Terminally ill UK man launches legal challenge for right to die

Noel Conway, who has motor neurone disease, says 1961 Suicide Act condemns him to an undignified and terrifying death Noel Conway is in the final stages of the disease and faces losing his mobility. He says he wants to be in control of his own death. Photograph: Annabel Moeller

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.”