Kim Leadbeater MP has formally introduced the Terminally Ill Adults (End of Life)

The Bill will “allow adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life; and for connected purposes”

My Death, My Decision welcomes this historic step, but is disappointed that the title of the Bill includes ‘terminally ill’, because those words limit the Bill’s permitted contents, meaning this Bill will exclude people who are suffering unbearably but are not necessarily terminally ill. 

It’s not impossible to amend long and short titles of Bills, but it’s incredibly rare and often done for technical reasons.

The Bill will exclude most people with conditions like Parkinson’s, Huntington’s and Multiple Sclerosis from having the option of an assisted death. Recently, we revealed that more than half of the Brits going to Switzerland wouldn’t be helped by a bill limited to people who are dying with six months left to live or fewer.

On Monday, we published a joint letter urging parliamentarians to consider a wider law. Many of the signatories would not be helped by a law limited to the terminally ill.

The full Bill should be published within the next few weeks, the 2nd reading will take place on the 29th November.

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

“This is a bittersweet moment. On the one hand, the introduction of an assisted dying Bill in the House of Commons is a significant and long-awaited step. We commend Kim Leadbeater MP for putting forward the case for change, and we wholeheartedly support efforts to end the inhumane blanket ban on assisted dying.

Many conditions such as Multiple Sclerosis, Parkinson’s and Motor Neurone Disease can make life intolerable for the sufferer well before they can be described as terminal, or the diagnosis of terminal status may come too late, when the patient has lost mental capacity. My Death, My Decision aims to represent these people, and we will continue to do so as the Bill progresses.”

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.

Dear Kim Leadbeater MP,

Firstly, we thank you for bringing forward an assisted dying bill. This will be one of the most significant ethical issues of our generation. As a group—some living with incurable conditions, others having seen loved ones suffer—we all believe that people enduring intolerable suffering deserve choice and dignity. 

We urge that any law should not be limited to those with six months or fewer to live. It should include adults of sound mind who are suffering unbearably from an incurable physical condition and have a clear, settled wish to die. The safeguards must be clear and robust to protect everyone involved, but the process should not be so complex that it causes unnecessary suffering or people dying before they can exercise their choice.

Too many have been forced to suffer in silence or travel abroad to access end-of-life options. Assisted dying is not about giving up on life; it’s about offering a compassionate choice when suffering becomes unbearable. Each of us has a story that could have ended differently with the right legislation in place. 

We ask you to ensure that this law allows individuals autonomy over their own lives, with the support and protection of the law.

Thank you again for championing this issue. We trust you will continue to listen to those most affected and support a fair, compassionate law.

Yours sincerely,

Information of signatories:

