Locked-in syndrome is a cruel condition by which a person is able to think clearly, but as a result of paralysis is unable to move or interact normally with the world. Usually the result of a stroke or other brain trauma, the syndrome was first brought to wide public attention through the film The Diving Bell and the Butterfly (2007), which told the story of the French journalist Jean-Dominique Bauby.
For Tony Nicklinson, the catastrophic stroke that locked him in came in June 2005, during a business trip to Athens. He was paralysed from below the neck and rendered unable to speak or move anything except his head and eyes. Released from hospital after two and a half years, Nicklinson was confined to a wheelchair and was unable to continue his daily life without constant attention from family, friends and carers.
His communication with the outside world was through a sophisticated computer system, able to detect eye blinks and head movements and turn them into writing and speech. Describing his condition in a BBC programme in February 2011, via the computer, he said, "There are a thousand reasons why having locked-in syndrome is frustrating. Just imagine, if you can, your worst nightmare – then make it worse and you're nowhere near it." Having decided that he wished to take his own life, but needing assistance to do so, Nicklinson sought ways in which this could be done legally.
For able-bodied people who are terminally ill and wish to end their own lives, there are a number of options available. Nicklinson could have travelled to an assisted-dying clinic in Switzerland, for example. But even then, the clinic would have been unable to carry out euthanasia, as he himself would have had to perform the final action to end his life. Faced with this impossible situation, Nicklinson began a legal campaign to allow a doctor or family member to lawfully end his life for him.
Nicklinson was granted permission for a judicial review of his case in March this year. At the hearing in June, Nicklinson – together with a man in a similar situation, known only as Martin – applied for the right to be allowed assistance to help them to die. In a statement to the court at the time he said, "I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers. You try defecating to order whilst suspended in a sling over a commode and see how you get on. I am fed up with my life and don't want to spend the next 20 years or so like this." He continued, "I have locked-in syndrome and I can expect no cure or improvement... Indeed, I can expect to dribble my way into old age."
On 16 August 2012 three High Court judges, Lord Justice Toulson, Mr Justice Royce and Mrs Justice Macur issued their ruling on the case. They found in their judgment that Martin's and Nicklinson's cases were "deeply moving" and spoke of the "terrible predicament" of both men.
Their report observed that it was, in theory, "technologically possible" for Nicklinson to take his own life, describing a system by which he could have administered drugs by giving a command via the computer he used for communication. Despite their sympathy with his situation and their discussion of the options available, the judges' findings contradicted Nicklinson's wishes.
The judges concluded that only Parliament has the power to change the law relating to murder, which would allow someone to assist another person to die. In their words, "To do as Tony wants, the courts would be making a major change in the law... These are not things which the court should do. It is not for the court to decide whether the law about assisted dying should be changed and, if so, what safeguards should be put in place."
Nicklinson's response to the ruling was, "It's not the result I was hoping for, but it isn't entirely unexpected." Clearly frustrated and upset, he continued, "Judges, like politicians, are happiest when they can avoid confronting the real issues and this judgment is not an exception to the rule... unfortunately for me, it means yet another period of physical discomfort, misery and mental anguish while we find out who controls my life, me or the state."
Nicklinson's wife, Jane, by his side, commented: "All the points that we put forward have just really been ignored, it seems. You can see from Tony's reaction he's absolutely heartbroken. We always knew it was a big ask, but we always hoped that the judges would see sense, but clearly they haven't."
Tony Nicklinson was born in Goudhurst, Kent, in 1954 and educated at the nearby Cranbrook School. He was a civil engineer by profession and had been an active member of Cranbrook Rugby Club.
His solicitor, Saimo Chahal, said in tribute, "I would like to say what an extraordinary man Tony was. He was gutsy, determined and a fighter to the end. It has been an absolute privilege for me and his barrister, Paul Bowen, to have been his legal team. I only wish the outcome of the case could have been different during Tony's lifetime. I know that the right-to-die with dignity issues that Tony championed will not be forgotten due to the light that Tony shone on them..."
Nicklinson had refused food over the past week and died of pneumonia. His last words, dictated to his family and relayed to the world at his request via Twitter, were "Goodbye world the time has come, I had some fun."
Tony Nicklinson, civil engineer and right-to-die campaigner: born Goudhurst, Kent 4 February 1954; married 1986 Jane (two daughters); died Melksham, Wiltshire 22 August 2012.