December 7, 2022

Should people with locked-in syndrome be euthanased?

There can be no more difficult case for dispassionate discussion than the fate of Tony Nicklinson, the totally paralysed British man who wants to end his life. This week the UK High Court denied his request for euthanasia. He is completely dependent and describes his life in the bleakest words imaginable: “dull, miserable, demeaning, undignified and intolerable. …it is misery created by the accumulation of lots of things which are minor in themselves but, taken together, ruin what’s left of my life.”

Each of the three justices took pains to express their sympathy for his plight (and the similar case of a man named Martin) as they reluctantly agreed that that they had to affirm the existing law on murder. Hard cases make bad law.

But is death really the only solution to the dependence and limited possibilities of Mr Nicklinson’s existence? Perhaps it takes an extraordinary person, but it is possible to feel a lust for life even with locked-in syndrome. (Here are some links to articles about locked-in syndrome in BioEdge.)

A couple of years ago, a French woman with locked-in syndrome, Maryannick Pavageau, was awarded the Légion d’honneur precisely for leading the charge against euthanasia:

“In response to our deep discouragement – and who is free from that? – we are only offered this final right, hypocritically baptised as a sign of love. A recent study on the quality of life of locked-in syndrome patients found, to the astonishment of the medical profession, that when asked ‘if you had a heart attack, would you want to be resuscitated?’, the great majority of us answered: Yes.”

And last year, the largest-ever survey of chronic LIS patients found that only 28% were unhappy. Very few of them were interested in euthanasia – only 7% — or had suicidal thoughts. Mme Pavageau, who is clearly an extraordinary woman, flatly denied that her life was miserable:

“All life is worth living. It can be beautiful, regardless of the state we are in. And change is always possible. That is the message of hope that I wish to convey. I am firmly against euthanasia because it is not physical suffering that guides the desire to die but a moment of discouragement, feeling like a burden… All those who ask to die are mostly looking for love.”

Perhaps the money used to  promote Mr Nicklinson’s case and to pay for his legal fees should have been spent on cheering him up and getting him some fresh air. It is possible. As a New Zealand rugby player with locked-in syndrome wrote in the BMJ a few years ago: “It is definitely a crazy, mixed-up world. I’m just glad to still be alive — most of the time anyway. I accepted the fact that the accident happened, long ago. Shit definitely happens; I just have to make the most of each day in my journey towards recovery.”

Michael Cook
How would you feel if you had locked-in syndrome?
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