Revisiting the father’s blog: his unique interpretation of law and Ryan’s article

The other day, I was revisiting the blog started by Ashley’s father in search for some information unrelated to the subject of this entry, and my attention was drawn to a part. I hadn’t heeded that part much so far. But just after reading the legal paper written by Christine Ryan, I was intrigued by that particular part. Ashley’s father wrote explaining his consultation with a lawyer at the request from the special ethics committee,

Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might choose to become pregnant at some future point, and should have the right to do so.

I didn’t know the law protects only disabled “women” from involuntary sterilization. I didn’t know that the law only applies to people with “mild disability.” I didn’t know that only women with mild disability should have “the right” to become pregnant, either. I wondered if this has been really the lawyer’s interpretation of the law and revisited the lawyer’s letter attached to the WPAS investigative report as Exhibit O. I found the first half of the above quoted blog part goes along with the lawyer’s advice, but the latter half goes a little too far from it.

The lawyer wrote, “Ashley will never be able to care for a child or even to understand the connection between sexuality and pregnancy,” but did not mention “the right” to get pregnant, disability mild or severe.  I imagine the lawyer’s interpretation of the law in the letter was somehow stretched a little farther into a more unique and creative version as Ashley’s father tried to interpret the lawyer’s interpretation. Thus a new interpretation of the law, original by Ashley’s father, that the law applies only to women with mild disability and that women with severe disability are not entitled to “the right” of reproduction because they can’t choose to be pregnant due to their disability. That just makes me wonder how did Christine Ryan come to share the same uniquely radical rational in her paper.

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, though I don’t understand how it is relevant here in that children with profound mental disabilities are not unconscious, even if Ryan does not gravely misunderstand the Convention itself.

After that, the author discusses the legal standards currently used in reviewing requests of sterilization of profoundly incompetent individuals. It is a lengthy and complicated review quoting many scholars and mentioning previous court decisions with profoundly incompetent persons involved. Ryan concludes the current hybrid standard using both “surrogate decision making” and “best interest” standards is confusing and is not good enough. I think she means it is at least not good enough for courts to approve “the Ashley Treatment”. She writes, “For a court to legally approve of the application of the “Ashley Treatment” there needs to be a flexible, yet constitutional model in place that does not create confusing legal precedent, ” and proposes that courts should take Dr. Rebecca Dresser’s “revised best interests test” instead. Dr. Dresser recognizes, just like Dr. Diekema, profoundly incompetent persons like Ashley as inhabitants of “different worlds than competent individuals.” What Ryan says here is in short: children like Ashley with profound disabilities are totally different from us. Just imagine “the small subjective world in which the incompetent person lives”, and consider “extrinsic interests” such as psychological, emotional, familial or societal benefits, Oh, and don’t forget quality of life considerations. “These considerations are more important in the particular situation than the fundamental rights which are threatened by the proposed treatment.”  Applying this new standard to the “Ashley Treatment”, you will know it can be a reasonable choice for profoundly incompetent children.

 The paper concludes saying, “If the parents have presented sufficient clear and convincing evidence before a court showing that administering the ‘Ashley Treatment’ is more important to the child than her fundamental interest in procreation and bodily integrity, then the request is extreme, but nonetheless reasonable, and courts should carefully examine whether the procedure is permissible in the particular case”.

What I find really interesting is that the author admits that it is impossible for parents with the burden of proof to argue successfully that the “Ashley Treatment” would be in the best interest of their disabled child by the current legal standards. (I wonder if there have already been any unreported requests turned down by courts.) But then, I imagine it would be a reasonable attitude for unbiased lawyers to conclude that the “Ashley treatment” is too extreme to be legally permissible, therefore something that we should abstain from. What kind of lawyer would say, “OK, then, let’s think of a new standard to facilitate courts to approve it”?

Links 9: CNN interview with the parents in 2008

CNN stories

 ’Pillow angel’ parents answer CNN’s questions

CNN, March 12, 2008

Disabled girl’s parents defend growth-stunning treatment

 CNN, March 12, 2008

 

Media stories

 Parents: ‘Ashley treatment’ successful

UPI, March 12, 2008

 Parents Defend Hysterectomy, Growth-Stunting of Disabled Girl

 Fox News, March 13, 2008

 

Response from Ashley’s father

http://ashleytreatment.spaces.live.com/blog/cns!E25811FD0AF7C45C!1838.entry

 The Ashley Treatment, March 12, 2008

 

Responses from transhumanists

Ashley X parents speak out and defend their actions

 Sentient Developments, March 13, 2008

 Ashley X’s Parents Declare Treatment a Success

Institute for Ethics and Emerging Technologies, March 16, 2008

 

Responses from disability community

 Ashley X Parents Continue to Advocate for Unnecessary Medical Interventions

 F.R.I.D.A. March 12, 2008

 ACTION ALERT…More Ashley X

F.R.I.D.A. March 12, 2008

 Ashley Treatment: First Year Anniversary

Bad Cripple, March 12, 2008

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.

