Medical ethics

[serenissima]

A strange situation.

AP: Surgery on girl raises ethical questions

Excerpts:

The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.

She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

"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.," her parents wrote.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time.'"

Ashley's blog: http://ashleytreatment.spaces.live.com

Archives of Pediatrics & Adolescent Medicine: http://www.archpediatrics.com

To me, a key point here is that the parents "have been unable to find suitable outside help." If they institutionalized their child, the long term care facility would have physical resources (nursing staff and mechanical lifts) such that the patient's size would be a non-issue. She's not going to grow to the size of a linebacker. But a real home is generally a better mental and social environment than a nursing home. Is the difference so great that it justifies stunting the girl so her parents can care for her at home longer?

Comments

[firenightingale.livejournal.com]

On this one I take the approach of 'How would I feel if I knew I were going to be in that girl's situation?'

Under those circumstances (though obviously I'd infinitely prefer to never be in her position), being able to grow to adult size & experience menstruation, etc. when I had the mental capacity of a three year old would not appeal to me. In fact, I'd prefer to have the added freedom of movement that a reduced size gave me to vary my surroundings.

The key here to me seems to be quality of life, what they are doing is enhancing her quality of life rather than limiting it. They appear to be enabling her to live her life as fully as she will be able to live it, with as few discomforts as possible.

It is a bit of an ethical minefield though.