I was asked by Channel 4 to make a Dispatches with indie CTVC following 58 year-old Tony Nicklinson and his family in the run up to one of the most important weeks of their lives. On Tuesday 19 June, three High Court judges will decide whether Tony - a married man with two grown up daughters should be legally helped to die.
On my first train journey to visit the Nicklinsons in Melksham, Wiltshire I reflected on what I knew so far. Tony used to be a rugby player, and the life and soul of a party until he suffered a massive stroke seven years ago. Since then he's neither spoken nor moved. He is paralysed below the neck and barely able to control his head movements. His only form of communication has been through the movement of his eyes. But his mind functions just as it did before.
I'd heard about this rare condition - known as 'locked-in syndrome' - which had left him a prisoner in his own body. I knew there was little chance of his condition improving and that he would deteriorate with age.
It occurred to me he could live another 30 years in this condition like this unable to to commit suicide on his own. His emails to me explained that if the court refused to give him a pain-free death, his only way out was to refuse food and drink, which would result in a very slow and painful death by starvation. He didn't want his family to witness this.
I knew that Tony's was the first right-to-die hearing of its kind. Whereas previous cases have clarified the law on the assisted suicide, Tony's case goes further - it represents a fundamental challenge to the law on murder. "The court", says Mr Justice Charles, who allowed Tony's case to proceed, "is being invited to cross the Rubicon."
I was nervous as I knocked on Tony's door, it's not every day that you get to meet someone who so publicly wishes to die. I was also apprehensive about how to communicate with Tony. Not to mention the challenge of making engaging television about one man in one room that couldn't speak.
I was told that Tony would communicate with me through his wife Jane using a Perspex board with letters, but this arrangement felt detached - it was like having an interpreter. I felt that I wasn't getting to know Tony and this highlighted his disabilities rather than reveal the sharp, witty individual that I had understood him to be through his emails. I decided I wanted to talk to him directly.
I would look directly at him and ask him a question; Tony could respond through his computer. Tony has a specially adapted computer that tracks his eye movements using infra-red cameras. He selects letters and words and blinks to make sentences. Then he presses the "Speak" button on the computer and the sentence is read out by a automated voice. This is the nearest he gets to having a conversation.
Interviewing Tony was one of the most intense interviews I've ever done. He was frequently emotional and cried often. The temptation at times was to stop filming but I didn't want to undermine him.
He would sometimes get so upset that the tears in his eyes would obscure the computer being able to read his eye movements, but instead of stopping he would call Jane, get her wipe to them and say through the computer "next question please".
The walls of the Nicklinsons' home are covered with photos of Tony with his old rugby team. I was shown family albums filled with pictures of a 6'4" Tony, with a broad smile, one arm draped around his wife, the other clutching a beer. Home videos showed Tony skydiving or cracking jokes with groups of friends. Lauren and Beth, Tony's two daughters, both in their early 20s, say it is impossible to recognise the lively, boisterous man they knew as their dad.
In order to understand why Tony wanted to die, I needed to get behind the statement with which he won the right to his High Court hearing: "my life is dull, miserable, demeaning, undignified, and intolerable". What did that mean in a practical everyday sense? Despite Tony's heart breaking condition, he was surrounded by a loving supportive family. Did that not give him pause for thought? Even though his wife and daughters had "lost" the husband and father he had once been. Both girls say they support their father's fight to die. Did they really?
Tony is not content to leave the legal arguments to his lawyers. He has a sharp mind, and has spent hours mastering the legal nuances of his case and is determined to thoroughly contest his opponents' opinions. In the weeks running up to his hearing, Tony invited some of those opponents to visit him at his home in Melksham to debate the issue face-to-face. I filmed as Tony sparred with Lord Falconer, previously one of the country's most powerful barristers and the Chairman of the Commission on Assisted Dying, who believes that Tony's attempts to change the murder law go too far. And I filmed a heated exchange between Tony and disabled rights activist Kevin Fitzpatrick, who believes that any change in the law will remove crucial protection from other disabled people.
I also flew to Greece to meet someone with a unique perspective on Tony's case. Dr Stelios Doris was the neurologist who treated Tony in the weeks after his initial stroke. He says that it was the first time he'd ever seen a case of 'locked-in-syndrome'. He has never forgotten Tony and is sometimes still troubled by the case.
"He's paying for our mistakes in a way. We have not done medical mistakes but it's a mistake that he survived. Death is more normal than to stay alive in this condition." Dr Doris is right: with the major leaps that have been made in medical science in the last few decades, we are now able to keep people alive who, as the doctor admits, would never normally survive. These advances mean there will be more and more people like Tony, and therefore more cases that pose major challenges to our ethics, law and, most fundamentally, to our notion of what a human life is worth and who determines that worth. As Dr Doris puts it: "when I was informed that he was still alive I was surprised and sad also. I wouldn't like for even for my worst enemy to stay alive in this condition for so many years."
Filming with the Nicklinsons has certainly challenged my views on physician-assisted suicide. I agree with Lord Falconer that Tony puts his case more effectively than anybody else does. Whatever your views on where the line should be drawn on this issue, when confronted with someone like Tony, its very hard to deliver a clear judgement.
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