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By Tim Wardle

Assisted dying campaigner and My Death, My Decision supporter.

This week is Dying Matters Awareness Week. I am here to talk about why my death matters to me. None of the following relates to deaths arising from war or natural disasters, solely to the end of life in the natural course of events. 

In this country, we have had a very Victorian attitude to death, one of life’s two inevitabilities, whereby the subject is not ‘nice’ to be talked about – if I talk about it, it will happen to me.

Thankfully, this is beginning to change. More and more people are coming to believe that, whether or not they believe in an afterlife, death should be celebrated and that the timing and manner of one’s death should be a matter of choice.

Some context is necessary here. I am nearing my 85th birthday and have been diagnosed with inoperable kidney cancer following a 10-year battle with bladder, prostate and lung cancer. I have lost my maternal grandfather, mother and two sisters to cancer and was present with one of my sisters at her passing. However, I have long held the view that there were circumstances that might warrant assisted dying. Watching the pain and loss of dignity my sister suffered firmly entrenched this belief in my heart. With my current diagnosis, I know what awaits me.

I am in awe of those who work in the palliative care sector for end-of-life patients, but this does not, ultimately, end the pain or prevent the loss of dignity of the recipient. Thus, as a species, we need the choice to determine our ending. That is not to say that any legislation permitting assisted dying should be mandatory for all; simply that each individual should have the opportunity to choose. Having made that choice, the means should then become available without hesitation.

Legislation is long overdue in the UK to provide for assisted dying. There are now many models around the world that could be used to cherry-pick the best practices for adoption here. One thing I am wholeheartedly against is any legislation that restricts the right of assisted dying to those diagnosed with only six months to live. Each case should be determined on its merits and the expressed view of the individual. Legislation should also prevent a third party from raising objection to an assisted death where proper protocol has been followed by the individual.

Quality of life, not quantity of life, should be the predominant factor in deciding if and when life should end. With our pets, we determine on their behalf when they should die if the quality of their lives becomes intolerable – and are praised for our kindness in doing so. How is it then that as thinking beings, able to express our wishes, we are not afforded the same?

I wish to die at a time and place of my choosing before losing control of my speech and bodily functions, and with my loved ones around me, and I do not believe that any authority has the right to deny me that choice.

You can read more from Tim in The Mirror.

We are delighted to welcome our new Patron, Dame Prue Leith. Prue will be a fantastic addition to our ever-growing organisation alongside fellow Patrons Dr Henry Marsh, Miriam Margolyes and Adam Kay, to name a few.

Dame Prue’s interest in the campaign for the legalisation of assisted dying stems from witnessing the suffering of her brother, David, who died from bone cancer in 2012. Watching her brother die an agonising, slow death, Prue found herself thinking, “David, die, please die, just die.” These are thoughts you can never imagine having. But Prue found herself in the same situation as countless others, watching loved ones die painful deaths, feeling helpless and heartbroken.

Prue joins us at a pivotal time for the campaign, and we look forward to working jointly on this issue of great social injustice. We hope that together with our Patrons, members and supporters, we can bring about a long-overdue change in the law.

If you see a blank page after pressing ‘Next’, scroll back to the top of the page.

This page includes the Health and Social Care Committee’s survey on assisted dying. This is not a duplicate survey but an embedded version of the actual survey.
You can find the survey here: https://www.smartsurvey.co.uk/s/M66AML/

If you see a blank page after pressing ‘Next’, scroll back to the top of the page.

This page includes the Health and Social Care Committee’s survey on assisted dying. This is not a duplicate survey but an embedded version of the actual survey.
You can find the survey here: https://www.smartsurvey.co.uk/s/M66AML/

Hundreds of households joined My Death, My Decision’s panel event online on 21 July, to hear from Polly Toynbee, Dr Wendy Savage, Diane Munday, and Natika Haliland their fascinating discussion on the topic of ‘A Woman’s Choice? Fighting for the right to die and women’s rights’. 

When introducing the event, My Death, My Decision’s Chair, Trevor Moore, highlighted findings that he said raised the possibility of a gendered dimension to assisted dying. For example, a higher proportion of British women end their lives, by travelling to Dignitas, than in countries where assisted dying is legal. And, according to data revealed to My Death, My Decision via a freedom of information request, women are twice as likely as men to confess to the police when they have assisted someone to die.

The resulting discussion explored the similarities between the campaigns to legalise abortion and extend women’s reproductive rights – in which the veteran campaign Diane Munday, renowned women’s rights activist Dr Wendy Savage, and executive of the Family Planning Association Natika H were closely involved – and the issue of assisted dying. 

Recognising that women are disproportionately likely to suffer from autoimmune problems, such as Alzheimer’s or Multiple Sclerosis; the similar moral arguments based on autonomy; the parallels between opponents of abortion reform and assisted dying, it was suggested that whilst assisted dying may have a particular impact on women, it wasn’t a women’s issue per se. 

