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Family wins 'right to life' case for severely disabled baby
BillieTheBot
Posts: 8,721 Bot
http://news.bbc.co.uk/1/hi/health/4808442.stm
It's a very tragic and difficult case, but IMVHO the wrong decision has been reached.
Quite how the judge believes the baby obtains enough pleasure from life to outweight his horrific situation simply from listening to words and feeling touch is beyond me to be honest.
It's a very tragic and difficult case, but IMVHO the wrong decision has been reached.
Quite how the judge believes the baby obtains enough pleasure from life to outweight his horrific situation simply from listening to words and feeling touch is beyond me to be honest.
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Although i do appreciate that it is a tough thing to decide on, and that there are valid reasonings on both sides.
So if you were this baby's parents, you'd rather have his life support machine turned off? Personally I would - it can't be nice for the baby's parents having to see their baby in this state and it wouldn't be easy to look after him...
when you first meet some of these kids and can be a bit disturbing.
one kid i met ...my first reaction was ...what is the point?
that kid is completely cabbaged but how wrong i was.
as you get to know the kid ...and understand often very limited communication skils that the kid has ...you then learn they don't like the music their parents listen to ...they like something completely different.
they don't like milk very much so please give me tea.
turn the telly off ...put some music on ...i'm hungry ...leave me alone ...that was realy funny ...often with kids who are thought to be in a vegative state.
the quality of life can be excellent but ...different from what we would accept ...because we have known differently.
but saying that ...perfectly able bodied people with everything going for them can suddenly ...be put through accident or disease ...in a very different world.
look at superman.
did he want to die? no.
but when older people develop the same kind of problem when their bodies deteriorate and just end up trapped inside their body - they're not allowed to die with dignity
how is it different?
Very true. Your experiences are based on how you perceive the world around you, so this child knows only what it has experienced so far. It doesn't 'know' about all these things it doesn't have.
I can't, mind summarising it?
From the Independent, Friday 17th March, Editorial&Opinion section
A paralysed infant has helped save the lives of some of our most vulnerable children By Dominc Lawson
As governments post and present have discovered to their fury, British judges are not impressed by the authority of the state, no matter how unpopular that may make them. Sometimes that refusal to be overawed can be magnificent: seldom more so than in the decision of Mr Justice Holman on Wednesday to refuse to grant and unnamed NHS trust his consent to the removal of a ventilator tube from the nostrils of "Child MB".
Child MB, a 19-month-old boy, suffers from the most acute formof Spinal Muscular Atrophy. This degenerative disease - which affects the body by leaves the brain completely undamaged - has now rendered him inert, and he cannot breathe withou the aid of a ventilator. His parents refused to give their consent to the trusts's wish to remove his breathing ait - which would cause his immediate death - and so the trust attempted to use the law to overrule the parents' wishes.
Its submissions to the court were impressive, in that not only were the 12 doctors involved in the case united, but also the two doctors who gave evidence on behalf of the parents told the judge that in their view it was time for Child MB to "be allowed to die". Even the guardian to the child appointed by hte court sided with the NHS Trust - and therefore the state. Yet Mr Justice James Holman listened politely and then told them that they were all wrong, and that the parents were right: Child MB's life was worth preserving.
As it happens, I know James Holman - his holiday cottage in the Scilly Isles is less than 100 yards from the one which we rent each August. James is one of those rare Englishmen who absolutly adores children. He is unstoppably affectionate not just to his own childre, bu to all those he meets. And unlike some adults, the children don't seem to mind the fact that his greetings boom so loudly that they can be heard on the next island. My point is that James Holman is the last man to be insensitive to any suffering experienced by Child MB.
As begits and obsessive sailor, James HOlman did something very practical at the outset of the hearing: he asked all those involved to write down on a piece of paper a list of the benefitsand disadvantages of the course of action they proposed.
In his judgement, Holman notes that "Even at the end of the hearing the list from the NHS Trust contains only one item [in favour of the child's continued existence]: 'Preservation of life.' It does not recognise any specific benefit that MB may be getting from his life although the disbenefits are listen in considerable specific detail."
