Locked-in man Tony Nicklinson 'condemned to suffer'

Tony Nicklinson with his wife, Jane (PA)

Locked-in syndrome sufferer Tony Nicklinson's existence of "pure torture" could continue for another 20 years or more if he does not win the right to end his life when he chooses, the High Court heard today.

Paul Bowen QC, for 58-year-old Mr Nicklinson, from Melksham, Wiltshire, told three judges hearing his landmark "right-to-die" case: "Tony has now had almost seven years to contemplate his situation.

"With the continuing benefits of 21st century health and social care his life expectancy can be expected to be normal - another 20 years or more. He does not wish to live that life."

Mr Nicklinson, who suffered a catastrophic stroke in 2005 while on a business trip to Athens, sums up his existence as "dull, miserable, demeaning, undignified and intolerable".

A "very active and outgoing" man before the stroke, which left him paralysed below the neck and unable to speak, he now communicates by blinking or with limited head movement.

Mr Nicklinson, who wants a doctor to be able lawfully to end his life without fear of prosecution, describes how he has no "privacy or dignity left", and says that what he objects to is having his right to choose taken away from him.

Mr Bowen told Lord Justice Toulson, Mr Justice Royce and Mrs Justice Macur that he was being condemned to live in a state of suffering and indignity by the current law of assisted suicide and euthanasia.

The law was "anomalous and discriminatory" and had not stopped the "widespread practice of euthanasia, but has forced it underground".

But he told the judges that Mr Nicklinson was not seeking to persuade the court to "introduce an all-encompassing new regime legalising euthanasia and assisted suicide".

Mr Bowen added: "While he would welcome such a change, he accepts that such a regime can only be introduced by Parliament.

"However, there is no sign of Parliament introducing such a regime any time soon that would afford the claimant the opportunity of an assisted death with dignity."

Mr Nicklinson maintained that in the absence of statutory regulation he was entitled to "remedy" from the court.

Although he could not attend the London courtroom, he was determined to get his case across to the judges.

An email he sent to his solicitor, asking if it was possible for the lawyer to "tell/remind the judges a few things", was read out by Mr Bowen.

In the email he states: "I have wanted my life to end since 2007, so it is not a passing whim."

Mr Nicklinson also pointed out: "Legal arguments are fine but they should not forget that a life is affected by the decision they come to; a decision going against me condemns me to a 'life' of increasing misery."

The hearing was attended by his wife Jane, 56, and the couple's daughters Lauren, 24, and Beth, 23, who all support his decision.

Mr Bowen said Lauren described her father as being "forced to live an existence trapped in a broken body, following someone else's rules, rules that he cannot abide by. He is living a life he does not wish to live. This is pure torture for him".

The QC said that worse than the physical discomfort of his situation was the mental pain it caused.

His world "is the bed he lies in each night and the armchair beside it, with occasional trips to the commode to which he is moved by way of an electric hoist over his bed".

He "does not want to die immediately". Practical considerations included the fact that he has yet to finish his memoirs.

In a court document Mr Nicklinson says: "I can't tell you how significant it would be in my life, or how much peace of mind I would have, just knowing that I can determine my own life instead of the state telling me what to do - staying alive regardless of my wishes or how much suffering I have to tolerate until I die of natural causes."

He is seeking two declarations from the court.

One is that in the circumstances of his case - and where an order has been sought from the court in advance - "the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die".

The other is that the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .

Mr Bowen said Mr Nicklinson's proposal of a prior sanction by a court "would provide the strongest possible safeguard against abuse".

He said: "It would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people's attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a 'burden'."

Opposing the action, David Perry QC, for the Ministry of Justice, said Mr Nicklinson's "tragic and very distressing circumstances evoke the deepest sympathy".

But he added: "Notwithstanding the distressing facts of his situation, the defendant submits that the claim for declarations is untenable. The law is well established."

Mr Perry said there was "no defence of necessity to a charge of murder or assisted suicide if a doctor were to terminate, or assist in the termination of, the claimant's life".

He further argued that "the state of the criminal law in this respect does not infringe the right to respect for private life under Article 8 of the Convention".

Counsel told the judges: "By this claim, the claimant is expressly seeking to bring about a change in the law which Parliament has refused to change."

It would be "wrong as a matter of constitutional principle for the courts to seize the initiative from Parliament in this difficult and sensitive area".

"In summary, the defendant submits that any change in the law of the type proposed by the claimant falls squarely within the constitutional domain of Parliament."

During a four-day hearing the judges will also hear argument in a judicial review claim by another locked-in syndrome victim who needs assistance to end his life.

Part of the case brought by the 47-year-old, who cannot be named for legal reasons, but is referred to as Martin, involves a challenge against the Director of Public Prosecution's policy on assisted suicide.

PA