UW Disability Studies Program symposium “Eugenics and Disability”

 The University of Washington Disability Studies Program will present a public symposium, Eugenics and Disability: History and Legacy in Washington, on October 9th.

http://eugenics.washington.edu/index.htm

Browzing the sumposium site, I just find some things I’d like to point out here,  though I’m sure (and I also hope) they are totally unrelated to the discussion at the symposium.

First, the last one of the sponsor list there, Treuman Katz center for Pediatric Bioethics at Seattle Children’s Hospital is where Dr. Diekema we remember from the Ashley case belongs. The center set up a working group for evaluating (justifying) growth attenuation and sponsored a symposium in January in an effort to make the therapy applicable to severely disabled children in general. (By the way, I sense a transhumanistic whiff in some of those sponsors and supporting organizations, but of course it must be my imagination.)

Secondly, if you visit the agenda page of the symposium, you will find someone familiar from the same case. Moderating in the afternoon program is Mr. David Calson of Disability Rights Washington. Ring a bell? The first author of the WPAS investigative report of the Ashley case published in May 2007. He was the one who made the hospital promise that there would be none of the three “Ashley treatment” interventions without court orders. Strangely, though, he has somehow forgotten all about the promise and is now a member of the growth attenuation working group that is said to have found the therapy good enough to consider, without court order, for severely disabled children like Ashley. I’ve been kind of worried about his conscience, but I can see there’s no need to worry. It seems quite intact.

All this looking back reminds me of the fact that the initial Ashley paper of 2006 mentioned eugenics. There is a part Dr. Diekema and Dr. Gunther wrote about forced sterilization as “past abuses against this population.” But then they added right away;

These decisions were based not on the best interest of the patient but rather on the perceived interest of society and, in some cases, the interest of parents or caretakers.

The lessons of these and other abuses must be remembered, but past abuses should not dissuade us from exploring novel therapies that offer the potential for benefit.

 In the Ashley segment of Larry King Live of January 12, 2007, when Ms Joni Tada expressed her concern about future eugenics, Dr. Norman Fost said;

This claim of eugenics. Eugenics is about coercive government policy to sterilize people for fear that they would make more retarded children. That’s not what’s going on here. This is not state action. She did not have her uterus out because of fear of creating retarded children. It was done to help her, not society. 

Maybe it is not eugenics in 2009 to alter disabled people by technology and genomics or whatever will become available in our wonderful future so long as it is to help them or it is in their best interest?

Links 8: Dr. Diekema’s lecture at Calvin College in January 2008

Dr. Diekema gave a lecture, “Live, Jusitce, & Humility: A Bioethicist Meets the ‘Pillow Angel’” at Calvin College, January 18, 2008. 

The lecture page of the Calvin College site (RealAudio archive link included)

http://www.calvin.edu/january/2008/diekema.htm

 

 Dr. Diekema’s Inner Campus TV interview at Calvin College after the lecture

(Find IC812 in the page. That will be Dr. D’s interview.)

http://www.calvin.edu/innercompass/icaudio_feed.xml

 

He spoke before the lecture, too.

 The email interview with Dr. Diekema by Spark, the Calvin alumni magazine

http://www.calvin.edu/publications/spark/2007/winter/diekema.htm

 

“Pillow Angel” doctor speaks on controversial care (The Grand Rapids PRESS January 14, 2008)

http://www.mlive.com/news/grpress/index.ssf?/base/news-40/1200321927113130.xml&coll=6

 

What is ethically OK in treating a disabled child? Doctor in controversial case to speak Friday (Kalamazoo Gazett January 15, 2008)

http://www.mlive.com/features/kzgazette/index.ssf?/base/features-0/1200412252165240.xml&coll=7

  

Reports of the Calvin College lecture

 MLive.com, January 18, 2008

http://www.mlive.com/news/index.ssf/2008/01/debating_ashleys_treatement.html

 

Mlive.com (Chronicle News Service) January 19, 2008

http://blog.mlive.com:80/chronicle/2008/01/group_debates_ethics_of_disabl.html

 

F.R.I.D.A. January 18, 2008 (a report of an activist who attended the lecture)

http://fridanow.blogspot.com/2008/01/michigan-activists-at-ashley-x-debate.html

 

the Roving Activist’s Blog January 31, 2008

(a report from a Michigan ADAPT activist who attended the lecture)

http://dread1mynproductions.com/rablog/2008/01/30/michigan-adapts-ashley-x-action/

 

BETHANY’S BLOG　 January 19, 2008

(a blog post of someone who attended the lecture)

http://bchammer.blogspot.com/2008/01/ashley.html

  

