(I know Shelly has
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.
href="http://archpedi.ama-assn.org/cgi/content/short/160/10/1013"> style="font-weight: bold;">Attenuating Growth in Children
With Profound Developmental Disability
href="http://archpedi.ama-assn.org/cgi/content/short/160/10/1013"> style="font-weight: bold;">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: href="http://news.independent.co.uk/world/americas/article2125403.ece">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): href="http://blog.sciam.com/index.php?title=title_5&more=1&c=1&tb=1&pb=1">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: href="http://ashleytreatment.spaces.live.com/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 style="font-style: italic;">rules.
Instead, we have principles,
and a process for determining how those style="font-style: italic;">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.
The analogy to palliative care has been the best argument I've been able to use in my simple debates with people who oppose the "Ashley Treatment". Thank you. I'll be sure to blog about it in Spanish...
Thanks for posting you perspective on this; thats another good argument in favor of 'the Ashley treatment.' Although I have to admit that 'pillow angels' make me cringe. :)
I've posted this elsewhere, but I get irked with people who think the parents' "convenience" is somehow selfish or callous. As Ashley's parents age, "convenience" will converge upon synonymy with "safety". It will permit them to care for their daughter at home with lowered risk of injury to themselves as they age, and as such their decision is one of the most altruistic acts I can imagine.
Obviously the surgery and the hormone therapy come with risks. So would a fall down a flight of stairs by a 75-year-old parent with a 40-year-old, 150-pound, completely helpless woman in his or her arms.
What worries me is how far this is genuinely about physical care issues and how far it is about maintaining the childlike appearance of this 'pillow angel' in order o make the level of care required psychologically more bearable for the parents. The 'pillow angel' moniker, to me, hints at the latter - at a parental fear of how much of an angel a 30-year-old 'pillow angel' would seem.
That said, I don't face this situation (thank God!, metaphorically speaking). I have faced the prospect of having to care for a severely mentally disabled child myself - and knowing the agony that the mere possibility of this caused, I am not about to condemn these poor parents even if the physical care issue really is just a blind for their own fears.
I agree with outeast and Shelly Batts that the term "pillow angel" is a little creepy. But it sounds like they were calling her that *before* they even started thinking about this treatment.
If it makes the care psychologically easier for the parents, doesn't that make the resulting care better for the child?
In this specific instance it sounds like she will never be more than an infant in either mental capacity or even simple bodily control. While I can't see that care provided by her parents would make her feel any different than care provided by a 3rd party, there are good arguments for allowing capable, loving parents (and I'm assuming here that they are) to care for their children.
One thing that I immediately thought of when I first heard about this case several weeks ago was: what if instead of a completely infantile female this was an adult male with the mind of a 2 year old. Could you imagine having to deal with a temper tantrum by someone 6 foot tall? In cases like that I think treatment is even more justified.
I just hope I never have to be involved in making this sort of decision. Personally, I think they did the right thing.