Jan 4, 2007

no ethical precedent: keeping a "pillow angel" small forever

A puzzle for medical ethicists, an easy decision for the parents:
Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over, or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel," since she stays where they place her, usually on a pillow....

The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4-foot-5 and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would attain roughly average height and weight for a woman: 5-foot-6 and about 125 pounds.

The radical solution has drawn criticism and even outrage from some doctors and caregivers who say it is a fundamental violation of a person's dignity to impose such impairment of their growth. Some say it's also a violation of the medical oath: First do no harm.
Ashley's parents, in their own words, describe and justify the "Ashley Treatment."
The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors.

Nearly three years after we started this process, and after the treatment was published in October, 2006 by Dr. Gunther and Dr. Diekema in a medical journal1 that resulted in an extensive and worldwide coverage by the press[2, 3, 6] and a broad public discussion4, we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden “Pillow Angels”; second, to address some misconceptions about the treatment and our motives for undertaking it.

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
Somehow I missed the discussion that cropped up about the controversial decision by this anonymous Washington state family to keep their daughter small for the rest of her life. As for many others, shock was my first response--but thinking about it, I become conflicted. My natural reaction--and I use the word intentionally--is to say, "Don't mess with nature." But then, assisting Ashley, caring for her against the whims of genetics, is in itself an interference. Ashley will never be normal. She has a baby's brain in a soon-to-be-adolescent body. Maybe it really is in her best interests to halt her development.

How about you, thinkers? Is there ever a point where such a radical intrusion is justified? Is this morally analogous, say, to amputation or a transplant? Or is this another spree down a slippery slope?


TeacherRefPoet said...

I read this today, and my instinct, at least provisionally, is to side with the parents. Ashley might actually be harmed by getting larger. As her brain development will always be that of a baby, it makes sense to be able to care for her like one. If she were ever to be able to walk, roll, or sit, then the treatment might negatively impact that, but I do think that the Hippocratic oath holds up here. They're not harming Ashley...they're actually aiding her.

Jim Anderson said...

One thing that still gives me pause is the nature of the hormone treatments. Some commentators are claiming they're unsafe in the long term. I don't have evidence, though, so my doubts are just as provisional.

Leena said...

I try very hard not to doubt that parents try to do the right thing for their children. I know of lots of cases where this isn't so, but I somehow think their actions were in the child's (and their own) best interest.

pouw said...

You're referenced again here, this time not on a hackneyed advertisement for a hackneyed product at least:


Regarding the girl, I'm conflicted too.

Jim Anderson said...

pouw, what's odd is that they don't even quote me. They quote me quoting the anonymous parents.

Ronnie Ann said...

I can certainly believe that Ashley's parents did what they think is best, but I am not convinced that all the facts as stated are as clear-cut as we are led to believe. I shudder at the thought of what this makes it "ok" to do in the name of caring for the physically and mentally challenged.