Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma in patient care, you vote, and then we present an expert's judgment.
Last week, you voted on the case of parents requesting to "freeze" growth in their young child with severe neurodevelopmental disability. Here are the results from more than 14,000 votes:
Should the doctors permanently "freeze" Charity in her 6-year-old body at her parents' request?
Yes: 7,985 (56%)
No: 6,328 (44%)
Should they wait a few more years to make the decision in case the daughter's cognition changes?
Yes: 6,002 (42%)
No: 8,242 (58%)
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt from his new book, :
The therapy Carla and Clifford seek for Charity is not very different from the intervention performed upon a child then known only as Ashley X at Seattle's Children's Hospital and Regional Medical Center starting in 2004. Ashley, also called the "Pillow Angel" by her family, suffered from a potentially debilitating condition, static encephalopathy, which in her case left her with limited motor skills and the cognitive abilities of an infant.
At the age of 6, the girl showed signs of precocious puberty -- a common phenomenon in neurologically compromised children. Her parents, reportedly hoping to increase her comfort and make caring for her easier, sought a series of medical procedures, including a hysterectomy to prevent menstruation, breast bud removal, prophylactic appendectomy, and hormonal therapies to close her growth plates prematurely.
They accepted the small degree of risk involved in the surgeries. As a result of these interventions, physicians Daniel Gunther (who , though reportedly not because of this case) and Douglas Diekema achieved their goal of reducing the girl's height by an estimated 20% and her weight by an estimated 40%.
However, these "growth-attenuation treatments" generated considerable conflict within the bioethics community and among the public more generally. The hospital itself had to apologize for breaking the law, because it failed to obtain a court order before performing the hysterectomy despite a state statute requiring a judicial ruling for involuntary sterilization.
Many disability rights advocates and feminists criticize the surgery, which has become known as "the Ashley Treatment," as an affront to the dignity and the potential of the incapacitated child.
Detractors also argue that the alleged need for the procedures reflects a failure of the social service system to provide adequate care and support for children like Ashley. Arthur Caplan, a leading bioethicist who opposed the intervention, told CNN, "I think mutilating surgery involving removal of breast buds is indefensible under any circumstances ... Growth retardation is not a substitute for adequate home aides and home assistance."
Essayist Nancy Gibbs in Time asked rhetorically, regarding the claim that Ashley's decreased size would enable her parents to transport her on family outings more easily: "How far would Drs. Gunther and Diekema take this argument? Would they agree to amputate a child's legs to keep her lighter and more portable?"
Most unsettling was a critique penned by Anne McDonald, an Australian woman with the same condition, static encephalopathy, who uses a wheelchair and who had been mistakenly diagnosed as "severely retarded" at age 3. If it could happen to her, why not to Ashley?
Yet Gunther and Diekema also had their defenders. These included Ashley's parents. Ashley's father, in an interview with the The Guardian, noted that "no amount of resources can replace the direct benefits to Ashley that the treatment provides" in terms of decreased pain and increased levels of comfort. He expressed regret that the public had not focused upon the "unique" nature of Ashley's impairments or the "significant and direct benefits" that she had obtained from the treatment.
Whether one supports or opposes growth-attenuation therapy for children like Ashley and Charity, a consensus exists that such interventions should occur only in the most extreme cases. As of 2016, at least 65 other children have undergone growth-attenuation therapy.
It should be obvious, but we'll say it anyway -- this is not to be construed in any way as legal or medical advice.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College. Appel is the author of the new book, .