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http://community.babycenter.com/post/a29468249/what_are_your_thoughts_on_growth-attenuation_therapy

Look at the pictures of Simon, the son of the person who started the thread. One of them has a comment saying, “Simon taking a couple of steps.”

Dr. Diekema attested in a case of botched circumcision in the superior court of Washington in January 2006 as a qualified doctor. 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.

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.”

Ashley’s appendectomy was done during an abdominal surgery all right, but it was not a surgery for therapeutic reasons.

Dr. Diekema obviously believes that surgical risks should be considered as “excessive risk” in appendectomy on a healthy child. I believe he would certainly agree that surgical risks should be taken seriously by someone considering hysterectomy on a healthy child.

We can also see what he actually means by “surgical risks” when he says in the testimony, “ …a surgical procedure can only be justified when the benefits likely to accrue to the patient outweigh the harms that might arise from surgery – pain, possibility of death or complications.” Possibility of death or complications…… That’s serious.

On the other hand, Diekema and Gunther in their 2006  initial growth attenuation article laid out a number of “advantages” of the “prophylactic hysterectomy” and wrote, “The risks of this surgical procedure in prepubertal girls, and the risks of long-term complications, are minimal- certainly they do not excess risk of similar procedures many of these children will experience as part of their medical care.

In his 2010 paper “Ashley Revisited: A Response to the Critics”, Dr. Diekema did the same. He wrote, “any risk-benefit analysis of hysterectomy and breast bud removal cannot ignore the potential benefits of ameliorating or avoiding breast discomfort, menstrual cramps, pelvic exams, and Pap smears, and any consideration of harms of the alternative treatments that would have been necessary (e.g., 30 years of birth control measures, anesthesia for gynecological exams and mammograms, breast biopsies, etc.)” The latter part may give an impression that they are doing the “harm” part of the analysis, but they are only talking about benefits because these are all harms that the authors claim would be made unnecessary by the surgeries.

Then, as for risks, the authors write, “Hysterectomy is a common procedure with a low incident of serious harm performed for many reasons, including those cited in Ashley’s case. Breast bud removal is also an accepted procedure, …..” Obviously Dr. Diekema cannot ignore the potential benefits of hysterectomy but can easily ignore its surgical risk, that is according to himself, pain and possibility of death or complications. What kind of “risk-benefit analysis” is it?

Dr. Diekema also says in the court testimony, “A parent or proxy decision-maker would not be offered surgery as an option until the less harmful therapy had been attempted and demonstrated to be unsuccessful.”  Then he says he agrees with the AAP Bioethics Committee when they state, “…Providers have legal and ethical duties to their child patients to render competent medical care based on what the patient needs, not what someone else expresses….The pediatrician’s responsibilities to his or her patient exists independent of parental desires or proxy consent.”

It is strange that the Seattle Children’s hospital special ethics committee showed “reluctance” (the parents’ blog) to mastectomy first but were convinced somehow after the presentation by Ashley’s father – after they heard “what someone else express”ed – and decided that “parents should be able to decide” (Diekema, in his lecture at Calvin College, 2008). Maybe they decided “independent of parental desire” within their responsibilities as pediatricians that parents should be able to decide?

In light of the philosophy of the AAP statement Dr. Diekema quoted in approval, it is also weird that the HCR article by the growth attenuation working group emphasizes “shared decision-making” and “respect for parental decision-making about medical care” instead of “the pediatrician’s responsibilities to his or her patient” that should exist “independent of parental desires.”

It is also bizarre that the authors “choose not to discuss hysterectomy” while they admit “it is difficult to disentangle hysterectomy from growth attenuation in females.” Their admission means that growth attenuation in females entails the surgical risks. And they are the surgical risks without “therapeutic reasons” for that matter. The reason they choose not to discuss hysterectomy is “there is an established literature and a general consensus on policy, including the issue of judicial review”. And that general consensus goes that the history as well as its highly invasive and irreversible nature requires hysterectomy in women with disabilities to be dealt with utmost caution and in some states there should be a court order. So long as hysterectomy is hard to be disentangled from growth attenuation in females, growth attenuation in females should automatically call for the same policy as hysterectomy including judicial review .

