The Right Decision?

Hecateh · Foundation Stone Joined: 10 Feb 2007 Posts: 2006

Do you think her parents were right or wrong - Why?

From 'New Scientist'

FEW people in the past week can have missed the extraordinary story of a 9-year-old girl named Ashley. Ashley's brain will always function at the level of an infant and she is bedridden. To help them cope with Ashley, her parents chose to stunt her growth with hormones and to remove her uterus and developing breasts. Debate has raged over whether Ashley's parents have violated her rights and stripped her of her dignity simply for their own convenience (see "Operating in whose interest?").

There is no doubt that these interventions are extreme. Some have reacted with a feeling of revulsion. But as the debate unfolded it became clear that Ashley's best interests were uppermost in her parents' minds. Her quality of life is defined by her levels of comfort and interaction with others. Each intervention was chosen to increase one or both these factors.

Ashley's parents consulted several doctors and presented their case to an ethical panel of some 40 professionals. Doctors foresee potential benefits for Ashley and no serious long-term risks from the treatment: certainly none that would exceed the health risks she faces from being bedridden.

It is true that Ashley's parents made choices for her. But Ashley cannot make them herself, and will never be able to do so. She is profoundly disabled: unable to communicate or even to hold up her head. If there were a chance she would ever be able to choose to enter a relationship and bear children, the debate would be very different, but that is not how Ashley's life will be.

Some people have objected to Ashley's treatment on the grounds that it starts us down the slippery slope to a world where parents can make their own lives easier by imposing medical or surgical procedures on their children. This is precisely why society needs ethical panels or court-appointed advocates to ensure that children's interests remain top priority. By publishing Ashley's story, her doctors have provided a template for how such oversight can be carried out.

Still, there is a yawning gap in the decision-making process. We do not know if bedridden people with profound mental impairment who are short and light live happier lives than their taller, heavier peers. Only randomised controlled trials will answer that question. Surgeons in particular need to overcome their resistance to subjecting surgical procedures to such rigorous testing.

Until such trials take place, Ashley's treatment will stay an inconclusive experiment: whether it will make her life better than it would otherwise have been will remain a matter of opinion.

dingsy · Site Admin Joined: 11 Feb 2007 Posts: 2106 Location: Devon

From what I've read of this case, I do think that the parents have made the correct decision.Irregardless of the tenuous "rights" debate, the quality of life of the child should be the prime consideration.If she can remain physically the size of a child, then it will also contribute to her quality of life.To give you an example.

We have some very dear friends whose 34 year old son is completely physically handicapped, unable to do more than move his head. He is very tall, although very frail, and the sheer logistics of moving him/taking him out are becoming progressively more difficult.Size in no small way, can play a crucial part when caring for someone severely handicapped, and these problems get worse, as the parents get older. Am not suggesting that Ashley's treatment was a good move to make the parents lives easier by any manner , but the girl will enjoy more mobility and social interaction if she does remain in a childlike body, however unfair that may seem.

I would like to think that if I had ever been in a similair position, I would have the strength to make difficult decisions, even if they were not necessarily popular with the world at large. Sometimes being apparently cruel to be kind, is the kindest course to follow.

Sparkymarky · Posted: Sun May 13, 2007 12:33 pm Post subject:

i agree totally but it is a horrible horrible circumstance and a descision that i wish didn't have to be made....but i also agree that it is very important as well that all such descisions should be throughly looked at by ethics commmitee as it is a descision that can never be reversed

Hecateh · Foundation Stone Joined: 10 Feb 2007 Posts: 2006

I think they made the right decision as well.

These decisionsvshouldn't, I feel, be made just for the benefit of the parents but there is no doubt in my mind in a situation like this benefitting the child also bnefits the parents and vice versa. If the child stays a manageable size the parents will be able to physically care for her so much more easily and therefore may well keep her at home whereas, particualarly when they get older caring for a fully developed adult would may be become impossible and the girl would have to go into care. There can be little doubt, I feel, that she is more settle and therefore happier if she can maintain the life she has come to know how ever little of it she is able to express.

The idea that a judge on his own can make a 'better' decision than a panel of medical experts is to me ludicrous. This paragraph i find frightening

dingsy · Site Admin Joined: 11 Feb 2007 Posts: 2106 Location: Devon

Think another point which will benefit Ashley is the fact that she will presumably avoid all the hormonal changes of puberty? The thought of a little girl mentally trapped in an adult body is also horryfying-as adults we can and do rationalise the mood swings from which we suffer, but the thought of a child possibly having this additional distress is very upsetting. Impossible to explain to her why she would be suffering from mood changes, and bleeding every month? How distressing would that one point alone be for her?

I do think the parents have been courageous, and I hope that Ashley will have as satisying a life as her condition allows. Incidentally, our friends's son has the added agony of being mentally alert in a physically useless body, which is a fate too awful for most of us to contemplate. BUT-he has the most incredible sense of humour, has everyone in fits of laughter (when he can make himself understood, which tragically is not very often).His quality of life is as good as it can be under the circumstances, and he is a glowing testament to how much parents can achieve for their children when pushed to the limits(the "experts" didn't expect him to live beyond his teens)

Hecateh · Foundation Stone Joined: 10 Feb 2007 Posts: 2006

That's fantastic to hear Elaine. Tragedy as it is that anyone has to be born that way it really does give us hope for humanity when parents can be as straong and curageous as his (and Ashley's) are. I think Cerebral Palsy can be the most devastating condition (making assumptions but same applies if it is a different condition) where intelligence is often above average and thank god (or whoever) for the modern technology that enables us to know that these people are intelligent and for the ways in which technology enable communication.

Have you read 'Skallagrigg' (sp?) a fabulous and inspiring book by Willaiim Horwood I thinnk it is.

dingsy · Site Admin Joined: 11 Feb 2007 Posts: 2106 Location: Devon

Hec, what makes our friends' case even worse-is that their son was perfectly "normal" until he was nine. So he knows what it's like to run, jump, go to school, etc-all the things we take for granted. This made it an even crueler blow, both to the child, and the family, as it was not a condition that had been suffered from birth. An additional agony for them was wondering if this condition would appear at some stage in his siblings, or in future generations of the family,in children of the non-affected siblings.Technology has improved his quality of life enormously, but it has been the sheer single minded focus of his parents(particularly his Mum), that has achieved most for him.I feel immensely privileged to be their friends.

Will look out for the Horwood book-thanks.

angelfruit · Posted: Mon May 14, 2007 12:11 pm Post subject: