A retired lecturer who is terminally ill has launched a legal challenge for the right to die, claiming that the 1961 Suicide Act condemns him to an undignified and terrifying death.
Noel Conway, 67, from Shrewsbury, was diagnosed with motor neurone disease more than two years ago and fears being “entombed” in his own body as his ability to move declines. He is not expected to survive beyond the next 12 months.
Supported by the organisation Dignity in Dying, Conway has instructed the law firm Irwin Mitchell to seek permission for a judicial review in the high court of the ban on assisted suicide which, he says, prevents him ending his own life without protracted pain.
Assisted suicide is prohibited by section 2(1) of the Suicide Act 1961 and voluntary euthanasia is considered murder under UK law. Conway’s challenge, if the court hears it, could establish strict criteria and safeguards for terminally ill adults to make their own decisions about ending their lives.
It is hoped the claim, formally against the Ministry of Justice, will be heard early this year. Before his illness, Conway, who taught social sciences and is married with children, enjoyed hiking, cycling and traveling. His deteriorating condition means, however, that his ability to move, dress, eat and deal with personal care independently has diminished. He is already dependent on a ventilator to breathe overnight.
“I have motor neurone disease. It is incurable and terminal. It is a muscle-wasting disease and I am now heading for its final stages when I face not being able to move at all. This prospect is terrifying and the amount of suffering unimaginable,” he said.
“Current law means that I will have no control of how my life ends and I will have to endure this nightmare for as long as it takes. As someone who has always been in control of his life and taken responsibility for himself, I find this quite unacceptable. I want to change the law to allow assisted dying so that I can be in control of my own death.
“If I let nature take its course, I could effectively become entombed in my own body as my ability to move and communicate continues to diminish, or I may die by suffocation or choking. I could bring about my death by refusing my ventilator, but then there is the unbearable uncertainty of not knowing how long it would take and no guarantee that my distress and pain could be adequately managed.”
Conway said he had considered traveling to a suicide clinic in Switzerland, but that it would be expensive and he did not wish to “die in a faceless clinic, away from my home and without my loved ones”.
Sarah Wootton, the chief executive of Dignity in Dying, said: “Noel’s experience sadly echoes that of hundreds of other terminally ill people in this country. Choice and control at the end of life are rights that everyone should be able to exercise and it is a tragic failure of our laws that Noel and others are being denied them.
“Despite overwhelming public support for assisted dying, our government has failed to act and is ignoring the pleas of terminally ill people. Britain is being left behind as jurisdictions around the world implement compassionate laws allowing dying people the choice and control they deserve.”
Yogi Amin, a partner and head of public law at Irwin Mitchell, said: “Noel is an extremely brave and proud man who is supported by his loving family. He would like the choice to be able to die with dignity. The world has changed phenomenally in the past few decades with many medical advances, but the law on assisted dying for those who are terminally ill hasn’t changed for more than 50 years.”
The supreme court dismissed a case brought in 2012 by Tony Nicklinson, who suffered from paralysis after a stroke. The judges recommended that parliament should debate the issue before the courts made any decision to change the law.
Nicklinson died days after the verdict but his widow, Jane, went on to take the case to the European court of human rights where it was again defeated in 2015 on the grounds that it was for national parliaments to decide on such a sensitive issue.
The Inter-Faith Dignity in Dying (IFDiD) group involving Christian and Jewish clergy who support a change in the law supports Conway’s case. “We hold that being religious is not just about respecting life, but also about knowing when to let go,” said Rabbi Dr Jonathan Romain, IFDiD’s chair. “A religious perspective includes the right to die as well as possible, rather than be forced to endure unnecessary suffering.”
A man paralysed from the neck down has lost his High Court case to allow doctors to end his life without fear of prosecution.
Tony Nicklinson, 58, from Melksham, Wiltshire, communicates by blinking and has described his life as a "living nightmare" since a stroke in 2005.
Mr Nicklinson said he would appeal against the decision.
The case went further than previous challenges to the law in England and Wales on assisted suicide and murder.
Another man, known only as Martin, who is 47, also lost his case to end his life with medical help.
Father-of-two Mr Nicklinson was left paralysed with locked-in syndrome after a catastrophic stroke while on a business trip to Athens.
These are matters for Parliament to decideLord Justice Toulson
He said he was "devastated" by the court's 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.
"I am saddened that the law wants to condemn me to a life of increasing indignity and misery."
Explaining the decision, Lord Justice Toulson, said both cases were "deeply moving".
However he added: "A decision to allow their claims would have consequences far beyond the present cases. To do as Tony wants, the court would be making a major change in the law.
Diane Pretty was terminally ill with motor neurone disease. She wanted the courts to give her husband immunity from prosecution if he was to help her die. In November 2001 the House of Lords refused her application.
Ms B was left a tetraplegic by a brain condition. She went to court because doctors refused to stop her artificial ventilation. The High Court ruled in 2002 that her request was valid and treatment was stopped.
Mrs Z, who had an incurable degenerative disease, wanted to go to Switzerland to die and Mr Z arranged it. An injunction to prevent the travel was granted to the local authority. The order was overturned in 2004.
MS sufferer Debbie Purdy challenged the lack of clarity on the law on assisted suicide. She wanted to understand how prosecutors would make a decision on whether or not to prosecute her husband if he was to assist her to get to Switzerland to be helped to die. Ms Purdy won her case and guidance was issued.
"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.
"Under our system of government these are matters for Parliament to decide."
The case differed from other "right-to-die" cases which have focused on assisted suicide. Mr Nicklinson would be unable to take lethal drugs, even if they were prepared by someone else.
For someone else to kill him would amount to murder.
The rulings were welcomed by the group SPUC Pro-Life. Paul Tully from the organisation said: "Compassion and solidarity are the humane and caring responses to locked-in syndrome. To legalise killing of those who are suffering would adversely affect many, many people.
"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 British Medical Association said the court had made "the right decision".
For most people the debate is often remote from ordinary lives but for me, the debate on assisted dying is truly a matter of (an unhappy) life and (a pain-free) death
Tony Nicklinson in his own words
Dr Tony Calland, from the BMA's medical ethics committee, said "The BMA does not believe that it would be in society's best interests for doctors to be able to legally end a patient's life.
"The BMA is opposed to the legalisation of assisted dying and we are not lobbying for any change in the law in the UK".
During the hearing in June David Perry QC, who is representing the Ministry of Justice, said Mr Nicklinson's "tragic and very distressing circumstances evoke the deepest sympathy".
"Notwithstanding the distressing facts of his situation, the defendant submits that the claim for declarations is untenable. The law is well established," he added.
The case was contested on the issue of "necessity" arguing that the only way to end Mr Nicklinson's suffering is to allow him to die.
This was used in 2000 when conjoined twins were separated, saving one even though doctors knew the other would die.
Mr Nicklinson's team also argued that his case is covered by Article Eight of the European Convention on Human Rights which deals with the right to respect for private and family life.