Dr. Diekema’s own conditions disapprove Ashley’s hysterectomy

 

Dr. Diekema wrote the following paper on involuntary sterilization of people with mental disabilities in 2003.

 

Involuntary sterilization of persons with mental retardation: an ethical analysis.

Ment Retard Dev Disabil Res Rev. 2003; 9(1):21-6 (ISSN: 1080-4013)

 

Its abstract is available here.

 

According to the abstract, Dr. Diekema gave four conditions for involuntary sterilization of mentally disabled women to be considered. He said it should be considered only when a) the procedure is necessary, b) sterilization would serve the best interests of the mentally retarded person, c) less intrusive and temporary methods of contraception or control of menstruation are not acceptable alternatives and d) procedural safeguards have been implemented to assure a fair decision-making process.

 

How could he approve only one year later the parents’ request for Ashley’s hysterectomy that did not meet his own conditions?

 

                ————–

 

This paper is actually mentioned indirectly in the Gunther & Diekema paper about growth attenuation (2006). The latter says that ethical consideration of hysterectomy decision making was discussed “elsewhere” and directs readers by the note number to the above paper in the references.

 

This raises two more questions.

 

1. Why did they write about hysterectomy only in the context of side effect prevention in the growth attenuation paper?

 

The doctors’ initial paper on growth attenuation writes about Ashley’s hysterectomy only in the context of side effect prevention in hormone therapy. Just as if Ashley’s hysterectomy had been a necessary evil for side effect reduction. It is also only “as an adjunct” to the “prophylactic” hysterectomy coming as a set with the hormone treatment that they mention advantages of hysterectomy; elimination of future menstrual complications (whatever it means), future need of long-term progesterone treatment and future possibilities of cancer. But judging from what he had written in 2003, he knew that hysterectomy is not anything so insignificant as you could just go ahead and do as “prophylactic” treatment for hormone therapy.

 

2. Why did they buy the rationale given by the parents’ lawyer that it was not sterilization?

 

The mention of the 2003 paper in the 2006 growth attenuation paper shows that Dr. Diekema regarded Ashley’s hysterectomy as involuntary sterilization. With that recognition, why did he buy it when the lawyer hired by the parents presented a dubious rationale that they didn’t need a court order despite the state law requiring one because their objective was not sterilization?

When were they going to write a paper about the breast bud removal portion?

 

 

As was mentioned in the post Dr. Diekema did hide the breast bud removal, when Dr. Carole Marcus criticized the doctors’ paper for its omission of Ashley’s breast bud removal, Dr. Gunther and Dr. Diekema wrote in their reply, “ Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation.”

 

So they maintain it was a paper reporting the growth attenuation part alone. OK, if they say so. But then, where’s another paper about breast bud removal?  They were obviously aware that breast bud removal raised a set of issues. Unrelated to growth attenuation they might be, but issues none the less. The doctors were also aware that the issues were ethically knottier than those raised by growth attenuation. Ashley’s father reports in his blog that the breast bud removal part of their request was “the biggest challenge” to the doctors and the ethics committee. Certainly they couldn’t write a paper on the growth attenuation part of what had been done to Ashley and go without writing another on the part that they knew was ethically more challenging than growth attenuation. When were they going to write the paper?

 

With the estrogen therapy, they may have wanted to wait till they made sure about side effects, but if the breast bud removal was a simple, “minor” surgery as they assert it is, there seems to be no reason they had to wait after Ashley’s surgery to write a paper and report this very unique application of a medical procedure. They had more than two years to do so before they wrote the growth attenuation paper and even after that, they had two more months before Ashley’s father reported it in his blog.

 

When were they going to write a paper about the breast bud removal portion, if they were going to report it at all?   

