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.    

Links 7: Norman Fost

 

The series of Links posts will remain subject to corrections and additions any time.

 

 

Who is Norman Fost?

 

http://sportsanddrugs.procon.org/viewsource.asp?ID=7367

(Sports and Drugs, ProCon org. with his background details)

http://bioethics.seattlechildrens.org/events/pediatric_bioethics_conference/norman_fost_md_mph.asp

(Seattle Children’s site, speaker’s profile for 2009 Pediatrics Bioethics Conference)

 

 

Norman Fost in the Ashley case controversy

 

http://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html

(Larry King Live, January 12, 2007)

http://www.scientificamerican.com/article.cfm?id=the-pillow-angel-case–th

(ScientificAmerican.com, January 5, 2007)

 

 

Norman Fost at Pediatric Bioethics Conference of the Seattle Children’s

 

http://www.seattlechildrens.org/home/about_childrens/press_releases/2005/07/000184.asp

(2005 Pediatric Bioethics Conference, Research and Innovative Therapy on Day One: Failure To Do Research Is Unethical, Panel, Minimal Risk Research on Day Two)

http://www.seattlechildrens.org/home/about_childrens/press_releases/2005/07/000185.asp

(2005 PBC, Day Two: The SSRI Story: A Cautionary Tale, and Panel)

http://bioethics.seattlechildrens.org/events/pediatric_bioethics_conference/2007_pediatric_bioethics_conference.asp#presentations

(2006 PBC, Parental Request for “Futile” Treatment, Panel on Day One; Christian Science and the Medical Care of Children, Panel on Day Two)

http://bioethics.seattlechildrens.org/events/seminars.asp

(seminar at Seattle Children’s , Performance enhancing drugs in sports, Oct 2, 2008)

http://www.researchchannel.org/prog/displayevent.aspx?rID=27359&fID=567

(Predicting Our Future: Genetic Testing in Children and Their Families, Part 1, of 2, 2009 Pediatrics Bioethics Conference)

 

 

Norman Fost, ‘the weirdo in Wisconsin,’ one of the most fervent steroid-use-in-sports proponents in America

 

http://spectator.org/archives/2008/01/18/intellectual-juicing

(Steroid Debate in NY, Fost and Savulescu joined in a team)

http://www.chicagotribune.com/features/lifestyle/chi-0115steroids_fostjan15,0,2159614.story

(all about Norman Fost as a steroid proponent)

http://bioethics.seattlechildrens.org/events/seminars.asp

(seminar at Seattle Chidren’s “Performance enhancing drugs in sports”)

http://www.realclearsports.com/articles/2009/02/rethinking_steroids.html

http://abcnews.go.com/2020/Stossel/story?id=7517412&page=1

 

 

Fost on reconsidering the dead donor rule

 

http://findarticles.com/p/articles/mi_m6875/is_3_20/ai_n27856351/

http://www.amazon.com/Organs-anencephalic-infants-Hastings-Center/dp/B0008JHUNS/ref=sr_1_4?ie=UTF8&s=books&qid=1211011557&sr=8-4

 

 

Fost on research ethics

 

http://www.nytimes.com/2007/11/22/science/22cnd-stem.html?ex=1353387600&en=a4f7cb65169a48dc&ei=5088&partner=rssnyt&emc=rss

(He is the one who gave Dr. Thompson a final push to creation of human embryonic stem cells.)

http://www.jsonline.com/features/29418489.html

http://www.amazon.com/Pondering-Genetic-Engineering-Pediatric-News/dp/B0009FFMDQ/ref=sr_1_2?ie=UTF8&s=books&qid=1211011557&sr=8-2

 

http://www.jsonline.com/news/waukesha/29332219.html

(human subject research in pediatrics, Fost says monetary compensation will do)

 

http://www.sciencedaily.com/releases/2007/11/071113165648.htm

http://tvnz.co.nz/view/page/536641/1446534

(he hates the privacy law as a hindrance to slow scientific researches)

 

 

