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The 'Pillow Angel' and an ethical nightmare
She's been dubbed the girl who will never grow up, but is the decision to inject a severely-ill nine-year-old with hormones to keep her child-sized evidence of a medical profession gone mad, or just unconditional love? asks Sarah Freeman.
There is something deeply disturbing about the case of the Pillow Angel.
Ashley is nine-years-old. A rare brain condition has left her unable to walk or talk, but the American youngster has forced the debate surrounding medical ethics back on the agenda after her parents revealed they are keeping her deliberately child-sized in the hope of improving her quality of life.
Perhaps it was the idea that Ashley, who is expected to have a normal
lifespan despite suffering from static encephalopathy, is now destined to be an adult trapped in a child's body which pricked the conscience.
Or perhaps it was the fact that as well as being injected with high doses of oestrogen, she has had a hysterectomy and surgery to prevent her breasts developing, which seemed unjustly invasive – and it didn't take long for the general feeling of distaste to be put into words.
While the couple insisted they had taken the step fearing she would one day become too big to lift, some described the couple's actions as "despicable".
Others went further accusing them of "Frankenstein-esque" behaviour, and even American paediatrician Jeffrey Brosco was forced to admit that most people would say it was "just plain wrong".
As ever with cases involving medical ethics, gut reactions are rarely to be trusted and with the parents of Ashley, whom they call Pillow Angel, having been moved to make public their side of the story, the waters were muddied.
"Ashley has not shown material progress in her mental ability since she was three months of age," said a statement posted on their website. "She is dependent on us in every way (including position change in bed), she can't hold a toy and we're not even sure she recognises us.
"Ashley was dealt a challenging life and the least we could do as her caregivers is to be diligent about maximising her quality of life.
"The decision to move forward with Ashley Treatment was not a difficult one for us as most seem to think.
"As a result, we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks etc) instead of lying down in her bed staring at the TV (or the ceiling) all day long.
"Ashley is a beautiful girl whose body is developing with no external deformities.
"She brings a lot of love to our family; we can't imagine life without her. She has a sweet demeanour and often smiles and expresses delight when we visit with her. The chance of Ashley having significant improvement, such as being able to change position in bed, is non-existent."
No normal parent would wish to see their child suffer, no respectable doctor would carry out unnecessary procedures, but while it seems both parties are genuinely convinced Ashley will be the main beneficiary, the emotions which now surround the case do little to shed light on the ethical rights or wrongs. "It's a dilemma rather than a problem which has a solution," says Dr Hugh McLachlan, reader at Glasgow Caledonian University and associate in its centre of ethics in public policy.
"I certainly wasn't outraged when I heard about the case, but while I have every sympathy with the parents, I can't say I really agree.
"In the field of medical ethics, consent is crucial. There are some circumstances when it isn't appropriate, say, for example, when someone has been seriously injured in a road crash and surgery needs to happen immediately.
"But we always have to be confident that if the person were able to communicate, they would give their consent, and that the treatment is for the medical benefit of the person concerned.
"I'm just not sure in this case that those conditions are being met. Ashley may benefit indirectly from the injections and the surgery, but it is not why they were done. They were carried out to help her parents move her more easily. There are also issues concerning human dignity. There is nothing wrong with someone who doesn't develop in the normal way, but invading a person's body to produce that outcome is hard to justify."
Unfortunately, the many books and journals devoted to medical ethics offer no hard and fast answers. While some will argue the details of the procedure now being called the Ashley Treatment fail to meet the rigorous criteria, others believe a case backing the decision can be made.
Mark Bratton, honorary lecturer in medical ethics and law at Warwick University, admits his initial reaction to news the body of a nine-year-old girl had been deliberately frozen in time was not exactly favourable, but painting the parents, who have chosen to remain anonymous, as playing God is neither helpful nor accurate.
"I don't think I was alone in thinking it seemed a little perverse," says the former barrister.
"However, I am seasoned enough to know that first impressions have no place in the arena of medical ethics. What you have to prove is that it's manifestly not in the best interests of the child.
"Questions remain about the physical implications and the long-term effects of the injections and the surgery, but certainly Ashley's parents could make a case on the emotional and social benefits the treatment will bring their child."
Ashley's is not the first medical ethics case to divide public opinion. Shahana and Raj Hashmi, from Leeds, found themselves the target of a pro-life campaign during their battle to save the life of their young son. Zain had been born with a potentially fatal genetic disorder and, when the search for bone marrow donor proved fruitless, the couple turned to IVF with the hope of selecting a baby in the womb who would have the same tissue-type as their sick son.
Although their own attempts at IVF were ultimately unsuccessful, the Hashmis did change the law to allow other parents of children with genetic diseases the right to provide a potential lifeline, through intervention in conception.
More recently, the parents of Charlotte Wyatt took their fight for their daughter's life to the High Court after doctors argued they should be allowed to let her die if her condition deteriorated.
Photographs of her distraught parents, who have since split up, arriving for the various hearings and the family snapshots huddled round the hospital bed served to pull on the public's heartstrings. While Charlotte did pull through, and was discharged from hospital just before Christmas, the case highlighted the often gaping chasm between what the medical profession believes to be best practice and what families want.
"Emotions are important," says Mr Bratton. "Parents are much more attuned to their children than anyone else and they see things in them no one else can.
"The emotional dimension is tremendously important, but it can be taken too far. We all recognise that emotions can cloud our judgment and, however difficult it may be at the time, families have to recognise that doctors, who have a degree of scientific objectivity are in a good position to know what is in their patients' best interests.
"Good ethics rely on conversation and, thankfully, there are very few cases which end up court. In those that do, more often than not there has been an absence of communication. Doctors can't afford to be distant figures who assume they have a monopoly on understanding, and parents need to make the most of the expertise within the profession.
"As ever in these cases, it's a question of balance."
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Saturday 26 May 2012
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