	Colin Barnes	Colin’s wife Jane suffered from multiple sclerosis and expressed a wish to die. Jane was in excruciating pain over most of her body, she suffered many spasms, she was bed-bound and she could not eat or drink. She died in 2023, weeks after speaking to the Mirror about her experience.
	Amanda Clement-Hayes	Amanda’s father-in-law, Eddy, died just ten weeks after a bladder cancer diagnosis. He had a brutally painful death in a hospice and Amanda believes he should have had a choice.
	Carole Clohesy	Carole’s mother lived with severe pain for most of her life, starting with a spinal injury that led to years of inadequate pain management. Her suffering only got worse as she aged due to osteoarthritis and other health problems.
	Patrica Donoghue	Patricia’s husband Kevan had a terrible death after a shock cancer diagnosis. Patricia is a retired nurse practitioner and couldn’t believe how much pain her husband was in. He died after not eating or drinking for three weeks as a result of his illness.
	Jean Eveleigh	Jean Eveleigh has Ehlers-Danlos Syndrome, a genetic, degenerative condition that is progressively robbing Jean of all her bodily functions. Jean firmly believes the place and timing of her death should be her choice when she no longer has any quality of life.
	Bryan and Annie Grayson	Bryan and Annie watched on as Annie’s father Harry suffered an inhumane death against his wishes. He was not terminally ill, but was never going to get better, only decline. Aged 102, Harry starved to death in order to have control.
	Anne Jappie	Anne has Multiple Sclerosis and is in her late 60’s. She can no longer travel unaided to Switzerland for an assisted death but doesn’t want her loved ones to be punished for helping her.
	Nikki Davey and Helena Killip	Nikki Davey and Helena Killip are the family of Alan Davey, who suffered from Motor Neurone Disease and wanted to go to Switzerland for an assisted death. Unfortunately, he was not well enough to be able to go and had left it too late. Nikki said if Alan could have avoided the last four painful months he experienced, he most definitely would have chosen to.
	Sophie Korevaar	Sophie is 40 years old and has Multiple Sclerosis and Crohn’s disease. She wants to have an assisted death to avoid unnecessary pain should her condition become unbearable. Sophie is starting a Dignitas fund as she is so scared of what the future holds.
	Sue Lawford	Sue Lawford was arrested at 5.30 am, put in a cell and held for 19 hours, and then subjected to a six-month police investigation, for escorting Sharon Johnston to receive an assisted death in Switzerland.
	Vivien Mainwaring	Vivien suffers from Chronic Obstructive Pulmonary Disease (COPD), a lung disease that makes it difficult to breathe, as well as an incurable Leukaemia. She is now on a pathway to a Motor Neurone Disease diagnosis. She watched her parents die horrible, painful deaths and doesn’t want the same. She now struggles with her speech and wants the choice of an assisted death when her suffering becomes too much.
	Lauren, Beth and Jane Nicklinson	Lauren, Beth and Jane Nicklinson are the family of Tony Nicklinson, a man with Locked-in syndrome who took his case to the high court for the right to die. Tony lost his case and died after refusing food and treatment.
	Clare Powell	Clare’s parents both died horrendous deaths while suffering from dementia. Before his diagnosis, her dad said, “If I ever get like ‘that’ I’ve got chemicals, and I’ll be off.” Instead, he was “kept alive against his will” and died in a nursing home in 2023.
	Craig Scott	Craig’s father, Ivan died from end-stage heart failure in 2017. He wanted an assisted death but was refused help in the UK. He died slowly and in pain. One of Ivan’s sons had to leave the room because of his dad’s screams. Palliative care was not enough.
	George Smith	George’s mother, Maureen, took her own life because she found her life intolerable due to the pain caused by Trigeminal Neuralgia and Multiple Sclerosis. She was robbed of dignity and compassion as she died alone.
	Dave Sowry	Dave’s wife, Christy, suffered from Multiple Sclerosis and made the decision to travel to Switzerland for an assisted death in 2022. Dave reported her death after he returned to the UK where he was investigated for several months before the case was closed.
	Laura Tomlinson	Laura’s mother, Kay, died in Jan 2024 after a long battle with Parkinson’s and other health issues. Her mother took ten days to die after she stopped eating and drinking. She died a skeleton covered in bed sores. In the final weeks, she could not sit in her beloved garden or eat or drink.
	Penny Truscott	Penny’s mother, Joyce Wilton, 99, died at a care home after begging staff to “do something so she wouldn’t wake up in the morning”. The Second World War voluntary military nurse stopped taking her heart medication last summer to try to shorten her suffering. It took her 18 days to starve herself to death
	Kate and Sarah Tuckley	Sarah (wife) and Kate (sister) travelled with Dan to Switzerland in 2022 after a shock cancer diagnosis. The family were questioned by police on their return. Police have now closed the case.
	Clare Turner	In 2021, Clare was diagnosed with stage 4 cancer. A single mother with two daughters in higher education, Clare wants to be around for her children and leave them money when she dies. She cannot, therefore, afford an assisted death in Switzerland and instead has the mental anguish of what her death will be like.
	Jane Vervoots	Jane’s husband Dirk died at home in 2023. He had Huntingdon’s disease and had made three suicide attempts before his death because he was ready for the suffering to end. Jane was treated like a criminal in the months after his death.
	Tim Wardle	Tim is in his 80s and has terminal kidney cancer. He watched both his parents and all his siblings suffer painful deaths (bar one sister), and he doesn’t want the same death as his family experienced.
	Gemma Williams	Gemma suffers from Multiple Sclerosis. Her grandparents and father-in-law had terrible, drawn-out deaths and would have preferred an assisted death. Gemma wants to ensure a law protects her in the future.

Private Member’s Bill on Assisted Dying: What You Need to Know

Recently, Kim Leadbeater MP announced that she will be introducing a Private Member’s Bill on assisted dying in the House of Commons. This is an important moment for people across the UK, particularly those suffering from incurable conditions, as it opens up the possibility of a new law allowing people more choice and control over how they end their lives.

But what exactly does this mean, and what happens next?

What is a Private Member’s Bill?

A Private Member’s Bill is a proposal for a new law brought forward by an individual Member of Parliament (MP), rather than the government. While most laws are proposed by the government, MPs who are drawn in a special ballot can introduce their own bills. They literally pick numbers out of a glass ball, you can watch the ballot here.