Norman Fost on savior siblings

http://www.time.com/time/magazine/article/0,9171,973182,00.html

http://www.nytimes.com/1991/06/04/health/more-babies-being-born-to-be-donors-of-tissue.html?sec=health

http://www.amazon.com/Brothers-Ethical-Frontiers-Biomedicine-reviews/dp/B000989H6G/ref=sr_1_1?ie=UTF8&s=books&qid=1211011409&sr=8-1

 

 

Norman Fost in FDA panel

http://www.eczema.com.au/articles/517-elidel-and-protopic-warnings/

Dr. Diekema and Dr. Fost wrote a new paper on growth attenuation

Dr. Diekema and Dr. Fost with others wrote a paper on growth attenuation in the June issue of the Pediatrics. Check this up.

 http://pediatrics.aappublications.org/cgi/content/abstract/123/6/1556

Growth-Attenuation Therapy: Principles for Practice

Pediatrics Vol. 123 No.6 June 2009, pp. 1556-1561

 

Also see here for information about Dr. Fost. Actually there’s a lot more to know about him. More info will follow in future posts.

Dr. Diekema in the Hauser controversy

“Parents’ Rights, Judges’ Rules”. It is the title of a Newsweek story of May 19. The story is about the 13-year-old boy Daniel Hauser and his parents resisting chemotherapy for his Hodgkin’s lymphoma. There’s something that intrigues me very much in this article. Dr. Diekema is quoted here as saying, “If a parent makes a decision that in the estimation of the court places a child at significant risk of serious harm, the court can step in and protect that child.”

So Dr. Diekema knows what the court can do. He knows that the court can step in to protect children. He even knows that it is for the court to estimate risks of harm and not for parents who could convice a hospital ethics commitee nor for lawyers hired by parents. Obviously he also knew what the court can do back in 2003 when he wrote the paper, “Involuntary Sterilization of Persons With Mental Retardation: An Ethical Analysis” as we reviewed  here. He knows it now, he knew it in 2003. But he didn’t know what the court can do in 2004 when he dealt with the Ashley case. How come he temporarily forgot it?

Parents’ Rights, Judges’ Rules —– that’s the kind of title we should have seen on top of the stories reporting the Ashley case if due processes had been taken by the Seattle Children’s Hospital. Back in 2004, not in 2007 .

Mysteries and questions surrounding Dr. Gunther’s suicide

 1. Why was his suicide left unreported for 10 days?

 

Dr. Gunther killed himself  on September 30, 2007. It was reported on October 10 by the Seattle Post-Intelligencer and the Seattle Times. Why did it left unreported for 10 days?

 

2. Why did the Seattle Post-Intelligencer know the doctor’s death and wait without reporting it?

 

The Seattle Post-Intelligencer and the Seattle Times both reported Dr. Gunther’s suicide on October 10, 2007. Weird. Because his name had already been included in the King County September obituary on the SPi site. It was last updated October 9. There’s no way to know when the paper learned of his death, but they obviously knew prior to October 9 and waited before writing a story about the suicide of the doctor in charge of the Ashley case. But why did they wait?

 

The SPi  story is titled, “Death of physician in ‘Pillow Angel’ case is ruled suicide.” It writes, “His death, first reported publicly Wednesday, was ruled a suicide.” The Medical Examiner’s Office took 10 days to make the ruling. Did this ruling have anything to do with their wait? Did they wait for the ruling? But why? Did they wait at someone’s request? But who could make a newspaper wait without reporting someone’s death, suicide or not, when that someone was in the middle of a big national and international controversy?

 

3. Why did it take the Medical Examiner’s Office 10 days to rule his death to be a suicide?

 

4. Why did the Medical Examiner’s Office decline to say whether he had left a note?

 

The MSNBC story of October 11 wrote, “The King County Medical Examiner’s Office declined to say whether Gunther had left a note.”