Dr. Diekema’s Ashley presentation at ASA/CSCA annual meeting

The joint meeting of American Scientific Affiliation and Canadian Science and Christian Affiliation is being held Augst 1-4, at George Fox University. Dr. Diekema’s presentation titled, “Love, Justice, and Humility: Reflections on Bioethics and Medicine” was the first plenary session for Saturday. According to the meeting report #2 on the association site, it seems to have been the same as the presentation he gave at the Calvin College in January. But its abstract on the page 6 of the program worries me a great deal. Especially the part as below:

 

Today, many physicians and institutions are struggling with whether to offer similar treatment when parents request it…………The presenter, an author of the original paper, will ……..address whether the use of growth attenuation therapy can ever be justified and will examine the constraints that should be placed on the use of such treatment. In addition, the case will provide a framework for understanding the bioethical issues that arise in the use of novel and controversial medical treatments.

 

So what is Dr. Diekema trying to do here? Is he defending his own case or is he trying to pretend as a disinterested third party ethicist?  He should explain his own case thoroughly before trying to conceptualize growth attenuation therapy like this and prematurely generalize the matter.

 

Dr. Diekema is basically a cautious ethicist, only contradicts himself in the Ashley case

 

I imagine the Ashley case has left many people wondering what kind of ethicist Dr. Diekema is. To find out, we have what he has said on other pediatric ethics issues to turn to. He has spoken and written on issues like vaccine refusal, circumcision, and conflicts between parents and physicians in medical decision making as linked below. (His comment on genetic testing in children is in my previous post.)

 

 

①COMMENTARY : 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

 

②Delicate decision: To circumcise or not?

By Marnell Jameson, Special to the Times,

The Los Angels Times, March 31, 2008

 

③Presentation

Understanding Differences in Conflicts Surrounding the Medical Care of Children.

 

2007 Pediatric Bioethics Conference

The Seattle Children’s Hospital Trueman Katz Center for Pediatric Bioethics

You will find the webcast and his powerpoint presentation in the link above. His presentation is the last one of the program.

 

④Presentation

The Case of Vaccine Refusal: Parent Conviction, Child Best-Interests and Community Good

2006 Pediatric Bioethics Conference

The Seattle Children’s Hospital Treuman Katz Center for Pediatric Bioethics

 

Reading these documents and watching the webcasts, you’ll be surprised to find how cautious he generally is as an ethicist. He is an ethicist who highly values legality and harm principle. In his recent paper on the Maryland vaccination refusal case（① in the list above), he states that these are the two standards that should be cleared for state intervention to be justified. The harm principle he uses is basically that you can only be allowed to expose a pediatric patient to risk if it is to avoid harm to others and only when there aren’t any other less intrusive alternatives. (He likes to quote John Stuart Mill and Feinberg J. to explain his harm principle.) Curious enough, it was that very legality and that very harm principle that he neglected in the Ashley case.

 

He also states in his presentation in the 2007 bioethics conference （③ in the list above) that “best interest” may not be the best standard to be used in medical decision making and that harm principle makes better sense.  This notion of Dr. Diekema’s is quite surprising because his justification in the Ashley case has been mainly based on the best interest theory rather than harm principle. He said in the BBC interview (January 4, 2007) that the panel agreed “because the parents convinced us it was in fact in this little girl’s best interest.” In the CNN interview (Jaunary 11, 2007), he said “We strive to do no harm, but that has to be balanced against what good we might do fo a patient.”

 

In the presentation, he talks mostly about cases like those of the Muellers, Riley Rogers or Abraham Cherrix where parents or 16-year old patient himself refused the medical procedures the doctors thought appropriate or necessary. So the conflicts between parents and health care providers he talks about may be a bit different from the situation of the Ashley case. Still, I find some of the standards the ethicist uses in this presentation quite interesting when we think of the way he justifies their decision in that particular case. For example, three of his five conditions for justifying doctor’s request for state interference are:

・     No less intrusive alternatives

・     Test of Generalizability

(Ask yourself if you’d make the same decision for anyone under the same circumstances.)

・     Test of Publicity(Others would agree it is reasonable)

(Ask yourself if you would be willing to go public with the media with your decision.)

