An Interesting Medical Ethics Issue

[Ralph]

Activists protest girl's stunting
1/11/2007, 6:03 p.m. ET
By LINDSEY TANNER
The Associated Press

CHICAGO (AP) — Activists are demanding an investigation into treatment performed on a severely brain-damaged girl whose growth was deliberately stunted to make it easier for her parents to care for her at home.

Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl's rights.

"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy.

Taylor said that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.

Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.

The case has prompted an outcry nationwide and abroad since the bedridden girl's parents disclosed details of the treatment on a blog last week.

The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4 feet 5, about a foot shorter than the adult height she probably would have reached, her parents say.

Ashley suffered brain damage from an undetermined cause that was diagnosed shortly after birth, leaving her in an infantile state. She cannot sit up, walk or speak. Her parents say keeping their little "pillow angel" small will allow them to continue caring for her at home even when she is an adult.

Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.

The girl's doctors at Children's Hospital and Regional Medical Center in Seattle described the case in October's Archives of Pediatrics & Adolescent Medicine.

Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interest.

The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," Molteni said.

The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.

Feminist and disabled-rights groups are also demanding an AMA ethics committee look into the case.

"This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the suburban Chicago-based disabled rights group Not Dead Yet.

Amber Smock of Feminist Response in Disability Activism said the AMA sanctioned Ashley's treatment by allowing the report to be published. The journal is owned by AMA but has an independent editorial board.

The AMA issued a statement saying it "does not have policy pertaining to the medical treatment referred to as the 'Ashley treatment.'" It also said that under the AMA's ethics code, medical decisions about incapacitated patients should be based "on the best interest principle."

About 25 protesters, some in wheelchairs, demonstrated outside the AMA's Chicago headquarters Thursday, chanting, "Accommodations, not operations."

"As far as I'm concerned, it was mutilation," said Donna Harnett, 42, who brought her brain-damaged 10-year-old son, Martin, to the protest.

Dr. Frederick Rivara, the journal's editor, said he published the case not out of support or opposition, but to bring it to doctors' attention "and to have exactly this kind of discussion in the scientific community about is this the right thing to do or not."

Ashley's parents have not been identified and have declined media requests for interviews.

___

On the Net:

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

Journal: http://www.archpediatrics.com

[Madame]

Interesting -- and tough. What a beautiful little girl.

I don't know, there's something about calling her a "pillow angel" that hits me wrong. Maybe it's just too early in the morning.

The children's hospital where this was done is in Seattle, it is one of the finest in the country. But I never thought of it as a place which would handle this type of operation.

I wonder who paid for the surgery, surely an insurance company would have challenged its being medically necessary. The hospital does provide treatment regardless of ability to pay, however.

It also brings up another question -- the feeding tube. She does not have the ability to swallow and would die without the tube. When my father lost the ability to swallow, inserting a feeding tube was unacceptable because he had said he did not want any kind of life support, so the decision was made to let nature take its course. Ashley is unable to make that kind of decision for herself; I wonder if the parents had a choice at the time it was done.

Should she live to be 30, say, I wonder if the family will still think of her as a pillow angel and whether they will still care for her at home.

[jbuck919]

This is tangential and not quite to the point, but I would like to post it anyway. In the various periods of my life where I have substitute taught, I have occasionally stood in for the teacher of the profoundly and profoundly, often multiply handicapped. It is an easy assignment because there are so many aides in the room that one does not have to do anything but be there all day. Autistic children and those with profound what used to be called emotional disturbances are not part of this scenario--that is quite a different story. We are talking about teenage children who have to have their diapers changed or be accompanied to the bathroom because they can't take their own pants down; or children of normal intelligence who are midgets, unable to walk and therefore in a wheelchair, blind, and have hirsute bodies all at the same time (I am not making this up). Fortunately I do not freak out easily and I was actually a good choice for these assignments.

My initial impression of the situation in Seattle is that this intervention was unethical. Though I am not given to such statements, it does sound a bit as though those folks were playing God. However, as Ralph himself said in the subject line, it is not black and white and cut and dried. Very difficult, indeed.

(Incidentally, I would have considered becoming a special ed teacher to such students because of my quite unanticpated affinity for them, but when they certify you in special ed, you go where they tell you to go, which is usually to begin with intentionally misdiagnosed troubled adolescents, the details of which I will leave to your educated imaginations. No thank you.)

[Ralph]

The hot button at the bottom of the article goes to a very long, very articulate defense of the medical procedures written by the mom. Well, it is possible that mom is a highly educated, competent writer but the work has all the appearance of expert editing if not authorship. Of course that's not wrong per se but it is a very well-constructed defense of the action taken, written to close off any and all objections.

[Madame]

The hot button at the bottom of the article goes to a very long, very articulate defense of the medical procedures written by the mom. Well, it is possible that mom is a highly educated, competent writer but the work has all the appearance of expert editing if not authorship. Of course that's not wrong per se but it is a very well-constructed defense of the action taken, written to close off any and all objections.

Los genios pensamos igual.

[Teresa B]

This one is a toughie. I agree, the blog article by the mother reads like a professionally-edited piece, but of course it is possible that the woman is well-educated, and/or she wanted it to be as clear as possible.

I tend to look at each ethical case in its own right rather than apply a set of rules to everything. In the early 20th century in this country, for example, we were sterilizing the "feeble-minded" without their consent, and that slippery slope is a horror to be avoided.

But this particular little girl is evidently so disabled she cannot do the simplest self-care, and obviously could not enjoy the fruits of reproductive rights. As long as keeping her small is increasing her quality of life and actually decreasing her potential suffering, it seems to me it is the right thing to do. Human dignity doesn't seem to me to be any less if a person appears childlike.

Yes, they put her through surgery. But as someone who has seen severely disabled adults go through the pain of non-healing bedsores, mediocre or poor nursing care, I can sympathize with her parents who want to be able to care for her themselves as effectively as they can. I get the feeling the parents are not doing this just for their own convenience.

I vote "yes" with the reservation that every case of a disabled person must be dealt with completely individually.

Teresa

[DavidRoss]

What's that saying about walking in someone else's shoes?