News Story on the Ashley Symposium in Washington

http://thedaily.washington.edu/article/2007/5/17/bioethicsConferenceTacklesToughMedicalDecisions

Bioethics conference tackles tough medical decisions

She doesn’t have a last name. They call her "Ashley X" or even "Pillow Angel."

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See Ashley's parents' persepective on http://ashleytreatment.spaces.live.com/blog/

Yesterday, though, people from around the nation visited the UW because of this young girl, to discuss the issue of limiting growth in children with severe disabilities. The forum was an all-day conference held in the Moot Courtroom of William H. Gates Hall.

Ashley’s case sparked discussions about disability after her parents opted to give her what has been dubbed the "Ashley Treatment" when she was 6 years old. Now, Ashley is 9-and-a-half. The treatment included giving Ashley, who has a severe brain injury that keeps her in an infant-like state, hormones to stunt her growth, keeping her body small. Doctors also removed her uterus and breast buds to prevent the discomfort of menstrual cramps and breast development.

An ethics panel at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital, where the surgeries were performed, considered the benefits and risks of the hysterectomy, removal of breast buds and hormone treatment before the surgeries took place.

"Because of the novel nature of the request and need to really make sure we were looking at the many aspects of the parents’ request, it was obvious we needed to get a group of people," said Doug Diekema, director of education at the Katz Center and leader of the ethics committee.

Ashley and her parents played a significant role in the decisions of panelists, Diekema said. "Ashley’s parents were devoted to her," Diekema said. "[Their] primary purpose was to make her life as good as it could have been. They desperately wanted to keep her as a part of their family and didn’t see [a] life without Ashley in their home."

Diekema said Ashley’s parents considered several options before choosing the treatment.

"They were very familiar with options such as outside help or [using] lifts," he said. "[They] didn’t feel there was an option that [would] be more acceptable."

Diekema said many committee members came to the discussion with a bias against the treatment.

"It’s fair to say that everybody in that room probably walked into the room thinking, ‘We’re probably going to have to say no to the family,’" he said. "At the end of the meeting, it’s fair to say that everybody in that room was in agreement that … this really would probably benefit this little girl."

According to a blog Ashley’s parents have been updating since the surgery, they hoped this treatment would increase their daughter’s comfort, while making it easier for them to care for her and include her in family activities.

Because Ashley’s family has a history of breast cancer, removing her breast buds would evade the young girl’s chance of getting cancer and avoid any discomfort associated with the chest strap she uses, her parents said. The hysterectomy would prevent Ashley from experiencing painful menstruation and avoid the possibility of pregnancy if she were to be sexually abused.

Some, however, feel the surgeries were unwarranted.

"When I first heard about the Ashley treatment, I was devastated for the advocacy movement as a whole," said Corinna Fale, a representative from People First, a disability advocacy group. "I was devastated as a woman. If this can happen, what else can they do? Are they going to be able to play God and do some other procedures down the line?"

Many are concerned this treatment will become a precedent for parents who have kids with disabilities.

"It’s the Pandora’s box opening up," said Emily Rogers, a representative from The Arc of Washington State, a disability advocacy group. "We need to preserve the dignity and respect of people with disabilities as valued participants in our communities. What will be
happening 20 years down the road? How will people be looked at … at that point?"

David Woodrum, UW professor of pediatrics and clinical director of the Katz Center, was closely involved with Ashley and her family throughout the decision-making process and surgeries. He said Ashley’s story should be taken as a single case, not as a precedent for future cases.

"Do I think the Ashley treatment should become standard?" he said. "No. I think this is a unique situation, and I don’t think it has created a slippery slope."

The ethics committee did not consider Ashley’s case with the expectation of it setting an example for the future, Diekema said.

"No one in that room felt this was going to have policy implications and that just because we said ‘yes’ to Ashley would mean we’d say ‘yes’ to anyone," he said.

Parents of children with disabilities were at the conference to represent both sides of the argument.

Sandy Walker, who has three children with varying levels of disability, feels the Ashley treatment would help her better care for her daughter, Jessica.

Walker said Jessica enjoys activities such as going down the slide with Walker, visiting the beach and swimming, all of which have become difficult or impossible as Jessica has grown.
However, Walker said there is a fine line.

"It’s very difficult to distinguish between what the benefit to the children is and what the ease of the parent is," she said.

It’s important for parents to consider what will happen when they’re gone before making a decision of this magnitude, Rogers said.

"Our focus should be squarely on Ashley and people with disabilities, so that the quality of life will still exist in 20 years or 30 years when that person doesn’t have family in their life anymore," she said.

One woman in the audience brought up the question of Ashley’s potential to communicate her own wishes in the future.

"I do hope that Ashley isn’t [later] able to communicate, ‘Why did you do this to my body?’" she said.

For many, this case raises a larger issue of consent and how much latitude parents have in making decisions for their children.

"Among the most difficult question that parents … have to be asked to ask themselves is, ‘have we successfully gotten beyond thinking of our child as an extension of ourselves and begun to look at her as an individual?"said Erik Parens, associate for philosophical studies at the bioethics
research center at the Hastings Center in Garrison, New York. "At the end of the day, I believe we must respect the decisions of ‘good enough’parents."

In the end, Parens said that the issue is very much a philosophical one."I do believe different means can express different values and can emphasize different understanding of ourselves," he said. "I’d rather change minds than bodies."