 

There’s no evidence of in-depth review of less intrusive alternatives in the Ashley case like, for example, the one we see in the Illinois involuntary sterilization case. They kept the case private for as long as two years and then  still failed to mention the breast bud removal and the real reasons for hysterectomy when they finally wrote the medical paper. Remember it was not the doctors that went public with all the details of the case but the father. It was only after the father’s blog revealed everything that the doctors really admitted that they had done what they had done. Many others didn’t agree it was reasonable. And we know how respectful Dr. Diekema has been to the criticisms.

 

In Observation #6 of the 2007 presentation, he also says something I find quite amazing. He maintains that ”unreasonable” parent demands should be carefully considered, treated respectfully, but need not always be complied with. He gives three conditions for accommodating parents.: a)Intervention will not harm the child b) Intervention does not significantly harm others and c) Potential for benefit is possible, but not established. Then he finally adds that it is  appropriate to limit interventions to those within the scope of the provider’s practice/standard of care.  He referred to the procedures requested by Ashley’ s parents “unconventional”, “novel” and “untested” in their paper. I just don’t see why that cognition didn’t put the procedures out of the scope of their standard of care.

 

Dr. Diekema is basically a cautious ethicist. That makes his justification of the Ashley case all the more reckless and even out of character. Or did he go out of his way to go against his own rules in that particular case?

 

 

 

 

 

Dr. Diekema’s comment on genetic testing

 

The Seattle Children’s Hospital Treuman Katz Center for Pediatric Bioethics is convening its fourth pediatric bioethics conference today and tomorrow. The conference theme this year is genetic testing in children. The real time live webcast is available on the site linked above.

 

Yesterday, Paul Nyhan of the Seattle Post-Intelligencer who was going to cover it wrote a post Do you want to know every disease your kid might get? in the newspaper blog and asked for readers’ opinion on genetic testing in children. I found Dr. Diekema’s comment quoted in this post quite interesting.

 

A “core piece of advice is you shouldn’t do genetic testing just because it’s available. …….Parents need to think about how useful a test would be…..If there’s a test (that) came back positive, what would be the benefit for my child? Is there something we could do?

 

Doesn’t this contradict his own reasoning in the Ashley case? According to Dr. Diekema, mastectomy was to Ashley’s benefit, even without a genetic testing, because there were breast diseases in her family. With a positive test result, there should be definitely what parents could do for their children. Just surgically remove the organ in question. It would be totally ethically appropriate, because it would be the benefit for the child. Wouldn’t it, Dr. Diekema?  

 

ACOG Opinion “Sterilization of Women, Including Those With Mental Disabilities

In July 2007, the American College of Obstetricians and Gynecologists updated their ethics committee opinion “Sterilization of Women, Including Those With Mental Disabilities” in Ethics in Obstetrics and Gynecology, Second Edition, 2004.

 

You will find the updated version here.

 

 

I find some parts of the opinion particularly relevant to the Ashley case. For example;

 

The presence of a mental disability does not, in itself, justify either sterilization or its denial.

 

Sterilization is for many a social choice rather than purely a medical issue, but all patient-related activities engaged in by physicians are subject to the same ethical guideline.

 

Disabled women with limited functional capacity may sometimes be physically unable to care for their menstrual hygiene and are profoundly disturbed by their menses. On occasion, such women’s caretakers have sought hysterectomy for these indications. Hysterectomy for the purpose of cessation of normal menses may be considered only after other reasonable alternatives have been attempted.

 

Physicians who perform sterilization must be aware of widely differing federal, state, and local laws and regulations, which have risen in reaction to a long and unhappy history of sterilization of “unfit” individuals in the United States and elsewhere. The potential remains for serious abuses and injustices.

 

The initial premise should be that non-voluntary sterilization generally is not ethically acceptable because of the violation of privacy, bodily integrity, and reproductive rights that it may represent.

