Jane Nicklinson says that if the law allowed it she would be prepared to help her husband end his life
By Stephen Sackur
Presenter, BBC HARDtalk
Tony Nicklinson isn't terminally ill, he is in terminal despair. Since he suffered a massive stroke six years ago he has been paralysed.
The only movement he can control is in his eyes and his blinking. His unimpaired brain - his conscious self - is locked inside a body beyond his command.
Tony wants from life one thing above all else - the right to die. To be more precise he is fighting for the right to be lawfully killed.
I went to see Tony and his wife Jane in their immaculately maintained home in rural Wiltshire. It was one of the most memorable, thought-provoking and difficult interviews I have ever recorded.
Tony suffered a stroke in 2005 whilst on a business trip to Athens
Tony cannot speak. He "talks" to Jane by way of a letter board which she holds in front of his face. He uses eye movement and blinks to select letters which she spells out into words.
Using this laborious method Tony welcomed me and the HARDtalk film crew into his house.
"If I had known you were bringing this much gear I would have bought a bigger house," he joked as we carried in the TV equipment.
We laughed. Tony smiled, then moaned. Saliva dribbled down his chin. Jane wiped it away with a towel.
The Nicklinsons want the world to see what has happened to Tony. They want every one of us to know what it means to be "locked-in".
And they want to provoke a debate based on a simple question - just as an able-bodied person can choose to take their own life doesn't a paralysed person of sound mind have a right to die?
Interviewing Tony by way of Jane's letter board was a practical impossibility. Too slow, too stressful for them both.
But Tony has a computer which he can control with movements of his eye. He was able to respond to my questions with words which were electronically voiced.
The time will come when he's had enough and yes, if that is what he wants, then fine
I asked him why he was so determined to win the right to be killed. The metallic, inflection-less response from the machine exacerbated Tony's obvious despair.
''I can only see the future being worse. It is soul destroying - being fed like a baby, I can do nothing for myself. I have nothing but this for the rest of my life - is it any wonder I'm not exactly enthusiastic about living?
"If I had the comfort of knowing suicide was an option when life got too much, I might not want to die, who knows? But not having a Plan B causes anguish the pro-life campaigners could not possibly understand."
Tony's ambition goes far beyond modification of the laws on "assisted suicide", he wants another human being to have the right to give him a lethal injection.
He is ready to go through the courts on a mission to redefine murder to take account of mercy.
The Nicklinsons already have lawyers working on their case and they have detailed proposals - a lawful killing would be based on informed consent subject to judicial review, there would be rigorous background checks and a lengthy "cooling off" period.
This form of euthanasia would be possible, they say, in only the most special of circumstances.
Jane Nicklinson has had to live with her husband's paralysis and his despair for six years. She's a former nurse and she handles the role of full-time carer with immense patience and stoicism.
Inside the Nicklinson home the bonds of care and love built up over 25 years of marriage remain unbroken. But they're not enough. Not enough to overcome the sense of despair.
Condition in which patient is mute and totally paralysed, except for eye movements, but remains conscious
Usually results from massive haemorrhage or other damage, affecting upper part of brain stem, which destroys almost all motor function, but leaves the higher mental functions intact
I asked Jane a series of deeply personal and difficult questions. Not about Tony and his needs, but about her. She answered them all unflinchingly - but with anguish in her voice and her eyes. And all the while her husband was next to her, listening.
"I don't want him to die but I see what he's like and what his life is so maybe yes, OK, I do want him to die. Not at the moment but the time will come when he's had enough and yes, if that is what he wants, then fine."
I asked her that if the law allowed it would she be prepared to be the one to end his life?
"Yes, I think I would be prepared, but Tony wouldn't want me to. He'd like me to give him a sedative and someone else do the lethal injection."
The Nicklinsons are engaged in a battle they are unlikely to win. Ranged against them are the combined forces of the legal, medical and religious establishments.
For the moment Tony has only two possible options if he wants to exercise his choice to die - he can starve himself to death, or make an expensive journey to Switzerland, where the Dignitas clinic could probably engineer an "assisted suicide".
But neither appeals to Tony. He wants to die with dignity, at home and he won't give up.
"All the letter writing and the campaigning you quite enjoy it, don't you?" Jane asked Tony before I left them.
His head was slumped at an awkward angle in his chair, but in his eyes there was a smile. There was life.
Watch the full interview on BBC World News on Thursday 1 September 2011 at 0330, 0830, 1530 and 2030 GMT and on the BBC News Channel at 0430 BST.
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