Terminally-ill assisted dying campaigner Noel Conway dies aged 71

Terminally-ill assisted dying campaigner Noel Conway who suffered from motor neurone disease has died aged 71 after deciding to have his ventilator removed, a charity said today.

Dignity in Dying said the retired college lecturer had died at home in the Shropshire village of Garmston on Wednesday, seven years after he had been diagnosed with the incurable and terminal illness.

It said he died after deciding ‘to have the ventilator he had become dependent on to breathe removed in order to hasten his death, with the support of his family, his local hospice, and the breathing and ventilation team’. 

Mr Conway spent years campaigning for assisted dying, with his most recent major act in November 2018 seeing him refused permission for a challenge over the law at the Supreme Court in London. Judges rejected his bid to appeal against an earlier ruling in his fight over current legislation which prevented him from being helped to die. 

Terminally-ill assisted dying campaigner Noel Conway with his wife Carol at Telford Justice Centre in Shropshire in May 2018

Mr Conway is pictured with his wife Carol (left), stepson Terry McCusker (centre back) and Sarah Wootton, chief executiev of Dignity in Dying (right), outside the Royal Courts of Justice in London in March 2017

Campaigners and supporters of Mr Conrway stand outside the Royal Courts of Justice during a legal challenge in May 2018

He had wanted medical assistance to die when he had less than six months left to live, still had the mental capacity to make the decision and had made a ‘voluntary, clear, settled and informed’ choice.

Mr Conway also lost another Court of Appeal challenge in June 2018 against an earlier High Court rejection of his case that the ‘blanket ban’ on assisted dying was an unjustified interference with his human rights.

In a statement written to be released upon his death, Mr Conway 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.’ 

He added: ‘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… Under UK law it is perfectly legitimate to remove a ventilator from someone like me.

‘This is not something I would have chosen but I feel that I have no alternative to ending my life without pain and suffering and without compromising others… However, my heart goes out to all those people who are terminally ill with cancers and other horrible diseases which make their lives execrable because they can’t find any release from their terrible suffering.

‘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’s wife Carol Conway said: ‘Noel died peacefully on June 9, 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, said: ‘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. 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 will be remembered as a loving husband, father, grandfather, friend, lecturer, mentor and for playing an instrumental role in bringing us closer to having a safe, compassionate assisted dying law in this country.’

Keen linguist and writer Mr Conway, who was a father, stepfather and grandfather, brought a judicial review with the support of Dignity in Dying to challenge the UK’s blanket ban on assisted dying in 2017.

He argued that the current law prevented him from exercising his right to choice and control over his death and therefore forced him to suffer against his wishes. 

Mr Conway called for a change in the law to enable 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.

A Dignity in Dying spokesman said: ‘Noel called for a change in the law to enable 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 both reaffirmed that cases of this nature can be decided upon by the courts, thereby enabling future cases to have an easier passage. The courts also 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 Noel’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 was awarded the ‘Best Use of Law’ prize at the SMK National Campaigner Awards.

‘Noel also changed the mind of his MP, Daniel Kawczynski, who is now a committed supporter of law change on assisted dying. Noel spoke with the Health Secretary in January 2021 alongside Mr Kawczynski, after he raised his constituent’s case in the House of Commons in November 2020 in response to an urgent question on assisted dying.’