 

Its philosophy and principles calling for utmost caution seem to be in line with that of the court opinion on the K.E.J case in Illinois, the American Academy of Pediatrics in its policy statement on sterilization of minors with developmental disabilities and the related part of the UW informed consent manual. (See the posts, the court opinion on the Illionois involuntary sterilization case and  They couldn’t be unaware of the “get the court order” manual.) Reading these documents, I wonder if discussions on sterilization on women with mental disabilities have, based on regrets for the unhappy history, long been accumulated and formed a certain basic principles shared in these professional opinions.

 

Read the above paragraphs and the rest of the document as well as the others if possible and consider the doctors’ justification in the Ashley case. See how their arguments deviate from the cautious attitude that is a seemingly widely shared norm among medical professionals.

 

For example, Dr. Diekema’s comments like these;

 

I’m convinced she will have a better life. 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 feelings 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. And it just seems to me that in that situation, when the parents present a case of three things in this case that will help her, I’m not convinced that shouldn’t be offered.

(Larry King Live, CNN, January 12, 2007)

 

Whether legally you needed a court order or not is a totally separate question from whether it was right or not.

(the Seattle Times, May 8, 2007)

 

…past abuses should not dissuade us from exploring novel therapies that offer the potential for benefit. The population we propose to treat — children like our patient with profound cognitive and neurologic impairment, who are nonamubulartory and wholly dependent on others for every need –is different from the mildly to moderately impaired.

(the medical paper he coauthored with Dr. Gunther in 2006)

 

Ashley’s father, as a lay man outside the medical or judicial profession, may be free to think of anything bizarre, and it might be even possible that just one or two individual doctors with extremely radical way of thinking happened to go along with his idea. But if all the involved doctors in a big general hospital, especially a hospital with the prestige and public responsibility of the Seattle Children’s discarded all the caution required of their profession and went along with a father’s outlandish idea under the name of an ethics committee? Wow. THAT sounds bizarre to me.

One thing that worries me about this opinion is its last sentence: In difficult cases, a hospital ethics committee may provide useful perspectives. Can we really believe that after what happened in the Ashley case?

It was “mastectomy”, not “breast bud removal” in 2004

 

One of the questions about Ashley’s breast bud removal that have been nagging me is “Is breast bud a legitimate medical term at all?”

  

Does the term breast bud really refer to the subcutaneous, almond-sized tissue which contains the milk glands that Ashley’s father calls breast bud in his blog?

So many people including the doctors and the media followed suit and have been talking about Ashley’s “breast bud removal” that we have come to take without doubt that there is actually specific tissue medically called “breast bud” right beside the nipple that is responsible for future breast growth. But is there really? We have also come to believe that removing the parts of a young girl’s breasts will keep them from growing bigger. Will it really? Is the effect medically tested or proven?

 

Ashley’s father writes in his blog, “This operation is akin to removing a birthmark and is a very different surgery from a mastectomy on an adult woman with developed breast.” Is it, medically?

 

Dr. Diekema also said in answering a critical comment from the audience about her breast bud removal in the UW symposium (May 16, 2007) that there had been a medical need for the breast bud removal because it would have required a major surgery of mastectomy and would have paused a bigger risk later. It is a matter of timing he was talking about and that wouldn’t make it medically necessary for Ashley to have her healthy breast tissue removed, big or small. But the point here is that Dr. Diekema made it sound as if breast bud removal was something different from mastectomy. Is it?

 

Here is a stunning fact. The exhibit L attached to the WPAS investigative report is the minute of the special ethics committee of May 5, 2004. The procedure is mentioned three times in the minute and none is “breast bud.”. It is to “remove her breast before they develop” under Parent Preferences, the third of the specific proposals under Discussion/Summary is “Mastectomy,” and one of the discussion points is “How will the mastectomy improve Ashley’s quality of life?”

