The Ashley Treatment: An Ethical Analysis

Abstract

Is it medically and ethically appropriate to shorten and sterilize a six-year old girl to make it easier for her parents to properly care for her now and in the future? This is the question that confronted Seattle's Children's Hospital when the parents of a sixyear old girl named Ashley approached the Ethics Committee requesting approval for various procedures that would improve the quality of life of their daughter. Ashley, called the “pillow angel” by her parents, suffers from a developmental brain condition known as static encephalopathy. Her profound developmental disabilities and her inability to ambulate, provide numerous challenges for her parents and caregivers. If her growth could be permanently arrested while she was still small in stature, then according to her parents, the benefits would give Ashley a better quality of life and allow her parents to continue to care for her at home. The Ethics Committee recommended the procedure to keep Ashley small. High-dose estrogen treatments over the last two years both inhibited growth and rapidly advances maturation of the epiphyseal growth plates, bringing about permanent attenuation in size after a relatively short period of treatment. In addition to the high-dose estrogen treatment, physicians removed Ashley's uterus, to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape, and removed her breast buds because of a family history of cancer and fibrocystic disease. Ashley also had an appendectomy for preventative reasons. This treatment has now been named the “Ashley Treatment.” The debate surrounding this treatment contrasts those who argue that the Ashley Treatment violates the child's human rights and is for the sake of convenience for the parents versus those who argue that this treatment is not only in the best interest of the child because it will provide a better quality of life but is also in the best interest of the parents and society as a whole. Determining whether this treatment is in the best interest of the child is both a medical and ethical issue because substantive questions have arisen about this procedure. Are there uses of medical technology that are inconsistent with respect for the human person? If the Ashley Treatment becomes widely accepted, could this lead to the use of more controversial procedures that might reduce the size or reproductive capacity of other vulnerable people? If this treatment becomes a part of standard medical practice, could it affect insurance coverage and rates? These questions are important because other families are contemplating the same procedure for their children.