Ethics debate surrounds surgery to stunt disabled girl's growth

Friday, January 5, 2007

An ethical controversy has surged in the United States and elsewhere around nine-year-old Ashley X (her family name has not been released). The disabled girl was operated upon at the request of her parents, to prevent her from growing, menstruating and developing breasts. The parents, who wish to remain anonymous, explain their situation on a blog entitled The "Ashley Treatment". There have been over 1000 reactions on the blog so far.

Ashley suffers a condition termed static encephalopathy with marked global developmental deficits of unknown etiology, which means brain damage of unknown cause leading to a kind of static condition. She can make sounds, move her arms and kick her legs, but she cannot change her position, eat, walk, talk etc. Many of these children are in poor health and die young, but Ashley is in good health. For all of these functions she depends on her caregivers. Most of the day she passes watching her surrounding, lying on a pillow. Her parents call her their "Pillow Angel", "since she is so sweet and stays right where we place her—usually on a pillow."

Quote

Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings.

-Ashley’s Mom and Dad

Ashley's parents want to keep her at home and care for her themselves, and they want to guarantee their daughter's quality of life. To this end, they say, Ashley underwent several surgical procedures and medical treatments during a period of three years. To attenuate her growth, Ashley was given high doses of the hormone estrogen. Ashley now measures 4ft 5 (1m 35cm) and weighs around 75 lbs (34 kg), which is below her expected length and weight. Her low body weight and size would improve her comfort, and at the same time facilitate the work of her caregivers.

Surgery to remove her uterus (a procedure called a hysterectomy) and breast buds were performed, so Ashley does not menstruate and will not develop breasts, both of which parents think only would cause her discomfort. Since high estrogen levels can cause menstrual bleeding and breast development, the surgery was also meant to limit these effects. She also underwent surgery to remove her appendix, because it would be difficult to diagnose appendicitis given Ashley's low communication possibilities.

The case report

Dr. Gunther, an endocrinologist, and Dr. Diekema, a pediatrician ethicist, from the Department of Pediatrics, Children's Hospital and Regional Medical Center in Seattle published a case report on her treatment in the October 2006 issue of the medical journal Archives of Pediatrics and Adolescent Medicine. They suggest that "after proper screening and informed consent, growth-attenuation therapy should be a therapeutic option available to these children should their parents request it". In the paper, they refer to the American Academy of Pediatrics, which holds the belief that "most parents desire to raise their children with special health care needs at home", and "that all children, regardless of the presence of a disability, belong in families." Ashley's parents were quoted to fear that without an intervention, their daughter would be "put in the hands of strangers."

Ashley has two siblings, and the medical report notes that "Despite her severe disability, she clearly is an integral, and much loved, member of the family." The treatment was approved by a local multidisciplinary ethical committee consisting of 40 members. The committee noted that "although justified in this patient, growth attenuation should be considered in future patients only after careful evaluation of the risks and benefits on a case-by-case basis."

In the case report discussion, the physicians recognize that surgical removal of the uterus in disabled girls "is controversial and invariably associated with the negative connotations and history of forced 'sterilization.'" Indeed, some reactions on the internet accused the parents of practices bordering eugenics and "perversity". The hysterectomy eliminates the need for contraceptive hormone treatment in a population with "no realistic reproductive aspirations". Estrogens carry a theoretical risk for thrombosis, but the clinical importance in this setting remains unknown. There seems to be a risk of seizures in a population with a predilection for epilepsy.

In their paper, the authors also discuss the fact that Ashley's small stature could cause caregivers to continue treating her like a nine-year-old, even if she becomes older. But they do not believe that such "infantilization" will harm the child, because they believe her intellectual capacities are at about the same level, so such an approach may be in fact appropriate.

In an editorial by Dr. Brosco, Department of Pediatrics, University of Miami, he discusses the fact that there is no evidence to support the hypothesis that keeping a disabled person small allows them to be cared for at home for a longer period. He rejects the argument of interfering with nature too much, since it is not uncommon practice to treat girls who grow taller than what is normally accepted with estrogens. He argues that a small gesture alone might induce some intuitive ethical concern, but that shouldn't stop us "if we truly believe that the worth of a person goes deeper than his or her physical appearance."

Dr. Brosco also draws attention to a broader social context, indicating that the burden for the family is higher in a society that fails to provide adequate support. He notes that when the child enters the adult medical and social system, parents tend to get less access to often expensive care aids and devices. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients," was the comment of another medical ethicist, Dr. Joel Frader of Chicago's Children's Memorial Hospital.

In bioethical issues, where benefits and risks are weighed, "do no harm" is one of the governing principle for doctors, who swear it in the Hippocratic oath. Arthur Caplan, a biomedical ethicist at the University of Pennsylvania told Reuters that "Puberty, growth (and) aging happen to all of us and there are plenty of people out there who will require help from family or society... The solution isn't to take every person who is schizophrenic or autistic or behaviorally disoriented and keep them in a child-like state." He further warns of the slippery slope implications this kind of thinking might have.

Sources

Daisuke Wakabayashi. "Seattle parents defend treatment for disabled daughter" — Scientific American, January 05, 2007
"Surgery to stunt disabled girl's growth raises ethical questions" — CNN, January 4, 2007
Ashley's Mom and Dad The "Ashley Treatment" - Towards a Better Quality of Life for "Pillow Angels" Windows Live Spaces, January 3, 2007
Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability: a new approach to an old dilemma. Arch Pediatr Adolesc Med, 2006; 160: 1013-1017. PubMed
Brosco JP, Feudtner C. Growth Attenuation - A Diminutive Solution to a Daunting Problem. Arch Pediatr Adolesc Med, 2006; 160: 1077-1078. PubMed

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