 

So it was nothing other than mastectomy in the understanding of the special ethics committee in 2004. How come the doctors switched to “breast bud removal” after the father’s blog was started on the New Year’’s Day of 2007? How come they have kept pretending as if it were something different from mastectomy ever since?

 

It was actually a mastectomy. And that’s probably what the doctors didn’t want us to know. Thus “breast bud removal” instead of “mastectomy” since the father’s blog made it open. “Breast bud removal” instead of “mastectomy” to downplay what they did. Because they knew it was something wrong? Something so wrong that they’d rather hide?

 

Just imagine and ponder this. If Ashley’s father had not started the blog and written all the details of what had been done to Ashley, the mastectomy part would still be kept within the hospital. 

 

 

Just imagine

Just imagine this was before the Ashley case.

You have a daughter like Ashley. You have a great idea to improve your daughter’s quality of life. It is an original idea, involving certain medical procedures to alter her body a bit radically. You have spent a lot of time doing researches for this. You know its originality might surprise your daughter’s doctor when you share it with him/her. But you have no doubt that you can convince him/her of the validity of the plan. It should be self-evident for anyone rational enough to be a scientist that its benefits outweigh possible harms. It actually is a great idea to help your daughter and other children just like her. Who wouldn’t be marveled?

 

So you make an appointment with your daughter’s pediatrician. You go and see him/her to ask to be referred to an endocrinologist. You start to explain your idea. “Well, there are actually three parts in this plan. The first part is growth attenuation by high-dose hormone treatment. Secondly, I want hysterectomy, and then I also want breast bud removal………..

 

Do you think you will be allowed to continue further? How long do you think your doctor will bear with you?  He/SHe will most likely be appalled and blush you away. You will most likely be simply chastised and sent out of his/her office, don’t you think?

 

Why then didn’t any of these happen to Ashley’s father when he visited the Seattle Children’s Hospital with his very original idea for the first time?

Dr. Diekema did hide the breast bud removal

It’s been pointed out by Wesley J. Smith, Dr. Carole Marcus and some others that Dr. Gunther and Dr. Diekema didn’t mention the removal of Ashley’s breast buds in their paper. Dr. Marcus wrote a letter “Only Half the Story,” in the Arch Pediatr Adolesc Med magazine last June and criticised that their paper was “very misleading” because of “its emphasis only on the ethics of height reduction.”  In their reply “Only Half the Story – Reply,”  the two doctors argued “Breast bud removal was a completely separate request and raised a different set of issues that were unrelated to growth attenuation.”  When they wrote this, the doctors obviously wanted to negate the allegation that they had intentionally omitted the breast bud removal to hide it.

 

Dr. Diekema may simply hope that no one has noticed that he once did hide it.

 

There were two CNN interviews with Dr. Diekema last January. One was part of the January 12 Larry King Live show. It was quite natural for King to try to find out what had been done to Ashley. So, Larry said, “All right, tell me, without being too technically medically, what was done” and Dr. Diekema answered “There were three things.”

But he had said something a bit different in the other interview, “Ethicist in Ashley case answered questions” by Amy Burkholder, which was aired on the previous day, Januray 11. He had said “There were two main aspects to the parents requests” to answer one of the questions. The word “main” may save him from lying out right, but the word itself makes me wonder if he was conscious that he was lying or at least revealing only part of the whole truth.

Then, Burkholder asked the same question as King, but Dr. Diekema’s answer was again curiously different. Here is the part in question from the January 11 interview:

CNN: Describe for us what was done to Ashley in 2004.

 

Diekeme: The growth attenuation was accomplished simply by putting her on high-dose estrogen. It’s like a super birth control pill, and shortens the period of time she’s capable of growing. Whereas a normal woman might stop growing at the age of 16 or 17, Ashley stopped growing at the age of 9. The hysterectomy involved a surgical procedure where her uterus is removed. They kept her ovaries in, so she could continue to produce hormones like a normal person would. 

Please note that he answered by “how” when he was asked “what”. Just as if he subconsciously wanted to avoid facing the question up front. 

