Dr. Diekema’s official view of “surgical risks” and its contradiction to his justification of the Ashley case and the HCR article by the growth attenuation WG

Dr. Diekema attested as a qualified doctor in a case of botched circumcision in the superior court of Washington in January 2006. What he said there is quite interesting when we think of his Ashley case justification. I find his views of “surgical risks” and “pediatrician’s moral and ethical responsibilities to analyze risk vs. benefit independent of parents’ desire” totally relevant to the “Ashley treatment” debate.

http://www.circumstitions.com/ethics-diekema.html

For example, he says, “Non-therapeutic procedures that involve excessive risk should be avoided. An appendectomy on a healthy child, who has no history or symptoms of an appendicitis and who is not undergoing an abdominal surgery for other therapeutic reasons, for instance, would not be ethically justifiable because the absence of benefit to the child would not justify the surgical risks.”

Ouch! interview with Robert Softley on Girl X

 

http://www.bbc.co.uk/ouch/interviews/girl_x.shtml

I have posted here about the play in the National Theatre of Scotland based on the “Ashley treatment” controversy.

Rebecca Dresser, UW professor and member of the growth attenuation working group, comments on the Maraachli case

Commenting on the Maraachli case where Baby Joseph was moved to U. S. after Canadian court ordered removal of his respirator, Rebecca Dresser, a professor of law and medical ethics at Washington University in St. Louis, said in the article below that U.S. courts generally side with families in such cases that want to continue treatment for loved ones even in seemingly hopeless medical cases, that similar end-of-life cases will likely become more common, “Because of the growing concerns about costs, we’re going to see more of this.”

http://www.thestar.com/news/world/article/954061–baby-joseph-moved-to-u-s-after-canadian-court-rules-docs-can-remove-breathing-tube?bn=1

Please note that Dr. Dressor is one of the members of the growth attenuation working group set up by Seattle Children’s and was quoted many times by Christine Ryan

Norman Fost speaking about futile care and child abuse prevention targeting “high risk parents”

 

Seattle Children’s bioethics conference will discuss prioritizing care to children “based on social, physical or mental status”

The Seattle Children’s Hospital will hold the seventh annual pediatric bioethics conference in July. This year’s theme is “Who’s Responsible for the Children? Exploring the Boundaries of Clinical Ethics and Public Policy.” On the conference page of the hospital web site, they lay out some of the issues that will be discussed. One of them goes, “Should care to children be prioritized based on social, physical or mental health status?” and there are some examples of children such as:

Children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

Children with intellectual disabilities who require special resources, yet will remain dependant on society?

Children who have mental healthcare needs?

“Girl X”, the National Theatre of Scotland’s new production for Spring 2011

The National Theatre of Scotland will present with an original play based on the Ashley X case and its controversy. Robert Softley, wheelchair user, public speaker, actor and script writer who started the project four years ago, has written two posts on this in the theater’s blog.

Questions about the growth attenuation working group article in HCR Part 3

The WG article makes the divide between proponents and opponents look far smaller than reality to make the controversy itself look far less grave than it actually is.

It notes at the beginning of the article that the group members share the views about profound disabilities as below.

1)    They are concerned that people with profound disabilities are devalued.

2)    They believe more investment in medical and social services is priority.

3)    They think societal attitudes toward people with profound disabilities should be improved.

4)    They also think that parents of profoundly disabled children should be “afforded respect and considerable deference in making the complex and difficult decisions unique to their child’s care.”

They can’t share the first three views, because opponents’ point is that the rationale of growth attenuation is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities.

Questions about the growth attenuation working group article in HCR Part 2

 

The WG article explains that the group was assembled to “discuss the ethics of growth attenuation in greater depth and develop practical guidance for health professionals. “  So, it was the purpose of assembling the group to develop practical guidance for health professionals, from the beginning.

I have some questions about this.

1)    Where is the urgent need to develop any guidance for growth attenuation, which is not a therapeutic treatment?

Questions about the growth attenuation working group article in HCR Part 1

At the beginning of the article, the authors are not very honest in what they write about the 2006 Gunther & Diekema paper.

1.    The WG article writes that Gunther & Diekema “offered an ethical justification for growth attenuation.” No they didn’t. How could they do that without giving any details of the “special” ethics committee that had reviewed the case or its discussion?

2.    According to the WG article, Gunther & Diekema cited easier care for parents as the benefit of the growth attenuation. And “the parents believed” that it would lead to increased participation to social and recreational activities for Ashley, the WG article says Gunther & Diekema wrote back in 2006. No, they didn’t.

A growth attenuation campaign is started

Watch the 3-minute video in the Q13 FOX article below.It says,

Now, four years later, a Seattle based group studying the ethics surrounding “Ashley’s procedure” has decided it is “morally permissible” and has written a report on the subject……

Curt Decker of the National Disability Rights Network spoke out then. “The majority of the disability community is clear. That this kind of procedure is not acceptable at this time in our country’s history.

But times have changed and so have opinions. The Seattle-based group of doctors, ethicists and parents including Sandy looked at and studied the case determining growth-stunting procedures should be “morally permissible” under certain circumstances.

