Growth Attenuation Press Conference

Statement from Children’s Hospital Medical Director, Dr. David Fisher

Statement from Children’s Hospital Medical Director, Dr. David Fisher

Ashley’s doctors and ethicists here at Children’s Hospital have worked hard to act in Ashley’s best interests. 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. We are instituting safeguards to ensure something like this never happens again.

The ethical questions regarding this treatment are profound, but they cannot be separated from the child — Ashley. Functionally immobilized and with the brain capacity of a three-month-old, Ashley is totally dependent on her family — a family who loves her beyond all measure and wants only the very best for her: a family who struggled to find the right answers for their daughter and ultimately concluded that limiting Ashley’s growth was the only way to ensure the long-term health and happiness of their child.

It was in that context that we agreed to consider growth attenuation treatment for Ashley as was requested by her parents. And it was in that context that after extensive review by physicians and ethicists that Children’s decided to go forward. Here’s what happened:

In 2004, one of our endocrinologists was consulted by Ashley’s primary care physician and her parents. Ashley was 6-years-old at the time and had severe developmental and cognitive disabilities resulting in the brain capacity of a 3-month old — she was unable to walk, talk or move on her own. Her parents wanted to personally provide loving care for her at home indefinitely and sought treatment options that would allow them to do so.

After extensive consultation among the parents, physicians, neurologists, surgeons, development specialists and ethicists, a plan was developed to limit Ashley’s growth using a high-dose estrogen therapy that would prematurely close the growth centers in her bones. Estrogen also would predictably cause uterine bleeding. Her parents additionally were very concerned that Ashley could later be a victim of sexual abuse as has occurred all too often in neurodevelopmentally disabled teens. For these reasons, a hysterectomy was performed. Knowing the family history of painful fibrocystic breast disease and that Ashley would be strapped in a chair everyday, her parents felt the chest straps would be painful once she developed breasts. An additional family concern was their history of breast cancer. For these reasons they also sought the removal of her breast buds.

The ethics committee at our hospital was convened to discuss whether the treatment options suggested were in Ashley’s best interests. The committee’s opinion supported the recommended treatments and also noted that a “court review” would be required. The parents consulted an attorney and obtained a legal opinion that concluded the treatment was permissible under Washington state law without the need for 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”. However, the law is clear that a court order should have been obtained before proceeding with the hysterectomy.

We take full responsibility for not assuring that a court order was obtained and for the miscommunication between the ethics committee and the treating physicians. Our process for assuring compliance with the law should have been effective. We are working to introduce new safeguards so that something like this never happens again. These safeguards include:

  • Children’s will require a court order for growth attenuation through hormone treatment, and for breast bud removal and/or hysterectomy when it involves a child with a developmental disability.
  • Children’s will not schedule procedures either to attenuate growth or perform hysterectomy or breast bud removal in children with developmental disabilities without review and approval from Children’s legal counsel, who will assure a court order is obtained before allowing a procedure to be scheduled.
  • Children’s will appoint someone with a disability rights perspective as a full member of the Hospital’s Ethics Committee, and will require committee review and guidance when a court order has been obtained by parents.

In closing, let me say again that we believe we acted in Ashley’s best interests. The decisions in this case were achieved only after long deliberation and discussion. 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. In the end, however, our process for review failed to assure compliance with the legal requirements. We can never let that happen again, and we will not.

About Seattle Children’s

Seattle Children’s Hospital, Foundation and Research Institute together deliver superior patient care, advance new discoveries and treatments through pediatric research, and raise funds to create better futures for patients. Consistently ranked as one of the top 10 children’s hospitals in the country by U.S. News & World Report, Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental needs of children from infancy through young adulthood. Through the collaboration of physicians in nearly 60 pediatric subspecialties, Seattle Children’s Hospital provides inpatient, outpatient, diagnostic, surgical, rehabilitative, behavioral, and emergency and outreach services to families from around the world.

Located in downtown Seattle’s biotech corridor, Seattle Children’s Research Institute is pushing the boundaries of medical research to find cures for pediatric diseases and improve outcomes for children all over the world. Internationally recognized investigators and staff at the research institute are advancing new discoveries in cancer, genetics, immunology, pathology, infectious disease, injury prevention, bioethics and much more.

Seattle Children’s Hospital and Research Foundation and Seattle Children’s Hospital Guild Association work together to gather community support and raise funds for uncompensated care, clinical care and research. The foundation receives nearly 80,000 gifts each year, from lemonade stand proceeds to corporate sponsorships. Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the country, serving as the umbrella organization for 450 groups of people who turn an activity they love into a fundraiser. Support from the foundation and guild association makes it possible for Seattle Children’s care and research teams to improve the health and well-being of all kids.

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