They write “An enthusiastic provider might overstate the benefits and minimize the risks” but they are not even minimizing but totally ignoring the risk of pain, possibility of death or complications. So what kind of risk and benefit analysis is there when they reach the “compromise” that “growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree”?

It is obvious from his testimony in the court that Dr. Diekema has been aware of the surgical risks in the Ashley case and has been intentionally downplaying or ignoring them. Isn’t it just “benefit and benefit analysis” he has been doing from the 2006 article up to the recent WG article?

As for Dr. Diekama’s official views on involuntary sterilization in his 2003 article that also contradict his own justification of the Ashley case, visit my post here.

Girl X: An actor? In a wheelchair?

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.

Commenting on the Joseph Maraachli case where Baby Joseph was moved to US 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 in her paper “Revisiting the legal standards that govern requests to sterilize profoundly incompetent children:  in light of the “Ashley Treatment,” is a new standard appropriate?” published in Fordam Law Review, September 26, 2008.  For details of the legal article by Ryan, visit my post here. Dr. Dresser’s “revised best interest test” is based on the notion that profoundly incompetent persons like Ashley are inhabitants of “different worlds than competent individuals.”

For details of the Maraachli case, refer to the links below.

http://alexschadenberg.blogspot.com/2011/02/windsor-couples-appeal-dismissed-to.html

http://www.torontosun.com/news/canada/2011/02/21/17353866.html?sms_ss=facebook&at_xt=4d62c02b77547652,0

http://www.dailymail.co.uk/news/article-1361593/Canadian-hospital-caves-refusal-send-terminally-ill-baby-Joseph-Maraachli-home.html?ito=feeds-newsxml

http://www.thestar.com/news/ontario/article/945700–parents-of-baby-joseph-to-appeal-ruling-to-take-child-off-life-support?bn=1

http://www.dailymail.co.uk/news/article-1362330/Parents-terminally-ill-baby-consider-mercy-dash-U-S-bid-extend-life.html

http://www.torontosun.com/news/canada/2011/03/13/17601961.html

The first 20% of the article:

In 2006, Ashley, a 6-year-old child with severe developmental disabilities, received treatment at Seattle Children’s Hospital (SCH) with high-dose estrogen and surgical removal of the child’s uterus and breast buds, in order to attenuate her growth to facilitate parental care-giving and to improve her future quality of life. Subsequently, a 20-member working group comprised of ethicists, legal experts, and community representatives was assembled at SCH to discuss ethical and legal aspects of growth attenuation in children like Ashley. In this report the working group’s deliberations are summarized. The group could not establish a consensus, but the majority reached this position of moral compromise: growth attenuation in the nonambulatory profoundly developmentally delayed child is ethically acceptable because the benefits and risks are similar to those . .

http://aapgrandrounds.aappublications.org/cgi/content/extract/25/3/36

 

2 minutes and a half.

Norman Fost is speaking about withdrawing and withholding aggressive treatments from “seriously ill children, children who are suffering”, children who may not “wake up and start functioning again” and about child abuse prevention.

In his child abuse prevention program, they identify  “high risk parents”  in nurseries and send home visitors to them. In this video that is only pasted bits of the interview, Fost doesn’t explain how they define “high risk” or how they identify them except “they know who they are.”  That reminds me of “the Minority Report. “

To justify this program, Fost says, “As a pediatrician, my most important client is child. ”  Wow…… I’m stunned. In my recollection, his most important client has been parents and the parental right to decide all though the Ashley Treatment controversy.

Maybe his most important client is neither child nor parents nor even parental rights. Maybe it is medicine and physician’s right to decide, in short, medical control.

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