Dr. Diekema’s speaking engagements

 According to the staff speaking engagement page of the Trueman Katz Bioethics Center web site, Dr. Diekema gave 18 lectures in all in 2007 and at least 4 of them were about the Ashley case. He gave 13 lectures in all in 2008 and at least 7 of them were about the case including the one at the Calvin College. He gave another one on the case in January this year at Boston Children’s Hospital.

http://bioethics.seattlechildrens.org/events/faculty_and_staff_speaking_engagements.asp#diekema

the abstract of the one given at the American Science Association is on page 6 of the annual meeting program below.

http://www.asa3.org/ASA/meetings/georgefox2008/GeorgeFox_abstractbook.pdf#search=’ASACSCA%20annual%20meeting%202008‘

 

 Dr. Dikema’s comments in the media in 20008

 Willing, but waiting: Hospital ethics committees

AMANews, January 28, 2008

(Dr. D’s comment on ethics consultation:

Someone says in this article that ethics committee would not be approved if it were drug.)

http://www.ama-assn.org/amednews/2008/01/28/prsa0128.htm

 

Star Pediatrician Fights Accusations of Sex Abuse

The New York Times, August 6, 2008

(Dr. D’s comment on a famous pediatrician’s sex abuse scandal)

 http://www.nytimes.com/2008/08/06/us/06pediatrician.html?

 

Time to get tough? States increasingly offer ways to opt out of vaccine mandates

By Kevin B. O’Reilly,

AMNews, September 8, 2008

(comment on parental refusal of vaccine)

http://www.ama-assn.org/amednews/2008/09/08/prsa0908.htm

 

Dr. Diekema’s medical paper in 2008

 COMMENTARY : Public Health, Ethics, and State Compulsion

Douglas S. Diekema MD, MPH

Journal of Public Health Management & Practice

July/August 2008, Vol. 14, No. 4, P.332-334

http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=799304

The Seattle Children’s and the Gates Foundation are hand in hand as “global health leaders”

According to this article of April 24, 2009 on the Medical News Today, the Seattle Children’s Hospital and the Gates foundation are hand in hand as “global health leaders” in an effort to eliminate prematurity and still births. The article is about a big international conference in Seattle, sponsored by the Global Alliance to Prevent Prematurity and Stillbirths(GAPPS), the Bill & Melinda Gates Foundation, March of Dimes, PATH, Save the Children, UNICEF and WHO. The invitation-only conference was held May 7-10, 2009.

The article says ;

GAPPS is conducting a comprehensive landscape review of published and unpublished data on premature birth and stillbirth research and interventions, which will inform the conference. The review developed by an international team of investigators and funded by the Bill & Melinda Gates Foundation, will be released post-conference.

Actually, GAPPS is a project launched by the Seattle Children’s Hospital in 2007. According to this Seattle Times article, $1.5 million was provided at the time from the Bill & Melinda Gates Foundation.

There seems to be people who think that this blog is implying that there was some kind of deal between the hospital and the foundation or Microsoft or that  there was any pressure from them over the Ashley case.  But it is not.  This blog is simply pointing out the fact that there has been a close relationship between the hospital (and the university) and the Gates Foundation. The kind of partnership between them as we see now in the GAPPS launce in 2007 and its following researches or in the IHME creation in 2008 does not look like anything easily formed in a year or two. It should be formed on a long-lasting relationship between them. If the relationship was preexisting when Ashley’s father made his bizarre requests about his disabled daughter in 2004 , as this blog has already pointed out here and here,  wouldn’t that have put the hospital and its doctors in a very awkward position, politically, even without any coercion or pressure or any deals offered from anyone,  if Ashley’s father is a Microsoft executive? Does the close relationship not raise a question of conflict of interests in the decision by the special ethics committee of the hospital in the Ashley case? Especially when they needed a special ethics committee excluding outsiders in the case, not the regular ethics committee in their ethics consultation system that included outside members?  The hospital has more explaining to do in regarad to the questions surrounding  the specific case of Ashley’s before moving on to any generalized discussion on the pretence that the fist case is already fully justified. Because it is not.

Dr. Diekema’s latest paper is AAP statement on forgoing nutrition and hydration 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 is chair of the AAP committee on Bioethics now, by the way.

The mystery of the definition of profound cognitive disability in the new growth attenuation paper

 

In their paper published in the June issue of the Pediatrics, the authors define profound cognitive disability “as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care after careful attempts at training, and the inability to understand or express oneself in nuanced ways”. Prior to the definition they acknowledge that there’s no precise definition of profound cognitive disability and that it is hard to define because cognitive disability lies in a continuum. So the definition is comprised specifically “for purpose of growth attenuation therapy.” But wait just a minute. Not being able to walk. That’s physical disability! It is definitely physical disability no matter what cognitive state the person is in. You can also be completely dependent on others in nearly every aspect of daily living, if you are severely physically disabled, with or without cognitive disability. Physical disabilities can make it extremely hard to express oneself and give a wrong impression that the person doesn’t understand simply because he/she is not given a chance to prove in a way possible for them that they understand. Let’s call physical disabilities “profound cognitive disability”, just for the sake of convenience, just “for purposes of growth attenuation therapy,” shall we? What kind of definition is that?

