Last night, at an event organised by Humanists UK and My Death, My Decision to reflect on ten years since the pivotal ruling in R (Nicklinson) v Ministry of Justice, Lady Hale reflected that it is cruel and inhumane to force people who are incurably suffering to go on living against their will. 

Lauren Nicklinson, daughter of assisted dying campaigner Tony Nicklinson, shared how her father had wished he had died and that an ambulance had never been called. She also spoke emotionally about the hate the family received, “We had letters from religious organisations telling us we were going to burn in hell.”

Lauren Nicklinson said:

“I appreciate that some people value life for what it is. But please do not deny everyone else the freedom of choice because it conflicts with your own moral or religious values.

Because ultimately this is all about autonomy and individual choice. What is right for you isn’t necessarily right for me and vice versa. Dad wanted to bring about his death – not anyone else’s. And if my brain is battered by a blood clot one day and history is repeated, I am confident I would want a way out – but I am certain I would want that choice as a minimum.”

Tony Nicklinson experienced a devastating stroke that left him with Locked-in Syndrome, paralysing him from the neck down with his only form of communication being through eye movements. After the High Court ruled against him in 2012, Tony died two weeks later from pneumonia, having refused food and treatment.

Jane Nicklinson, Tony’s widow, continued the legal battle with Paul Lamb, a former builder and father of two, who was paralysed from the neck down in 1990. They took the case through the Court of Appeal and ultimately to the Supreme Court. On 25 June 2014, the Supreme Court ruled against the Nicklinsons and Paul Lamb with a notable dissent from two judges, Lady Hale and Lord Kerr.

When asked about the lack of nuanced political debate on assisted dying in England and Wales, The Right Honourable Baroness Hale of Richmond said:

“I wish more politicians would say ‘this is hard, but it needs to looked at and it needs to be sorted and we’re going to work hard at getting the best result.’ Why don’t you say that? This is hard and the hard questions are the really important questions. We have answered a lot of very hard questions in this country and we could still do that.”

Lady Hale said:

“Parliament has not put things right, despite all the evidence that the public would support a change in the law. And such proposals as have been debated are limited to terminally ill people with only a few months to live…Of course, there must be proper safeguards to make sure that their decisions are freely made. But it is cruel and inhumane to force them to go on living against their will That is why I support My Death, My Decision.”

Trevor Moore, Chair of My Death, My Decision, said:

“Tonight we honoured Tony Nicklinson and Paul Lamb, fearless advocates for the right to a compassionate death. Their tragic conditions were not terminal, highlighting the injustice of recent parliamentary Bills that, if passed, would have restricted assisted dying to those who are terminally ill with a prognosis of six months or fewer. That would have been both arbitrary and discriminatory.

“Parliament has long avoided addressing assisted dying. It is our hope that the forthcoming parliamentary session will allow a full debate and vote on a change in the law that we know has overwhelming public support.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Today marks ten years since the pivotal ruling in R (Nicklinson) v Ministry of Justice, where the Supreme Court concluded that any decision to change the law on assisted dying is for parliament. My Death, My Decision commemorates the determination of the Nicklinson family, Paul Lamb and all advocates who have championed the right to die. We urge the next parliament to address this crucial issue.

Tony Nicklinson experienced a devastating stroke that left him with Locked-in Syndrome, paralysing him from the neck down with his only form of communication being through eye movements. Describing his existence as a “living nightmare,” he campaigned passionately for the right to ask for help to end his life. After the High Court ruled against him in 2012, Tony died two weeks later from pneumonia, having refused food and treatment.

Jane Nicklinson, Tony’s widow, continued the legal battle with Paul Lamb, a former builder and father of two, who was paralysed from the neck down in 1990. They took the case through the Court of Appeal and ultimately to the Supreme Court. On 25 June 2014, the Supreme Court ruled against the Nicklinsons and Paul Lamb with a notable dissent from two judges, Lady Hale and Lord Kerr, who would have been willing to make an order that our existing laws were incompatible with Tony’s rights under the Human Rights Act.

Paul Lamb died in 2021.

Lady Hale and the Nicklinson family are set to speak at our event on 26 June. Lady Hale will share her reflections on the Nicklinson case and its lasting influence on the conversation about assisted dying.

The Right Honourable Baroness Hale of Richmond said:

“Ten years ago, the Supreme Court decided the cases of Tony Nicklinson and Paul Lamb, incurably suffering but not terminally ill men who wanted and needed help to take their own lives in the time and manner of their choosing. Five of the nine Justices held that the Court could make a declaration that the current law banning assisted suicide was incompatible with the human rights of people like Tony Nicholson and Paul Lamb, but three of those five said that Parliament should be given the opportunity of putting things right first (the other four said that it was a matter for Parliament alone). 

But Parliament has not put things right, despite all the evidence that the public would support a change in the law. And such proposals as have been debated are limited to terminally ill people with only a few months to live. They would not help people like Tony Nicklinson and Paul Lamb. Of course, there must be proper safeguards to make sure that their decisions are freely made. But it is cruel and inhumane to force them to go on living against their will. That is why I support My Death, My Decision.”

Trevor Moore, Chair of My Death, My Decision, said:

“25th June will be a moment for us to honour Tony Nicklinson and Paul Lamb, fearless advocates for the right to a compassionate death. Their tragic conditions were not terminal, highlighting the injustice of recent parliamentary Bills that, if passed, would have restricted assisted dying to those who are terminally ill with a prognosis of six months or fewer.

“We look forward to hearing from Lady Hale on this historic anniversary. Parliament has long avoided addressing assisted dying. It is our hope that the forthcoming parliamentary session will allow a full debate and vote on a law that we know has overwhelming public support.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Mark Drakeford, former first minister of Wales, has spoken in favour of a full UK-wide assisted dying law. Speaking at the Humanists UK convention in Cardiff, Drakeford said assisted dying should be a right across the UK. My Death, My Decision hopes that all political leaders take note and welcome the huge political momentum in support of assisted dying.

In the Q&A, Drakeford was asked if he thought assisted dying should be a devolved matter. 

Mark Drakeford, former first minister of Wales, said:

“I think assisted dying would pass through the Senedd and I would certainly be a supporter of it myself. But I would much rather that it was one of those things that we did on a UK-wide basis. 

You know, I am a fierce believer in devolution, that in Wales, we should take control of our own domestic agenda as much as possible. But I’m also a believer in the United Kingdom, and I believe that something – some rights – in the way that I was describing earlier, should belong to you as a result of your citizenship of the United Kingdom. And you can imagine all the unintended consequences there would be if assisted dying was available in Wrexham but not available in Chester. 

I believe it is one of the things that I would see as a right. I believe you have a right to take control of the way in which you leave this world.”

Trevor Moore, Chair of My Death, My Decision, said:

“It was heartening to hear this support for the right to a dignified, compassionate assisted death from Mark Drakeford. We hope that current political leaders take note of this thoughtful response from the former first minister of Wales.

People who are suffering deserve choice, dignity and compassion. We should not stand in the way of an adult of sound mind who is suffering unbearably from an incurable condition and has come to a settled wish to die. We urge the next Westminster parliament to vote for change.”

When asked last week by Julie Morgan MS “What steps is the Welsh Government taking towards the devolution of powers regarding assisted dying to Wales?”, the Welsh Government replied:

“Welsh Government does not have plans to seek devolution of powers for assisted dying. This is a complex issue with moral and legal considerations, and we have agreed with the UK Government on a neutral position. We continue working with the NHS in Wales to provide high-quality end-of-life care and support to people.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Three of the four major parties have mentioned assisted dying in their manifesto. Two party leaders have pledged to support a vote on assisted dying in the past.

This article is limited to England & Wales. This is not an endorsement of any political party but a factual analysis of information in the public domain.

Here’s a breakdown of what each party said:

Conservative Party:

The manifesto states:

“We will maintain the position that assisted dying is a matter of conscience and will respect the will of Parliament. Debates on assisted dying should never distract from the importance of delivering high-quality palliative care services and we will continue to support children’s and adults’ hospices.”

This is less of a clear pledge compared to what Rishi Sunak, leader of the party, pledged back in February this year, when he said he would support allowing enough parliamentary time for a meaningful debate and vote on assisted dying. Mr Sunak also pledged to introduce assisted dying laws if parliament wanted to change the law, saying the government would “facilitate” it in a “legally effective” way.

Sunak made the comments to campaigner Matt Ryan, 44, who told him that reforms could have eased the suffering his family faced when both his father, David Minns, and his sister, Katie, died from cancer.

Green Party:

The manifesto states: 

“Elected Greens will back changing the law on assisted dying. We support a humane and dignified approach to terminal illness, allowing people to choose to end their lives to avoid prolonging unnecessary suffering, if this is their clear and settled will. Proper safeguards would need to be put in place.”

Assisted dying has been a Green Party policy for some time, although in previous statements they hadn’t explicitly limited their policy to people who were terminally ill. 

We hope that politicians consider a Bill that extends to adults who are unbearably suffering from conditions without a cure, who are of sound mind and have a clear and settled wish to die.

Labour:

The Labour manifesto does not mention assisted dying.

Sir Keir Starmer, leader of the Labour Party, has pledged a vote on assisted dying in the next parliament. He made the commitment when speaking in a phone call with broadcaster Dame Esther Rantzen, who announced in December that she had joined the Swiss assisted dying centre Dignitas. 

Sir Keir told Esther: “I’m personally in favour of changing the law… I think we need to make time. We will make the commitment. Esther, I can give you that commitment right now.”

Liberal Democrats:

The manifesto states:

“‘Give Parliament time to fully debate and vote on legislation on assisted dying for terminally ill, mentally competent adults with strict safeguards, subject to a free vote”

Any Bill that comes before Parliament is likely to be subject to a free vote, meaning that MPs can vote in accordance with their conscience. The Liberal Democrats are reflecting this. Similarly to other manifesto pledges, we are disappointed that this is limited to the terminally ill. It means that someone suffering with multiple sclerosis would be denied the choice, while someone with terminal cancer would be allowed the dignity to end their life when they choose.

Trevor Moore, Chair of My Death, My Decision, said:

“Never before has Britain seen such a high level of political support for assisted dying. With all major parties, or their leaders, pledging to support assisted dying in some form, this is an historic moment. Change is coming.

Our assisted dying law must match the British people’s commitment to compassion. It must not be arbitrarily limited to the terminally ill. People with non-terminal conditions that can cause them to suffer unbearably, like multiple sclerosis and Parkinson’s’, must be given the same compassionate choice.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

The States Assembly in Jersey has just passed a historic milestone, voting in favour of giving islanders the right to choose help to die. My Death, My Decision, welcomes this progress.

Politicians in Jersey have decided by 32 votes to 14, to allow people who are terminally ill with six months or fewer left to live, assistance to die. This time limit is extended to twelve months for people with neurodegenerative conditions such as motor neurone disease.  This is broader than all past proposals in England and Wales, which have been limited to people with six months left to live, no matter the illness.

However, politicians voted against ‘Route 2’ by 19 votes to 27, which would have allowed people who are suffering unbearably from a condition that cannot be cured, but are not terminally ill, access to an assisted death. This means that people who have conditions such as multiple sclerosis or locked-in syndrome would be excluded from having a dignified death. The proposal for this route included additional protections and safeguards compared to ‘Route 1’ for people with terminal conditions.

Half of all assisted deaths of UK residents in Switzerland would likely fall under ‘Route 2’, and 3.5% of assisted deaths in Canada fall under their almost equivalent ‘Track 2’ system. The citizens’ jury carried out in Jersey in 2021 overwhelmingly (78%) called for there to be a compassionate option for people who were suffering unbearably but not terminally ill. 

The proposals, now passed, will be turned into legislation, before a final vote next year. If passed, there will be an 18-month period for doctors to be trained, guidance to be written and a support service to be set up. The first assisted death in Jersey could be in 2027.

Trevor Moore, Chair of My Death, My Decision, said:

“This is an encouraging step for Jersey in its progress to a compassionate assisted dying law. Politicians in the UK should take note. The proposals put forward are detailed, safe and compassionate. Finally, residents of Jersey will have the choice of a dignified end.

 It’s regrettable that politicians voted against ‘Route 2’, as that would have given people with conditions like multiple sclerosis a compassionate choice. It will be hard for health professionals to look at a person with multiple sclerosis and tell them they don’t even have a choice and must suffer, while someone with terminal cancer will have the option of an assisted death on their terms. Nevertheless, Jersey is moving in the right direction while England and Wales have stood still.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images and videos, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

A new BBC documentary by Liz Carr, provocatively titled ‘Better Off Dead?’, has highlighted the views of disabled people within the assisted dying debate. 

This article aims to promote the views of disabled people we work closely with, as well as highlight key research around this debate, which is often overlooked or misrepresented.

Our patron, Jean Eveleigh, responds to the debate:

“Liz Carr is an esteemed actress and a disability campaigner but she is not the sole voice of the disabled community. In her upcoming documentary on the subject of assisted dying she states that “the disabled community is terrified”; However I am a member of the disabled community and I very much want the legal right to be assisted to end my life when my quantity of life dramatically exceeds the quality I have. 

Assisted dying has to be made legal to allow people like me to assert their legal right in the same way non-disabled people can. As a disabled person requesting an assisted death, you are asking someone to aid you in completing a decision you have taken about your life. I have made a decision about my personal health and well-being that I am unable to act on my own and need someone to help me to complete the action. 

To this end, I find this debate and the law it produces vital to the quality of life I currently have. My right to die with assistance will not force anyone else to make the same choice, but their right to live without assisted dying is forcing me to do the same, forcing me to live in pain and distress – this is inhumane and cruel.”

John Knight, My Death, My Decision’s disability advisor, said:

“The slogan “nothing about us without us” is blatantly at odds with the views of around 80% of disabled people in the UK who approve of assisted dying. This contradictory position baffles me”.

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My Death, My Decision’s policy on assisted dying is:

We believe that any adult of sound mind who is intolerably suffering from an incurable, physical condition and has a clear and settled wish to die should have the option of an assisted death.

To be crystal clear, under the kind of law we campaign for, having a disability would not make a person eligible to have an assisted death. They would have to be intolerably suffering from their condition and have come to a clear and settled wish to receive help to die. 

It would remain illegal to encourage anyone, including disabled people, to request assisted dying.

Here is some key research that supports the views we have set out.

Disabled people do not oppose assisted dying:

A survey of 140 disability rights organisations in the UK indicated that only 4% explicitly oppose assisted dying laws. A substantial majority either remain silent (84%) or explicitly endorse neutrality (4%) on assisted dying.

The position of Disability Rights UK is:

“This is a complex issue on which people hold different, passionately held views. Disability Rights UK respects those different views.”

88% of people who identify as disabled favour changing the law on assisted dying in at least some circumstances. 

We have international evidence that assisted dying safeguards work:

One study of Oregon and the Netherlands found no evidence of heightened risk for people with disabilities and non-terminal conditions, and ‘no current factual support for so-called slippery-slope concerns’.

Another study from Belgium found no disproportionate impact on people with disabilities, nor a special increase in requests made or granted to people with disabilities.

Over ten studies have explored this question, looking at data from all jurisdictions where assisted dying is legal. None have found evidence of harm, disproportionate impact, or a slippery slope in protection.

No correlation between disability and uptake of assisted dying.

A 2015 study in the Netherlands, where assisted dying is legal for people who are suffering but not terminally ill, found no correlation between disability and uptake of assisted dying. A study looking at over twenty years of data from Oregon, came to the same conclusion. 

Giving choice, a voice and autonomy to people who are suffering.

Assisted dying legislation gives everyone additional rights. It gives people who are suffering and will never recover the right to exercise autonomy over their own life and death. Denying this right using the veil of disability rights impacts on the free choice that someone like Jean Eveleigh wishes to have available, if the time comes when her suffering is too great. 

Trevor Moore, Chair of My Death, My Decision, said:

‘We must of course hear the voices of assisted dying opponents, but conversely, we cannot allow hypothetical concerns to be a disproportionate distraction from the lived reality of countless people whose suffering is protracted while we await a compassionate law. Knowing that they could control the manner and timing of their own death, if and when they so choose, will in itself be of real comfort.

In the discussion of assisted dying it is crucial that we base decisions on evidence. Regrettably, there are opponents of a law who not only purport to speak for all disabled people, but also paint alarming pictures of assisted dying that are simply not borne out by the evidence from countless places that allow it.’

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Media can use the following press images, as long as they are attributed to “My Death, My Decision”.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

The Crown Prosecution Service (CPS) has updated its figures today, showing that five new cases of assisting a suicide have been referred to them since March 2023. My Death, My Decision urges parliament to get on with legislating for assisted dying, instead of leaving a ‘messy’ law to be interpreted by the CPS.

From 1 April 2009 up to 31 March 2024, the CPS’s manual records indicate there have been 187 cases referred to them by the police that have been recorded as assisted suicide.  This represents five new cases from 31 March 2023 to 31 March 2024. 

Of the cases this year, two were not preceded with, one was withdrawn by the police and two more are ongoing. This brings the total since 2009 to 127 that were not proceeded with by the CPS and 36 cases were withdrawn by the police.

Since 2009, four cases of encouraging or assisting suicide have been prosecuted. One case of assisted suicide was charged and acquitted after trial in May 2015 and eight cases were referred onwards for prosecution for homicide or other serious crime.

Claire Macdonald, Director of My Death, My Decision, said:

‘We agree with Sir Keir Starmer, the law is an absolute mess when it comes to assisted dying, and needs to be fixed. We don’t know the details of these recent cases, but we do know that it is barbaric to investigate and prosecute people who help their loved ones die, when the loved one is suffering and has come to a clear and settled wish. There’s no public interest in punishing compassion. 

Our supporter Sue Lawford was arrested at 5am, jailed for 19 hours and investigated for six months, for the compassionate act of accompanying Sharon Johnston to Switzerland. Sharon had filmed an entire BBC documentary about her wish to die on her own terms’. 

Since 2009, prosecutors have decided whether or not to charge someone with helping another to die by following the Director of Prosecutions’ Guidelines on Assisted Dying.

Before 2009, it was unclear when someone might be prosecuted for helping another person to die. As a result, a legal case was successfully brought against the Director of Public Prosecutions by Debbie Purdy, a former music journalist who suffered from the incurable condition multiple sclerosis. The UK’s highest court ruled that the Director of Public Prosecutions had to clarify the factors that they would consider when deciding whether to bring a criminal prosecution.  

Following Debbie Purdy’s case, the then Director of Public Prosecutions, Sir Keir Starmer, issued the current guidelines on assisted dying. They have been updated on only one occasion since then, to clarify that medical staff are, by virtue of their position, more likely to be prosecuted if they assist someone to whom they owe a duty of care.

The Director of Public Prosecutions’ Guidelines on Assisted Dying apply both to assisted deaths that occur abroad and within the UK.

The guidelines do not state every factor which could be relevant, but broadly suggest it is less likely a prosecution would be in the ‘public interest’ if someone: 

• Made a voluntary, clear, settled, and informed decision to end their life 
• Was wholly motivated by compassion when helping someone else to die 
• Provides help ‘of only minor encouragement or assistance’
• Attempts to dissuade another person from ending their life before helping 
• Reluctantly provides help to another person 
• Reports to the police that they have helped someone to die, and fully assists any investigation. 

Alternatively, the guidelines also indicate that it is more likely a prosecution would be in the ‘public interest’ if someone: 

• Helps someone aged under 18 years old 
• Helps someone who was not of sound mind (meaning they did not have ‘mental capacity’) 
• Helps someone without a voluntary, clear, settled, and informed decision to end their life
• Was not wholly motivated by compassion e.g. choosing to help someone because they stand to gain in some way from their death 
• Pressures someone or did not take steps to ensure that someone was not being pressured into ending their life 
• Helps someone who was not physically able to end their life themselves 
• Helps someone who was a stranger 
• Helps someone in their capacity as a medical doctor, nurse, or other healthcare professional. 

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

The Health and Social Care Committee’s assisted dying inquiry has published its final report.

My Death, My Decision is a grassroots campaign group with over 3,000 supporters that wants the law in England and Wales to allow those who are terminally ill or intolerably suffering the option of a legal, safe, and compassionate assisted death. 

We were one of the core groups that campaigned for an inquiry into this vital issue. Now the report has been published, here is everything you need to know about it and what it means for you. 

No explicit call to change the law, but a foundation for change.

We were disappointed to see that the report contained no direct recommendations for a change in the law. In our view, this was a missed opportunity to push the debate forward. However, it clearly outlines the evidence and should be used as a roadmap for the next parliament to legislate on assisted dying.

Palliative care is improved by the introduction of assisted dying legislation.

The assisted dying inquiry had a considerable focus on palliative care. It was the main question they asked on their call for evidence and it was a core reason why they visited the US state of Oregon, which has had an assisted dying law since 1997. They visited a hospice in Clapham too.

One of the biggest conclusions of the report is:

‘In the evidence we received, we did not see any indications of palliative and end-of-life care deteriorating in quality or provision following the introduction [of assisted dying]; indeed the introduction of [assisted dying] has been linked with an improvement in palliative care in several jurisdictions.’

We are encouraged to see that parliament has finally understood that palliative care and assisted dying are two sides of the same coin.  The report made references to ‘a good death’ – which was described as ‘where the person dying was cared for with compassion and high-quality care and provided with as much agency and choice as possible.’

