The real tragedy of locked-in syndrome

Tony Nicklinson is 56 years old. He is married to Jane with whom he has two daughters: Beth and Lauren. He used to work as an engineering executive, a job that took him across the world, and before that he was a rugby player. Now he wants to die, after a severe stroke, while away on a business trip to Athens, left him paralysed, unable to move any part of his body except his head and eyes. He cannot walk. He cannot talk. He cannot feed or bathe himself. Mr Nicklinson is, to use the clinical term for his condition, locked-in. He is highly unlikely to ever recover.

Yet he cannot end his life by his own hand. So, unless he refuses food and water, dying of starvation and de-hydration, someone else must do it for him. His wife has agreed to do just that following what must have been the most agonising decision a loving spouse can possibly face. However, say her lawyers, if she does there is a real chance she will be tried for murder. After all, she is not being asked to assist a suicide. She is being asked to commit a mercy killing.

The debate that is set to follow is a predictable one of an individual’s right to die versus the collective’s right to be protected from a callous abuse of a law that may lead to their lives being ended against their will. Ultimately, this is a moral, not a legal question. It is a matter of conscience, not of right and wrong, and as such can only ever be resolved by an act of Parliament. Even then, the debate will continue for as long as two or more people hold different opinions on the issue. I know which side I stand on, but I will not seek to impose my views on you because that would obscure the wider point of this article.

There is no way anyone can possibly understand what it is like to live with locked-in syndrome without going through it themselves. In Tony Nicklinson’s own words – he communicates with the use of a perspex board and letters, looking, blinking and nodding to spell out words:

“I am fed up with my life and don’t want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life? No, I am not. If I had my time again, and knew then what I know now, I would not have called the ambulance but let nature take its course.”

However, there are some who might say that Mr Nicklinson is one of the luckier survivors of locked-in syndrome. Luckier because at least his condition was correctly diagnosed. As it turns out, an alarming number of people who live with the same condition, but are unable to even communicate their level awareness due to the severity of their disability, are routinely misdiagnosed as being in a vegetative state (awake but not aware). Two fates await such people: being cast off into a nursing home to a life of solitude and neglect; or having their feeding tubes removed at the behest of doctors and relatives, deaf to their silent pleas for life.

It is not known how many people in the UK live with locked-in syndrome: no one has ever bothered to count them. However, a study by a team of specialists in the field, published in the British Medical Journal, showed that 43% of patients brought before them over a three year period had been misdiagnosed as being in a vegetative state. While their levels of awareness varied, some were most certainly locked in, including one man who spent eight years in a nursing home before somebody finally realised his mind was still active. Eventually, he was sent to a rehabilitation centre where he could receive the specialist care he required and even learnt how to communicate with the outside world again. His first three words in eight years, “I love you”, were directed towards his wife who never gave up on him.

Some might say this makes no difference. They may ask: who could possibly want to live like this? Surely those who have been misdiagnosed and given the quick and painless end that Mr Nicklinson now seeks are the lucky ones? Yet surely that is their decision to make and no one else’s. If you’re looking for hard evidence though, you need look no further than across the Channel to France, the only country in the world that affords its approximately 500 locked-in citizens the dignity of being counted. A survey of 78 of them by the Association du Locked-in Syndrome (ALIS) reported that 71% had never thought of suicide, while only 8% demanded it. Another survey found that when asked how they rated their quality of life and specifically their own personal happiness on a scale of -5 to +5, most answered between +3 and +4.

Needless to say, none of this will make any one of those 8% of people seeking to die now feel any better and I don’t expect it to. Nevertheless, although we can never be sure whether any one of the countless people who have had their feeding tubes removed and their lives ended, was actually locked-in, like Tony Nicklinson, but simply unable to communicate, what data is available tells us that the chances they were misdiagnosed and as such just as conscious of what was happening to them as you or me, but denied their right to choose and subsequently their right to life, were literally almost 50/50. Perhaps we should set about addressing this criminal injustice before we debate whether mercy killing amounts to one too.