Behind the Pillow Angel

Doctors at the Seattle hospital that operated on a disabled girl to keep her from reaching sexual maturity -- the controversial "Ashley Treatment" -- were more troubled by the procedure than has been reported previously.

Published February 9, 2007 12:40PM (EST)

Ever since the "Ashley Treatment" caused a public sensation last month, the prevailing debate has centered around whether Children's Hospital and Medical Center in Seattle, which performed the controversial procedure, acted in the best interest of the mentally impaired child. The fact that the hospital's ethics committee signed off on the treatment, which included removing a 6-year-old girl's breast buds, giving her a hysterectomy, and administering high doses of estrogen to keep her short, has been held up as a backstop to discussion. "It was the consensus of the committee that this did in fact actually have potential to improve her life significantly and there was very little actual harm," Dr. Douglas Diekema told Larry King on CNN. Diekema led the ethics panel at the hospital and co-authored a medical journal article on the treatment. When the Los Angeles Times covered the journal article in January, it sparked a worldwide debate in the media, from an Australian radio show to the New York Times opinion page.

While it is true that the committee reached consensus, the truth is more complicated. The committee's arrival at consensus was anything but easily reached. After the journal article was publicized, the hospital attempted to present a united front to the public. It asked that no doctor, aside from Diekema and Daniel Gunther, the endocrinologist who performed the surgery, speak to the media. Yet Salon has spoken to pediatricians and doctors inside the Seattle hospital who remain deeply troubled by the so-called Ashley Treatment. Although they were somewhat more circumspect than critics at other medical centers, some of whom called the disfiguring treatment appalling, they agreed that disapproval inside the hospital was more acute than has previously been known.

Dr. Charles Cowan is a developmental pediatrician at the Seattle hospital and one of Ashley's doctors. He was not on the ethics committee but was in the room during the debate. "It was a really complicated discussion and everybody was emotionally distraught," he said. "Nobody was cavalier about this. On the one hand, we wanted to make it right for the family. When children are severely disabled, you can't untangle their interest from their parents." But when it came to backing the treatment, he said, "it was a very hard thing for us to violate our instincts and do that for parents and this to the child."

As those who have followed the story know, Ashley's parents requested the treatment to keep their daughter small and desexualized so they could continue to care for her at home and provide her with the "best possible quality of life." The parents, who have not identified themselves, call their daughter a "Pillow Angel" because she is "so sweet and stays right where we place her -- usually on a pillow." Rather than grant media interviews, the parents maintain a blog to describe their experiences with Ashley.

Because their request was novel and likely to be controversial, the Seattle hospital medical director convened an ethics panel to review the case and make a recommendation. Made up of hospital and University of Washington Medical School employees, the panel included doctors, nurses, administrators, social workers, an ethics professor, a chaplain and a lawyer -- 18 in all. The names of the panelists are confidential and the hospital has not made a record of the discussion public.

The committee convened on May 4, 2004. The session began with a PowerPoint presentation by Ashley's parents that described Ashley's life and why they wanted to keep her small. No record exists of exactly what they told the committee. But their blog outlines their reasoning and details of their daughter's life.

Ashley was born healthy and normal, but around the age of 3 months, her brain stopped developing. She has static encephalopathy with global developmental deficits, a nonspecific term that means that her entire brain is abnormal and its deficiencies will neither improve nor decrease. In her case, she will never sit up, speak or walk. Her caregivers will always transport her, feed her through a tube and change her diapers. Ashley reacts to light and music -- she loves opera, her parents said -- and smiles and laughs.

In early 2004, at age 6 and a half, she started to grow pubic hair, develop breast buds and enter a growth spurt. Her parents feared that if she continued to grow at this rate she would become too large to care for in the home. The mother worried that Ashley, like many mentally disabled women, would misunderstand and fear her monthly menstrual blood and suffer from cramps and breast tenderness, exacerbated by the straps that would cross her chest to keep her upright in a wheelchair. Her parents also feared that breasts could "sexualize" Ashley toward a caregiver, inviting the possibilities of abuse and pregnancy if she were raped.

