Following a high court ruling denying him the right to have a doctor end his life, locked-in syndrome sufferer Tony Nicklinson and his wife say they will appeal the decision. Via a computer a visibly distraught Nicklinson says: “I believe the legal team are prepared to go all the way, but it means yet another period of physical discomfort and mental anguish for me.”

Two severely disabled victims of locked-in syndrome have protested angrily that judges are leaving them to undignified and increasingly distressing lives after they lost a landmark high court battle to be allowed to die with medical help.

Tony Nicklinson, 58, who had sought to end his “dull, miserable, demeaning, undignified and intolerable” life after he was left paralysed below the neck following a stroke seven years ago, wept uncontrollably after the judgment and said it meant his anguish would continue.

As he and his wife announced they would appeal, Nicklinson, via a computer, said: “I believe the legal team are prepared to go all the way, but it means yet another period of physical discomfort and mental anguish for me.”

Another locked-in syndrome sufferer, who can only be named as Martin, had sought permission for volunteers to help him get to the Dignitas clinic in Switzerland. “I wish to be able to exercise the freedom which everyone else would have – to decide how to end this constant tortuous situation“, Martin said in a statement issued by his lawyers.

In a serious blow to pro-euthanasia campaigners, judges said that while the cases were deeply moving and deserved the most careful and sympathetic consideration, the questions they raised were too significant to be decided upon in a court, and could only be answered by parliament.

Lord Justice Toulson said that allowing the two men to be helped to end their lives would have implications far beyond their cases, and a ruling in Nicklinson’s case in particular would have amounted to a major change in murder laws which exceeded the powers of the courts.

“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”, he said.

“Under our system of government these are matters for parliament to decide, representing society as a whole, after parliamentary scrutiny, and not for the court on the facts of an individual case or cases.”

Nicklinson sought assurance that it would not be unlawful for a doctor to assist him to die, or a declaration that the current law on murder or assisted suicide was incompatible with his right for respect for his private life under article 8 of the European convention on human rights.

Lawyers for Martin sought a court order to force the director of public prosecutions (DPP) to clarify whether health professionals willing to assist him to kill himself via Dignitas would be “more likely than not” to face prosecution in England, and further assurances that professionals would not risk disciplinary proceedings.

Rejecting all the applications made by both men, Lord Justice Toulson said that to grant Nicklinson’s requests would require a major change in the law while Martin’s requests would require the DPP to go beyond his legal role. In a lengthy judgment Mr Justice Royce added that the cases gave rise to “the most profound ethical, moral, religious and social” issues.

“No one could fail to be deeply moved by the terrible predicament faced by these men struck down in their prime and facing a future bereft of hope,” he said. “Some will say the judges must step in to change the law. Some will be sorely tempted to do so. But the short answer is that to do so here would be to usurp the function of parliament in this classically sensitive area.”

In upsetting scenes following the judgment Nicklinson’s wife, Jane, stood by her husband at their home in Melksham as he shook with sobs. She described the judgment as one-sided and disappointing.

“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.”

They hoped to organise an appeal hearing before the end of the year and if that failed, she said, “Tony either has to carry on like this until he dies from natural causes or by starving himself“.

After the ruling, Nicklinson said in a statement issued by his lawyer that he was devastated by the decision.

“Although I didn’t want to raise my hopes it happened anyway, because a fantastic amount of work went into my case and I thought that if the court saw me as I am, utterly miserable with my life, powerless to do anything about it because of my disability, then the judges would accept my reasoning that I do not want to carry on and should be able to have a dignified death“, he said.

“I am saddened that the law wants to condemn me to a life of increasing indignity and misery.”

Speaking for Nicklinson, Paul Bowen QC said: “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.”

He was being condemned to live without dignity by the law on assisted suicide and euthanasia, which did not stop the “widespread practice of euthanasia, but has forced it underground”, he said.

Unlike Nicklinson, Martin wanted volunteers to help him make plans to end his life, but under recent guidelines from the DPP only family members or close friends motivated by compassion are deemed unlikely to be prosecuted for assisting a suicide.

Martin’s wife has said that she could not be involved in his death, while respecting his wishes and wanting to remain by his side “to the end”.

His lawyers said they would now discuss with their client whether to launch an appeal. In a statement released by his lawyer, Martin said that he felt “even more angry and frustrated” following the judgment.

“My life following my stroke is undignified, distressing and intolerable. I wish to be able to exercise the freedom which everyone else would have: to decide how to end this constant tortuous situation.”

The ruling was welcomed by “pro-life” campaigners. Dr Andrew Fergusson, of Care Not Killing, said the judgment had come as no surprise as it had been described in court as a “full-frontal assault on the law of murder”.

“[The ruling] confirms the simple truth that the current law exists to protect those without a voice: the disabled, terminally ill and elderly, who might otherwise feel pressured into ending their lives.”

Paul Tully, general secretary of the group SPUC Pro-Life, said: “We welcome the high court’s ruling and we question whether those who have encouraged Mr Nicklinson and Martin to pursue this legal action have the best interests of disabled people at heart. We urge those around them to rise to the challenge of helping them realise their value and overcome their sense of hopelessness. We trust that today’s judgment will help end the insidious campaign in the British courts to change the law on assisted suicide and euthanasia.”

The pro-euthanasia campaigner Dr Antony Lempert, a GP and chairman of the Secular Medical Forum, said the decision left Nicklinson with a terrible choice. “Because other people regard his tortured life as somehow sacred, or are fearful of societal consequences, he is forced to endure his suffering or take desperate measures to end it.

“With no hope now of a quick release, he must choose between this torment and the torment of allowing his family to stand by and watch him starve himself to death.”

Locked-in syndrome

People with locked-in syndrome are usually completely paralysed, unable to move or do anything for themselves, yet entirely aware of what is happening around them and their own situation.

Victims of the condition are unable to speak but may, like Nicklinson, be able to communicate via blinking or moving their eyes. The syndrome can result from brain injury, diseases of the circulatory system, damage to nerve cells or medication overdose.

Although there is no cure, therapy can sometimes benefit victims. One type of therapy, functional neuromuscular stimulation, uses electrodes to stimulate muscle reflexes, and according to experts may help activate some paralysed muscles. In rare cases some patients may regain certain functions, but the chances for motor recovery are very limited.

Alexandra Topping
guardian.co.uk, 16 August 2012