By Susan Brinkmann, OCDS
Staff Journalist
A 20-member group of doctors, ethicists and parents of disabled children has come to the conclusion that deliberately stunting the growth of disabled children to make them easier to care for is “morally permissible” under certain conditions.
SeattlePI.com is reporting that the group, which published their findings in the current issue of the Hastings Center Report, believes giving severely disabled children high doses of estrogen for the purpose of closing their growth plates is an “ethically acceptable decision” in certain cases. These cases include children who have an IQ of 25 or less and have other persistent and profound disabilities.
“The paper was the product of trying to articulate these issues,” said Benjamin Wilfond, a pediatrics professor at the University of Washington and director of Seattle Children’s Center for Pediatric Bioethics.
“What hospitals or other groups do with it is up to them. We hope we’ve contributed to the conversation not just about pediatric bioethics, but about children with profound disabilities.”
The study began after the firestorm that erupted over the 2006 case of a six year-old girl named Ashley who had the mental capacity of a three month-old and was unable to walk, talk or move on her own. Her parents decided it would be easier to care for the girl if they kept her small in stature and removed her reproductive organs to prevent her from experiencing menses. After performing a hysterectomy on Ashley and removing her breast buds, they began to give her high doses of estrogen which resulted in stunting her growth from a predicted five-foot-four to about four-foot six inches in height.
What became known as “Ashley’s treatment” ignited a furious debate, particularly among disability rights groups who believe society should try harder to accept disabled people “as they are.”
At the time, noted anti-euthanasia activist and attorney Wesley J. Smith spoke out very forcefully against Ashley’s Treatment for reasons ranging from the potential harm caused to the child to whether the parents’ good motives justified the acts.
“This very disturbing case raises two fundamental questions,” Smith wrote in a 2007 article appearing in National Review Online. “First, did these medical interventions support Ashley’s intrinsic worth as a human being? Second, did her disability and the parents’ loving motive transform what would normally be deemed terrible abuse into legitimate therapeutic procedures that were ethical for the doctors to perform? The answer to both questions, I think, is no.”
He considered the mastectomy to have been “ethically invalid and superfluous” because it was merely intended to prevent the girl future “discomfort” from her wheelchair belts or from the possibility of being sexually abused.
He also opposed the hysterectomy because menses is controlled in profoundly disabled women in other ways and “the cutting out of a healthy organ seems wholly unwarranted.”
The hormone injections to prevent growth amounted to “human experimentation”, Smith said, because “the use of high-dose estrogen injections as a method of keeping a child from becoming normal-sized is utterly untested and unproven.”
This is why Ashley’s doctors could only estimate how much her growth would be stunted.
“They also admit that the potential beneficial and deleterious health effects are ‘difficult’ to assess ‘because we have no direct experience with high-dose estrogen treatment in young children.’ This raises the worry that Ashley was used as the subject of unethical human experimentation, a concern heightened by the doctors’ acknowledgment that Ashley’s Treatment ‘is a novel, untested, medical intervention.’”
Smith was particularly disturbed to learn that the panel, which admitted they could not agree on the use of procedures such as masectomies and hysterectomies, decided to “compromise” by permitting the use of high-dose hormones to stunt growth. They based their decision, in part, on the testimony of parents of disabled children, one of whom described the difficulty she endures while caring for a six-foot, 190 pound son.
“I understand the desire to make it easier to handle profoundly disabled children by keeping them small . . . but that doesn’t justify exposing them to harm in what amounts to human experimentation,” Smith writes.
“At the very least–since the ‘treatments’ are really for the caregivers, and thus only indirectly benefit the child–before any growth stunting interventions are rendered, the plan should be reviewed by a court and child welfare officers with those advocating for the interventions required to meet a very high burden of proof before proceeding.”
As far as medically unnecessary and/or mutilating surgeries, they “should not be permitted at all,” he said.
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