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.”

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.

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.

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

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

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

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Children who have mental healthcare needs?

http://nationaltheatrescotland.wordpress.com/2011/01/24/girl-x-blog-1/

http://nationaltheatrescotland.wordpress.com/2011/01/31/girl-x-blog/

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You will find about Softley here.

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There’s also a Facebook page for Girl X.

http://www.facebook.com/event.php?eid=196211043722295

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According to the Facebook info, it is a story about a hysterectomy request from the mother of Girl X (11) who has severe cerebral palsy. When the doctors accept the request, the Greek chorus asks ethical questions and Softley challenges them.

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There’s already a debate going on on the Facebook page and it seems like the Katie Thorpe debate rekindled.

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 given by the proponents is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities. Its generalization would prioritize medical fix and wouldn’t help in realizing more social care. More importantly, it would be “medicalization.”  It would help deteriorate societal attitudes and do people with profound disabilities social harm, as Dr. Quellette so eloquently pointed out in her 2008 paper,  by labeling them as someone it is OK to fix in a way that would be immoral if done to others. The proponents of the intervention in the WG can’t share these views with its opponents. If they think they do, they must totally miss the point, unless the authors just say they share these views in order to say, “OK. We all agree to these. So case closed about them.” The case can’t be closed here without talking about human rights and discrimination. These views are about human rights and discrimination, the critics have been pointing out.

Respect and deference for parents is totally irrelevant, because it is not about supporting parents in difficult decision making here. It is about the limit of parental right in decision making about an extreme, novel, untested, highly invasive and irreversible medical intervention for their disabled children.

On the other hand, the article writes the differences within the group simply refer to attitudes toward our bodies or our children’s bodies. Just a matter of whether we should accept our bodies as they are or accept shaping our bodies if there is benefit.

Sharing so much and differing in so little, they should easily “reach for a middle ground” and “compromise.” After all, “This is one of many parental decisions for which a decision in either direction may be ethically justified,” goes the article.

No, it’s not. To see why this is not one of those parental decisions for which a decision in either direction may be ethically justified, you can turn to the WPAS investigative report. It writes, “these procedures (breast bud removal and growth attenuation), along with the hysterectomy affect an individual’s common law right to be free from bodily invasion.” The WPAS attorneys (this must include Mr. Carlson who was a member of the WG) think “a court would probably find that, like sterilization, the removal of a child’s breast buds and administration of high doses of hormones for the purpose of implementing the “Ashley Treatment” would be considered by a court to pose a similarly significant imposition on the child’s liberty and privacy rights.”

You can also turn to Washington University Informed Consent Manual (2001-2004) attached to the report, which states, “The intent of this limitation is to require court approval before a guardian or other legally authorized surrogate may consent to highly intrusive, irreversible medical treatment that may seriously affect the person’s bodily integrity.”

Or checking the newsletter analysis of growth attenuation by a legal company in Australia will also help. It says, “growth attenuation therapy is permanent and irreversible, with arguable therapeutic benefit for the child, and there is a likelihood of significant adverse consequences for the child if the wrong decision is made.” It advises in conclusion “doctors would be well-advised to insist upon court authorisation before agreeing to provide growth attenuation therapy.”

The WG article repeats the statement with subtly different expressions that the decision of growth attenuation has no serious impact and is no different from other medical decisions parents of profoundly disabled children always make. The authors repeatedly blush off opponents’ concerns based on this view. But they can’t do this, because it is the proponents’ view represented by the statement that  is challenged by critics. Using the statement as a ground for rebuttal is tautological and it is not valid argument.