 

 5. Why did the Seattle Times act fast this time?

 

The Seattle Children’s Hospital spokesperson said that there would be no comments from the hospital on October 10. But the next day, Mr. Michael Gunther, the doctor’s brother-in-law, and Dr. Diekema spoke to the Seattle Times and denied the relation between the suicide and the Ashley case. But remember? The Seattle Times didn’t write a story of their own during the initial controversy. Just one editorial was all they wrote. I find it rather odd that the local newspaper that had curiously kept uninterested in the case in January got all of a sudden keen on this suicide and was quick in getting those interviews to claim that the suicide was unrelated to the Ashley case. What is also curious is that Dr. Gunther’s brother-in-law and Dr. Diekema spoke exclusively to the newspaper. Dr. Diekema didn’t even return the call from AP.

 

6. The timing of his suicide in terms of the Katie case.

 

Alison Thorpe went to the gynecologist with her request in August. The case was first publicly reported in October. Dr. Gunther killed himself at the end of September. I doubt Dr. Gunther, the endocrinologist in charge of the very first case in the world, was not aware of the prospective second case or how it was developing across the ocean. Toward the end of September, the case was not publicly reported as yet but the UK doctors were waiting for the NHS decision about Katie’s hysterectomy. If they had got a “go”, its implication would have been big, making the Ashley Treatment something of  standard medical intervention internationally, subjecting so many disabled children to surgeries for social reasons. Or was it just a matter of coincidence? 

 

7. Why didn’t Dr. Gunther join the May symposium?

 

No one seemed to miss him at the time. But Dr. Gunther should have been the first one to be there to explain. Why was he not there?

 

8. A mysterious quote from Dr. Gunther in George Dvosky’s blog.

 

George Dvorsky, famous (or infamous) for the “grotesque” remark quoted in the father’s blog, wrote a long post on Dr. Gunther’s suicide in his blog on October 11 and accused “overzealous and vocal disability groups” for his suicide in the post. He revealed in the post a surprising episode that Dr. Gunther had “joined the Institute for Ethics and Emerging Technologies site” in the middle of the controversy in January 2007. There is a quote from what he says Dr. Gunther wrote to them.  [T]he article on the IEET site was one of the first sane and rational responses I came across. All of us here appreciate your support. I am hoping that in time more rational voices will increasingly make themselves heard, while the more reactionary ones fade away.

 

I searched on the IEET site but failed to locate the doctor’s comment. Dvorsky wrote five posts on the Ashley case in January 2007 but never mentioned the doctor’s contact with the transhumanists’ organization in any of them. Why hadn’t he revealed his contact earlier?

 

 

Links 6：Dr. Gunther’s suicide

News articles

 

Oct. 10, 2007

 

http://seattlepi.nwsource.com/local/335019_gunther11.html?source=rss

(SP-I, the title says his death is “ruled a suicide”)

 

http://seattletimes.nwsource.com/html/localnews/2003940574_webgunther10m.html

(Seattle Times)

 

 

Oct.11

http://www.msnbc.msn.com/id/21225569/

(MSNBC)

 

http://seattletimes.nwsource.com/html/localnews/2003941272_gunther11m.html

(Seattle Times)

 

Oct. 12

http://dailyuw.com/2007/10/12/uw-doctor-commits-suicide-amid-pillow-angel/

(UW Daily)

 

http://www.usatoday.com/news/nation/2007-10-12-3043064843_x.htm

(AP)

 

 

Blog articles

 

http://www.sentientdevelopments.com/2007/10/ashley-x-doctor-commits-suicide.html

(Oct. 11: George Dvorsky, accusing disability rights advocates for his suicide)

 

http://notdeadyetnewscommentary.blogspot.com/2007/10/transhumanist-suggests-doctors-suicide.html

(Oct 12: Stephan Drake,  reacting to Dvorsky)

A new “public engagement” version of the hospital’s Ashley story

The new January 2009 version of the Seattle Children’s Ashley story told by Dr. Wilfond at the beginning of the growth attenuation symposium goes like this; The public engagement. That’s what has been in our mind from the very beginning. That’s why the two doctors wrote the medical article. Ashley’s parents were kind enough to cooperate by starting the blog as you all know and widen the opportunity for public engagement. We also held that symposium in May 2007 in another attempt  to engage the public. The symposium was such an exciting occasion for us that the organizing staff tried to write a paper after the symposium. But we got such a big variety of opinions during and after the symposium, we simply didn’t know what to write. We thought we’d need to discuss the issue more widely and diversely. So we organized a working group. We decided to focus on growth attenuation therapy aside from breast bud removal and hysterectomy from the Ashley case, because it is the most engaging and most challenging in terms of risk-benefit considerations.

