The Ashley Treatment: Best Interests, Convenience, and Parental Decision-Making
Liao, S. Matthew, Savulescu, Julian, Sheehan, Mark, The Hastings Center Report
The story of Ashley, a nine-year-old from Seattle, has caused a good deal of controversy since it appeared in the Los Angeles Times on January 3, 2007. (1) Ashley was born with a condition called static encephalopathy, a severe brain impairment that leaves her unable to walk, talk, eat, sit up, or roll over. According to her doctors, Ashley has reached, and will remain at, the developmental level of a three-month-old. (2)
In 2004, Ashley's parents and the doctors at Seattle's Children's Hospital devised what they called the "Ashley Treatment," which included high-dose estrogen therapy to stunt Ashley's growth, the removal of her uterus via hysterectomy to prevent menstrual discomfort, and the removal of her breast buds to limit the growth of her breasts. Ashley's parents argue that the Ashley Treatment was intended "to improve our daughter's quality of life and not to convenience her caregivers." (3) They also "decided to share our thoughts and experience ... to help families who might bring similar benefits to their bedridden 'Pillow Angels,'" which means that this treatment has public policy implications.
In the case of incompetent children like Ashley, parents are the custodians of the child's interests and are required to make decisions that protect or promote those interests. Doctors should also offer treatments that are in Ashley's best interests. It would be wrong to offer a treatment that was against the interests of the child but in the parents' (or others') interests. The central questions in medical ethics in relation to this case are: Were these treatments in Ashley's best interests? Do they treat her as a person with dignity and respect, and were they likely to make her life go better?
Ashley's parents argue that they sought the Ashley treatment in order to alleviate Ashley's "discomfort and boredom." Their contention that stunting Ashley's growth was done for sake of improving "our daughter's quality of life and not to convenience her caregivers" is controversial.
According to her parents, keeping Ashley small--at around seventy-five pounds and four feet, five inches tall--means that Ashley can be moved considerably more often, held in their arms, be taken "on trips more frequently," "have more exposure to activities and social gatherings," and "continue to fit in and be bathed in a standard size bathtub." All this serves Ashley's health and well-being because, so the parents argue, "the increase in Ashley's movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints," which means that Ashley will be less prone to infections.
Undoubtedly, the parents are right that Ashley will benefit in the manner they have proposed if they can do all these things for her. The claim about the value of small size in a particular social circumstance is certainly not unique. Dwarves have given the same argument as a justification for preferring to have short children. They have argued that parenting dwarves is desirable for them because of their own size and because they have made modifications to their homes and their surroundings to take into account their short stature. (4)
As a general point, it is entirely conceivable that in some natural, social, or psychological circumstances, having a normal body may be a disadvantage. In H.G. Wells' short story "The Country of the Blind," Nunez, a mountaineer in the Andes, falls and comes upon the Country of the Blind. Nunez has normal vision, but in this society of blind people, he is disadvantaged, and he eventually consents to have his eyes removed. Similarly, in a world of loud noise, being able to hear could be a disadvantage. In the case of apotemnophilia--a body dysmorphic disorder in which the patient feels incomplete possessing all tour limbs--doctors justify amputation by reasoning that the patient's psychology demands it. In Ashley's case, having a normal-sized body could be a disadvantage. …