(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,
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
to stunt disabled girl’s growth raises ethical questions
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
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:
surgery, saying that her parents have essentially denied her the right
to grow up and become an adult, and that the surgery will cause
unnecessary pain to the girl just to suit the parents’ convenience.
Who’s right on this issue?
Well, she never would be an adult, in the sense that she never will
gain mental competency. Plus, I content that this was not
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.