 

That reminds me of a question that has been nagging me since the 2007 controversy over the Ashley case. Does growth attenuation therapy really address care burden and QOL problems that arise from profound cognitive disabilities? Reducing care burdens as in transferring children from bed to wheelchair, or bathing them, by keeping them smaller and lighter. Reducing chances for bed soars and makeing it easier for them to join family activities. These are all about physical disabilities, not about cognitive disabilities. Children with severe physical disabilities who are not cognitively disabled at all will have the same benefits from the therapy.

 

Growth attenuation is a therapy to address problems caused by severe physical disabilities. Growth attenuation is, in fact, all about physical disabilities, not cognitive disabilities. Profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded unethical if applied to physically disabled children without cognitive disabilities into something that looks OK when it is applied to children with profound cognitive disability. That’s why they have to “include” physical disabilities in their definition of profoundly cognitive disability “for purpose of this therapy”. But I doubt that will keep physically disabled children without cognitive disabilities safe from the therapy once it becomes standard medical practice. The article authors don’t forget to add “at the present time” when they suggest that growth attenuation should be limited to children with profound cognitive disabilities.

 

 

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 just 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 about cognitive disabilities but 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 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 the 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. First, what was most strongly questioned and criticized was ethical robustness of “the decision” that gave a go to the set of the interventions. They still have a lot of explaining to do about their decision in the first case before they are entitled to proceed to more generalized discussion on specific interventions. Secondly, in the 2006 growth attenuation paper, Dr. Gunther and Dr. Diekema explained Ashley’s hysterectomy as a pre-treatment measure to prevent adverse effects from the hormone treatment, making the surgery an accompaniment of growth attenuation therapy. Actually they have been reluctant to discuss hysterectomy or breast bud removal since the 2006 paper all through this controversy. They have been trying to lead public attention away from these interventions by focusing excessively on growth attenuation. I wonder if they knew from the very beginning that it would be very hard to fully justify the surgical intereventions and that growth attenuation would be the only part they could ever manage to justify.
3. The authors admit the fact the hospital reached an agreement that there would be no more growth attenuation without court order with WPAS in May 2007. But they simply brush it away as too extreme and unnecessary. Court order (they say court review, not court order) promised in the agreement is just denied as “inappropriate”. I am curious to know what the hospital and WPAS have to say about this part of the paper. I have checked some on how the agreement has been implemented or how it has not for that matter. Something truly mysterious seems to be going on. There will be another post about this.
4. According to the authors’ rationale, the therapy is a “benign” one with very little harm risk. They say, it is so safe and benign that it wouldn’t normally require ethics committee review unless there is disagreement between parents and physicians, but considering the publicity and controversy of the first case, ethics committee review may be good and that will be enough. But in my view, what was most strongly questioned was that very professional ethics of the ethics committee of the hospital in the Ashley case. The big question here  is whether ethics committee is really all that trustworthy considering what happened in the Ashley case.
5. They use unanimity of the ethics committee decision in the Ashley case as a proof for ethical appropriateness of the therapy. But as I reviewed here, they didn’t unanimously “support” the parents’ requests as the authors claim. They agreed unanimously that they would not oppose.
6. The authors mention clinical trial, making it a part of a larger study, registry, outcome data It seems to me that they are implying making a research of the therapy just like the plan Ashley’s father has in his blog.
7. They propose calories control along with growth attenuation therapy, saying it is not height but weight that is the more important in size reduction. Dr. Wilfond of the Seattle Children’s wrote in the email discussion on the Scientific American of January 5, 2007, “an alternative approach to attenuating growth is to adjust the caloric intake. In fact, since such children are provided nutrition through a feeding tube, the family and physicians must make a conscious decision about their goal for the size of the child. Limiting calories to reduce growth velocity will result in a shorter height.” Why don’t they just propose that alternative then? Why high dose estrogen therapy first and calories control to accompany the treatment? 
8. The authors admit that the height reduction outcome from the therapy is only approximate guesswork and even that there isn’t enough evidence to justify its general application. They even add that informed consent should include information of the uncertainty of risks and benefit. But on the other hand, they are on the premise that the therapy is effective and beneficial as they argue that the therapy should be proposed as a choice for parents of children with profound cognitive disability. Finally they conclude that the therapy should be proposed to parents when the child is three years old. Three years old, all of a sudden. I don’t see any explanation about the age.  
9. Dignity is simply a “useless concept” without definition, the authors say.