 

Dr. Wilfond’s claim that they have kept public engagement in mind all through from the beginning may not contradict within his story. But if you don’t go along with him and stay outside his story, you can easily see that it contradicts so many facts that are left untold here. For example, if they were so willing to engage the public from the beginning, why did they need a closed “special” ethics committee to review the parents’ request when there was a regular ethics committee that included people  from outside the hospital? Everything happened within the hospital. Everything was kept secret for two years. The doctors hid a great deal when they wrote the paper. We should not forget that it was the parents, not the hospital or the doctors, that disclosed everything. Compared with the blog, the paper is obviously a story created in order to hide rather than to report. Besides, if they organized the growth attenuation working group  to have further discussion and write a paper, why was there any need for the working group to reach a “compromise” when opinions were obviously devided among the members? Dr.Wilfond’s “public engagement’ story just doesn’t make sense.

 

It makes better sense if we think all they have been doing after the father’s blog is trying to patch up the gaps between their paper and the blog, revising and polishing their story, constantly mending holes and tears. They have also been hurrying to generalize the matter, trying to shift the discussion focus away from the Ashley case. And they might now feel safe enough to introduce this magic expression “public engagement” to consolidate their story. Maybe they hoped the magic expression would make us forget all the facts we know and swallow the new version they feed us. Maybe they hoped that the magic words would work and we would not wonder any more if it should be breast bud removal instead of growth attenuation that is the most engaging and challenging, as it was, according to the father’s blog, in their initial review. Maybe they hoped that we would then not wonder any more whose benefit or need it really serves to focus only on growth attenuation. Maybe they hoped that we would be led into imagining that the initial case was already fully discussed, reviewed and justified with public engagement and stop wondering why they try to prematurely generalize the matter. Maybe they hoped that we would not be inquisitive any more of what really happened in the Ashley case.

The damage the Ashley case has done and damages it can still do

I have been following the Ashley case for more than 2 years. I have been reading about other cases as well. Looking back on the Ashley case after so many cases of Emilio Gonzales, Ruben Nabarro, Sam Golubchuk, Amber Hartland, Karen Weber, Lauren Richardson, Janet Rivera, David Coronado Jr., O.T. , Kaylee Wallace, Annie Farlow and maybe more that I have missed, I am amazed at how symbolic the Ashley case was as a harbinger of accelerating devaluation of people with disabilities in medicine that would follow.

 

One of the worst unrecoverable damages done by the Ashley case was that the medicine clearly drew a line separating people with disabilities into two groups. Ashley’s father and the doctors kept saying that Ashley is different from other disabled people because she cannot communicate, because she is cognitively disabled, because she is heavily and permanently dependent on care givers. Dr. Diekema said January 12, 2007 in the Larry King Live,”I think it’s important to recognize here that Ashley is in a very different situation than Joni or all of the disability rights people who been speaking out on this issue. The reality is that Ashley will never be a person who will be capable of expressing her feeling or opinions about anything or even understanding them. She will remain a six-month-old in terms of her ability to understand. She’s always reliant on her parents and always will be.” So saying he set a standard and drew a line to segregate some people with profound disabilities from the others. Segregation between those with dignity to be respected and those without. We were shocked at Ashley’s father’s rationale and then at Dr. Diekema’s justification. I found it shocking that people didn’t get so shocked any more when the same rationale was repeated in the Katie Thorpe case some months later. Now it gives me a creep to see how the line drawn by the Ashley case eerily overlaps the line used in futile care decisions, or sometimes even a situation described as “too unbearably inhumane and undignified not to be allowed to die” by some people with very radical opinions about euthanasia.

