I’m not sure why the story of Ashley bothers me. All I know is that it does.
Ashley is a nine year old girl – called “Pillow Angel” by her parents – who has static encephalopathy. She has the mental ability of a three month old baby. Her condition is not expected to improve and after consultation with doctors her parents decided to have her uterus and breast buds surgically removed and estrogen administered to seriously restrain her growth.
The reasons given for these procedures are outlined in the linked BBC report and at first all seem logical; the doctors felt they were ethically justified and would allow Ashley a better quality of life.
So why am I disturbed by this story?
Basically, because there appears to be an anomaly. The parents, who I am convinced felt they were making the right decision, said:
“…….the central purpose of the treatment is to improve Ashley’s quality of life.”
Later, they say:
“………the girl lacks the cognitive capacity to experience any sense of indignity.”
To me, those two statements are contradictory. If Ashley has little or no cognitive capacity, then she can hardly recognize any change in her quality of life. Hence, the medical procedures could be of no benefit to the child, but would drastically aid the parents in looking after her.
As an animal welfare worker for many years, I was keen to persuade dog and cat owners of the advantages of neutering their pets. I was fully aware of the stray animal problems besetting the UK and anything done to reduce the numbers had to be worthwhile. But I was under no illusion that the benefits were of anything but a social nature – advantageous to the owners and society in general, rather than to the animals themselves. Dogs and cats, whatever their owners may feel, have limited cognitive capacities and accept mating and the birthing of litters as a matter of instinct. Of course, pet neutering does have the advantage to the animal of removing its instinctive need to roam in search of a mate, but that is hardly relevant in this instance.
I have nothing but sympathy for the parents of “Pillow Angel”, but I believe the doctors were wrong when they agreed to carry out the procedures. Parents are not always the best people to make decisions in this type of situation, and by deferring to their wishes the doctors failed to uphold medical ethics.
The parents of Ashley are attempting to keep her in a child’s body all her life, and I have to reluctantly agree with Agnes Fletcher of the UK’s Disability Rights Commission who, when asked for her opinion, called it a case of “…….unnecessary medical treatment to deal with what is essentially a social problem”
We have no compunction about spaying our dogs and cats at an early age, but when doctors take such drastic decisions with human beings – even those as handicapped as Ashley – to alter natural processes and prevent maturity, I think it is time to express concern.
Filed under: Difficult decisions