonest again in explaining the parents’ motivations and the priorities among them. As I have already pointed out here,  Ashley’s father repeatedly denied prolonging home care as any part of the reasons for growth attenuation. The parents did not have any “fear” that it would be impossible for them to care their daughter at home as she grew bigger. They were so sure that they would keep her at home no matter what that there was no need to “fear”. But the doctors wrote they had had the “fear” in the initial paper and then repeated it again this time.

Bed sore prevention was suggested by a doctor as a benefit from growth attenuation only “recently,” Ashley’s father wrote in his blog at the beginning of 2007, years after the request was reviewed by the committee. But Dr. Diekema and Dr. Fost say that it was part of the parents’ reasons from the beginning.

The authors didn’t hide mastectomy this time. It has long been out in the open thanks to the father’s blog and there’s no point in hiding any more. But the authors failed to include the parents’ “fear” that big breasts would sexualize Ashley to caregivers in their motivations.

What is most interesting in regard to reasons and motivations, however, is the big change in the reasons for hysterectomy. In the 2006 paper, Dr. Diekema emphasized that it had been “prophylactic” hysterectomy, necessary to prevent adverse effects from the hormone treatment. He said that it would bring some advantages “as an adjunct to high-dose estrogen treatment,” implying that the growth attenuation had been the main thing. He now says it was done to prevent pregnancy and menstrual discomfort. So saying, he has admitted that hysterectomy was done for its own reasons, independent from the growth attenuation therapy. At the same time he has also admitted dishonesty in his explanation of hysterectomy in his 2006 paper.

2.  the length of the hormone treatment

Dr. Diekema wrote “she is now a little more than a year into therapy” in the initial paper that was published in October 2006. That would put the starting point of the hormone therapy some time in the late summer of 2005. But when Ashley’s father started his blog on the 2nd of January of 2007, he wrote, “We’ve just completed this treatment after two and a half years.” That would put the starting point some time in the summer of 2004. There was a gap by nearly one year.

Now in the new article, Dr. Diekema writes “Ashley underwent 2-1/2 years of high-dose estrogen treatment.” With this correction, he has admitted the father’s blog was correct and his information in his 2006 paper was not. But where is his explanation? Isn’t he responsible to fully explain why he reported the treatment period one year shorter initially? Otherwise, it looks as though the doctors had felt uncomfortable to go public with the true length of the treatment, lied in their paper and hoped that they could get away with it. They had no idea at that point that Ashley’s father would start a blog and reveal everything in the future.

3.  the size of the committee

There was no specific information in the initial 2006 paper about the special ethics committee that reviewed the Ashley case.  If you have an impression that the initial 2006 paper gave the details of the committee,  it is a false impression. You will find how you were misled in the item 6 of my post, Mysteries and questions about the doctors’ medical paper. You will also find how the doctors have left the father’s misunderstanding about the size of the committee uncorrected in my other post, How big was the special committee? 

 Now in the April paper, Dr. Diekema writes “the case was referred to the hospital ethics committee. The meeting was attended by eleven members of the ethics committee, the parents, the patient, and three of the patient’s physicians.” He finally revealed a number that may suggest something of the committee size. Eleven members of the ethics committee. First question is, why now? Why not during the heated controversy at the beginning of 2007 when so many people were talking about the BIG 40-member ethics committee. Some defenders even counted the big size of the committee as a reason to trust the decision. I doubt that Dr. Diekema was unaware of the wrong information repeatedly mentioned by defenders and in the media. Why did he wait to reveal the number of the members of the ethics committee who attended the meeting up until now?

The next question is who the eleven were. As I have repeatedly pointed out in this blog, it was the SPECIAL ethics committee that reviewed the Ashley case. But the authors haven’t explained how special that particular ethics committee was. Saying eleven members of the committee attended the meeting is not exactly the same as saying the ethics committee had eleven members on it. The Salon got an insiders’ information that the special ethics committee that reviewed the Ashley case had been insider-only. Were the eleven insider members from the ethics committee? Was it how they comprised and named the meeting the SPECIAL ethics committee? Why did they do that?  They have to explain because that would make the authors’ statement that the case was referred to the hospital ethics committee with an implication that it was the hospital’s regular ethics committee untrue. 

 4.  absence of detailed information of the committee discussion

During the 2007 controversy, Dr. Diekema kept saying that the committee had discussed “carefully” but failed to reveal the specific details of the discussion itself. That’s what he is doing in this paper again. The authors write in Objection 25, “the authors………claim that the ethics committee failed to do an adequate job. These claims are speculative, and quite simply wrong. In fact, the committee did explore less invasive options and did engage in a comprehensive, ethical discussion that included many of the issues Quellette assumes were not discussed and many that she left off her list.” I find it simply unbelievable that anyone can ever write anything so naïve in an academic paper. He is not saying any more than “You say we didn’t do our job right, but just believe me. We did it!” It is not even an argument. Why can’t  he just go ahead and provide with the specific information of what less invasive options were explored, what benefits and risks were discussed about each of these options and how, what were the reasons to turn down each of the options, what exactly were the issues they discussed that Dr. Quellette assumes were not discussed and how they discussed each, what exactly were the “many” issues they discussed that Dr. Quellette left off her list and what came out of the discussions?  How can he accuse critics of their “incomplete knowledge of what actually transpired in the ethics committee meeting” when that’s exactly the information and explanation he has been required but has failed to give?