 

Growth-limiting medical interventions, futile care theory, legalization of assisted suicide, selective abortion, prenatal/preconception genetic tests. They may be different issues, but those arguments are all having the same effect on general perception of the disabled. The line between the brain dead and the persistently vegetative is blurring. The line between the persistently vegetative and those with severe cognitive disabilities is also blurring. The lines are moving closer and closer. Sometimes I wonder if nobody really cares about the actual state of the person any more once subjective labels like “like a baby,” “miserable,” “unbearable” or “devastated” are applied, or once a doctor or a family member decides according to his or her values that the person should die. It is just as if it was OK to do anything to people beyond that line. Joni Tada said in the same Larry King Live debate on the Ashley case, “I think you need to remember that society, if it can find a way to cut costs by removing proper care for people with disabilities and instead place it with these surgical removal of body parts, society will do it. Given the opportunity, society will always move in the direction of convenience for the masses at the expense of people with disabilities.” I’m amazed that someone warned like that as early as in the very first stage of the Ashley treatment controversy. I am chilled at the way her words are rapidly becoming reality now.

 

Only, there is something unique in the Ashley case. I think the doctors knew what they were doing was ethically questionable back in 2004. I wonder if they ever think about the extent of the damage they did by their justification of the case and about further damages they can do by their current endeavor to generalize the treatment. The doctors were not so thrilled at the idea of growth attenuation in 2004. They didn’t find it to be so wonderful as to be widely promoted. They wouldn’t otherwise have kept the case secret for so long. Why are they so eager now to generalize the treatment? It is obviously not because they really believe in the treatment, but because they have their own motivation to. I wonder if they think of further damage they can do by promoting the treatment and their conscience ever suffers. Maybe I am just dreaming a silly and naïve dream, but I still wonder if someone in the hospital, in the media, or in WPAS, anyone at all for I believe there are people who know, will eventually come out to tell the truth and try to undo the damage. Please.

Mysteries and questions surrounding the Katie Thorpe case

 

Many people may think that the Katie Thorpe case in UK is an isolated episode, though it was strongly influenced by the preceding Ashley case. Many may also believe that Alison Thorpe, Katie’s mother appeared in the media for the first time in October 2007 when her request for Katie’s hysterectomy was reported. Actually, Alison had been in the very first stage of the Ashley treatment controversy, standing tall as a defending voice in the UK media. You’ll find two news articles here to learn what she said in January 2007. Reviewing the Katie case with mysteries and questions surrounding the initial US case in mind, you might find some mysteries and questions in this UK case as well. Then, the two cases might not look all that isolated any more. Some of the mysteries and questions that make me wonder if the Katie case was actually part of the Ashley case are as follows.

 

1.      Didn’t Alison contact Ashley’s parents?

  

According to the Echo story of January 10, 2007, Alison Thorpe heard about the Ashley case on the radio, got disturbed at the critical comments and wrote to the program right away saying she supported the decision and wanted the same for her disabled daughter. She soon “found herself in the media spotlight.” So, it says “For the past few days Alison’s voice has been heard on national radio and television.”

 

You will just have to read some of the news stories of October 2007 here to know that Alison Thorpe is a very strong woman with an aggressive streak. I find it rather difficult to imagine this woman didn’t contact Ashley’s parents. To personally cheer them. And more importantly to ask for information and advice to realize Katie’s hysterectomy. Their email address was right there in the parents’ blog. They were so eager to help and actually receiving hundreds of emails from parents of children like Ashley all over the world. Alison Thorpe has never mentioned such contacts. But did she really not contact Ashley’s parents?

 

2.      Why did it take Alison seven months to go to the doctor with her request?

 

Alison made it totally clear that she wanted Katie’s hysterectomy in January 2007. But according to the news articles, she made the request in August. It took her 7 months to finally act. It doesn’t really sound like someone with her character. Why did it take her so long? What was she doing during the 7 months? Was she preparing for the action she would take in August? But what was there to do in preparation?