Kim Leadbeater MP came first in this year’s ballot. Coming first is important, it means that an MP is given time in the parliamentary calendar to change the law – the higher up on the list, the more time and the more chance of success.

The big announcement that came yesterday is that Kim Leadbeater chose to propose a bill on assisted dying. But the law hasn’t changed yet, and officially, the process hasn’t even started.

What is Assisted Dying?

Assisted dying means allowing a person who is suffering unbearably from an incurable illness to choose to end their life, with help from a doctor. Currently, assisted dying is illegal in England and Wales, meaning people who want the option to die on their own terms must contemplate attempting risky means or making a costly journey to Switzerland, often alone.

Many people with conditions like Multiple Sclerosis, Huntington’s Disease, or Locked-in Syndrome experience immense suffering for years. While previous attempts to change the law have focused on those with only six months or less to live, this new Bill could be a chance to help more people, including those suffering with incurable but non-terminal conditions.

Why is this Important?

This Bill could be the most significant chance in a decade to change the law on assisted dying in England and Wales. The Prime Minister has already promised a fair debate and a clear vote on the issue, so there is hope that progress can be made.

However, one concern is that any new law might only apply to people who are already terminally ill, possibly limited to those with six months or fewer to live. My Death, My Decision believes that this would exclude many people who are suffering severely from non-terminal conditions. We want to make sure that everyone who experiences intolerable suffering, regardless of how close they might be to the end of life, has the right to choose when and how they die.

What Happens Next?

There’s been a lot of confusion about this, but in brief – the first step hasn’t happened yet.

On 16th October, the short title and long title of the Bill will be read out in Parliament. There won’t be a debate on that day – literally, just the title will be read.

Now if Kim decides to choose a short title and long title that includes the words “terminally ill” – that will make it really hard, maybe impossible, to include people who aren’t dying, but are suffering unbearably, in the Bill. Assisted dying is a complex issue, and we believe it deserves a broad debate, looking at systems that exist in many countries.

After this, the next steps will involve debates in Parliament where MPs will discuss the details of the Bill. If enough MPs support it, the Bill will move through several stages, including detailed examination and possible changes, before it can become law. 

We don’t know the dates of these stages yet – but because Kim Leadbeater came first, it’s likely the first debate will come before the end of the year.

My Death, My Decision will continue to push for an assisted dying law that gives people the right to die with dignity, at a time of their choosing, and with proper safeguards in place. We encourage anyone who cares about this issue to contact their MP and make their voice heard.

This is a moment for compassion, choice, and dignity. Let’s hope Parliament seizes this opportunity to bring real change.

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

“The introduction of an assisted dying Bill in the House of Commons is a significant and long-awaited step, made even more promising by the Prime Minister’s firm commitment to ensure a full, open debate and decisive vote. The nation stands on the brink of a profound and compassionate shift in how we provide dignity of choice for people who are intolerably suffering.

However, proposals presented to Parliament previously have limited the choice of help to die to those who are terminally ill, with fewer than six months to live. A Bill drawn on that basis would not only constrain proper debate from the outset, but any law would then exclude help to those who are suffering unbearably from incurable conditions like Multiple Sclerosis and Huntington’s Disease, among others. At My Death, My Decision we therefore urge politicians to ensure that people in those circumstances be considered too, so that they have the right to receive help to end their suffering at a time of their choosing.”

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.

Kim Leadbeater MP, who came first in the Private Member’s Bill ballot, has announced she will present a Bill on assisted dying. My Death, My Decision welcomes this news and urges Kim Leadbeater MP to listen to people who are intolerably suffering from incurable conditions, such as people with Multiple Sclerosis, Locked-in Syndrome or Huntington’s. 

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

“The introduction of an assisted dying Bill in the House of Commons is a significant and long-awaited step, made even more promising by the Prime Minister’s firm commitment to ensure a full, open debate and decisive vote. The nation stands on the brink of a profound and compassionate shift in how we provide the dignity of choice for people who are intolerably suffering.

However, proposals presented to Parliament previously have limited the choice of help to die to those who are terminally ill, with fewer than six months to live. A Bill drawn on that basis will not only constrain proper debate from the outset, but any law would then exclude help to those who are suffering unbearably from incurable conditions like Multiple Sclerosis and Huntington’s, among others. At My Death, My Decision we therefore urge politicians to ensure that people in those circumstances be considered too, so that they have the right to receive help to end their suffering at a time of their choosing.”

