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 and grandfather 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

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

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 executive of Dignity in Dying (right), outside the Royal Courts of Justice in London in March 2017

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

Mr Conway is pictured with his wife Carol (left), stepson Terry McCusker (centre back) and Sarah Wootton, chief executive 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

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

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.

‘When you read this I will be dead’: Noel Conway’s final statement 

By NOEL CONWAY 

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 motor neurone disease (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.

MND is a terminal disease but it varies enormously between individuals, so I did not know when I would be facing the final moments. From the period of my diagnosis I was provided with a ventilator, a piece of equipment that has supported my breathing and which was essential even at that early stage to enable me to get a proper night’s sleep. However, it was only about two years ago that I began to use the ventilator more and more frequently during the day as my breathing muscles deteriorated.

It was about a year ago that I became totally dependent on the machine, almost 24 hours a day, seven days a week. I was able to accommodate myself to the new personal regime and a modicum of fulfilment and satisfaction, for example savouring food and drink, engaging in convivial conversation with my friends and others, and periodically visiting local hostelries with my wife Carol.

But, 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 so I can no longer do those things I could before. My voice has depleted to the extent that many people cannot now tell what I say, my eyesight recently deteriorated and I am now classified as partially sighted. I discovered quite out of the blue I had age-related macular degeneration in both eyes. So, now I cannot read normal print size and can just about make out shapes on the television.

For someone who had refocused his life on being a writer, particularly of historical novels, it has become very difficult to undertake research, to the extent that my recent book has been put on hold. In addition, I am very much aware of the loss of bodily function – 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 am not leaving it until I’m completely bed-ridden and unable to communicate at all.

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.

Assisted dying is where someone actually helps me to access and take medication to bring about my death and this is currently illegal. Ironically I have spent the last several years campaigning to have the law changed but without success, although the topic itself 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.

I now find myself in a privileged position of being able to identify the time of my death, its manner and the place. These are all objectives of assisted dying. However, this can only be done legally because I am a user of a ventilator and the whole process will be supervised and managed by medical staff from the palliative care team, for whom I have the highest regard. 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.

Since this option was established the relief in how I would die has been remarkable. However, it is by no means an acceptable equivalent to assisted dying, as the lead up to the removal of the ventilator has revealed.

I was under the impression that the whole process would be over and done with within a period of no more than two to three hours. However, it was explained to me that the ventilator would not be removed until I was thoroughly sedated and this process would take three to four hours with the use of a syringe driver. It would be at this point that the ventilator would be removed and my body would respond according to my current condition and dependency on ventilation, which means it could take from 15 minutes to over an hour before death occurs. During the course of the sedation process, if the medical team present consider I am in distress I will be given more sedatives. Consequently, the whole process may take considerably longer than I had anticipated, and may be as many as six to eight hours.

Clearly this is far removed from the swift end-of-life process as practiced in Switzerland, Oregon and other countries where it is permitted. 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.

Finally, I would like to say a great big thank you at Dignity in Dying for all their help and support over the years of the campaign. It can only be a question of time before assisted dying will be approved in the UK and I am sure we all look forward to that time.

Best wishes and good luck for the future.

Noel

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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.’

His wife Carol Conway said her husband had died peacefully and that the hospice team and ventilation nurses had shown empathy and concern, and ensured he had a painless and dignified death.

Mrs 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.’

And 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.’

Mr Conway’s local MP Daniel Kawczynski, Conservative representative for Shrewsbury, said: ‘My constituent Noel Conway from Garmston has passed away. 

‘This gentleman in long-standing, professional, heartfelt and highly effective campaign on assisted dying convinced me to support change in law. A matter I along with others are seeking to bring before House. Rest in Peace.’

Jo Stevens, Labour MP for Cardiff Central, added: ‘Very sad news. Thank you Noel Conway for everything you did to make the case for Dignity In Dying so powerfully.’

And Channel 5 News health correspondent Catherine Jones said: ‘Sad news about campaigner Noel Conway. I interviewed him when he went to court to fight for a change to the law to allow assisted dying – a thoughtful and courageous man.’

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