4.  burden of proof

In the Ashley story of the Time of January 7, 2007, Dr. Gunther said, “If you’re going to be against this, you have to argue why the benefits are not worth pursuing.” The Diekema & Fost paper is based on the same logic when the authors conclude, ”we do not feel these arguments provide sufficient grounds to preclude similar use of these interventions for carefully selected patients who might benefit from them.” But it is such a perverse logic. Critics do not bear any burden to prove anything. They did not approve the novel and untested and controversial application of those invasive treatments or administer them to a disabled girl. It is the doctors, the authors here who are to bear the burden to prove by providing with “sufficient grounds” and clear and convincing evidences for their approval of the requests from Ashley’s parents.

It’s been three years since the case was first reported and Dr. Diekema obviously still feels the need to defend their decision by writing this paper. The authors of the paper list 25 different objections voiced during the three years.  TWENTY-FIVE critical arguments, addressing only “distinct substantive arguments” at that. To me, these two facts are proof enough that the doctors have failed to justify their decision.

5.  Dr. Diekema’s admission that he knew the necessity of court order

In Objection 25, they write, “While there is some legal basis for claiming that court review should be required for involuntary sterilization (Diekema 2003), there is no coherent legal or policy rationale for court review of growth attenuation.” With this, Dr. Diekema has proven what I pointed out in the post Dr. Diekema’s official views on involuntary sterilization: Why did he do everything he himself had said “Don’t” without doing things he had said “Do” in the Ashley case?  Note the year of the publication. The year 2003. It is the year  BEFORE the special ethics committee reviewed the request from Ashley’s parents. At the time of the meeting, Dr. Diekema clearly had an understanding that “court review should be required for involuntary sterilization.” Well then, what do we make of his many comments right after the hospital admitted the illegality of Ashley’s hysterectomy I pointed out here? They all contradict the understanding as well as what he wrote in this 2003 paper.

6.  half of Dr. Fost’s “no court in medicine” theory left unsaid

 In the last part of Objection 25, the authors argue that hospital ethics committees are good enough to make medical decisions without court involvement, mentioning Dr. Fost’s paper of 1992. They maintain that hospital ethics committees are trustworthy in themselves because they were originally created to replace the courts that failed to protect disabled children from life-threatening discrimination in medical practices. I haven’t read the paper, but I watched the webcasts of Dr. Fost’ presentations and panel at the 2007 Seattle Children’s Hospital bioethics conferences. I have also been carefully following the comments the ethicist has made on various issues in the media as you may see in the Links 7 post. I’m sure there’s a lot more in Dr. Fost’ theories.

You will know what I mean by watching the webcasts of his presentation, Parental Request for “futile” Treatment, and Panel on Day One of the conference from the same link post. He is a very radical proponent of the futile care theory. In the presentation, he says there are two different concepts of futility: qualitative futility and quantitative futility. By the latter he means that the futility decision is up to how the society measures the worth of the patient’s life. In fact, his is not a theory of medial futility of treatments but a theory of societal futility of patients. And he advises his audience, who are mostly medical professionals, very strongly not to go to courts for medical decisions because they won’t be able to do what they want that way. His message is “Just ignore the courts. No doctors have ever been convicted with liability in this country. We are safe. The courts should not have a say in medicine. Medical decisions are to be made by medical doctors.”

Dr. Fost did say something about hospital ethics committee’s protection of disabled children in Panel. But his tone of voice is clearly different from this Diekema & Fost paper makes it sound. When asked from the audience in Panel how they can assure interests of children are fully represented in ethics committees, he easily answered just including one or two persons from local community would suffice. Hospital ethics committee in his theory seems to me to be a justifying scheme to ward off judicial intervention and protect professional independence of medicine from judicial oversight. You will hear strong hatred of court intervention in his speech. You will also hear dislike and disdain of disabled children. Especially strongly when he said in Panel that disabled children had been killed in ancient times. I heard a challenge in his tone,  “what’s wrong if we leave them to die with our futile care theory now?”

Revisiting the father’s blog: his unique interpretation of law and Ryan’s article

The other day, I was revisiting the blog started by Ashley’s father in search for some information unrelated to the subject of this entry, and my attention was drawn to a part. I hadn’t heeded that part much so far. But just after reading the legal paper written by Christine Ryan, I was intrigued by that particular part. Ashley’s father wrote explaining his consultation with a lawyer at the request from the special ethics committee,

Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might choose to become pregnant at some future point, and should have the right to do so.

I didn’t know the law protects only disabled “women” from involuntary sterilization. I didn’t know that the law only applies to people with “mild disability.” I didn’t know that only women with mild disability should have “the right” to become pregnant, either. I wondered if this has been really the lawyer’s interpretation of the law and revisited the lawyer’s letter attached to the WPAS investigative report as Exhibit O. I found the first half of the above quoted blog part goes along with the lawyer’s advice, but the latter half goes a little too far from it.

The lawyer wrote, “Ashley will never be able to care for a child or even to understand the connection between sexuality and pregnancy,” but did not mention “the right” to get pregnant, disability mild or severe.  I imagine the lawyer’s interpretation of the law in the letter was somehow stretched a little farther into a more unique and creative version as Ashley’s father tried to interpret the lawyer’s interpretation. Thus a new interpretation of the law, original by Ashley’s father, that the law applies only to women with mild disability and that women with severe disability are not entitled to “the right” of reproduction because they can’t choose to be pregnant due to their disability. That just makes me wonder how did Christine Ryan come to share the same uniquely radical rational in her paper.