I am not surprised that James Holman was puzzled by this. As he points out, after detailling the medical evidence: "MB is concious. He is awake during most of the day and sleeps at night. He continues to hear, see, feel and touch, to have an awaremness of his surroundings and of the people who are most close to him, his family, and to have the normal thought processes of a small child of his age... No court has before been asked to approve that, against the wishes of a child's parents, life support may be discontinues, leading the the inevitable death of a child with sensory awareness and assumed normal cognition, and no reliable evidence of brain damage."
As to the suffering of Child MB, the doctors told the court: "It is very difficult to assess how much distress he experiences. it is inveitable that some interventions, particularly blood sampling, endotracheal suctions and physiotherapy are uncomfortable to him. An asessment of his quality of life is very difficult."
In essence, therefore, the consultants are saying that they have no idea how much MB is suffering, or how happy or sad he is. Only the medical staff who have spend most time with MB, the junior nurses, made it clear that they were aginst the trust's court action. The mother, who has been with him in hosptal for at least eight hours a day throughout his entire life, told the court that not only does the corner of his mouth turn up when he sees his two brothers, but also when he watches barney the dinosaur on television.
She also told the court that he wiggles his toes when she tells him "to do a big one". James Holman saw a video of this, to verify that the mother was telling the truth, and comments: "The doctors who have seen the video say they have not witnessed any such movements, but they agree they are visible in the video and cannot explain them."
In conclusion, James holman told the court - and I can imagine the booming tones in which this was uttered - "I can not and will not make a declaration in the terms sought. I actually go further and consider that it is actively in MB's best interests to continues with ventilation and with the nursing and medical care that properly goes with it." Case dismissed.
In his column last week, Johann Hari argued that hte NHS Trust was right to seek sto disregard MB's parents' wishes, on the grounds that he is "in ceaseless agony" and that we should abandon "the sanctity of life rhetoric, a leftover from the rotting carcass of Judaeo-Christian philosophy... Of course it is much easier to accuse anybody who tries to craft the least cruel form of ethics of being a mini-Mengele".
Well, I shan't accuise Johann of being a mini-Mengele, although I do think he ought to read Michael Burleigh's Death and Deliverance. It is an account of the systematic murder of almost 200,000 mentally or physically handicapped people by doctors under the Nazi regime.
The Nazis produced films to persuade the german public of the virtues of the policy. The voice-over of one, accompanying footage of severely handicapped children, declares, in scandalised tones: "They have to vegetate in an existance which no longer has anything in common with the purpose of human life. They must, because a religion whcih is alienated from reality has give rise to medical ethics, still current today, which make it the task and duty of the doctors to preserve the life of every person under all circumstances."
Johann favours lethal injections for those he thinks should be let go, but hte Nazi film instead proposes the "human and painless" operation of a gas chamber: this was the trial run of the method later used to exterminate the Jews.
I wish Johann the best of luck as he tries to craft his very own form of ethics, but I'm grateful to James Holman for ensuring that English law remains, at least as regards to compulsory euthanasia, tied to Judaeo-Christian philosophy.
And as for Child MB: his short life is now anything but meaningless. With the aid of his morther's stubbornness and love he will go down in legal history as the person who, unwittingly, help to preserve the lives of the most vulnerable children of all.
I thank fiend for posting that up, it pretty much covers what I think.
If a person is alive with full cognitive action, it is not right to kill it unless it wants to be killed.
I agree, I think the right decision was made by the judge. It really does make you wonder about the decisions these medical staff are making on behalf of so many people. Should people listen to their doctors' advice? Of course they should, but this example shows how the doctors don't necessarily see everything in the picture in every case (IMO).
Incidentally I wonder if anyone has ever asked stephen hawking if he'd rather be left to die. I can't help but think that the only reason this child can't communicate, is because he's not yet 2 years old. A fantastic mind could be trapped in that body.
It is an act of killing.
But that is the same thing.
I quite agree.
But if the child is fully conscious, then the line has not been reached. Fiend mentions Stephen Hawking, but there have been other cases where doctors have decided that someone has passed the line, only for them to wake up again.
They were right to go to court, and the court has rightly told them to not kill this child.
Thankfully, cases such as this are uncommon and cases where there is disagreement even rarer.
"Quality of life" is entirely subjective and you can discuss a quality on both sides and make valid arguments either way.
Cost of a paediatric intensive care bed: £1702 (per day)
A child's life: Priceless?