Physician-ethicist explains "Ashley treatment" decision

The chair of the IRB that approved the controversial treatment of a child with severe disabilities offers insight into the dilemma.

By Kevin B. O'Reilly, AMNews staff. March 12, 2007.

When the case of Ashley X came to Douglas S. Diekema, MD, MPH, more than three years ago, he knew it was no ordinary ethics consultation. Little did he know, however, that his role in the decision to approve high-dose estrogen therapy to attenuate Ashley's growth would draw comparisons to Josef Mengele when the story made headlines in January.

Ashley, now 9 years old and 4 feet 5 inches tall, has static encephalopathy that has left her permanently nonambulatory and with the mental age, doctors say, of a 3-month-old. She cannot speak and is fed through a tube. Her condition will not improve.

Ashley's parents asked doctors at Children's Hospital and Regional Medical Center in Seattle to curb her growth, and remove her uterus and her breast buds to maintain the girl's quality of life at home and protect her from pregnancy if she were ever institutionalized. The "Ashley treatment," so dubbed by the parents at their personal Web site, appalled disability groups. Activists from Feminist Response in Disability Activism, Not Dead Yet, ADAPT and Access Living said the treatment violated the girl's rights and set an alarming precedent.

Dr. Diekema stands by the decision to approve the Ashley treatment. He is a pediatric emergency physician, director of education at the University of Washington School of Medicine's Treuman Katz Center for Pediatric Bioethics, and chair of the Children's Hospital institutional review board that handled the case. AMNews recently spoke with Dr. Diekema about the most challenging ethics case of his career.