 

It might be interesting to read the following part of the parents’ blog about the doctors’ “reluctance” to remove Ashley’s breast buds and think of this inconsistency in Dr. Diekema’s answers.

 

Of all the things we wanted to do to provide lasting physical comfort and quality of life to Ashley, the breast bud removal posed the biggest challenge to Ashley’s doctors, and the ethics committee. We overcame this reluctance by detailing the benefits above, recounting Ashley’s family history or breast problems, and …….

 

It seems to me that Dr. Diekema wanted, consciously or subconsciously, to hide and actually did hide the breast bud removal in the January 11 CNN interview.

 

The mystery of Ashley’s changing mental age

 

I wouldn’t have thought twice if it had been “3-6 months old” all along. But if a doctor’s evaluation of someone’s mental level is one thing one day and another some other days and yet another on others, wouldn’t that make you uncomfortable and wonder what kind of evaluation it is?

 

OK, these are what the doctors said about Ashley’s mental level.

 

May 5, 2004: The minute of the special ethics committee writes “profound developmental delay/mental retardation (developmental level less than 6 months?).” (Big question : What does this question mark mean? Had they conducted a developmental test before the committee or not? )

 

October, 2006: The doctors’ medical paper does not use any specific month-old terms to describe Ashley’s cognitive ability. They use more general expressions like “that (the development level) of an infant,” ”severe cognitive impairment,” “profound cognitive impairment”. 

 

January, 2007: In the CNN interview, Dr. Diekema said, “If Ashley’s brain is the brain of a 6-month-old, then Ashley should probably be treated as a 6-month-old” and “if she responds to the world like a 6-month-old, treating her like a 6-month-old may actually be the dignified thing to do.” The next day, when he talked about the case in the Larry King Live, he said, “she will remain a six-month-old in terms of her ability to understand.”

 

February, 2007: Dr. Diekema told Salon, “Her life is what a 3-month-old’s life is like.” (By the way, Ashley’s father writes that Ashley has been at the same level of cognitive and mental development since she was 3 months old in his blog which started on January 1, 2007.The fact may have something to do with this change in Dr. Diekema’s expression here. That may again raise a question about the validity of their “medical” evaluation.)

 

May, 2007: In the UW symposium, the doctors went back to the general expressions they used in the medical paper. No month-related expressions. (Their caution ?)

 

December, 2007: In the Q&A article in the Calvin College alumni magazine “Spark,” Dr. Diekema writes “She was estimated to have the cognitive ability of a 6-month-old.”  

 

January, 2008: In the summary of Dr. Diekema’s lecture on the Calvin College January Series site, a new expression “ a 3-6 month old” is used. “In the Calvin University TV after the lecture, the interviewer explained Ashley’s condition using the term “3-6 month old” and asked Dr. Diekema for confirmation. He endorsed the term by answering “yes” to her. (How convenient! It is not Dr. Diekema himself but someone else who used this wonderfully encompassing expression. He only endorsed her explanation of Ashley’s condition as a whole and thus made the expression to stick.)  

 

It is true that a 3-month difference is small. But the size of the difference doesn’t matter. What matters is the fact that it vacillates all the time, from “3 months old” to “6 months old” and sometimes even to some other expressions, and then to “3 to 6 months old.” It is conveniently “3-6 months old” now, just as if there had been no inconsistency in their explanations of Ashley’s mental age. Just as if they had been sure of their evaluation all along.

 

What matters here is their inconsistency. If the evaluation is duly done, the result should always be the same unless the person is reevaluated. Especially when the doctor uses the person’s mental age as his primary excuse to justify very evasive treatments that were not medically necessary, he should prove that it is not just a casual guess but a professional evaluation by providing with the details of the evaluation procedures like when, where and how including the name of the test that was used. That has never been done in Ashley’s case. Not even in the medical paper.

 

Or are we supposed to accept whatever a doctor says?

What if the doctor has a reason to mislead us?