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. They were so sure that they would keep her at home no matter what that there was no need to “fear”. But the doctors wrote they had had the “fear” in the initial paper and then repeated it again this time.

Bed sore prevention was suggested by a doctor as a benefit from growth attenuation only “recently,” Ashley’s father wrote in his blog at the beginning of 2007, years after the request was reviewed by the committee. But Dr. Diekema and Dr. Fost say that it was part of the parents’ reasons from the beginning.

The authors didn’t hide mastectomy this time. It has long been out in the open thanks to the father’s blog and there’s no point in hiding any more. But the authors failed to include the parents’ “fear” that big breasts would sexualize Ashley to caregivers in their motivations.

What is most interesting in regard to reasons and motivations, however, is the big change in the reasons for hysterectomy. In the 2006 paper, Dr. Diekema emphasized that it had been “prophylactic” hysterectomy, necessary to prevent adverse effects from the hormone treatment. He said that it would bring some advantages “as an adjunct to high-dose estrogen treatment,” implying that the growth attenuation had been the main thing. He now says it was done to prevent pregnancy and menstrual discomfort. So saying, he has admitted that hysterectomy was done for its own reasons, independent from the growth attenuation therapy. At the same time he has also admitted dishonesty in his explanation of hysterectomy in his 2006 paper.

2. the length of the hormone treatment

Dr. Diekema wrote “she is now a little more than a year into therapy” in the initial paper that was published in October 2006. That would put the starting point of the hormone therapy some time in the late summer of 2005. But when Ashley’s father started his blog on the 2nd of January of 2007, he wrote, “We’ve just completed this treatment after two and a half years.” That would put the starting point some time in the summer of 2004. There was a gap by nearly one year.

Now in the new article, Dr. Diekema writes “Ashley underwent 2-1/2 years of high-dose estrogen treatment.” With this correction, he has admitted the father’s blog was correct and his information in his 2006 paper was not. But where is his explanation? Isn’t he responsible to fully explain why he reported the treatment period one year shorter initially? Otherwise, it looks as though the doctors had felt uncomfortable to go public with the true length of the treatment, lied in their paper and hoped that they could get away with it. They had no idea at that point that Ashley’s father would start a blog and reveal everything in the future.

3. the size of the committee

There was no specific information in the initial 2006 paper about the special ethics committee that reviewed the Ashley case. If you have an impression that the initial 2006 paper gave the details of the committee, it is a false impression. You will find how you were misled in the item 6 of my post, Mysteries and questions about the doctors’ medical paper. You will also find how the doctors have left the father’s misunderstanding about the size of the committee uncorrected in my other post, How big was the special committee?

Now in the April paper, Dr. Diekema writes “the case was referred to the hospital ethics committee. The meeting was attended by eleven members of the ethics committee, the parents, the patient, and three of the patient’s physicians.” He finally revealed a number that may suggest something of the committee size. Eleven members of the ethics committee. First question is, why now? Why not during the heated controversy at the beginning of 2007 when so many people were talking about the BIG 40-member ethics committee. Some defenders even counted the big size of the committee as a reason to trust the decision. I doubt that Dr. Diekema was unaware of the wrong information repeatedly mentioned by defenders and in the media. Why did he wait to reveal the number of the members of the ethics committee who attended the meeting up until now?

The next question is who the eleven were. As I have repeatedly pointed out in this blog, it was the SPECIAL ethics committee that reviewed the Ashley case. But the authors haven’t explained how special that particular ethics committee was. Saying eleven members of the committee attended the meeting is not exactly the same as saying the ethics committee had eleven members on it. The Salon got an insiders’ information that the special ethics committee that reviewed the Ashley case had been insider-only. Were the eleven insider members from the ethics committee? Was it how they comprised and named the meeting the SPECIAL ethics committee? Why did they do that? They have to explain because that would make the authors’ statement that the case was referred to the hospital ethics committee with an implication that it was the hospital’s regular ethics committee untrue.

4. absence of detailed information of the committee discussion

During the 2007 controversy, Dr. Diekema kept saying that the committee had discussed “carefully” but failed to reveal the specific details of the discussion itself. That’s what he is doing in this paper again. The authors write in Objection 25, “the authors………claim that the ethics committee failed to do an adequate job. These claims are speculative, and quite simply wrong. In fact, the committee did explore less invasive options and did engage in a comprehensive, ethical discussion that included many of the issues Quellette assumes were not discussed and many that she left off her list.” I find it simply unbelievable that anyone can ever write anything so naïve in an academic paper. He is not saying any more than “You say we didn’t do our job right, but just believe me. We did it!” It is not even an argument. Why can’t he just go ahead and provide with the specific information of what less invasive options were explored, what benefits and risks were discussed about each of these options and how, what were the reasons to turn down each of the options, what exactly were the issues they discussed that Dr. Quellette assumes were not discussed and how they discussed each, what exactly were the “many” issues they discussed that Dr. Quellette left off her list and what came out of the discussions? How can he accuse critics of their “incomplete knowledge of what actually transpired in the ethics committee meeting” when that’s exactly the information and explanation he has been required but has failed to give?