However, several panellists cautioned against allowing a right-to-die to become legal for only a limited number of people in society, such as the terminally ill. Drawing upon the difficulties experienced in amending abortion legislation, Diane Munday warned a limited assisted dying law would be of use to few people and very difficult to change afterwards. 

At a particularly moving juncture, Dr Wendy Savage also discussed her personal experience of accompanying a close friend to Switzerland, and Diane Munday revealed the agonising conditions her husband endured after suffering a stroke that left him paralysed. Diane Munday said: ‘the pleading look in his eyes will stay with me until my dying day. Under extreme pressure of emotion and pain, he could get the words out “die please”. I cannot count the hours I spent sitting beside him with him saying “die please”’. 

The event concluded with a lively discussion of questions from the audience, which ranged from securing support amongst the media, the unique vulnerabilities of women and assisted dying, and the shifting attitudes among the medical profession in relation to assisted dying. 

My Death, My Decision’s Chair Trevor Moore said: 

‘Assisted dying is often framed as a simple and binary debate. Yet, as with any other issue in society, the way in which our current law impacts upon people differs depending upon their background and experiences. And inevitably this means it affects different people in different ways.

‘This is why we thought it was so important to provide a platform in which to discuss the experiences of women and the potential gendered dimensions of this debate. Whether assisted dying is a feminist issue, or indeed whether it should be framed as such, remains an open question. However, we were delighted by the thoughtful contributions of Polly Toynbee, Dr Wendy Savage, Diane Munday, and Natkia Halil – which made plain the urgent need for a change in the law, and the risks of adopting a law limited to the terminally ill alone.’

Notes:

For any more information or comment please contact My Death, My Decision’s Campaigns and Communications Manager at campaigns@mydeath-mydecision.org.uk.

About My Death, My Decision

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

A panel of islanders has voted overwhelmingly in favour of changing the law on assisted dying in Jersey. My Death, My Decision – whose Director Robert Ince was called to give evidence to the panel as a faith leader – has hailed the result as a critical victory for campaigners. 

According to an initial report, 78.3% of the Citizens’ jury agreed that assisted dying should be permitted for adults of sound mind, subject to robust safeguards. A substantial majority (70%) also thought the option of an assisted death should be available to those with either a terminal illness or unbearable suffering. A minority of 22% thought it should be restricted to the terminally ill.

Jersey’s citizens’ jury was convened in response to a petition started by My Death, My Decision’s Assisted Dying Coalition partners, End of Life Choices Jersey. It garnered support from 1,861 islanders. The panel of 23 randomly selected representative members met over a ten-week period earlier this year. 

Robert Ince’s evidence centred on the importance of recognising the need to cover both those with terminal or incurable illnesses in any legislation- as well as the importance of treating others with respect and dignity within the Abrahamic faiths. 

The news follows the death of My Death, My Decision’s patron Paul Lamb, who had been paralysed from the neckdown since 1990. Prior to his death, Paul had also been called as a key witness and had urged panellists to establish a right to die for those in his situation. 

A final report from the citizens’ jury is expected to be released in August this year. 

Speaking before the release of the initial results, My Death, My Decision’s Director Robert Ince said:

‘For more than twenty years the evidence from progressive countries from around the world has been clear – sensible, caring, and compassionate laws on assisted dying can be balanced alongside robust safeguards. I very much hope the jury’s panellists will allow those with terminal or incurable illnesses a compassionate choice and not deny others the same options they would want for themselves.’

Welcoming the report, My Death, My Decision’s Chair Trevor Moore said: 

‘The unequivocal results of the Jersey Assisted Dying Citizens’ Jury show how strongly public opinion supports an assisted dying law for the incurably suffering as well as the terminally ill – precisely the compassionate law that we campaign for at My Death, My Decision. A NatCen poll in 2019 showed even greater levels of public support for this approach in England and Wales. How much longer will it take politicians in Westminster to get on board with their constituents’ views and bring about our own law to reflect this?

‘Such a law would have helped our suffering patron Paul Lamb, who died earlier this month before the law he campaigned for was achieved. We call upon the Government to begin a public inquiry into assisted dying as soon as possible so that evidence, rather than alarmist misinformation, can win out. In that way, we can achieve the law that so many people want.’ 

Notes:

For any more information or comment please contact My Death, My Decision’s Campaigns and Communications Manager at campaigns@mydeath-mydecision.org.uk.

Read the initial report from Jersey’s Citizens’ Jury. 

About My Death, My Decision

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

A new Bill to legalise assisted dying has been lodged in the Scottish Parliament. Its backers include My Death, My Decision’s partners in the Assisted Dying Coalition – Humanist Society Scotland and Friends At the End – and a cross-party group of 12 MSPs. My Death, My Decision has welcomed the proposals, which it hopes will spur action in Westminster. 

The move represents the first time assisted dying has been considered in Holyrood since 2015. However, recent polling shows that 86% of Scots want the issue debated in Holyrood, and 87% support a change in the law. 

Speaking ahead of its introduction, Liam McArthur MSP, who is bringing forward the Bill, said: 

‘I have long believed that dying Scots should be able to access safe and compassionate assisted dying if they choose, rather than endure a prolonged and painful death. 