Coming first in the Private Member’s Bill ballot greatly increases the chances of it making progress. Combined with a pledge from the prime minister to have a meaningful vote on this subject, means that this will be the most important opportunity to change the law in a decade.

However, previous Bills and attempts to change the law in England and Wales to date have been limited to people who have six months or fewer left to live. Such a narrow law would not have helped over half of the British people who have travelled to Switzerland for an assisted death.

Many conditions such as multiple sclerosis, Parkinson’s and motor neurone disease can make life intolerable for the sufferer well before they can be described as terminal, or the diagnosis of terminal status may come too late, when the patient has lost mental capacity.

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.

On Wednesday 23rd October the Senedd (the Welsh parliament) will debate and vote on a motion to support assisted dying. Submitted by Julie Morgan MS, the motion calls for “adults of sound mind who are intolerably suffering from an incurable, physical condition and have a clear and settled wish to die should have the option of an assisted death, subject to robust safeguards.” My Death, My Decision welcomes this debate and is providing Julie with support to bring about a vote by the Senedd in favour of compassion and dignity.

The motion had three co-submitters from Labour, Conservatives and Plaid Cymru and an additional five supporters. The Senedd does not have the power to change the law on assisted dying, as it is currently a matter governed by criminal law which is not devolved. This vote would therefore only be an ‘in principle’ vote. Nevertheless, support for assisted dying in the Senedd would shine the light on Westminster to enact a change in the law across the UK.

The motion notes that “if assisted dying were to be legalised, and given its responsibility for health and social care, the Welsh Government would require an in-depth understanding of any proposals.” 

Last year, My Death, My Decision, held an event in the Senedd hosted by James Evans MS and Jayne Bryant MS, where we shared personal stories and expertise on why the law needs to be changed. In June, Mark Drakeford the former first minister supported calls for a change in the law. 

The Senedd debated assisted dying a decade ago. They voted against the principles of assisted dying in 2014.

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

“This is an historic moment for My Death, My Decision and for the campaign for assisted dying. We’ve been encouraging a debate in the Senedd for some years, because we believe Welsh people should have their say on this important issue. It’s been a decade since it was last debated, but this time we believe the vote will be very different.

This debate will be about a law for people who are intolerably suffering from incurable conditions, not one limited to people who are terminally ill. It’s important that people who are suffering from conditions like multiple sclerosis, Parkinson’s and locked-in syndrome are not ignored. People who are suffering unbearably deserve choice, compassion and dignity.”

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 poll commissioned by My Death, My Decision Northern Ireland has revealed that 67% of people support assisted dying to some degree. With 40% of people saying they definitely support introducing an assisted dying law in Northern Ireland. My Death, My Decision welcomes this public support and calls on Stormont to set up a citizens assembly, so that the people of Northern Ireland can have their voices heard.

3,443 people responded to the question posed by LucidTalk, which said: “Would you support the legalisation of assisted dying in Northern Ireland for adults of sound mind who are terminally ill or suffering intolerably from an incurable condition? The law would include rigorous safeguards.” 

• Definitely: 40%
• Probably: 27%
• Probably not: 9%
• Definitely not: 19%
• Don’t know not sure: 5%

Assisting anyone to die is illegal under Section 13 of the Criminal Justice Act (Northern Ireland) 1966. 

If anyone would like to join My Death, My Decision Northern Ireland, please contact mdmd.nireland@gmail.com or join their Facebook group.

The special Oireachtas committee in the Republic of Ireland recommended back in March that legislation should be introduced to allow for assisted dying. An important consequence of a law in the Republic is that Irish citizens (or ordinary residents for twelve months) would be eligible. This would allow Northern Irish applicants to be able to access an assisted death in the Republic under the Irish Nationality and Citizenship Act of 1956 and the Good Friday Agreement.

Gavin Walker, Chair of My Death, My Decision, Northern Ireland said:

“This is an overwhelming endorsement of our position that the people of Northern Ireland want their legislators to positively facilitate a debate on the issue of assisted dying. It is under consideration in every other jurisdiction across these islands, and it is time to begin the conversation here.

We understand this is a very sensitive issue for legislators, and to help frame the debate we are calling for the immediate establishment of a Citizens’ Assembly as outlined in the New Decade, New Approach Deal. This would facilitate a wide-ranging, evidence-based discussion on the issue across our community. We need a Northern Ireland-led approach to assisted dying legislation to ensure it will include the criteria and safeguards that best reflect what our society wants.”

