Family Experiences of Vegetative and Minimally Conscious States

What is locked in syndrome?

Patients who are ‘locked in’ are conscious but paralysed following brain damage – for example after a stroke. They can usually communicate by using movements of the eyes or eyelids. The experience of locked-in syndrome has been described by a journalist Jean-Dominique Bauby in his book, ‘The Diving Bell and the Butterfly’, which was also made into a film. Another well-known individual with locked-in syndrome was Tony Nicklinson who brought a very important High Court case to allow a doctor to end his life without facing a charge of murder. He subsequently refused food and died of pneumonia six days later.

The key difference between locked-in syndrome and the vegetative or minimally conscious state is that someone with locked-in syndrome is mentally intact, as Derick Wade explains.

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The locked-in syndrome, which people worry about quite frequently, is very, very different. And once you’ve seen somebody in the locked-in syndrome you realize that actually the two will never be confused. Because the person is clearly responding all the time, very quickly, to what you do. They can virtually always have eye movements which they can control well. So if you say, “look right” they will immediately look right. Not after a delay, but immediately. If you say “blink your eyes” they will blink their eyes immediately. If you say “blink twice”, they will blink twice. Immediately. Also – and it’s rather less easy to explain but, they look as if they’re aware. Sometimes they will have minor facial movements and then you can see the beginnings of a smile, for example, if there’s a joke. As time goes on people who are locked in often have other movements which make it obvious. But if it is just the eyes that move the responses are really really quick. And you could even set up, you know, a mathematical puzzle and ask the person to give you the answer to a question by the number of blinks that they do and they will do it. So it’s a very different situation. They are completely aware. They can control their eyes –they can’t move much else – but you can see that they’re aware.

Last reviewed December 2017.