Martin family argues for legal funding at fatality inquiry

An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.

Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.

Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.

Read more here.

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

 

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.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined

from CBC Edmonton, last night, with stacks of comments already.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined.

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

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.

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. Dikema 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.

A legal article says that courts should take new standards and approve the “Ashley Treatment” because the therapy can be more important than non-person’s fundamental rights

 I know Peter Singer’s assertion that children with profound mental disabilities are not entitled to “moral status”. I remember Dr. Diekema argued defending the Ashley case that Ashley is not entitled to the same dignity as others are because she is just like a baby. Now I’m shocked to read a paper written by a lawyer named Christine Ryan that says profoundly incompetent persons may not be entitled to the basic rights protected by the Constitution because they can be non-persons depending on the definitions of persons.

Revisiting the legal standards that govern requests to sterilize profoundly incompetent children: in light of the “Ashley Treatment,” is a new standard appropriate?

Christine Ryan, Fordham Law Review, September 26, 2008

This is a long article of about 40 pages. Starting with a detailed review of the Ashley case and its development, the first thing the author does is to point out that profoundly incompetent persons are not entitled to the basic individual rights acknowledged by the Constitution based on the definition of personhood. It also mentions the UN Convention on the Rights of Persons with Disabilities and states that constitutional protections attached to persons with disabilities by the Convention require consciousness as the minimum condition of personhood,

Growth attenuation therapy in Australia?

A law firm newsletter in Australia has done a detailed legal analysis on growth attenuation for disabled children because “there is anecdotal evidence that such requests by parents may be increasing.”

 http://hwlebsworth.ensoconsultancy.com.au/health_sept09/growth-attenuation-therapy.html 

They advise doctors to consider its ethical appropriateness cautiously and warn them not to agree to provide the therapy without the proper legal procedures to obtain valid authorization for the treatment. But this all sounds so matter of fact and worries me. I hope this does not mean that an international growth attenuation experiment has already been started.

Sustainable Family Care Forum

This post is intended mostly for parents of children (including adult children) with disabilities and other family members in their families. There is a new web-based discussion group called the Sustainable Family Care Forum that is part of  research project that examines how families balance the demands of work and other life challenges with their roles and responsibilities of raising children with disabilities.  If you are a parent or family member who might be interested in taking part, please take a look at the forum and consider joining in. If you know  of others who might be interested, please pass on this information to them. Thanks!

Dr. Diekema’s latest paper is AAP statement on withdrawing nutrition from children

Forgoing Medically Provided Nutrition and Hydration in Children

 Douglas S. Diekema, MD MPH, Jeffrey R. Botkin, MD, MPH Committee on Bioethics

PEDIATRICS Vol. 124 No.2 August 2009, pp. 813-822

 

An excerpt from the abstract:

The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

The Med Page Today has detailed information on this statement here. It says,

The AAP’s bioethics committee, headed by Douglas S. Diekema, MD, MPH, and Jeffrey R. Botkin, MD, developed a position statement outlining limited circumstances under which clinicians can ethically halt feeding and hydration in pediatric patients. “Medically provided fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment,” according to a statement published in the August issue of Pediatrics, the official AAP journal.

Dr. Diekema, the ethicist in charge of the Ashley case who has been trying very hard to make growth attenuation therapy into general practice,  is chair of the AAP committee on Bioethics now.

The new growth attenuation paper by Dr. Diekema, Dr. Fost with others

I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.

1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.

2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses.

On the new growth attenuation paper

Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.

I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.

There are some particular expressions that worry me a great deal, such as “the scientific rationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.

I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.

I’m trying to post a list of links to information about Norman Fost in my blog as soon as possible. But for now, you can get a quick idea of Norman Fost’s views by visiting the 2007 Pediatric Bioethics Conference page on the Seattle Children’s site and watch the webcasts of his presentations.

Good people in medicine and the disconnect

[This is the tenth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here.]

Here Michael Shaw draws on his dual experience as a child in a medical family and as a parent of a child with Down Syndrome, and as a parent advocate working with the Canadian Down Syndrome Society to ask a question about how doctors and others often fail to connect with the concerns of parents of children with disabilities. The video is in two parts; Part 2 beneath the fold, with transcripts for both videos there (thanks to Jackie Ostrem!). A response from Dick in Part 1, and responses from Sam and Wendy in Part 2. If you have trouble listening to or viewing the videos here, you can also listen to or view them directly at Youtube: Part 1 and Part 2.

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold.

Families and Memory — Free Public Symposium

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A Free Public Symposium on Eugenics and Family Life:
Past, Present & Future
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Friday, October 24, 2008, 8:30 am – 4:00pm
Edmonton Public Library, Stanley Milner Branch (Downtown)

This FREE PUBLIC SYMPOSIUM will centre on the stories and experiences of survivors of sterilization, institutionalization, and other aspects of our social structure that have excluded persons with real or perceived disabilities from family life

Planning on attending? Enrollment is limited! Please tell us!

Visit http://www.whatsorts.net and register today
(Register Here)

Get more details on the day beneath the fold.