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. 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 a more generalized discussion. 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. The fact is,  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 two surgical interventions and that growth attenuation was the only part they could ever manage to justify.

3. The authors admit the fact the hospital reached an agreement with WPAS that there would be no more growth attenuation without court order 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 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. It is so safe and benign that it wouldn’t normally require an 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 it will be enough, they say. 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 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 comparison, tracking of adverse events, sharing of experiences and “greater awareness of the pottential value of growth-attenuatino therapy”.  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. Nice to find out that they know this. Actually, 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  a “useless concept” without definition, according to the authors.

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