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.” Continue reading

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 Continue reading

Life worth giving?

Dominic Wilkinson’s article in AJOB February issue.

http://www.ncbi.nlm.nih.gov/pubmed/21337273

Abstract

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant’s future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant’s life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view.

 

Wilkinson coauthored the following papers with Julian Savulescu. Continue reading

Two disturbing pieces of news from UK

Both concerns the Court of Protection which “has the power to make life or death decisions on behalf of some of the most vulnerable people in society” under the Mental Capacity Act 2005.

1. Court bans man with low IQ from having sex

http://www.telegraph.co.uk/news/uknews/law-and-order/8301100/Court-bans-man-with-low-IQ-from-having-sex.html

(The judge uses the “ best interest” justification for the order.)

2. Woman with learning difficulties could be forcibly sterilized

http://www.telegraph.co.uk/news/newstopics/lawreports/8321601/Woman-with-learning-difficulties-could-be-forcibly-sterilised.html

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. Continue reading

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. Continue reading

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? Continue reading

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. Continue reading

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

.

Here are some other examples of what is happening.

. Continue reading

Growth attenuation working group’s “compromise” in the Hastings Center Report

The growth attenuation working group comprised by Seattle Children’s hospital has published an article in the November-December issue of the Hastings Center Report.

http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=4961

Its abstract is as follows:

Our working group sought to engage the underlying ethical and policy considerations of growth attenuation—that is, administration of short-term, high-dose estrogen to close growth plates, thereby permanently limiting height. We hoped to move beyond staking out positions with divisive and polarizing rhetoric about growth attenuation in order to find common ground and better identify and understand the areas of deep disagreement. In this paper, we offer sympathetic accounts of differing views so that those who hold a particular view can better understand others’ concerns. We also reach for a middle ground—a moral compromise based on respect for sustained disagreement rather than on consensus. Most of our group agreed to the compromise that growth attenuation can be morally permissible under specific conditions and after thorough consideration.

There are also pieces by Norman Fost, Eva Feder Kittay, and two parents.

There’s also a column by Alice Dreger.

http://www.thehastingscenter.org/Publications/HCR/Default.aspx?id=4968

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. Continue reading

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.