Past Event

Who Defines Dignity and Quality of Life for Children with Disabilities?: The Ashley Treatment

In 2004, a 7-year-old girl with static encephalopathy, a rare disorder that causes permanent brain damage, underwent a series of procedures and hormonal treatments now known as the “Ashley Treatment.” Ashley cannot walk, talk, hold her head up, and is fed through a tube. She has been at the same level of cognitive ability since she was three months of age, and her condition is not expected to change in her lifetime. She is entirely reliant upon others for all aspects of her care and for decisions regarding her welfare. Her parents, with the assistance of a medical team at Children’s Hospital and Regional Medical Center in Seattle, decided to stunt her growth by administering high doses of estrogen, performing a hysterectomy, and removing her breasts.

Their goal was to ensure Ashley’s quality of life. If she grew to her expected adult size, her parents recognized that they would not be able to lift her into a bathtub or the car, carry her up and down stairs at a museum or in their home, or cradle her in their arms. They feared that they would not be able to physically care for her in a way that would allow her to participate in the daily activities of her family. Their concern about the discomfort of cramps and bleeding associated with regular menstrual cycles motivated the decision for a hysterectomy, as well as avoiding an unwanted pregnancy or the possibility of uterine cancer. The breast bud removal surgery ensured that Ashley would be comfortable lying down and in her chair with restraints that strap around her chest. Her parents anticipated that she would not be breast feeding a child, that it lowered her risk of breast cancer, and decreased her sexual appeal. This would also make her less susceptible to sexual abuse by a caregiver.

The Ashley Treatment has set off a maelstrom of debate over the ethics of medical interference in the natural growth and development of a young girlbecause of her disability. Many families of children with disabilities have supported Ashley’s family’s decision. They have shared stories of painful estrangement from loved ones because they could no longer care for their children and were forced to institutionalize them. Others tell of abuse and neglect by caregivers and deaths from complications associated with puberty. Ashley’s family feels her quality of life and dignity have been preserved through these procedures.

Critics contend that these procedures were medically unnecessary and comparable to the socially supportedpast practices of forced sterilization and eugenics. The question what the benefits are for Ashley and suggest the procedures instead benefited the parents. They argue that this treatment has infantilized her without regard for her dignity. Moreover, some challenge the constitutionality of such decisions being made by individuals or hospitals’ board of ethics.

Was there any harm done to Ashley by these medical procedures or has she been helped by them? Should we perform a medical procedure simply because we have the capability to do so? Does Ashley’s gender play a role in the arguements for these procedures? Does the failure of society to provide adequate support to families of children with disabilities lead to the Ashley Treatment? Should a social problem be address though a medical treatment? What is the recourse for families who cannot afford these elective procedures? Should a hysterectomy be used to prevent sexual abuse? How can our society ensure the best interests of those who cannot decide for themselves?

Join us this week at Café Society to share your thoughts on this important ethic debate.

This Week’s Articles:

The ethics of altering children

Ethicist in Ashley case answers questions

A brave and loving act by Ashley’s parents

The “Ashley Treatment”

Is ‘Peter Pan’ treatment a moral choice?

For more informaiton, please contact Kristin Millikan at 312.422.5580.