Noel Conway, terminally ill assisted dying campaigner, has died at the age of 71

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.

ENDS

The Conway family ask for privacy at this time and will not be conducting interviews. Please direct all media requests to Dignity in Dying via ellie.ball@dignityindying.org.uk or 07725 433 025. Interviews are available with representatives of Dignity in Dying.

Noel’s full statement can be read here: https://www.dignityindying.org.uk/news/noel-conways-final-statement/

 

Notes to Editor:

Noel Conway v Secretary of State for Justice

With support from Dignity in Dying and law firm Irwin Mitchell, Noel brought a judicial review against the Secretary of State for Justice, challenging the blanket ban on assisted dying and proposing a change in the law to allow terminally ill, mentally competent adults the option of an assisted death, subject to approval by two independent doctors and a High Court judge.

His case was heard at the High Court on 17-20 July 2017. A written judgment was handed down in 5 October 2017, rejecting the judicial review claim. Noel and his legal team were granted permission to appeal this decision on 18 January 2018, and a hearing took place at the Court of Appeal on 1-3 May 2018. A judgment was handed down on 27 June 2018 rejecting the case. Noel and his legal team applied to the Supreme Court to appeal this decision, and a permissions hearing took place on 22 November 2018. The appeal was rejected on 27 November 2018.

Dignity in Dying

Dignity in Dying campaigns for greater choice, control and access to services at the end of life. It campaigns within the law to change the law, to allow assisted dying as an option for terminally ill, mentally competent adults with six months or less to live – something supported by 84% of the public (Populus, 2019).

The Assisted Dying Bill

Baroness Meacher’s assisted dying bill was selected seventh in the House of Lords private members ballot in May 2021, meaning it is highly likely to be given time for a full Second Reading debate later this year. Its First Reading took place on Wednesday 26th May 2021, where Baroness Meacher introduced the Bill to the House of Lords. Dates for future Readings will be announced in due course.

This bill is based on one introduced by Lord Falconer in 2014, the full text of which can be found here: https://bills.parliament.uk/bills/2592

Rob Marris MP introduced a similar bill in 2015 which was defeated in the Commons.

The functioning of the current law on assisted dying was the subject of a Backbench Business Committee Debate in July 2019 and a Westminster Hall debate in January 2020, at which a majority of MPs speaking called for a review of present legislation.

In April 2021, the Health Secretary announced to the All Party Parliamentary Group on Choice at the End of Life that he had requested data from the Office for National Statistics on suicides by terminally ill people and assisted deaths in Switzerland of British nationals. This followed comments Mr Hancock made in the House of Commons in November and January this year highlighting the Government’s role in obtaining a fuller understanding of the functioning of current assisted dying laws, the need for a fair and evidence-based debate, and the importance of suicide prevention and patient safety measures.

The UK’s laws on assisted dying

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.

The Government of Jersey, a British crown dependency, is currently conducting a citizen’s assembly on assisted dying which will report recommendations back to the States Assembly for debate later this year.

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. Anyone who assists in the arrangement of an assisted death overseas or accompanies someone to Switzerland for this purpose could be prosecuted for ‘assisting a suicide’ in England and Wales. Polling has found that over half (53%) of Brits would consider travelling abroad for an assisted death if terminally ill and two-thirds (66%) would consider breaking the law to help a loved one do so, yet only a quarter (25%) would be able to afford it.

A further 300 terminally ill people end their own life in England every year on average, and 17 people every day suffer as they die even with access to the best end of life care.

International developments

In the US, assisted dying as an option for terminally ill, mentally competent adults in their final months of life is legal in 11 jurisdictions: Oregon (1997), Washington, Vermont, Montana, the District of Columbia, California, Colorado, Hawaii, New Jersey, Maine and New Mexico (April 2021).

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, following a public referendum on the End of Life Choice Act in October 2020.

In Ireland, an assisted dying bill is currently undergoing pre-legislative scrutiny after a majority of TDs voted to progress the Dying with Dignity Bill 2020 in October.

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

Austria’s Supreme Court ruled in December 2020 that its blanket ban on assisted dying is unconstitutional and the practice will be decriminalised in limited circumstances by 2022.

Germany began considering potential assisted dying legalisation in January 2021 after its Constitutional Court struck down the ban in 2020.

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.

Healthcare professionals

The largest ever poll of British doctors on assisted dying, conducted by the British Medical Association, results of which were released in October 2020, found overwhelming support for a change to the BMA’s current stance of opposition to an assisted dying law (61%), and that half of doctors personally support a change in the law (50%). The BMA’s current position – opposed to a change in the law – is due to de debated at their next Annual Representative Meeting in 2021.

In September 2020, Eminent GPs Prof Aneez Esmail and Sir Sam Everington launched a legal challenge to the Royal College of GPs alongside the Good Law Project and Dignity in Dying over RCGP Council’s decision to maintain opposition to assisted dying despite its own survey showing a dramatic shift in GP opinion.

In March 2019, the Royal College of Physicians dropped its longstanding opposition to assisted dying in favour of neutrality following a member survey.