"Ashley has no need for her uterus since she will not be bearing children," the parents wrote on their blog. "Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her." Remaining child-size, the parents explained, would not only decrease the incidence of bed sores and bladder infections, but make it much easier to move Ashley around. As a result she "can continue to delight being held in our arms and will be taken on trips more frequently and will have more exposure to activities and social gatherings."

The committee members met Ashley and watched her interact with her parents. They saw her in a wheelchair and how she responded to her father's voice. "We got to see this little girl and see a little slice of what her life was like," Diekema told Salon. "It's very clear that Ashley's life is pretty small, that it's about her family. It's not about running around on the playground or dating. Her life is what a 3-month-old's life is like."

After Ashley and her parents left the room, the committee spent two hours in debate. At the end, no one voted with a show of hands. But in the ensuing discussion, the air was fraught with tension. The committee grappled with the following questions. How does keeping Ashley smaller help her? Does the treatment take away anything important to Ashley's own life? They discussed alternatives to a hysterectomy, such as a birth control treatment that erases a monthly cycle. Yet that had negatives as well: Dosages of estrogen her entire life could increase her risk of terminal blood clots. When Ashley went for her annual pap smear and breast exam, she'd have to undergo anesthesia.

"There weren't easy answers here," Diekema said. "People didn't agree at the beginning what to do. But we heard arguments and debated and discussed and ultimately pretty much reached agreement to let the parents have these things done. Everybody left the room with some reservations because there are uncertainties. But nobody left the room feeling like we were making a big mistake. We thought the benefits were more likely to occur than the potential for harm. I think that even the most reluctant person in the room felt that this was at least a draw."

Several months after the meeting, surgeons at the hospital performed the hysterectomy and removed Ashley's breast buds. Shortly after surgery, they began a 30-month regimen of high-dose estrogen that would limit her adult height by prematurely fusing her bones' growth plates. Today, at age 9, Ashley is 4-foot-5 and weighs 65 pounds. Expected to have a normal life span, she will continue to age. Eventually she'll grow wrinkles and her hair will gray. Her joints may creak but she'll remain short, never grow breasts, have a period or become pregnant.

The public omission of the debate within the hospital and at the ethics committee results in part from federal medical laws to protect patient privacy. But because the public has been left unaware of the nuance and complexity of the ethical debate within the hospital, doctors worry that other disabled children could be more easily subjected to the Ashley Treatment. (On their blog, Ashley's parents write: "It is our hope that this treatment becomes well accepted and available to such families.") It was in part this fear of the case setting a precedent that initially spurred doctors at the Seattle hospital to question the surgical procedures.

"There were a number of people who were not very comfortable with the idea, and other people who weren't comfortable with it at all," said John McLaughlin, director of the neurodevelopmental program at the hospital. "In the end, the parents' articulate and assertive approach to wanting this done is what carried the day for that one child. However, most of us have major reservations about it for anyone else. My bottom line is that this is one more example of well-intended, but poorly thought-through treatment of kids with disabilities."

Pediatricians outside the walls of the Seattle hospital are more pointed. "I think they crossed the line," said Gregory Liptak, an Upstate Medical University at Syracuse professor of pediatrics, who works with developmentally disabled children like Ashley. "What they did to this child takes away her personhood. She's a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure." Liptak also serves on the American Academy of Pediatrics' Committee on Children With Disabilities. "This treatment is very aggressive," he said. "Children die from surgery every day. You can have very severe infection or bleeding that you can't recover from. To me the risk is not worth the benefit."

