Growth-curbing therapy spurs rights dispute

The "Ashley treatment" developed for a girl with severe disabilities raises the medical ethics question: For whose benefit was it done?

By Kevin B. O'Reilly, AMNews staff. Feb. 5, 2007.

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.