Slippery Slope, or Warranted Beneficence?: The “Ashley Treatment” Revisited
Michelle Harrington, PhD Candidate, University of Chicago
In 2007, Ashley, a nine-year-old girl who cannot talk, walk, receive nourishment except through a tube, hold her head up, or roll over, captured the attention of the popular American media outlets. She had been diagnosed with “static encephalopathy of unknown etiology with marked global developmental deficits” and is estimated to have the cognitive capacity of a three-month-old infant. Nine years of special needs stimulation indicate that her cognitive capacity and developmental deficits will not improve. Ashley’s parents, while wishing to remain anonymous, host a website detailing “the Ashley Treatment”—a series of medical procedures performed at Seattle Children’s hospital, which included hormonally-induced growth attenuation, hysterectomy, and the excision of her breast buds. Controversy surrounds the actions her parents have taken in conjunction with medical doctors and ethicists to render her perpetually child-like—small, portable, and sexually undeveloped.
Since 2007, dozens of families around the world have sought similar treatment for their seriously disabled children, claiming, like Ashley’s parents, that such interventions will obviate needless suffering and enable them to better care for their child, given their child’s need for perpetual care, as well as their own physical limitations (i.e., inability to reposition or move a full-sized adult).
Ashley’s case, and others like it, represent enduring problems within medical ethics: how do families, the medical profession, and the larger community recognize, and appropriately care for, mentally handicapped individuals whose differences and incapacities suppose an often insurmountable “otherness”? As Stanley Hauerwas has written, "the mentally handicapped are among those in our society who are at the mercy of the ‘health-care’ system. They, therefore, become one way of focusing on many of the problems in medical ethics…Issues such as our attitude to suffering, what we understand health to be, the place of family in determining the care of children, the relation between caring and curing, quickly come to the surface" (Suffering Presence, p. 15).
Clinical ethicists who have taken up these cases have tried to carefully balance the principles of nonmaleficence, beneficence, and justice. In this paper, I will demonstrate that Christian ethical lenses borrowed from Paul Ramsey, the natural law tradition, and Margaret Farley can enrich bioethical principlism, respectively chastening our notions of proportionality, aiding our thinking about human flourishing, and recognizing the concrete reality of inspirited bodies in intimate relationships. My aim is not to stamp the so-called “Ashley Treatment” with approbation or condemnation, but rather to elicit fuller and more rigorous thought about the limits and possibilities of medicine, the finitude and frailties of caregivers, the flourishing of concrete persons and the theological primacy of relationships.
In 2007, Ashley, a nine-year-old girl who cannot talk, walk, receive nourishment except through a tube, hold her head up, or roll over, captured the attention of the popular American media outlets. She had been diagnosed with “static encephalopathy of unknown etiology with marked global developmental deficits” and is estimated to have the cognitive capacity of a three-month-old infant. Nine years of special needs stimulation indicate that her cognitive capacity and developmental deficits will not improve. Ashley’s parents, while wishing to remain anonymous, host a website detailing “the Ashley Treatment”—a series of medical procedures performed at Seattle Children’s hospital, which included hormonally-induced growth attenuation, hysterectomy, and the excision of her breast buds. Controversy surrounds the actions her parents have taken in conjunction with medical doctors and ethicists to render her perpetually child-like—small, portable, and sexually undeveloped.
Since 2007, dozens of families around the world have sought similar treatment for their seriously disabled children, claiming, like Ashley’s parents, that such interventions will obviate needless suffering and enable them to better care for their child, given their child’s need for perpetual care, as well as their own physical limitations (i.e., inability to reposition or move a full-sized adult).
Ashley’s case, and others like it, represent enduring problems within medical ethics: how do families, the medical profession, and the larger community recognize, and appropriately care for, mentally handicapped individuals whose differences and incapacities suppose an often insurmountable “otherness”? As Stanley Hauerwas has written, "the mentally handicapped are among those in our society who are at the mercy of the ‘health-care’ system. They, therefore, become one way of focusing on many of the problems in medical ethics…Issues such as our attitude to suffering, what we understand health to be, the place of family in determining the care of children, the relation between caring and curing, quickly come to the surface" (Suffering Presence, p. 15).
Clinical ethicists who have taken up these cases have tried to carefully balance the principles of nonmaleficence, beneficence, and justice. In this paper, I will demonstrate that Christian ethical lenses borrowed from Paul Ramsey, the natural law tradition, and Margaret Farley can enrich bioethical principlism, respectively chastening our notions of proportionality, aiding our thinking about human flourishing, and recognizing the concrete reality of inspirited bodies in intimate relationships. My aim is not to stamp the so-called “Ashley Treatment” with approbation or condemnation, but rather to elicit fuller and more rigorous thought about the limits and possibilities of medicine, the finitude and frailties of caregivers, the flourishing of concrete persons and the theological primacy of relationships.