Other doctors say they are uncomfortable that the treatment served to compensate for a nonmedical problem. Ashley wasn't sick or in pain, and the treatment "medicalizes" what is basically a nursing care issue, said Dr. Mark Merkens, a neurodevelopmentalist at Oregon Health and Science University in Portland, Ore. "This is pretty radical stuff," he said. "Attenuating her growth is one thing, but to do a hysterectomy and breast-bud removal is bordering on mutilation. I find it appalling."

Cowan, one of Ashley's doctors, is well aware of the criticism outside the Seattle hospital. Yet he stressed that the case is more nuanced and complex than observers may know. None of the doctors critical of the case met Ashley or her parents; none of them are privy to the specifics of her medical history or treatment.

"Ashley cannot speak for herself, so someone must speak for her," Cowan explained. "Who is best suited to speak for this child? Is it those people who live with her day-to-day or is it some arbitrary outside body? You can't be sure that [the treatment] is a good thing to do. It has its merits. In the face of these, what I think you can say is that if the parents appear to be acting as loving advocates for their child and will deal with the consequences, it's OK to accede to their wishes. To say to this family, 'You are wrong, you can't have this procedure because we know what's better for you and your child for the rest of your life,' is an impossible thing for us to say."

To Merkens, though, it is not an impossible thing to say. He stated that he would never condone allowing parents to make this decision for their child, no matter how well meaning and competent they appeared. "I'm speaking from the core of values that drive me to do this work," he said. "Recognizing a child's normal growth and personhood has been the texture of the movement for the rights of persons with disabilities over the last decades. These interventions are significantly deforming and egregious; they don't recognize her being, her personhood. I think that trumps the parents' request for what they perceive is her best interest based solely on her quality of life."

What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland. "The real question is: Is there any benefit to this treatment?" said Nickel. "I would have counseled them to wait, to sit back and see what happens over a year because this child might accomplish most of this on her own."

The article also never mentions the breast-bud removal, ostensibly the most contentious element of the Ashley Treatment. (The parents' blog provided that piece of the story.) Taken as a whole, the Ashley Treatment may appear more beneficial than it really is, said Dr. Christopher Feudtner, a pediatrician and bioethicist at the University of Pennsylvania. That's troubling because the treatment, he said, "is prone to abuse."

"We're manipulating her body so that she can fit in better to society, while neglecting the inner manifestations of pain, and that's a radical extension [of current medical philosophy]," Feudtner added. "Some child, somewhere, with much less severe mental disability than Ashley, will get this treatment. It will happen and there needs to be more people standing up and saying this will have side effects we didn't anticipate."

Already at least three other families have approached doctors at the Seattle hospital, asking them to create their own Pillow Angels, according to McLaughlin. Last week in Syracuse, N.Y., the mother of one of Liptak's patients asked him to perform the Ashley Treatment on her severely disabled 9-year-old girl. Although Liptak is against the treatment, he agreed to bring her case to an ethics committee.

Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."

The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.

"We really need to set targets and move toward growing up as a field, achieving greater consensus and accountability in how we do our work," said Dr. Ellen Fox, the study's primary author and the director of the National Center for Ethics in Health Care at the Department of Veteran Affairs. "Ethics consultation meets a perceived need but if it's not done well, then that need's not being met. I worry that there may be places where it's not being done well."

Fox predicted that as the decades unfold, medical ethics will mature and grow more accountable. But even improved ethics committees may never be up to the task of sorting out the personal complexities of cases like Ashley's. Ultimately, it won't be known for decades how well she weathered her treatment, and whether remaining small will have served its purpose of keeping her at home with her parents, improving her life. In the final analysis, both her doctors and medical ethicists agree, Ashley's story is full of ambiguity and conflict, love and perseverance. It will continue to be debated, but one thing is certain: When the media moves on and ethicists switch topics to debate on their listservs, when Ashley leaves the hospital and her score of doctors, it is her parents who are left with the enormous challenge of caring for a child who will never walk, feed herself or say anything at all.

By Rebecca Clarren

Rebecca Clarren writes from Portland, Ore.

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