Noel Conway who challenged ban on assisted dying dies after removing ventilator

Noel Conway, who challenged the blanket ban on assisted dying in the UK, has died at home after making the decision to have the ventilator he needed to breathe removed, so he would die more quickly.

Mr Conway died aged 71, on 9 June in Garmston, Shropshire. He had been diagnosed with motor neurone disease (MND), an incurable and terminal illness, in 2014.

In a statement, Noel Conway, requested to be released upon his death, he said: “When you read this I will be dead. Not because I have suffered a tragic accident or died suffering from a long-standing or painful disease. No, it will be because I have made a conscious and deliberate effort to end my own life. I suffer from MND and was diagnosed over six years ago knowing that at some stage I would reach a point when my muscles would have deteriorated to such an extent that I could not function effectively.

“Over the past two months it has become increasingly evident to me that the balance of fulfilment in life, or if you like, my quality of life, has dipped into the negative.

“My voice has depleted to the extent that many people cannot now tell what I say and my eyesight recently deteriorated.

“I'm already a paraplegic and I cannot use my hands or fingers but I am aware that my neck muscles are weakening as are my mouth and speech muscles. I recognise that the time has come to take the decision now to do something about this.

“I have spent the last several years campaigning to have the law changed. The topic has been aired nationally and is much more prominent now than it ever was. I am glad that Parliament is continuing to discuss it and investigate the possibilities of an assisted dying law in line with many other countries over the last few years.

“It can only be a question of time before assisted dying will be approved in the UK.”

Mr Conway made the decision to have his ventilator removed with the support of his family, his local hospice, and the breathing and ventilation team.

Removing a ventilator is allowed under UK law and it is not assisted dying

He said: “Under UK law, it is perfectly legitimate to remove a ventilator from someone like me and it is not assisted dying, as a ventilator is a medical intervention by others to support life. By removing it my breathing will be affected so that I will begin to breathe shallower and shallower with time, and within perhaps an hour will not be breathing at all.”

His wife Carol Conway, said: “Noel died peacefully on 9 June 2021. The hospice team, ventilation nurses and all involved were so supportive of Noel, myself and our children. They ensured Noel had a painless and dignified death, demonstrating empathy and concern for us all. Noel was in control, which was so important.

“However, the uncertainty over how long this would take for Noel and what he might experience presented us all with considerable anxiety. Ultimately, Noel wanted the choice of an assisted death, and I hope his campaigning will bring this option closer to becoming a reality for other terminally ill people in this country.”

Sarah Wootton, chief executive of Dignity in Dying, paid tribute to Mr Conway, saying “Noel will be sorely missed by all of us at Dignity in Dying and we extend our sincere condolences to Carol, their family and friends.

Noel Conway helped put assisted dying 'firmly on the political agenda'

“We are indebted to Noel, an inimitable and award-winning campaigner who helped put assisted dying firmly on the political agenda in this country. Noel fought in the courts, lobbied parliamentarians and spoke powerfully to the media about his suffering under the UK’s blanket ban on assisted dying, all the while knowing any change would most likely come too late for him.”

Noel Conway was a father, step-father and grandfather, a former college lecturer and a keen linguist and writer. In 2017-2018 he brought a judicial review with the support of Dignity in Dying to challenge the UK’s blanket ban on assisted dying, arguing that the current law stopped him from exercising his right to choice and control over his death and by doing so forced him to suffer against his wishes.

He wanted to see a change in the law which would give him and other terminally ill, mentally competent adults the option of an assisted death in their final months of life, alongside high quality palliative care.

The High Court and Court of Appeal confirmed that the blanket ban on assisted dying is an interference with the right to respect for private life, as protected by the Human Rights Act. The Supreme Court rejected Mr Conway’s case in November 2018 but the decision acknowledged that assisted dying is “an issue of transcendent public importance” and “touches us all”.

In March 2019 Noel Conway was awarded the ‘Best Use of Law’ prize at the SMK National Campaigner Awards. Mr Conway also succeeded in changing the mind of his MP, Daniel Kawczynski, who is now a committed supporter of law change on assisted dying.

Noel Conway’s full statement can be read here.

• Assisted dying is prohibited in England and Wales under the Suicide Act (1961), and in Northern Ireland under the Criminal Justice Act (1966) which states that anyone who “encourages or assists a suicide” is liable to up to 14 years in prison. There is no specific crime of assisting a suicide in Scotland, but it is possible that helping a person to die could lead to prosecution for culpable homicide.

Before the coronavirus pandemic, on average one Briton every week travelled to Switzerland for a legal assisted death – a process which costs £10,000 on average and often causes people to die prematurely because of the need to retain the physical strength to make the journey.

In Australia, assisted dying is a legal choice for terminally ill citizens in Victoria (June 2019), Western Australia (December 2019) and Tasmania (March 2021). New Zealand is set to legalise assisted dying as a choice for terminally ill, mentally competent citizens by November 2021.

Spain passed a law allowing assisted dying in March 2021 to be implemented later this year.

Canada introduced assisted dying legislation in 2016. Assisted dying is permitted in Switzerland, and broader right-to-die laws are in place in Belgium, the Netherlands and Luxembourg.