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

“This poll has revealed that the people of Northern Ireland are keen to support an assisted dying law, giving suffering people the choice of how and when their lives might end with dignity.

In order to know what that law would look like in relation to safeguards and other key aspects, a valuable next step would be for Stormont to set up a Citizens’ Assembly. These have been used very effectively in places like France and Jersey as they allow citizens to have their say in much more depth.”

Notes:

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

Polling was carried out by Belfast based polling and market research company LucidTalk. The project was carried out online for a period of 4 days from 16th to 19th August 2024. 3,443 full responses were received. A data auditing process was then carried out to ensure all completed poll-surveys were genuine ‘one-person, one-vote’ responses, and this resulted in 1,051 responses being considered and verified as the base data-set (weighted and unweighted).

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 pioneering Citizens’ Jury has strongly recommended the legalisation of assisted dying in England, with 20 out of 28 members supporting a change in the law. The jury, which included a cross-section of the English population, spent eight weeks engaging in deliberations on the topic, hearing from a wide range of experts.

The jury concluded that individuals with terminal illnesses who have the capacity to make their own decisions should be allowed both the option of an assisted death. They back the self-administration of life-ending medication and the administration by a healthcare professional. This has long been the policy of My Death, My Decision, but legislation in the UK to date has only proposed self-administration.

Of the 28 Jury members who were able to participate in the final vote, 20 either strongly agreed or tended to agree the law should change to permit assisted dying in England. This compares to 7 who said they either strongly disagreed or tended to disagree with a law change. One person was undecided.

The most important reasons given by members of the Jury in favour of permitting assisted dying that gained the greatest number of votes were:

• To stop pain.
• Having the option to end your own life.
• Knowledge that you can die with dignity if the time comes.

Members were asked: “If the law is changed to permit assisted dying in England, what should it include? What should it exclude?”. Nine voted that “Intolerable suffering (physical) should be considered within the eligibility criteria.” with no one voting to exclude it.

The Jury’s recommendation aligns with the public’s longstanding support for assisted dying, as reflected in numerous surveys over the years.

In addition to supporting legalisation, the jury also called for the decriminalisation of assisting someone to travel abroad for assisted dying and urged for increased funding for NHS palliative care.

Citizens juries have come to similar conclusions in Jersey and France.

Graham Winyard, Director of My Death, My Decision, said:

“The overwhelming consensus from decades of surveys is that most people in the UK support legalising assisted dying. Critics often argue that the public doesn’t fully grasp the complexities, but this Citizens’ Jury has thoroughly examined the issue and reached the same conclusion. The message is unmistakable—there is strong public support for changing the law.

It’s time for politicians to take action. The public clearly wants legislation that offers choice, compassion, and dignity. We hope one of the MPs successful in the Private Members Bill ballot chooses to put forward a compassionate assisted dying bill. Those facing incurable suffering deserve the right to choose a peaceful and dignified death. It’s time to legalise assisted dying.”

Notes:

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

To request an embargoed copy of the report contact the NCOB press office on press@nuffieldbioethics.org

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 study published in the Journal of Palliative Medicine has confirmed that legalising assisted dying does not diminish patient trust in the medical profession. This is valuable research for politicians in the UK to look to in deciding whether to legalise assisted dying, because it nullifies claims to the contrary made by opponents.

The research, which focused on a diverse group of hospital patients in Washington, D.C., provides crucial evidence that assisted dying laws support, rather than undermine, the trusted relationship between doctors and their patients.

Patients were surveyed about their trust in doctors; some participants were informed that assisted dying was legal in their area, while others were not. The results were clear: patient trust remained strong regardless of whether they were aware of the legal status of assisted dying.

Key Findings:

• Stable Trust: The study found that patients who were informed about the legality of assisted dying reported trust levels in their doctors that were just as high as those who were not informed. Trust in medical professionals remained robust across all groups.
• Increased Support for Assisted Dying: Awareness of assisted dying’s legal status led to a significant increase in patient support for the practice, indicating that better understanding of the law can lead to greater acceptance.
• Reassurance for Marginalised Groups: Importantly, the study found that trust levels remained equally high among both Black and disabled patients, groups that have historically experienced lower trust in healthcare. This suggests that assisted dying laws can be implemented without exacerbating existing disparities in healthcare trust.

This study directly addresses concerns that assisted dying might weaken the ethical foundations of medicine. Instead, it shows that such laws can coexist with strong patient trust, even among those from historically disadvantaged backgrounds.