 

3. Didn’t Dr. Phil Robarts contact Dr. Gunther or any other physicians of the Seattle Children’s?

 

Put yourself in the shoes of Dr. Phil Robarts, the consultant gynecologist at St John’s hospital who was approached by Alison with her controversial request in August 2007. Wouldn’t you normally contact the physicians of the first case for information? Especially when you are a gynecologist lacking expertise of developmental disabilities? No such contacts were mentioned all through the Katie case controversy. But did he never contact Dr. Gunther or any other physicians involved in the Ashley case?

 

Dr. Robarts couldn’t be unaware of the Ashley case and the controversy it had brought about. He had to be aware of the implication of Alison’s request that if granted, it would be the first hysterectomy on a child with developmental disabilities for a social reason in UK. Was he aware also that it would be the second case internationally to follow the Ashley case? Was he aware of the implication of the prospective second case that would generalize the ethically controversial use of the medical procedure, also making a strong impression that there are international needs for the Ashley treatment? Was he aware of all that when he decided to support Alison’s request?

 

4.      What changed the doctors’ mind?

 

The Times wrote on October 8, 2007, “Doctors initially suggested contraceptive pills and injections to stop Katie’s periods starting but Ms Thorpe ruled them out because of the risk of her wheelchair-bound daughter suffering from thrombosis.” There’s a huge distance between contraceptive pills they initially suggested and hysterectomy they finally agreed to. What was their reasoning for the jump? What made them change their minds?

 

5.      Media bias

 

“Why I want surgeons to remove my disabled daughter’s womb,” “Why this mother should be allowed to have her disabled daughter sterilized,” “The humbling true story of why this mother wants her disabled daughter to have her womb removed,” and then “Doctors refuse mother’s request to remove disabled daughter’s womb ‘because of charity backlash’.” These are the titles of the Daily Mail stories on the case. Looking at these titles alone may be inkling enough that the newspaper wrote solely from Alison’s standpoint of view all along. (Read these stories, too. ”The humbling true story” is particularly long and emotional.)

 

An interesting fact is that the Daily Mail was, in the first days of the Ashley treatment controversy in January, one of the very few newspapers whose stories contained the two crucial pieces of information that would soon disappear from the media: one that Ashley’s father is a software executive and the other that he made a Power Point presentation in the ethics committee.

 

Their January 5 article is curiously sentimental, often using emotional expressions like, “it became painfully apparent” that Ashley would be mentally disabled, “a heartbreaking series of visits” to specialists, “tragic tale,” “heart-wrenching,” “their predicament” and the father’s blog is described as “ a humbling message.” The story is closed by writing, “Today Ashley is at home, surrounded by love, and light enough still to be easily transported on family trips, proof enough, her father would contend, that he made the right decision. His detractors however might argue that in this instance it is perhaps just as well that the little girl at the center of the controversy is unable to understand the furor surrounding her.”

 

6.      Why did the US media ignore the Katie case?

 

In the Link 5: the Katie Thorpe case in UK post, there are links to 14 news stories that reported Alison’s request in October 2007. All but one (CNN ) are by the UK media. In spite of the huge impact and implicationin the Katie Thorpe case bore in terms of the Ashley case, the US media kept curiously quiet. Why did they keep ignoring this interesting case, which was obviously prompted by the case that had brought about a heated controversy in their country just a few months before?

 

7.      Why didn’t anybody go to Ashley’s parents, Dr. Gunther or Dr. Diekema for comments?

 

Given the development of these two cases, Ashley’s father and the two famous doctors would normally be the first for the media to turn to for comments. But no newspaper mentioned such attempts as far as I know. Did anyone ever try the contact and fail? Or nobody ever tried? All the UK media simply kept their hands off of Ashley’s parents and doctors during the Katie Thorpe controversy, while the US media kept ignoring the case in tern. Isn’t it a little bit unusual?