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”? Continue reading

Dr. Lantos “Nobody knows exactly what went on in that committee meeting.”

Visit this bioethics site and go to the Bioethics Channel from the link there. Yes, this debate between Dr. Fost and Dr. John Lantos who wrote a critical commentary in AJOB deserves a listen.

Dr. Lantos says court review is absolutely necessary, pointing out three problems of ethics committees in cases like the Ashley case: there’s no transparency, there’s no due process, and there’s no accountability. He says “Nobody knows exactly what went on in that committee meeting.”

How true……

“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. Continue reading

“‘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. Continue reading

Gene identified as cause of intellectual disability

The gene is called TRAPPC9. Its mutations cause up to 50% of intellectual disabilities worldwide, says Dr. John B. Vincent of the Center of Addiction and Mental Health. The way his team identified the gene disturbs me. They studied genes of a large family from Pakistan that had at least seven members with non-syndromic intellectual disability and another from Iran. Because “researchers and families themselves have long suspected an inherited factor, based on patterns observed in extended families.” Dr. Vincent says, “This spotlights the intense interest that genetics is bringing to types of inherited intellectual disability that, to date, have been poorly understood.” He is talking about “devising potential therapeutic strategies,” too.

http://www.medicalnewstoday.com/articles/174204.php

This all sounds so familier. The Kallikak family…..the Duke family……Buck V. Bell……..  So it’s coming back, after all?

Dr. Norman Fost’s latest comments on surrogacy

Dr. Norman Fost, who wrote two papers on the Ashley case and growth attenuation with Dr. Diekema this year, says on surrogacy in an article below, “It’s paternalistic to tell a competent woman how she can use her body, whether it’s to work in a coal mine or as a surrogate mother. “ He also says, “It’s not clear why that (commodification) would even be of any great consequences to the child if he or she is raised in a loving home.”

http://www.thedailypage.com/isthmus/article.php?article=27617

His comments on other issues such as savior sibling, steroid in sport are listed here. Continue reading

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. Continue reading

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, Continue reading

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.

Ventilator rationing guideline

A guideline is being prepared by US health care officials to decide whose ventilators will be disconnected in case of swine flu pandemic. It is based on what is called the New York protocol, which “calls for hospitals to withhold ventilators from patients with serious chronic conditions such as kidney failure, cancers that have spread and have a poor prognosis, or ‘severe, irreversible neurological’ conditions that are likely to be deadly.”

Dr. Carl Schultz at the University of California at Irvine says, “The problem with lowering the standard of care is where do you stop? How low do you go? If you don’t want to put any more resources in disaster response, you keep lowering the standard.”

Read the ProPublica story below for details.

http://www.propublica.org/article/flu-nightmare-officials-ponder-disconnecting-ventilators-from-some-pat-923

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.

Physician-assisted-suicides in WA, OR, and MT

Five people have died under the new Washington physician-assisted suicide law, says an article on the American Medical News site . Two cases were referred to mental health professionals, who filed complaints. Fourteen people have requested doctors’ aid in dying so far. The article also includes the statistics of assisted suicide deaths in Oregon (60 deaths, the most in 2008) and explains the current situation of the Montana assisted suicide debate.

 

Links to articles on the fist case in WA

http://www.seattlepi.com/local/406483_death22.html

http://pugetsoundblogs.com/kitsap-caucus/2009/05/27/two-sides-of-the-first-assisted-suicide/

 

An article on the second case in WA

http://seattletimes.nwsource.com/html/localnews/2009296724_websuicide03.html

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. Continue reading

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. Continue reading