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 Navarro, 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.

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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, 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?

(Also see Why did Dr. Diekema do everything he himself had said “Don’t” without doing what he had said “Do”? , whick was written with the full text information.)

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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?

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