On palliative care, cited at paragraph 297, Dr Naomi Richards from the University of Glasgow neatly summarises why it is not always the answer:

 ‘It is really important that we do not just think it is about pain and symptom management, although it is in some cases. A bad death for some people is not dying on their own terms.’

The Committee itself recognised that very point, at paragraph 306:

‘Suffering, pain and managing a terminal diagnosis will be a subjective experience, unique to the person experiencing them, and although there may be in the future, there is not currently a medical intervention available to manage every symptom or pain.’

The biggest omission: who should be eligible for assisted dying in the UK?

There are essentially two models of assisted dying around the world. One model allows for terminally ill people who have six months or less to live (sometimes twelve months for neurodegenerative conditions). The other, the one we advocate for, allows people who are intolerably suffering from a physical, incurable condition to be eligible. It’s far more compassionate – recent research shows that less than half the UK residents who seek an assisted death in Switzerland would be helped by the narrower first model that Parliament has considered to date. 

They did listen to our evidence, saying: 

“Some evidence called for any introduction of [assisted dying] not to be restricted to terminal illness. Campaign group My Death, My Decision stated that “not allowing people with disabilities the right to make decisions about their own end of life removes their autonomy and is discriminatory.” (page 53)

This was articulated well by Professor Stephen Duckworth, cited at paragraph 139:

“A terminally ill person requesting an Assisted Death is not choosing between living and dying. They are choosing between 2 different ways of dying; either enduring avoidable suffering or a peaceful death surrounded by family and friends celebrating life. Disabled People opposing Assisted Dying often do so because they see it devaluing disabled people’s lives. They fail to recognise that opposition on the grounds of disability devalues us even more profoundly by ignoring our diverse voices and refusing to respect our autonomy.”

The committee also listened to some people who are intolerably, incurably suffering. In a roundtable, one of the participants with a chronic condition told them:

“As my life starts to end and the myriad increasing comorbidities multiply, I want to die while I’m able to choose and act preserving my dignity and self-respect. I do not want my death to be exported to another country. I do not want to criminalise my family. I want to part from my family with smiles.”

Yet after all that, they didn’t take a view on the scope of a UK law should be based on life expectancy, terminal illness and/or suffering incurably. Why should people who suffer from conditions like motor neurone disease or multiple sclerosis be forced to suffer?

Public Opinion is in favour of assisted dying – the public wants the law to change

Public opinion is undeniable – most people want change. The inquiry quotes our research on this:

“In their submission My Death My Decision, a campaign group also in favour of [assisted dying] (not only for those who are terminally ill), similarly referred to surveys and polls that they state showed that ‘a clear majority of the public in England and Wales supports assisted dying.’” (page 61)

The public has overwhelmingly supported a change in the law for a long while, and we are pleased that politicians are taking note of this.

The law is forcing people to die early

We’ve argued for a long time that the current status quo is wrong. Only people with the physical capacity and the funds can flee abroad for an assisted death. The report admits:

“As the individual seeking [assisted dying] has to be well enough to travel to Switzerland, many decide to do so much earlier than needed, in fear that they will not be fit to travel if they wait.” (page 12)

And one of the participants of the round table told them: 

“My mum went as soon as she possibly could on the basis that a three-month delay to another appointment at Dignitas might actually mean she could never make it at all, because she’d become immobile because her disease was unpredictable. So she left sooner than she otherwise would have. We’re shortening people’s lives because they’re choosing to go out early. And that’s an intolerable current state, in my view.”

The law is not clear

This report has reignited the debate about just how unclear and messy the law  currently is. The report mentions different guidance from the British Medical Association and the General Medical Council:

 ‘Although it is not illegal to provide medical reports [to facilitate assisted suicide abroad], it does not seem entirely clear to doctors what they are allowed to do’. (page 13)

However, the BMA has already written back to the committee trying to clarify the distinction between giving a patient their medical records and writing a report specifically for a patient to access assisted dying overseas. Yet we’ve heard reports of GPs refusing to even hand over medical records if they know the patient wants an assisted death. 

The law isn’t fair to patients or doctors in this regard.

Our political process may hinder this important debate

To date, the main way to change the law on this subject has been a Private Members’ Bill (PMB) which is when a backbench MP tries to change the law, instead of the matter being part of the government’s programme of legislation. MPs’ names are drawn out of a ballot, only 20 are chosen and they are rarely given enough time to lead to law change. 

