Growth-curbing therapy spurs rights dispute

The parents of a 9-year-old girl with static encephalopathy went public last month with the story of how they chose to attenuate the child's growth using high-dose estrogen therapy. The "Ashley treatment," so dubbed by the girl's parents on a personal Web site, prompted outcries from the disabled rights community and left doctors and ethicists discussing how to draw the line between a reasonable medical treatment and a human rights violation.

Ashley's story came to light last fall when the girl's physicians published a case history in the October 2006 Archives of Pediatric & Adolescent Medicine in which they defended the use of growth attenuation in cases like Ashley's. The girl is permanently nonambulatory with the mental faculties of an infant. There is no hope for improvement.

The parents and the girl's physicians at Seattle Children's Hospital argue that what some see as a violation of Ashley's right to natural physical development will make it easier for her to be cared for at home and stay involved in family activities. The growth-attenuation therapy, begun when Ashley was 6, means the child likely will stay at her current height of 4 feet 5 inches. At the parents' request, physicians also gave Ashley a hysterectomy to prevent menstruation and surgically removed her breast buds to ease physical discomfort and prevent potential abuse later in life if she is cared for in an institutional setting.

An interdisciplinary hospital ethics committee approved the treatment, but that oversight is not enough, according to some disabled rights activists.

"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 disabled rights group Not Dead Yet, which participated in a protest outside AMA headquarters in January to condemn the Ashley treatment. A Chicago group, Feminist Response in Disability Activism, led the protest. (See correction)

"Accommodation, not operation," yelled a crowd of more than a dozen activists, many using wheelchairs, before assembled TV news cameras. It is only because society is unwilling to give caregivers the resources they need to provide care for their disabled loved ones at home that alternatives such as the Ashley treatment seem appealing, activists argue. The protesters also condemned the AMA for publishing the Ashley article in one of its journals. In a statement, the Association said it has no control over what its editorially independent journals choose to publish.

Ashley's parents, who have remained anonymous and are not granting interview requests, say each medical intervention was done not for their benefit but for their daughter's.

"Ashley sets the barometer in our home," the parents write on their Web site. "When she is happy we're happy, and when she is not, we're not."

For example, Ashley becomes extremely agitated if a single strand of hair lands on her face and cries -- the only way she can communicate -- for help. The parents say they are availing themselves of medical technology to alleviate the child's potential discomfort if she were to grow to normal adult size. Bathing her, changing her position frequently and moving her about in a jury-rigged double baby stroller are easier if Ashley stays her current size, the parents write.

Assessing the ethics

The question of who benefits from a medical intervention when surrogates are deciding is ethically crucial, experts say. The AMA's Code of Medical Ethics states, "If there is no reasonable basis on which to interpret how a patient would have decided, the decision should be based on the best interests of the patient, or the outcome that would best promote the patient's well-being." The AMA declined to comment on Ashley's case.

The chair of the Christian Medical and Dental Assns.' ethics commission, Robert Scheidt, MD, argues that, in this case, it is true that some benefit accrues to the parents because the interventions make it easier to care for Ashley. But, he said, the primary benefit accrues to the patient. The fact that the parents also benefit, a kind of ethical double effect, should not discount how Ashley gains from reducing the risk of bed sores and by receiving lifelong care from loving parents and siblings.

"People who are opposing this are citing the rule of medicine, 'Do no harm,' but that's just a broadside that doesn't address the situation," Dr. Scheidt said. "If they really do no harm and don't do anything, then are the parents eventually going to have to institutionalize this girl? That's very harmful."

Whether Ashley and children similar to her actually will benefit from growth attenuation is still unclear, and that colors the ethical calculus, according to Jeffrey P. Brosco, MD, PhD, clinical services director of the Mailman Center for Child Development in Miami.

Dr. Brosco, who co-authored an editorial on Ashley's case when it was first documented in the Archives of Pediatric & Adolescent Medicine last fall, said further Ashley treatments should occur under a research paradigm to assess carefully the risks and benefits of the interventions and to ensure more rigorous ethical scrutiny.

"As it stands now, any individual practitioner could do this tomorrow and there are no institutional safeguards to stop it from happening," Dr. Brosco said.

"Given that we have such a long history of discrimination against individuals with disabilities and the medical profession has not done a good job of protecting against that, we should want outside control in each case."

A spokeswoman for Seattle Children's Hospital said neither Ashley's physicians nor ethics committee members were granting interviews.