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Posts Tagged ‘medical ethics’

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 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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