Hospital: Growth attenuation in disabled child illegal, not unethical

Ethics committee urged court review, but was ignored

The Seattle hospital that performed growth attenuation treatments and surgery on the severely disabled child known as "Ashley" took place in violation of Washington state law, but the hospital stands behind the ethics and best-interest issues that resulted in the treatment.

Hormone treatments, hysterectomy, and removal of breast buds were performed after her parents and her physician petitioned Children's Hospital and Regional Medical Center in Seattle to permit the procedures. The family said that by keeping Ashley physically small they would be able to care for her at home, rather than eventually having to move her into an institution, and that by removing her uterus and breast buds, she would be spared the physical discomfort of menstruation and breasts that interfered with harnesses and lift devices.

The treatment was performed in 2004, but the report of it that appeared in the October 2006 issue of Archives of Pediatrics and Adolescent Medicine ignited national debate over the ethics of sterilization, growth attenuation, and the rights of the disabled.1 An investigation by the Washington Protection and Advocacy System, a nonprofit group that advocates for the rights of the disabled, followed the release of the report, and the results disclosed in early May showed that the hospital broke state law by not obtaining a court order and disregarded the ethics committee's recommendation that a court should review the treatment before it was initiated.

The hospital has acknowledged the breach, apologized, and outlined steps it would take to prevent future violations of the law and promised to appoint to its ethics committee someone with a "disability rights perspective."

Ashley's best interests debated

One of the authors of the report, Douglas Diekema, MD, MPH, is education director at the Treuman Katz Center for Pediatric Bioethics at Children's and served on the ethics committee that reviewed Ashley's case before treatment was initiated.

Ashley is now 9 years old and cared for by her parents at home, where she is "an integral and much loved member of the family," Diekema writes. However, static encephalopathy with marked global developmental deficits caused her development never to progress beyond infancy. She cannot sit up, walk, or talk; she is fed via gastrostomy tube, and the specialists treating her say there will be no significant improvement in her cognitive and neurologic state.

When she started showing signs of puberty at age 6 (breast buds, pubic hair), her parents became concerned about the effects of growth and maturation on their ability to care for her and keep her comfortable. Lifting an immobile adult at home would prove very difficult. Fully developed breasts would interfere with Ashley's ability to comfortably wear the harness that allows her to sit up, and menses would make hygiene additionally difficult for her caregivers and uncomfortable for Ashley.

For those reasons, the family asked that Ashley undergo the three procedures that have come to be described jointly as "the Ashley treatment."

Individually, these procedures are not unheard of and are even common in very developmentally disabled people, Diekema told Medical Ethics Advisor early in 2007. What made this case unusual, he said, was the family's and physician's choice to have the multiple procedures vetted by the hospital.

"What made it unique is that it came to the ethics committee [at Children's Hospital] without there being a disagreement between the parents and physicians," said Diekema. The ethics committee reached consensus that the parents were acting in the best interest of the child, and approved the treatment, with the advice that it would need to be reviewed by a court before proceeding further.

Ethics approved, but law broken

That's where the hospital veered off the legal course, according to Children's Hospital Medical Director David Fisher, MD, who released a statement about the investigation in May 2007.

"Ashley's doctors and ethicists here at Children's Hospital have worked hard to act in Ashley's best interests," said Fisher. "There were many difficult issues and our actions were not taken lightly. Unfortunately, we failed to assure we had a court order authorizing us to proceed with a hysterectomy or removal of Ashley's uterus, as we should have.

"This was an internal miscommunication, which resulted in a violation of the law, and for that we take full responsibility."

Fisher admits that the ethics committee reported that a court review would be necessary before the hysterectomy took place, but the hospital instead relied on the parents' attorney, who conveyed a legal opinion that the treatment could go forward without a court order.

"This is where our system broke down — our medical staff and administration misinterpreted this guidance from the family's lawyer as adequate 'court review,'" Fisher explained. "However, the law is clear that a court order should have been obtained before proceeding with the hysterectomy."

Children's is introducing safeguards that will prevent repeats of the mistake when growth attenuation or hysterectomy in a disabled child is again requested at the hospital. A court order will be required for the three procedures that make up the "Ashley treatment," and the hospital's legal counsel will review and obtain a court order before any future growth attenuation procedures are scheduled.

Finally, Fisher said Children's plans to appoint an ethics committee member who has a "disability rights perspective."

Regardless of the violation of state law, Fisher insists that Ashley's best interests were at the heart of all decisions by her parents and by Children's.

"The decisions in this case were achieved only after long deliberation and discussion," he said. "We understand that there is disagreement over the conclusions we reached. That disagreement should have been brought before an impartial decision maker — a judge, in a court review — to assure all points of view were considered before undertaking the procedure."

Motives don't necessarily justify means

Ethicist John D. Banja, PhD, assistant director for health sciences and ethics at Emory University Center for Ethics in Atlanta, told Medical Ethics Advisor earlier this year that the true benefit or detriment to Ashley from the procedures performed on her likely won't emerge until years have passed.

But regardless of the benefits or drawbacks to the procedures, Banja finds the violation of law unsettling.

"There ought to be no unethical laws. All laws should speak to our considered moral sensibilities," Banja suggests. "So, the issue would be whether good arguments could be made, such that a reasonable person, acting in a patient-centered way, would knowingly or unknowingly violate the law."

In that sense, he said, the Ashley case troubles him — and raises more questions.

"Usually, one can detect very compelling reasons why laws are in place — especially laws governing end of life — because they have resulted from very careful deliberation over the difficult, conflicting circumstances that commonly arise in these situations," he explains. "So to knowingly violate one of these laws sounds peculiar to me. What reasons would the violator have? What don't we know about his or her thinking or intentions when they occurred? What do we know that would lead us to think he or she did the right (or the wrong) thing?"

Children's disclosure of the error and plans to prevent future violations of the law don't fully address the concerns of disability rights advocates, who want an end to treatments such as Ashley's altogether, says Curt Decker, JD, executive director of the National Disability Rights Network, based in Washington, DC.

"We hope that the agreement between [the Washington Protection and Advocacy System] and Children's Hospital will be the first step in resolving this issue and that the long-term result will be an end to the use of the 'Ashley treatment,'" he said. "I know the entire disability community will be carefully watching the implementation of this agreement."

Reference

  1. Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Arch Pediatr Adolesc Med 2006; 160:1,013-1,017.

Sources

For more information, contact:

  • John D. Banja, PhD, assistant director for health sciences & ethics, Emory University Center for Ethics, Atlanta, GA. E-mail: jbanja@emory.edu.
  • Curt Decker, JD, executive director, National Disability Rights Network, Washington, DC. Phone: (202) 408-9514.
  • Douglas Diekema, MD, MPH, educational director, Treuman Katz Center for Pediatric Bioethics, Seattle, WA. E-mail: diek@u.washington.edu.
  • David Fisher, MD, vice president and medical director, Children's Hospital and Regional Medical Center, Seattle, WA. Phone: (206) 987-2380.