Friday, January 12, 2007

Further article on "Ashley treatment"

I have been discussing the "Ashley treatment" and Pillow angel theme with a lot of people lately, not so much from the blog, but amongst our friends. My view of the situation, that the parents did the right thing by their daughter, has made me sound like a Nazi compared to others in the Medical and Disabled Community. However, the editors of Scientific America, on their site blog, have a different opinion. The article, in its entirety:

"January 4, 2007
06:23:43 pm, Categories:
Ethics and Science, Medicine, Politics and Science, Public Policy, 980 words
Pillow Angel Parents Deserve Credit, Not Blame

Our online news editor here--Lisa Stein--asked me to post the following for her about the
"pillow angel" story from today. Without further ado:
Parents of a severely disabled girl recently revealed that they took the dramatic step of keeping their nine-year-old daughter pint-sized to, in their view, give her a better life. The child, Ashley, has a condition called static encephalopathy, a rare disorder that causes permanent brain damage. The effects on development depend on the part of the brain involved and on the severity of the damage. Developmental problems may include any of a range of disabilities such as cerebral palsy, learning disabilities, mental retardation, autism, PDD, speech delays, attention deficits, hearing and vision impairments, oral motor problems... Ashley's parents, who live in Seattle, report their daughter has the mental capacity of a three-month old baby and cannot walk or talk; they call her "Pillow Angel," because she doesn't move from wherever they put her down, usually on a pillow.
These parents feed and bathe Ashley, clothe and carry her--just as they would an infant. Recognizing she would never improve, they decided to start controversial treatments three years ago that involve giving her hormones to minimize her growth. This has kept her small and made it easier to care for her and involve her in family activities. Ashley's parents also opted for surgery to block breast growth and had her appendix and uterus removed (since she will not be bearing children) to eliminate bleeding and discomfort that might accompany a period. They began administering the hormone therapy in July 2004 through patches on the skin. Ultimately, it could reduce her adult height by 20 percent and her weight by 40 percent.
The parents said on a blog that they were driven by a desire to "provide Ashley with the best quality of life'' and not by the convenience that keeping her tiny might afford them.
Who are any of us to second-guess their motives--or to judge what they have done? Unless parents of children with similar ills, we can imagine but cannot possibly know what goes into dealing with a child in such circumstances, a child who will never grow emotionally or intellectually, never be able to learn or to play... who will be forever dependent on us or on someone else for her care.
It is hard enough to raise a healthy child--let alone one with a condition like Ashley's. Clearly, these parents did not reach their decision lightly or on their own: They sought the input and the approval of a panel of ethics experts at the University of Washington in Seattle--and the treatment was only started after its OK. The board debated and thoroughly explored all of the ethical questions involved, such as whether these parents have the right to tamper with nature and to prevent this child from growing physically or to ever have children of her own.
Dr. Douglas Diekerna, who was on the ethics committee, told the BBC that the panel gave its go-ahead "because the parents convinced us it was in fact in this little girl's best interests... If she were smaller, it would be much easier for them to continue to provide a much more personal level of care.
"Dad is frequently the one that lifts her from one place to the other, so if she gets bigger that becomes much more difficult,'' he said, "as they get older it becomes more difficult. At that point in time, they would be forced to consider using a mechanical lift, which is much more impersonal."
The parents insist that they did not do this to make their lives easier. "Rather," they wrote on a blog, "the central purpose of the treatment is to improve Ashley's quality of life... Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashely with the best possible quality of life."
Despite the parents' claims, many criticized their actions, arguing, among other things, that this could open the door for parents to impose medical treatments on their children designed to suit their own selfish needs. Where will this stop? some ask.
On the face of it, what these parents are doing might seem inhumane, barbaric, even; some would argue that they have no right to violate Ashley's personal freedom or tamper so flagrantly with nature or, if religious, charge that the parents have no right to interfere with Ashley's God-given body.
They all have their points, but, in the end, it is the parents who must decide what is best for their child.
Ashley has the mental ability of a three-month old infant and physicians have said there is no hope of her ever improving. She cannot walk or talk, she cannot care for herself now and there is no chance that she will ever be able to care for herself.
And therein lies the heart of the matter. It is very easy to judge from afar, but the bottom line is that these parents are doing what many others have chosen not to do or cannot do, perhaps because of a lack of federal and state support: They are caring for their severely disabled child, while others in their situation may have (and have) thrown in the towel long ago and turned over her care to someone else, perhaps even institutionalized her. They deserve credit not criticism. These parents have given us no indication that they are self-motivated, that they are driven by their own needs or greed. If they were, they would have washed their hands of the whole matter the moment they realized the hopelessness of Ashley's situation and the emotional and physical toll her care would take on them.
They also deserve credit for publicly revealing their plight--and opening the debate on such a volatile subject so that others might benefit from the discussion."