Ethics of the Ashley Treatment Keeping a Disabled Child Small
Ashley is nine years old scarpe nike, and at a height of 4'5" and a weight of 65 pounds, she's just like most average nine-year-olds. But Ashley is far from being average.
Shortly after she was born, Ashley began to show severe developmental delays, and she had problems eating. Physicians diagnosed her with static encephalopathy-severe brain damage. The case of the brain damage was unknown scarpe nike, but the results were devastating to her parents. Since her birth, she has remained in a continual state of infancy, unable to walk or talk, sit up on her own, roll over, or hold a toy. Doctors say she will never get any better.
Ashley is alert and aware of her surroundings and smiles readily, but does not maintain eye contact and is easily startled by loud noises. She goes to a school for disabled children, but her parents care for her at home and say that they have not been able to find any outside help that is suitable for Ashley's needs. Because the little brown-haired girl is delicate and spends most of her day lying on a pillow, her parents call her their "pillow angel."
Three years ago, Ashley's parents made a decision that they knew would forever change their lives, and their decision has become a topic of increasing debate among the medical community and in the eyes of the public. The bedridden girl had surgery in July 2004 to remove her uterus and breast buds, and then received large doses of hormones to halt her growth. She is about 13 inches shorter and about 50 pound slighter than she would have become as an adult, and she will stay that size for the rest of her life.
Ashley's case has been discussed in numerous public forums across the Internet and in the media since her doctors wrote about her in the October 2006 Archives of Pediatrics & Adolescent Medicine. After the article appeared, Ashley's parents began writing a blog to share with the world their reasons for deciding on the surgery, which the article called "the Ashley treatment."
Some people have harshly criticized Ashley's parents, saying that the surgery was barbaric and they decided to keep their daughter small surgically just to make their lives easier. But her parents claim that the drastic treatment will be beneficial to their daughter's future and will allow them to keep caring for her at home as she becomes an adult. An editorial in the journal where the "Ashley treatment" article was published said the decision was a poor one and questions whether the parents claims are true.
"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote on their blog. Ashley's mother says that she spent a great deal of time doing meticulous research to find out the results and ramifications of the surgery and what the outcome would be for her daughter, and although the decision was difficult to make, she is confident that it was a good one.
Ashley's parents say that although the surgery and hormone treatment seems drastic, keeping her small will actually protect her health by reducing the risk of bedsores and the other conditions that commonly afflict bedridden patients. And keeping her from going through puberty will remove the discomfort of periods, which often terrorize severely disabled girls. Having her breast buds removed means that she will not develop breasts and therefore the risk of breast cancer, which runs in Ashley's family, will be much less.
Art Caplan, an ethicist at the University of Pennsylvania, said that he finds the case troubling and indicative of the "slippery slope" thinking many parents feel by believing that "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood." Caplan has a problem believing that prevention of normal growth can benefit a patient. And, Caplan said scarpe nike, treatment that is not for a patient's direct benefit "only seems wrong to me."
Dr. Douglas Diekema is an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated. Diekema said that before the treatment began, he met with Ashley's parents and was convinced that their decision to stunt their daughter's growth was based only on their love for her and their belief that the treatment was in her best interests. Diekema was concerned with making sure Ashley did not suffer any harm from the treatment, but she did not and is doing well. "The more her parents can be touching her and caring for her, and involving her in family activities, the better for her, "he said. "The parents' argument was, 'If she's smaller and lighter, we will be able to do that for a longer period of time.'"
Ashley's parents go to great lengths on their blog to explain their reasons for having their daughter's growth stunted. Despite the criticism and widespread debate about the "Ashley treatment," they believe they have done the best thing possible for their daughter. "Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. But they caution people not to judge their decision as being a selfish one. "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers." Related：
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