An intollerable life? 55 replies

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IR15H

An end has a start.

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7th September 2005

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#1 12 years ago
http://news.bbc.co.uk/1/hi/health/4770154.stm A baby at the centre of a landmark case over whether life support can be withdrawn has an "intolerable life", the High Court has heard. Baby MB, who cannot be named, has spinal muscular atrophy - a genetic condition which leads to almost total paralysis - and cannot breathe unaided. Doctors treating the 17-month-old say it is in his best interests to withdraw ventilation and to let him die. But his family says he has a reasonable quality of life and should stay alive. They feel he can recognise and respond to them, and that he gains enjoyment from spending time with his family. An injunction reporting any details of the case has been lifted after an application by the BBC, but none of the parties involved can be identified. A medic known only as Dr S told the court one had to consider the baby's inability to express his wishes, move or show if he is in any pain or distress. When questioned by Caroline Harry Thomas, counsel for the Children and Family Court Advisory Support Service, representing the child's interests, he said: "I think the cumulative effect of all this is that he has an intolerable life." The doctor said the child would have to live through a period in which he was unable to open his eyes, if the current treatment regime continued. He would need them opened manually to be able to see, he added. Baby MB has also been wearing splints on his hands and feet intermittently, which caused discomfort, and a risk of limb fractures would develop in relation to normal handling. 'Difficult position' Charles Foster, counsel for the family, asked Dr S whether he thought the hospital's application to remove ventilation was premature. Dr S said he disagreed, replying: "I would actually say that it could be seen as an application that is later than it should have been." The child's neurologist, also known only as Dr S, was asked by the judge whether he would regard it as acceptable medically and ethically to continue ventilation but not to resuscitate should the child go into collapse. He said continuing the specific treatment would not be in the child's best interests. "If you ask me personally whether I could continue it, I would say I would find it difficult, because I have been feeling that what I have been doing as a doctor has been wrong for many months, which is a very difficult position for me to be in. 'Difficult dilemma' "That is not just my opinion, but the opinion of many medical professionals who are directly involved in his care," he added. He also said he would find it very difficult to attempt resuscitation if he was asked to on the child but that it was "a very difficult dilemma". Dr S also claimed baby MB did not have the cognitive features normally seen in children with this type of spinal muscular atrophy. He said in his view, MB's cognitive function "does not appear normal", but it was impossible to assess because of the baby's inability to respond. Last week, Mr Justice Holman who is hearing the case, said it could be a landmark one as it was the first time a court had been asked to make a life or death ruling on a child who has near or full cognitive function. His incurable condition, which affects one in 6,400 newborns, is set to lead to almost full paralysis. It is a recessive genetic condition passed to a baby when both its parents carry a certain gene.

An interesting case. Who are in a better position to judge on the life of the baby? Doctors who are doing what they think is best, yet it's not their baby or parents who aren't medically knowledgable, but it's their baby. Are the doctors acting coldly or the parents selfishly (wanting a baby, to bring themselves joy)? If the parents had agreed with the doctors I'm asumming that the baby's life would have just been ended, I have to admit that I didn't know that it could get as far as 17 months down the line. I know if it were me I'd rather be allowed to die, but, it's not me. If the baby can't express it's wishes and experts think it's life would be intollerable is it a mercy killing or still murder?




DnC

GF's Cognitive Psychologist

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14th April 2004

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#2 12 years ago

A dog can't express it's wishes to be alive or dead but the vets put them down anyway. I think the doctors know best in this case. As sad as it is.




Dot Com

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#3 12 years ago

The kid's an empty shell for christs sakes. Pull the plug.




AzH

I'm too cool to Post

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17th September 2003

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#4 12 years ago

Let the parents decide if they want to keep the poor little tyke, but to hell with them if they think the NHS and Social Services should foot the bill for it's care. If they want to keep it they should pay for everything the child needs.

If I was in the position of the child I would want to die.




deathwarder

Part of the EPA's swat team

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2nd January 2006

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#5 12 years ago

same here




-Ghost-

Phantom of the Forums

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20th August 2003

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#6 12 years ago

AzHLet the parents decide if they want to keep the poor little tyke, but to hell with them if they think the NHS and Social Services should foot the bill for it's care. If they want to keep it they should pay for everything the child needs.

If I was in the position of the child I would want to die.

Yeah, I don't think I'd want to live like that, either. I agree about the support, if the parents want to go through with it anyway, they should have to pay the health care themselves, since they chose for it to happen in the first place.




deathwarder

Part of the EPA's swat team

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2nd January 2006

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#7 12 years ago

yeah, there should be conditions, and the parents should not be able to get financial help for this if they have been adviced otherwise




Pethegreat VIP Member

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19th April 2004

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#8 12 years ago

This reminds of me of that Cindy Sheehann. No one, doctors or parents can tell wether the kids life is intolerable since he has not expressed anything. If the kid can get to the point where he can express his felling then let him decide not anyone else. He is not brain dead, just paralized.

If i were the kid I would want to live. You got 1 life. I want to make the most of it wether its crappy or not. There is also hope with technology that he could be able to move again. Any chance of getting out of that makes it worth putting up with some serious crap IMHO.




Hypnotoad13

GF is my bext friend *hugs GF*

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6th January 2006

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#9 12 years ago

those people are horrible parents! pull the plug keeping that kid on life support like that could be considered a form of torture




Locomotor

in spite of erosion

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13th May 2004

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#10 12 years ago

Sounds like a tough decision. (Obviously) I'd let the kid live. Like Pethegreat said, you don't know what the kid is feeling. Nobody does. While the doctors might have a good idea of the child's future, it's not their position to devalue the life of another because of these reasons.