The Corpus Callosum

(I know Shelly has already posted about this on Retrospectacle.  Hopefully, you'll see there is a different slant to this.)  

Significant controversy arose over the idea of using pharmaceutical and surgical methods to permanently stunt the growth of children with severe disabilities.  The controversy arose with the publication of stories in the media about "Ashley X."

The medical profession refers to this as "growth attenuation treatment."  In order to understand the controversy, it first is necessary to understand what was done.  The idea is described in the Archives of Pediatrics and Adolescent Medicine.

Attenuating Growth in Children With Profound Developmental Disability
A New Approach to an Old Dilemma
Daniel F. Gunther, MD, MA; Douglas S. Diekema, MD, MPH
Arch Pediatr Adolesc Med. 2006;160:1013-1017.

Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home. Treatment of the child with high-dose estrogen, initiated at an early age, could provide this option. High-dose estrogen both inhibits growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. We present a case report and discuss the medical and ethical considerations of such an intervention strategy. We suggest that after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it.

In general, physicians advocate the use of medical treatments for the treatment of disease.  In the case of optional procedures, such as cosmetic surgery, one ordinarily would want the informed consent of the patient.  But what they are talking about here is not cosmetic surgery, but neither is it intended to treat a disease.  Rather, it is intended to facilitate caregiving.

One family, that of "Ashley X," has had this done to their daughter. It has captured the attention of the media.  

The Independent: Parents who froze girl in time defend their actions
CNN: Surgery to stunt disabled girl's growth raises ethical questions
Reuters: Seattle parents defend treatment for disabled daughter
Scientific American (editorial): Pillow Angel Parents Deserve Credit, Not Blame

The parents of the child were flooded with requests from the media, and various others, so they put their story on a blog: The “Ashley Treatment”.

Predictably, there has been a great deal of controversy.  In order to understand this, it is necessary to understand why it was done.  As the parents explain on their blog:

Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.

Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our “Pillow Angel” since she is so sweet and stays right where we place her—usually on a pillow.

Some may object to this on the grounds that it interferes with nature, or with God's will.  But of course, everything we do causes such interference, so those arguments lead nowhere.  The only pertinent controversy is whether the Ashley Treatment respects the rights of the individual.  As Shelly puts it on Retrospectacle:


Well, she never would be an adult, in the sense that she never will gain mental competency.  Plus, I content that this was not done merely for the parents/caregiver's convenience.  The fact is, the easier it is for the caregivers, the easier it will be for Ashley.  So it will improve her quality of life.  In that way, it is a palliative treatment.  So although there is no hope of cure, the fact is, palliative treatment is a well-precedented and perfectly acceptable rationale for medical treatment, including surgery.  Cancer patients, for example, frequently get palliative treatments.  Palliative care is in a zone between medically necessary treatment, and purely cosmetic treatment.  But that does not mean it is in an ethical gray zone.  To the contrary, the ethical principles are pretty well established.

The other issue about patient's rights has to do with the issue of due process.  Because nature is inherently unpredictable, there is no way to establish, ahead of time, how each situation should be handled.  Ethical questions are going to arise, and each situation will be different.  Therefore, it is not possible or sensible to rely rigidly upon preestablished rules.  Instead, we have principles, and a process for determining how those general principles apply to each specific case.  In this case, the hospital followed its process.  The parents made their decision.  The physicians and the ethics board agreed.  They were performing palliative care.  So there is no rational basis for objection.