Thursday, 23 August 2012

I am the Captain of my Soul – Unless I Can't Move...

On the 16th August, Tony Nicklinson lost his “right to die” case at the High Court. Yesterday, he died of pneumonia – exacerbated by his refusal to eat in the days since his defeat. 

Since his stroke 7 years ago, Mr Nicklinson had suffered from “locked in syndrome” – being fully alert and conscious on the inside, but unable to move beyond some facial expressions, the most heartbreaking being his face when he learned that he would not be allowed to die. The judges on his case decided that "voluntary euthanasia is murder, however understandable the motives may be". Because of his inability to move independently, he would have had to enlist help from a family member in order to end his life.

Euthanasia is one of those subjects I’ve always been fairly neutral about – nobody wants to think of people suffering, but equally, when is it ok to turn off the life support? Even people who appear to be braindead have occasionally snapped out of their comas, none the worse for it. And how can you trust that the person making the decision really has the patient’s best interests at heart? People can be very odd when wills are in the equation.... 

However, it still makes sense to judge cases on an individual basis. Would the judges have changed their mind about Tony Nicklinson’s fate if they had experienced just one day in his body, communicating through blinks and having to give up every shred of dignity? Mr Nicklinson pointed out; "Judges, like politicians, are happiest when they can avoid confronting the real issues and this judgement is no exception to the rule.” He admitted that his biggest regret was summoning help at the hotel when he collapsed; “If I knew then what I know now, I would have let nature take its course.” 

Jean-Dominique Bauby was the editor of French ELLE when he suffered a stroke and became a victim of locked-in syndrome. He painstakingly spelled out every letter of every word of a short book about the experience, The Diving Bell and the Butterfly, before he died (also from pneumonia). He describes correspondence from his friends; “Other letters simply relate the small events that punctuate the passage of time: roses picked at dusk, the laziness of a rainy Sunday, a child crying himself to sleep. Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest.” One could argue that as long as you’re alive, it is still possible to find some value in every moment. 

But how long can someone go on living in purgatory? Mr Nicklinson’s response to his high court defeat was: “I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.” His daughter Lauren told the press “He would rather have three months of the physical and mental anguish of starving himself than 30 years living locked-in.” It’s an understandable stance; not only would 30 years of living mean more years of ‘dull, miserable, demeaning, undignified and intolerable’ life for you, but also for the family who would have to sacrifice their own lives to take care of you, adding guilt to the list of daily pains. 

So what was the court’s problem with Mr Nicklinson’s “right to die”? As he was extremely keen to end his life, it seems irrelevant that the actual drugs would need to be placed in his mouth by someone else. So it appears that the actual debate isn’t about whether it’s ok to “help” someone die – it’s a debate about the moral rights and wrongs of suicide. The judges decided that Tony Nicklinson had to stick it out rather than end his suffering. 

But like it or not, every human being has the right to kill themselves, if they so choose. If someone is physically incapable of doing so, why is it suddenly someone else’s choice to make?

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