Growth Stunting Procedure For Disabled Children Is “Morally Permissible”

A look at parents rights and their children’s care

Q13FOX.com, December 5, 2010

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Here are some other examples of what is happening.

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Family court allows parents to sterilize their severely disabled daughter in Australia

You can read the judgment here.

http://www.familycourt.gov.au/wps/wcm/resources/file/eb204741ce4e7c0/2010_FamCA_98.pdf

And here are some news articles.

http://www.brisbanetimes.com.au/queensland/parents-win-bid-to-sterilise-daughter-20100309-ptlf.html

http://mikiverse.blogspot.com/2010/03/disabled-girl-can-be-sterilised-court.html

http://www.dailymail.co.uk/news/worldnews/article-1256806/Australian-court-allows-parents-sterilise-11-year-old-daughter.html

http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/7405283/Parents-win-right-to-have-disabled-daughter-11-sterilised.html

Emi Koyama explains why she is suspicious of bioethics

Emi Koyama just posted a really great article on the Bioethics Forum site reviewing a research practice of intersex fetus treatment using a synthetic hormone and the Ashley case. She says, “I am starting to question seriously what role bioethics and bioethicists play in medical controversies involving children who cannot make decisions for themselves, and parents, especially mothers, who are forced to make the decision under complicated social, cultural and economic circumstances” and “After all, what is the relevance of risk/benefit analysis when the intended goal is unethical?”

http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4492

Emi writes toward the end of her wonderful article, “I trust many of these scholars and their judgment. But that was how I felt about the disability theorists who were part of the working group that ended up helping to polish up growth attenuation as a legitimate treatment.”

That reminds me. I have a small piece of advice for anyone who has a chance to read Dr. Adrienne Asch’s commentary to the Diekema & Fost AJOB article. Please don’t miss the footnote on Page 46. Dr. Asch is a member of the Seattle Growth Attenuation and Ethics Working Group and signed the group’s statement that claimed growth attenuation to be ethically admissible for severely disabled children in general without court orders, something Dr. Wilfond called “a compromise” the group had reached. But Dr. Asch explains in the footnote that she signed it because she “supported the process through which the statement was produced” and not because she supported all its conclusion. But normally, signing a document means that you support its contents including the conclusion, whatever process there was in its production. And whatever excuse you might have. This footnote leaves me really curious about what happened in the working group discussions.

On some misinformation in Dr. Lantos’ marvelous commentary to the Diekema & Fost article

I just read “It’s Not the Growth Attenuation. It’s the Sterilization!” , Dr. Lantos’ commentary to the AJOB article “Ashley Revisited” by Dr. Diekema and Dr. Fost. Dr. Lantos virtually pointed out the fact that the doctors’ justification has been full of deceptions. It’s the fact that I have been documenting in my blog and I’m so glad that someone officially wrote in an academic journal about “the bizarre opaqueness” of their supposedly scientific articles. Here,  I just want to point out two pieces of misinformation I found in his commentary. I think at least one of them leads us to a serious question surrounding the 2007 agreement between the hospital and WPAS.

Dr. Diekema is going to speak about the Ashley case again in April

Dr. Diekema is among the plenary speakers in the following pediatric ethics conference in Cleveland.  He is going to speak about the Ashley case  in one of the breakout sessions on April 22. “Ethics Concults and Institutional Interests: The Ashley Case.” He will also speak in another breakout session on the next day about withholding and withdrawing fluids and nutrition.

the Pediatric Ethics 2010:Advancing the Interests of Children

April 22-24, 2010

You will find the program details here.

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

At the beginning of the “debate” between Dr. Fost and Dr. Lantos on the Bioethics Channel, the interviewer explained, “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 why “we” the authors wrote 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 guest 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”?

“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’s 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. Who is “ an attending doctor” who sent the email and reported to Ashley’s father 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.

Ashley… effects of estrogen on weight

Many people have pointed to the conspicuous absence of  an mention of Ashley’s mastectomy in Diekema and Fost’s (2006) article on growth attenuation. There is another conspicuous absence that has not received the same attention. The authors provide no data about Ashley’s weight. This absence is troublesome since the author’s justify the procedures by indicating that Ashley was getting much larger and the primary concern was that she would become to heavy to be cared for by her family. However, they provide information about Ashley’s height before and during treatment but nothing about her weight.

How heavy was Ashley? Did her treatment succeed in attenuating her weight?

Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does.

Tracking Chromosomes, Castrating Dwarves

This is the title of a new paper by distinguished historian of eugenics, Paul Lombardo, available for download via SSRN here that recently appeared in the journal Ethics and Medicine. The paper focuses on Charles Davenport, who became the Director of the Cold Spring Harbor Laboratory in 1910 and immediate set up the Eugenics Records Office there later that year. It was to become a major institutional force in the development of North American eugenics. While the paper concerns a small episode in the history of eugenics from 1929, what it says about consent, medical intervention, and disability will ring bells for regular readers of this blog. The abstract of the paper reads:

“‘The Ashley Treatment’ is against physicians’ 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.