Physician-ethicist explains "Ashley treatment" decision

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.

Question: This was not just the first time growth was attenuated for this purpose. What perhaps shocked people most about the Ashley case was that two other radical interventions -- a hysterectomy and breast bud removal -- were done at the same time. Why do them all at once?

Answer: One of the things we did was to recognize that this wasn't a package. Unfortunately, that's kind of how the media and Ashley's parents presented it. We recognized that we might feel OK with doing one thing but not the other two, or vice versa. But we could not separate the issues entirely.

The risk assessment for each intervention depended on whether to say "yes" or "no" to another one. The primary risk of breast bud removal is anesthesia, but that risk pretty much goes away if you are doing anesthesia for the hysterectomy anyway and this is being added on.

The risks of high-dose estrogen therapy -- heavy bleeding, associated cancers such as breast and uterine cancer -- those risks go away if you are doing the breast bud removal and hysterectomy. ... The parents rightly identified connections between the three, but we didn't want to feel like we were forced to say "yes" to one thing because we felt one of the others was important to do.

Q: Ashley was in the room as her parents made their presentation to you. What impact did her presence have on your decision-making process?

A: It is one thing to sort of hear the sterile facts of the case and another to see the patient. You get information that way that hasn't been conveyed otherwise. Sometimes, it may cast doubts. If we were being told she had a mental age of 3 months and she didn't look like it, for example. But Ashley would get fidgety and start moving around in her chair, looking bored or not happy to sit there without stimulation, in much the same way a baby might start fussing.

Everyone going into that room had the attitude that many critics have put forward, which is a little bit of suspicion of these parents and whether Ashley's best interest was really their motive. ... Hearing the parents present their case was powerful. It was also very clear that this little girl was very important to them. Just seeing them all together really helped assuage any doubts people might have had about the parents' motivation or concern for her welfare. ...

There are all these little intangible things, the way a parent interacts with their child. You can tell the moment she's wheeled in -- she's clean, she's got nice clothes on. There are all these little clues that they're treating her like they would any child. And just looking at her, when you see her in her wheelchair, it's very clear that she's as limited as people have told you she is in terms of interaction. You can see where the straps in the chair come down [across her chest]. You also see how big she's getting. It's no joke. You can imagine trying to lift her now.

Q: Don't people have an inherent right to develop naturally, regardless of a disability?

A: It's not clear that natural development has any sort of meaning to someone like Ashley. ... The right to develop naturally is important only when you're in the position to have wanted to develop naturally.

Q: Is it important to Ashley to be alive?

A: What's important to Ashley is comfort and love and having a full tummy. What her parents did is to make sure that's optimized as she moves forward with life. She clearly is valuable within her family. She can't think of herself in the same way that you and I think about ourselves, but that does not mean she doesn't get some pleasure and enjoyment from being alive.