Simply put, changing the law on this vital issue is a game of chance, and even if you win, you may run out of time to change the law. The report outlines why this is an issue:

“that attempts to table multiple amendments and to “filibuster” debate (when one or several Members talk for so long that the time for the debate runs out) have prevented the progress of Private Member’s Bills on this topic” (page 17)

It’s clear from this that the government needs to make time for a bill. The public wants change and thinks this is a vital issue – so why is it being left to chance?

Could a citizens’ jury be the answer?

The report paid a lot of attention to citizens’ juries and citizens’ assemblies. A citizens’ jury brings together a diverse group of people representative of the general public. They work through an issue, share ideas and eventually come up with a set of recommendations.

A citizens’ jury was set up to discuss assisted dying in Jersey in 2021. 78% of participants believed that assisted dying should be legalised for both the terminally ill and the unbearably suffering. This led to the State Assembly in Jersey supporting assisted dying ‘in principle’. Given its population size, a much larger citizens’ assembly was held in France on this topic and also came out in favour. President Macron has announced that draft legislation will be produced soon.

The inquiry report goes into detail about the Jersey citizens’ jury. It also includes the testimony of one of the roundtable members who thought a similar exercise in England and Wales would be a good idea to improve the quality of the debate on this topic.

43% of people who responded to the inquiry’s survey for individuals saying they were in favour of changing the law, said that a citizens’ assembly would be a good way forward.

Whatever happens, parliament must act.

Despite the report not coming to any clear recommendations, one thing it did say is that other jurisdictions in the UK and crown dependencies are likely to legalise assisted dying. Scotland, Jersey and the Isle of Man could all legalise it relatively soon.

The report says:

“at least one jurisdiction among the UK and Crown Dependencies will allow [assisted dying] in the near future and Ministers should be actively involved in discussions on how to approach the divergence in legislation.” (page 23)

We agree. Politicians can’t procrastinate on this issue any longer.

Trevor Moore, Chair of My Death, My Decision said:

“This report should be an important reference point in developing a compassionate assisted dying law. The report is clear that individuals in the UK are suffering unnecessarily and that the present law is a shambles.  Doing nothing is no longer an option. Adults who are suffering intolerably from incurable conditions deserve the right to make their own end-of-life decisions.

While it is disappointing that the report didn’t go further to directly recommend change, nothing in this report should block Parliament from acting. So we urge the next parliament to respond to overwhelming public support and act on this as a priority, drawing on the experience of the 31 jurisdictions that have already done so.”

If you want to know more about what the inquiry did and how it came to these conclusions, read our summary of the assisted dying inquiry. 

Notes:

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable physical condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Read more about our work with the Assisted Dying Inquiry: https://dev.mydeath-mydecision.org.uk/2023/07/13/our-summary-the-assisted-dying-inquiry/ 

Day: Monday 29 April

Time: 3.30pm to 4.30pm

Where: Parliament Square

Join us for a momentous rally in support of assisted dying. This is our moment to put our campaign for compassion, autonomy, and dignity for all on centre stage.

Adults who are unbearably suffering from an incurable condition should have the right to choose a compassionate and dignified death.  We need politicians to understand that they cannot ignore this issue – and we need to show that the majority of people are crying out for a change in the law. When you join us for this rally, you lend your voice to a cause that impacts thousands of people and their families. Together, we can change the law.

RSVP

What to expect:

We will be providing banners, placards and posters. We will be joined by supporters of Humanists UK, our fellow campaigners on the Assisted Dying Coalition. There will be photography and filming throughout the rally – we need you to be loud and present.

What to bring:

People: We need numbers. Politicians can’t ignore that the public overwhelmingly supports assisted dying. Please ask friends, family and loved ones to come with you. 

Banners: We will be providing the banners, but if you want to make your own you are welcome to. If you are definitely going to join us, and you would like to hold up a placard with a picture of a loved one, get in touch and we may be able to help you out.

What can I do?

Tweet your support! And post on social media. Email everyone nearby. 

Join us at the Assisted Dying Rally and stand up for the right to die with dignity. Together, we can make a difference and create a more compassionate society.

Where do I go?

Parliament Square, London, SW1P 3JX. The closest station is Westminster and we will assemble on the grass. You’ll see us and we will be directly in front of big ben and the Palace of Westminster

RSVP: 

Please let us know you’re coming so we can keep an eye on numbers and update you if needed!

For inquiries or further information, please contact mail@mydeath-mydecision.org.uk

We look forward to seeing you there!