THE ASHLEY TREATMENT "Given Ashley's mental age, a nine and a half year old body is more appropriate and more dignified than a fully grown female body," say the girl's parents. Image: http://ashleytreatment.spaces.live.com/blog
On January 3 of this year the parents of a girl with static encephalopathy, a disorder that leaves her unable to move and with the cognitive capacity of an infant, announced on a blog that they had been using hormones to stunt the growth of their daughter for medical and quality-of-life reasons. [More details are available via the original news report of the story.] The resulting, and very public, debate--much of it carried out in the comment thread of the original blog--has ranged from support for the parents to accusations of eugenics and worse.
In order to cut through the noise, we asked three bioethicists--doctors not unlike those who, as members of a medical ethics board, authorized the treatment in the first place--to relate their professional opinion of the case.
All three bioethicists came down firmly on the side of the parents and the decision of the original ethics board--but with a few reservations. Their discussion ranged from issues of privacy raised by the media frenzy surrounding this case to the question of whether or not this intervention is a technological fix for a social problem.
What follows is an unedited transcript of an e-mail dialogue that took place Friday, January 5, between the following participants:
Joel E. Frader, MD, is division head of general academic pediatrics at the Children's Memorial Hospital, Chicago, as well as a professor of pediatrics/medical humanities and bioethics at Northwestern University's Feinberg School of Medicine.
Norman Fost, MD, MPH, is a professor of pediatrics and bioethics as well as director of the program in bioethics and vice chair of the Department of Medical History and Bioethics at the University of Wisconsin Medical School.
Benjamin Wilfond, MD, is director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and a professor at and chief of the Division of Bioethics, Department of Pediatrics, University of Wisconsin Medicine.
Joel Frader, 9:03 AM EST January 5, 2007Drs. Gunther and Diekema in Seattle reasonably defend the decision to support, and act on, the parents' request to limit growth of the six and a half year old girl with severe cognitive impairment by administering drugs to close the growth plates of her bones. (cf. Attenuating Growth in Children With Profound Developmental Disability Gunther DF, Diekema DS.)
Parents and other care providers for entirely dependent patients with such serious disabilities do face physical challenges when the patients grow large. One encounters difficulties lifting and turning the patients for routine care--including bathing, prevention of skin breakdown, exercises to preserve joint mobility, and so on. I find it difficult to argue that this child and similar patients benefit merely from reaching their genetic growth potential.
In addition, reducing the demands and stress on caregivers serves the interests of the patients. I have more difficulty with measures such as hysterectomy--an intervention with more risk and more discomfort to the patient--in order to avoid having to deal with monthly periods once, or if, menstrual cycles begin. Absent excessive bleeding uncontrollable by medical means, once menstruation begins, hysterectomy seems hard to justify. Also, some family members and health care professionals seem to believe that hysterectomy limits the potential for sexual abuse by others, though one can find no empirical evidence to substantiate that fear.
In the editorial response to Gunther and Diekema, Brosco and Feudtner correctly note that measures such as the one applied to Gunther's patient in some sense miss the point. That is, our society generally provides insufficient support for persons with disabilities and those who devote time, effort, and resources to caring for the patients. A more generous society would make sure caregivers have assistance devices and other help necessary so that the physical, social, and emotional work of providing care does not become overwhelming. I agree with that. However, in the absence of an adequate system, the measures taken to limit the Seattle patient's growth seem reasonable and well within the scope of caring parents' authority to undertake.