‘The current blanket ban on such assistance is unjust and causes needless suffering for so many dying people and their families across Scotland. If you have reached the limits of palliative care and face a bad death, none of the current options available to you in Scotland represents an acceptable alternative to a peaceful, dignified death at home.’ 

According to the latest research, it has been estimated that even with the best palliative care, at least 11 Scots per week still die a bad death. 

Welcoming the announcement My Death, My Decision’s Chair Trevor Moore said: 

‘Although we are fortunate to have some of the best palliative care in the world, palliative relief isn’t always capable of easing everyone’s suffering. For many people dying is still a slow, painful, and undignified process. This Bill is, therefore, crucial because it recognises this reality and seeks to give choice and control to those at the end of their life. 

‘We congratulate our partners in the Assisted Dying Coalition for bringing about this important step towards a change in the law. It is not right that those facing terminal or incurable conditions, such as our late patron Paul Lamb, should be forced to suffer when nearly nine in ten people favour a change in the law. We hope that Scottish lawmakers recognise the strength of public support behind these proposals and that decision-makers in Westminster are spurred into action by them. In the coming months, these proposals will be subjected to robust and thorough scrutiny via a public consultation. We urge decision-makers in Westminster to similarly examine the evidence underpinning our nation’s ban on assisted dying by launching an urgent inquiry into the law.’

Notes:

For any more information or comment please contact My Death, My Decision’s Campaigns and Communications Manager at campaigns@mydeath-mydecision.org.uk.

About My Death, My Decision

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

Paul Lamb, the incurably suffering campaigner well-known for challenging the law prohibiting assisted dying in England and Wales, has died aged 65.  

The former builder and father of two, who was paralysed from the neck down since 1990, had previously brought two cases challenging the law on assisted dying. In 2014, alongside Jane Nicklinson – the widow of fellow right to die campaigner Tony Nicklinson – he lost a case before the Supreme Court. Although two judges, including Lady Hale, were ready to declare the law banning assisted dying incompatible with Paul’s human rights, a majority ruled that Parliament should first be given an opportunity to debate assisted dying before the courts made a definitive judgment. 

In 2019 he brought a fresh case, supported by My Death, My Decision, arguing that the current law was discriminatory and breached his human rights under Article 8 (right to a private and family life) and Article 14 (prohibition on discrimination) of the Human Rights Act. However, the Court of Appeal said there were ‘no arguable grounds’ for his case because assisted dying was ‘pre-eminently a matter for Parliament, not the courts’. 

Subsequent to this, Paul Lamb wrote to the Secretary of State for Justice calling on him to ‘turn your sympathy into action’ by holding an inquiry into the law on assisted dying. 

My Death, My Decision has been informed that Paul Lamb died on Tuesday 8 June. His cause of death is unknown. Prior to his death, it is understood that Paul Lamb had spoken of his desire to keep fighting for a change in the law. 

Speaking at the time about his legal defeat, Paul Lamb said: 

‘I cannot understand, in a civilised society like ours, why I should be forced to suffer when millions of people around the world already have the choice I asked for. Throughout my case, all I have been told is how sympathetic others are to my situation. But I have never wanted anyone to pity me. All I have ever wanted is for my choice to be respected and given equal validity under the law, like everyone else’s. Instead, this decision, if it is the final word on the matter, condemns me to a life of constant pain, and removes the small part of my life that I could still have some say over – how I want to die.’ 

Expressing his condolences to Paul’s family, My Death, My Decision’s Chair Trevor Moore said:

‘The team at My Death, My Decision send their heartfelt condolences to Paul Lamb’s family and to everyone who knew and loved him. We are honoured to have had Paul as a much-valued patron who inspired so many people to support the campaign for a compassionate law on assisted dying. He will be greatly missed.

‘Paul faced considerable challenges with unrelenting courage, despite his evident suffering. Through it all, he remained committed to achieving a law that would allow an assisted death not only to the terminally ill, but also to those suffering incurably, as Paul did. We will carry forward his legacy by campaigning with renewed vigour for the law that Paul so tirelessly sought. That is why we continue to press for a public inquiry, now long overdue.’

Speaking about his death, Paul’s carer, Francesca Hepworth said: 

‘Paul’s death has been a shock to us all, but I’m glad he is finally at peace. For years, Paul grappled with his condition and faced increasing pain, discomfort, and distress. But throughout it all, what scared him the most was his utter lack of control, and the prospect of his pain becoming too much to handle. I know Paul was resolute in his belief that nobody should be forced to suffer, and determined to keep fighting to change the law on assisted dying. I only regret that he now won’t be able to see such a choice realised, if the law were to change. I’m proud to have known him, and been able to call such a brave and courageous man my friend. I am going to miss him.’

Notes:

For any more information or comment please contact My Death, My Decision’s Campaigns and Communications Manager at campaigns@mydeath-mydecision.org.uk.

Read more about Paul Lamb.

About My Death, My Decision

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.