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, Dr. Diekema 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 perception, 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?
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Posted in Dr. Diekema's explanation, information, the special ethics committee, tagged Ashley treatment, Ashley X, ethics, ethics committee, hysterectomy, involuntary sterilization, pillow angel on July 21, 2008|
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?
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