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Wednesday, July 15, 2009

Growth Attenuation: Ethics of Treatment

In 2006 and 2007 I published two articles about the Ashley Treatment in Counter Punch. The articles generated a tremendous amount of email--as in hundreds upon hundreds of replies. Most email I received was positive but a few were shockingly mean spirited and bordered on hate mail. What I learned in the days after I wrote the articles in Counter Punch about the Ashley Treatment and growth attenuation was that people had a violent reaction to the subject. People were either opposed to what had been done to Ashley, that is they thought the child was mutilated by doctors, or believed it was perfectly logical and reasonable medical treatment. This juxtaposition of extreme views has always intrigued me and I have followed the Ashley Treatment as it has evolved sine 2006 when the story exploded in the news. I have tried to understand both sides of the debate, and there are only two sides--those for and those opposed to the treatment. No middle ground exists.

I will acknowledge that I have consistently failed to understand why doctors and some parents of children with profound physical and cognitive deficits are drawn to what I consider an extreme medical solution to a problem that is largely social in nature. Between 2006 and today, many articles have appeared in medical journals about the Ashley Treatment. Doctors no longer refer the "Ashley Treatment" and instead discuss growth attenuation. This change is more than a matter of semantics and in my estimation is an attempt to avoid the harshest critiques outside of medicine. I have tried to remain objective but nothing I have read has led me to believe that growth attenuation is a viable treatment option. Indeed, I remain convinced that growth attenuation is ethically questionable at best. Yet doctors, Douglas Diekema among others, seem driven to establish growth attenuation as a viable treatment option. I do not understand this forceful drive and was disturbed to read an article in Pediatrics by Diekema, David Allen, Michael Kappy and Norman Fost entitled "Growth Attenuation Therapy: Principals for Practice" (June 2009; 123:1556-1561). This paper seeks to establish the principals for growth attenuation in practice, that is provide the scientific rationale for the effectiveness of growth attenuation. The authors identify seven such principals for growth attenuation treatment:

1. Nonambulatory children with profound cognitive disabilities.
2. Growth attenuation should be given the equal respect with growth promoting therapy.
3. Families caring for a child with cognitive disabilities should be informed about growth attenuation in early childhood.
4. Informed consent should give the risk and benefits of growth attenuation in both the short and long term.
5. Potential benefits of growth attenuation adds a new dimension for precocious puberty for children with a profound cognitive disability.
6. Ethics committee review before growth attenuation treatment.
7. Growth attenuation should be part of a research protocol.

I do not in any way question the motives of the doctors who promote growth attenuation. I have no doubt they are trying to do their best for children and their families. I am equally sure that doctors regularly encounter ethical dilemmas that have no obvious or clear cut answer. I can also readily understand men and women of science who have dedicated their lives to helping people actively seek to fix medical problems both physical and cognitive. Yet it seems to me that those that are promoting growth attenuation are ignoring or minimizing the history of this treatment and its implications. Growth attenuation is a both a medical and cultural response to developmentally fragile children. Like it or not, once a treatment such as growth attenuation exists its very existence provides a reason to use it. The rationale for why it is or is not utilized will change. In this regard there are profound flaws in the paper that undermine the use of growth attenuation. Among them are the following:

1. Doctors have failed to provide an adequate definition of what a cognitive disability is. The authors of the paper acknowledge this fact and in terms of growth attenuation "define profound cognitive disability as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care even after careful attempts at training, and the inability to understand or express oneself in nuance ways". This is a vague definition and I can readily think of multiple conditions that fit under this rubric. Thus I cannot help but conclude a specific population or type of child is being selected and considered for growth attenuation while all others are automatically dismissed. This leads me to ask why is it ethically acceptable to attenuate the growth of children with a cognitive disability but no other human beings? What does this mean culturally? To me, this is a strong indication that in spite of what the law may state people with disabilities are not valued. Any and all means must be utilized to "correct" their deficits. This is an extreme medical solution to an issue that is partly medical but largely social. By social I mean the utter failure of our culture to acknowledge the civil rights of people with disabilities.

2. Doctors assume the permanence of a cognitive deficit is life long before growth attenuation is permitted. That is they are making a "reasonable assumption" no change will take place. This is a significant leap in logic. Doctors are human and mistakes are made every day in every hospital in the nation. Of course we do our best to minimize our errors but they are simply inevitable. This leads to me wonder what happens if doctors make a mistake diagnosing a child with a seemingly profound and life long cognitive deficit? What will they say to this person when they are an adult? I realize the odds of this happening are remote but it is possible. Many of us know people who have been misdiagnosed, told they were terminally ill only to discover this was not the case.

3. The paper maintains that selecting children to attenuate their growth is a "separate issue". I think not. If seven principals for practice can be written out in detail surely a central component must be determining exactly who can and cannot be subjected to growth attenuation treatment. The selection process is a core issue that is brushed aside. As one blogger has noted "profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded as unethical if applied to physically disabled children without cognitive disability into something that looks OK when it is applied to children with a cognitive disability".

4. The authors maintain that doing nothing does not lead to the best outcome. The authors have a point here and provide a child with scoleosis as an example. In this regard, doing nothing for a child with scoleosis is indeed not advisable--and I speak from experience having had surgery long ago. However, I fail to see how children with a profound cognitive disability can be harmed by doing nothing. And is this not what doctors are in essence supposed to do--"do no harm". Surely treatment options for children and adults with profound cognitive disabilities exist that will render them medically stable.

5. To date, growth attenuation is limited to treating female children. There is a half a century track record of treating female children with hormones and the debate about the safety of this treatment is far from resolved. Medical attempts to alter the height of children remains controversial and has a checkered past. For a critical study see Normal at Any Cost. Although written by non academics the text provides a cautionary tale and contains a wealth of references.

6. The authors believe that adequate legal protections are in place to protect children that will be considered for growth attenuation. This is subject to debate. These legal protections did not protect Ashley who was unlawfully sterilized and added safe guards needed to be established. Assuming legal safe guards exist is simply not true and ignores a long history of violating the sanctity of disabled bodies in American history. I need not review the history of the Eugenics Movement here and will simply point out that tens of thousands of people were sterilized against their will. Ignoring this past as unpleasant as it may be sets a dangerous president.

None of the above flaws broach the subject of whether growth attenuation solves the quality of life issues it is designed to eliminate. Here I refer to the reduction in the ease and problems associated with caring for a person with a profound cognitive disability. This is not what I think medicine should be concerned with--social issues that have non medical solutions. Those solutions, providing adequate resources to families caring for children with profound cognitive disabilities, would exist if and when we value the lives of those individuals. Medicine and growth attenuation can change the human body but not the inherent cultural problem we are confronted with.


lilacsigil said...

To date, growth attenuation is limited to treating female children.

This rings the biggest alarm bells for me. A grown woman could be "mistaken" for a sexual being - but rather than fighting sexual abuse of disabled people (which happens to both men and women, to both boys and girls) there's a retreat to a fantasy-land where no-one would sexually abuse a child? Or an adult, disabled man?

william Peace said...

Lil, What amazes me is that doctors gloss over the fact only women are subjected to growth attenuation. It is mentioned briefly but it's significance or gender inequality is not subject to discussion. Sexual abuse of people with disabilities is not mentioned at all even though it was a consideration for Ashley. I agree this raises alarm bells and feminist theorists have not as yet strenuously objected to growth attenuation (it is not a core issue). If one took a strictly utilitarian position, rendering cognitively disabled males smaller provides a stronger argument.

Matthew Smith said...

While the "Ashley treatment" has so far been reserved for cognitively impaired children, there was an incident in Australia where a girl who had cerebral palsy, without any cognitive impairment, was given a hysterectomy in the early 1990s. This was without her consent and when she was interviewed, she was angry; she wanted to have periods as she regarded it as part of being a woman, even though she acknowledged that she might not be able to bear children. I remarked at the time that parents may make decisions imagining it to be in their child's best interests when it's really in their own (I'm speaking from personal experience here). An awful lot of the justification had to do with convenience, i.e. keeping her little and child-shaped so that she'd be easy to lift, etc.

Miriam @ Rearranged Life said...

I realize that this post is aged at this point, but I'm curious reading through all of the articles on "Ashley's Treatment". My son is projected to be 6'6" tall, and has severe Athetoid CP and Dystonia...meaning his limbs thrash about all day and he has very limited control, great strength and violent movements. He is NOT cognitively impaired in the slightest. It hurts my heart DEEPLY to think of stunting his growth, yet for the quality of his care I feel it is something that we have to explore. He certainly doesn't fit the template of the "Ashley Treatment" in any way. He's very bright, but communication is very difficult, and I hope that with time he will learn to communicate more effectively. Stunting his growth would be rough beyond words (on top of the many other trials we have with his care-gtube feedings, cochlear implant, endless equipment etc), but at least at the end, it should not alter his status as a man, and might mean 5'10" versus 6'6". He also is mobile with LOTS of support, but our PT's project that he will grow out of the tallest gait trainers (the device that he walks in) by 5'10". The list of limitations that he will face at 6'6" is VERY long, as he uses at least 8 seating/positioning/mobility devices every day that all have maximal supports (LOTS of straps and buckles). I can't help but wonder if you see this dilemma in the same light. We want him to maximize his potential and be able to go everywhere and do everything he wants...including college and everything beyond, and stunting his growth might be necessary to get there. Also as a side note, my family is very tall, as is my husbands, and while his growth was nearly stunted as a baby when he was starving as an infant by burning a ridiculous amount of calories with all of his movement and his limited ability to take in food by mouth, we got him a g-tube and made sure he got what he needed . (So many kids with CP do not get adequate nutrition...and thus their growth is stunted-which is why our dilemma is rare.)