4. burden of proof

In the Ashley story of the Time of January 7, 2007, Dr. Gunther said, “If you’re going to be against this, you have to argue why the benefits are not worth pursuing.” The Diekema & Fost paper is based on the same logic when the authors conclude, ”we do not feel these arguments provide sufficient grounds to preclude similar use of these interventions for carefully selected patients who might benefit from them.” But it is such a perverse logic. Critics do not bear any burden to prove anything. They did not approve the “novel and untested” and “controversial” (the authors’ expressions in the 2006 paper) application of those invasive treatments or administer them to a disabled girl. It is the doctors, the authors here who are to bear the burden to prove by providing with “sufficient grounds” and clear and convincing evidences for their approval of the requests from Ashley’s parents.

It’s been three years since the case was first reported and Dr. Diekema obviously still feels the need to defend their decision by writing this paper. The authors of the paper list 25 different objections voiced during the three years. TWENTY-FIVE critical arguments, addressing only “distinct substantive arguments” at that. To me, these two facts are proof enough that the doctors have failed to justify their decision.

5. Dr. Diekema’s admission that he knew the necessity of court order

In Objection 25, they write, “While there is some legal basis for claiming that court review should be required for involuntary sterilization (Diekema 2003), there is no coherent legal or policy rationale for court review of growth attenuation.” With this, Dr. Diekema has proven what I pointed out in the post Dr. Diekema’s official views on involuntary sterilization: Why did he do everything he himself had said “Don’t” without doing things he had said “Do” in the Ashley case? Note the year of the publication. The year 2003. It is the year BEFORE the special ethics committee reviewed the request from Ashley’s parents. At the time of the meeting, Dr. Diekema clearly had an understanding that “court review should be required for involuntary sterilization.” Well then, what do we make of his many comments right after the hospital admitted the illegality of Ashley’s hysterectomy I pointed out here? They all contradict the understanding as well as what he wrote in this 2003 paper.

6. half of Dr. Fost’s “no court in medicine” theory left unsaid

In the last part of Objection 25, the authors argue that hospital ethics committees are good enough to make medical decisions without court involvement, mentioning Dr. Fost’s paper of 1992. They maintain that hospital ethics committees are trustworthy in themselves because they were originally created to replace the courts that failed to protect disabled children from life-threatening discrimination in medical practices. I haven’t read the paper, but I watched the webcasts of Dr. Fost’ presentations and panel at the 2007 Seattle Children’s Hospital bioethics conferences. I have also been carefully following the comments the ethicist has made on various issues in the media as you may see in the Links 7 post. I’m sure there’s a lot more in Dr. Fost’ theories.

You will know what I mean by watching the webcasts of his presentation, Parental Request for “futile” Treatment, and Panel on Day One of the conference from the same link post. He is a very radical proponent of the futile care theory. In the presentation, he says there are two different concepts of futility: qualitative futility and quantitative futility. By the latter he means that the futility decision is up to how the society measures the worth of the patient’s life. In fact, his is not a theory of medial futility of treatments but a theory of societal futility of patients. And he advises his audience, who are mostly medical professionals, very strongly not to go to courts for medical decisions because they won’t be able to do what they want that way. His message is “Just ignore the courts. No doctors have ever been convicted with liability in this country. We are safe. The courts should not have a say in medicine. Medical decisions are to be made by medical doctors.”

Dr. Fost did say something about hospital ethics committee’s protection of disabled children in the panel. But his tone of voice is clearly different from this Diekema & Fost paper makes it sound. When asked from the audience in Panel how they can assure interests of children are fully represented in ethics committees, he easily answered just including one or two persons from local community would suffice. Hospital ethics committee in his theory seems to me to be a justifying scheme to ward off judicial intervention and protect professional independence of medicine from judicial oversight. You will hear strong hatred of court intervention in his speech. You will also hear dislike and disdain of disabled children. Especially strongly when he said in the panel that disabled children had been killed in ancient times. I heard a challenge in his tone, “what’s wrong if we leave them to die with our futile care theory now?”

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5 thoughts on “Reading “Ashley Revisited: A Response to the Critics” by Dr. Dikema and Dr. Fost

  1. It just gets more bizarre, the arguments of the doctors and the father’s own words. His PowerPoint slide, shown and commented on here along with the article discussed here just continue to show the lack of appropriate care, or even logic, when dealing with Ashley and the awful treatments brought onto her. As to your first point, “reasons and motivations,” I find the father’s own words to be the most damaging, shown in the link I offered.
    Keep up the good work, this must be understood.

  2. Thank you, singledaddisableddaughter, for your nice comment and great information. Maybe we should turn our attention to the fact that this happened in Seattle to understand all these inconsistencies (there are many more pointed out in my blog) between the doctors and the father.

  3. I read your blog in full … found it when wondering about Ashley and Microsoft, actually … and was disappointed there was no contact page for you! Being a (single) dad with a severely disabled daughter I feel in a good position to speak on the topic as I did here for instance. Keep up the good work, and if you have any contact info, I’d love to know.

  4. Thank you, single_da/disabled_daughter, for your interest in my blog. I read your post and was amazed at your profound perspective. As for the closed comments in my blog, I’m not as good in commynicating or debating as in anayizing. I hope you’ll understand.

  5. Pingback: Dr fost | EzOfficeFlow

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