Noel Conway, a terminally ill man who challenged the blanket ban on assisted dying in the UK, has died at home in Garmston, Shropshire at the age of 71 on 9 June 2021. Noel was diagnosed with motor neurone disease, an incurable and terminal illness, in 2014. He died after making a decision 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.
In a statement Noel 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…
“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…”
Carol Conway, Noel’s wife, said:
“Noel died peacefully on the 9th of 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, 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.”
Noel was a father, step-father and grandfather, a former college lecturer and a keen linguist and writer. In 2017-2018 Noel 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 prevented him from exercising his right to choice and control over his death and thus forced him to suffer against his wishes. 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.
