Maimed for convenience?
That's a pretty horrid expression, but it's been used by some commentators to describe what's happened to "", the nine-year-old girl in Seattle with . She is permanently brain-damaged, cannot walk or talk, and has a "mental age" of three months; so doctors have used surgery and hormone therapies to prevent Ashley growing any bigger or taking on typical features of pubescence or adulthood. Her parents say it's the to care for her; and her doctors clearly agree.
The parents say keeping Ashley smaller enables them to provide her with the personal care she needs: if she grows bigger, it will become difficult for them to lift her and meet her needs. Dr Doug Diekema, a member of the ethics committee who approved the procedure, told the Today programme this morning that it may be appropriate that Ashley remains small since she will never grow to become an adult mentally; and she will always lack basic capacities for social interaction.
Is this an unethical use of medical technology or an example of good parenting under extremis?
Comments
It's bizarre to me. This could only happen in America.
This is a difficult one. Would the child be aware of any loss? Is she even self-aware? The procedures are terribly invasive but, I must admit, the proposed benefit to the child and her parents who have a duty of care for her seem to be real. I dislike the radical nature of the manipulation of another being's person but can see that it will allow the parents to care longer and better for her. As they get older and she bigger, it would more difficult and the child no doubt would end up in institutional care.
I wonder what Pete Singer would make of this?
No question: singer would support the parents.
Singer would not accept that this child is a person since she lacks rationality and full self awareness. He'd give the parents what they want.
How telling that when a morality invented by primitives is confronted by situations they couldn't possibly have anticipated, invented when the only explanation they had for anything and everything was that it was god's will, it is utterly confounded. You can see the beginnings of this in situations from their fears about embryonic stem cell research to allowing hopelessly ill people who are in unbearable agony the right to die when medical science has the power to keep them alive and prolong their suffering. And in cloning including the exact duplication of human beings. And in genetic engineering where life can be made to assume forms not the result of nature but instead that which is desired by its human engineers. How will this morality's proponents react when far more radical situations arise as they inevitably will? Where the distinctions between one species and another including man, between life and death, between man and machine are blurred beyond recogniton? How will they react when life is artifically synthesized in a testube and demonstrated to have plausibly come about naturally by comparable conditions on earth billions of years ago? How will they react when life is discovered to have come into existance independently beyond planet earth. What if it is intelligent life, what if it is more intelligent than we are, considerably more intelligent? That would not be a far fetched possibility considering how many people so frightened of death desparately cling to absurd notions they inherited from primitives who knew nothing at all.
The situation is somewhat similar ethically to the one discussed in 鈥淭he Poet, the Pope and the Breathing Tube鈥. There I argued that once a 鈥榥atural life鈥 had ended it was the patient鈥檚 decision when and how to end the mechanically supported 鈥榰nnatural鈥 part of that life.
In that blog I also wrote in part:
鈥淥ne needs to retain the freedom within one鈥檚 beliefs to control one鈥檚 own destiny in this matter. My personal view is that life has ended its 鈥榥atural鈥 term once permanent 鈥榣ife support鈥 is applied. It then becomes the patient鈥檚 responsibility, or their caregivers, to determine when and how the 'unnatural' term of one鈥檚 life is brought to its close.鈥
It seems that in the case of this young patient we are not dealing with a mechanical 鈥榣ife support鈥 situation. Ashley, I presume, is accepting nourishment normally etc as any other mentally retarded person is able to do. Therefore she is in the period of her 鈥榥atural鈥 life as are we.
In my opinion what the doctor鈥檚 have done here is not that much different from what happened under the Nazis. If a 鈥榥atural life鈥 was not convenient then a means was found to either 鈥榝ix鈥 it or 鈥榢ill鈥 it - not for the betterment of the patient but to ease the burden of those providing comfort.
This case is for me very troubling. A society with the resources of the U.S.A. can provide for the 鈥榣ifting鈥 of mentally retarded patients as they grow older and bigger and can provide both financial and nursing assistance for parents in extremis (if they choose to do so).
I do not judge the parents actions but I condemn the doctors and the government鈥檚 actions in this matter.
Michael
Michael #6
It's very easy for you to sit in your own comfortable chair and make judgements about what other people should have done. You'd better just hope you never have to confront a problem like it first hand. What if in the cost of providing the kind of care you say this child who will never had any meaningful life in any real sense ought to get, you had to sacrifice the money you would have otherwise used to send your other children to college? What happened to; let he who is without sin cast the first stone? I'm surprised this didn't remain a completely private affair between these people and their doctors. Usually in similar cases it does. Either these people made a very foolish mistake publicizing it or the media picked it up like the vultures they are and decided to make a circus of it on a slow news day.
Mark wrote:
"What if in the cost of providing the kind of care you say this child who will never had any meaningful life in any real sense ought to get, you had to sacrifice the money you would have otherwise used to send your other children to college?"
Mark: This is not an 'either/or' situation it is a 'both/and'
/blogs/ni/2007/01/what_i_believe_by_michael_n_hu.html
Michael
Michael, I'm sorry but that is not the economic reality in the US today. The family would not be reimbursed for the kinds of costs you would have them incur. I know first hand, I'm taking care of a 97 year old aunt right now who lives with me and the cost of people coming to my house to render non medical help with her is coming out of my pocket. This despite Medicare and a secondary insurer. For me it is no mere abstraction.