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Thursday, December 9, 2010

Growth Attenuation, Hastings Center Report and Media Misrepresentation

It has been one month since the Hastings Center Report about growth attenuation was published by the “Seattle Working group”. I was encouraged by the article produced though I disagreed with the working premise—specifically that growth attenuation or the Ashley Treatment as the popular media terms it is a viable course of treatment. I do not think growth attenuation should permitted even in cases where a child is not ambulatory and has a profound cognitive disability. However, this does not mean growth attenuation should never be performed. In some exceedingly rare cases growth attenuation may be medically necessary. But such a treatment is extreme and must be subject to thorough review. At minimum that review would entail internal, external and the independent legal representation of the child/person whose growth is attenuated. The Seattle working group in this regard has multiple fine suggestions none of which are being reported by the media. The media, here I refer to mainstream news outlets such as newspapers and television reports are grossly misrepresenting the conclusions reached by the Seattle Working Group and published in the Hastings Center Report. This particularly unfortunate as there is much to be learned by a careful reading of the article wisely published by the Hastings Center (subscription required).

For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.

The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:

“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”

The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.

There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”

The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.


william Peace said...

I suspect parents that search out growth attenuation accept a medical model of disability without considering the social implications of disability. This is understandable given the fact those pushing growth attenuation perceive it to be THE answer to all problems. But as you know this is wrong and does not even address whether growth attenuation is acceptable ethically. Why is one population targeted, those with cognitive and physical disabilities? What does this say about us, as in our culture? More to the point, are the sober and solid conclusions reached by the working group not being discussed?

Eric Fischer said...

Bill, they are not being discussed because the extremely disabled children that would be "eligible" for GA are a tiny percentile of the disabled populace. On the flip side, I hate to admit it but at least this brings some recognition of the EXISTENCE of extremely disabled children, although the same could be said of Latimer.

I would like to see something else come to light though, which in my opinion takes the entire concept of GA and blows it out fo the water: static encephalopathy. It's a catch-phrase without any meaning.

Parents, people, professionals can either be too inept, uninterested or blinded cognitively by their agendas to truly learn what level of cognizance someone like Ashley or my son have. I'm STILL learning about my son and I pay attention to every tiny detail like a bloodhound on the scent of a killer.

If anything, static encephalopathy states that the condition of the brain is not expected to deteriorate, thus ALLOWING some development to take place, without the worry of constantly sliding backwards as in progressive encephalopathy.

william Peace said...

Eric, Children with profound cognitive disabilities are sadly not discussed nor does anyone seem to care that resources for such people are grossly deficient. This point is made in the Hastings Center Report. I too hope more people learn about this social failure. As for cognition, the brain is fascinating and complex. Ad in profound cognitive deficits and that complexity become even more difficult to figure out. As one that literally grew up on neurological wards I was always amazed at the way my peers thought and communicated, Here I refer to kids with profound if not devastating neurological conditions. Based on this experience I am convinced the brain is not static--changes in cognition are ever present. Growth attenuation ignores far too much neurology for me in search of a simplistic answer to a complex problem that is social and medical.

Unknown said...

I'm afraid at this point in time, money is the factor. Research in these fields based from the Seattle Working Group are dependent upon grants from the Greenwall Foundation and Simpson Center. However, keeping these issues discussed is fruitful. Everything takes time and the Almighty Dollar.

Unknown said...

Please keep in mind that we are global. The moral values of countries vary greatly. There will always be a stigma attached to any form of bioethics which date back to ancient times and Nazi experiments. Any alteration to the human body should be capable of being reversed. Lobotomies were performed on people, including the mentally retarded. Disastrous results! Then came a form of "medicines" which were called lobotomy in a bottle. Most of this type of procedure could be reversed. Am old, workable treatment for children with autism was the usage of Mood Rooms. Unfortunately Mood Rooms lost favor due to the time element. We have now reached birth control to where pills or just a simple shot or patch can be used.
We need to be very careful of any altering in the human body.

emma said...

"The perception is that it will no longer be possible to do things with the child if s/he is larger, or at least, that it will be more difficult to do the things they are accustomed to doing."

What Claire says here scares the crap out of me, this idea encompasses a lot of people, not only those talked about currently in reference to G.A.

And another of Claire's comments worth pointing out
"It is always imagined that menses is always painful and somehow "frightening" to the disabled girl."

Being fearful is something that can be learned, if parents or carers are stressed (about menses or anything really) then it will become a distressing/fearful situation for the person being cared for.

Menses is still to a large degree a "taboo" subject. Disability, and in particular cognitive disability, is something that still makes many people feel uncomfortable...but that would mean a lot of discussion in favour of G.A. is based on primitive fear and cultural hang-ups?! (but I guess that is not such a big surprise?).

That would lead me to ask whether the subject of support is being avoided because at the end of the day society still prefers to hide disability, in particular those with severe or profound disability?

Unknown said...

Anyone who wants to stunt the growth their child for the reasons Claire mentioned should lose custody of the child immediately. The parent(s) should buy a doll which would permit 100% control. Growth is checked routinely by pediatric physicians. All little girls and boys must learn to deal with their sexuality. A mentally challenged little boy doesn't fit in society by masturbating in public.
Children of special needs may require extra growth and weight to fend off potential attackers as they mature. We don't live in a pretty world. Thank God the Barnum and Bailey circus days are gone.
As I was recovering from polio on a gymnasium floor in an iron lung (there wasn't room for any other facilities at that time), I was fortunate to have the camaraderie of my peers. We learned how to handle our bodies to prevent sores from the braces and chairs. Metal braces attached to one's shoes that fit up to the hips are not only uncomfortable but not too fashionable.
I have a feeling I will always remain the optimist who will always be able to haul my 120 pounds around even at age 70.

william Peace said...

Emma. You raise excellent points. People do not discus menses and as a result it is indeed a taboo subject. Add in the fear of disability itself and you have a powerful one two punch that raises all sorts of cultural hot buttons. This is particularly unfortunate.
Ginger, It never ceases to amaze me how much medicine has changed. You were in a gymnasium with polio and were part of a rich history of self help among people that had polio. I find such accounts fascinating. Fast forward to the 1960s and 1970s and I was in a hospital ward of 16 neurologically impaired kids. Today, these experiences are ancient history. This is sure sign steady progress has been made in the care and treatment of children

Unknown said...

Yes, we have made great strides with disabilities. Most of us polio victims were treated by half trained physicians since the world was recovering from World War II. Blackout curtains and rationing was an accepted fact.
Now mentally challenged children are not confined to institutions. Group homes are the norm for them once their parents are gone or too old to care for them.
My next issue is ramped entrances for as many buildings, including apartments, as possible. It was a challenge for me to lug my school books up and down 2 flights of stairs during my high school years. College was a breeze.
In our area we now have most physician's offices and public building ramped. However, ramps for private homes are a challenge to keep free of snow and ice, and to be financially responsible in case some careless people get injured on them and sue. Apartment dwellers depend upon portable ramps that must be moved after usage.
We have banded together in this area to ensure that mentally challenged people are not longer put on public display to "work" and are achieving some success.
This all takes time, patience, and publicity to the right people.