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

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 The prevailing official view is that treatment may be withdrawn only if the burdens in an infant’s future life outweigh the benefits.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 On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being.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

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?

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

Inclusive Post-Secondary Education

Alberta is a Province of contrasts. While Alberta’s role in sterilizing people with Developmental Disabilities as late as the 70s is infamous, Alberta also deserves kudos to for providing the world’s first inclusive post-secondary education program for people with developmental disabilities in the 1980s, and the On Campus program continues today, 23 years later at the University of Alberta. Alberta now boasts inclusive post-secondary education programs at 17 colleges and Universities across the Province and maintains an international leadership role in the field. Unfortunately, these programs sit precariously on the chopping block today as Alberta faces financial difficulties. Continue reading

Heidi Janz Wins 2010 Tanis Doe Award

Heidi Janz wins Tanis Doe Award

Dr. Heidi Janz received word this morning that she has been selected by the Canadian Disability Studies Association that she has been selected as the recipient of the 2010 Tanis Doe Award for Canadian Disability Study and Culture. This annual award was first given in 2009 and honors activist and scholar Tanis Doe who died in 2004. According to the Canadian Disability Studies Association:

This award honours an individual who dares to “speak the unspeakable” in advancing the study and culture of disability, and who has enriched through research, teaching, or activism, the lives of Canadians with disabilities.

Tanis Doe, a Métis (Ojibway/French Canadian) Deaf woman, who was a wheelchair user in the later part of her short life, received her Doctoral Degree from the University of Alberta, before going on to hold the Ed Roberts Post-Doctoral Resreach fellowship at the University of California- Berkeley, being appointed a Fullbright Scholar in Bioethics at the University of Washington, and teaching at several other universities, including her final post at the University of Victoria. Continue reading

The incidentalome and the genome

For those of you who have been concerned about the implications of the human genome and the emergence of the human metabolome, there is another strange new creature born of modern science and  roaming our planet, the incidentalome. The incidentalome is a bizarre creature without clearly defined shape or form but it is not certainly not mythical. Kohane, and others have described the incidentalome as the universe of all possible incidental findings. While this universe of possibilities is not new, its boundaries are rapidly expanding as diagnostic procedures have evolved substantially. Continue reading

Ashley… effects of estrogen on weight

Many people have pointed to the conspicuous absence of  an mention of Ashley’s mastectomy in Diekema and Fost’s (2006) article on growth attenuation. There is another conspicuous absence that has not received the same attention. The authors provide no data about Ashley’s weight. This absence is troublesome since the author’s justify the procedures by indicating that Ashley was getting much larger and the primary concern was that she would become to heavy to be cared for by her family. However, they provide information about Ashley’s height before and during treatment but nothing about her weight.

How heavy was Ashley? Did her treatment succeed in attenuating her weight? 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

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.

Disability Ethics Bibliography

As part of our Work at the Disability Ethics Project, we have just launched a new Disability Ethics Bibliography. There are currently just over 600 references with abstracts and annotations in a RefShare format that is easily searchable with downloadable results. Of course, this is only a small sampling of the relevant materials and the bibliography will continue to be a work in progress.

We welcome your help in helping us identify more of items to include. I you have additional items to suggest for the bibliography please contact us for instructions on submitting items at initativ@ualberta.ca

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

Health Ethics Symposium–Ethics Education: Minding the Gaps

The John Dossetor Health Ethics Centre invites you to attend an exciting, one-day Health Ethics Symposium at the University of Alberta.

The theme of this year’s symposium is Ethics Education: Minding the Gaps.

Health Ethics Symposium
Ethics Education: Minding the Gaps
Thursday, 30 April 2009
8:45 a.m. – 4:30 p.m.
Stollery Executive Development Centre
5th Floor, Business Building
11211 Saskatchewan Drive
University of Alberta

Space is Limited

For further details, please refer to the attachment or visit www.ualberta.ca/bioethics

Please post in your area or feel free to forward this information to anyone that may be interested. Thank you.

We look forward to seeing you there!

About How We Talk About Autism

I was able to make it into New York last night and hear philosopher Ian Hacking give his keynote speech on How We Talk About Autism, for the Stony Brook University conference on Cognitive Disability: A Challenge to Moral Philosophy. Some reflections on Professor Hacking’s lecture are here—-the lecture has kind of “jump-started” my thinking for my book on language and neurodiversity.

1930s Drama Exposes Horrors of Forced Sterilization

Tomorrows Children

Tomorrow's Children

Tomorrow’s Children is a 1934 drama that intends to make a bold statements about everything that is wrong with forced sterilization.

Thanks to the magic of YouTube and the passage of time this film is both available for viewing and in the public domain. Continue reading

A New Zealand report on the cultural, ethical and spiritual aspects of pre-birth testing by Toi te Taiao: the Bioethics Council

some far reaching recommendations such as
Recommendation 9
There is insufficient cultural, ethical and spiritual reasons to prohibit the use of preimplantation
genetic diagnosis for sex selection for social reasons such as ‘family balancing’.

more hereTechnorati Tags: , , , , ,

What Sorts of Death Do We Choose?

The University of Manitoba’s VP-NET (Vulnerable Persons- New Emerging Team) now has a website in operation at http://www.umanitoba.ca/outreach/vpnet/ 

VP-Net looks at palliative care, euthanasia, and other end-of-life issues as they are applied to people with disabilities. The website is in its early stages but the site provides a quick way of getting acquainted with the project.