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

“The results of this study are clear: patients trust their doctors to act in their best interests, and a compassionate assisted dying law won’t change that. This study is a significant affirmation that legalising assisted dying does not undermine trust, but rather reinforces the importance of patient autonomy and informed choice.

“In the UK, adults who are suffering from a condition with no hope of a cure face limited and inhumane options. It’s about time that we followed over 30 jurisdictions around the world in legalising the choice of a dignified and compassionate assisted death.”

Notes

Media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

Read the study here.

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.

Lord Falconer of Thoroton’s “Assisted Dying for Terminally Ill Adults Bill [HL] “ has been published in the House of Lords, the text of the Bill is available here. 

The second reading of the Bill, which is when members of the House of Lords will debate and vote on it, will take place on Friday 15 November.

My Death, My Decision welcomes the Bill for initiating a much-needed debate that has overwhelming public support. Nevertheless, the law if passed will extend only to terminally ill people and does not extend to those with incurable conditions like multiple sclerosis or locked-in syndrome – the latter being a key focus of our campaign. 

Here’s our analysis of the Bill with our suggestions as to how it could be made more compassionate.

Terminal Illness

In order to qualify as ‘terminally ill’ under the Bill, a person must have a prognosis of six months or fewer to live.

Such a narrow constraint is all the more surprising, given that proposed laws in other jurisdictions around these islands are broader: Scotland has no time limit; Jersey specifies six months generally but twelve for neurodegenerative conditions; and the Isle of Man specifies a maximum twelve months prognosis for all applicants. 

But restricting the Bill to just the terminally ill is problematic in itself as it discriminates against individuals who suffer from incurable conditions causing intolerable suffering but which are not terminal illnesses, as mentioned below. A more compassionate and inclusive law would embrace people who are so suffering – and for whom we campaign. 

Conditions like paralysis from traumatic incidents (e.g. car accidents), locked-in syndrome, ataxia, severe spinal stenosis, and other spinal issues are not classified as terminal by medical professionals. Additionally, diseases such as multiple sclerosis, Parkinson’s, Huntington’s, progressive supranuclear palsy, and motor neurone disease may not be deemed terminal, or the diagnosis of terminal status may come too late, when the patient is already enduring significant pain or has lost mental capacity.

The requirement of a high court judge

The requirement for a High Court judge to approve assisted dying requests is an excessive and burdensome barrier and in fact came about in an earlier Bill due to a legal misunderstanding (see Professor Penney Lewis’s essay which explains it).

Not one of the 31 jurisdictions around the world with legal assisted dying requires this. This may cause significant delays, cost and bureaucracy while adding undue stress to terminally ill patients seeking a dignified end to their suffering. Why?

The patient must take the life-ending medication themselves.

The Bill says the patient must take the life-ending drugs themselves, they can’t have a doctor administer them. This places the burden on the dying person. As can be seen from other jurisdictions, allowing doctors to administer the medication ensures a more humane and controlled process, safeguarding the dignity and well-being of the person during their final moments. This whole debate is about individual choice, so why not give them the choice?

In New Zealand, 92% of patients opted for an injection administered by a healthcare professional. In 2022 across Canada there were 13,241 assisted deaths, but fewer than seven deaths were self-administered. 

The Bill has welcome provisions against coercion

The Bill’s strict rules against coercion are crucial for protecting vulnerable people from being pressured into their end-of-life choices. The harsh penalties for anyone who tries to force or manipulate someone into seeking an assisted death show how serious the Bill is about keeping these decisions voluntary and well-thought-out. This helps make sure that assisted dying is a choice made freely by the patient.

This Bill ensures the government keeps a close eye on assisted dying.

The Bill’s plan for a mandatory review after five years is a way to see how well the law is working. This review gives a chance to address any issues, listen to feedback from those involved, and make changes to better help terminally ill patients. It shows a commitment to constantly improving and being responsive to how the law is actually used in real life.

The law should however also include provision for a review as to its scope, so that consideration is given as to whether the law should be extended to enable the incurably suffering to ask for help.

What happens next?

Keir Starmer recently doubled down on his vow to give the bill enough parliamentary time to pass, but it’s unclear whether this will apply to a Bill in the House of Lords. Laws that are started by MPs from the elected House have a much better chance of success.

Lord Falconer made a previous attempt to change the law in 2014 but it failed due to the impending General Election in 2015, despite passing the Second Reading in the House of Lords. This Bill will likely need government help if it is not to run out of time.

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

“We commend Lord Falconer for his valiant efforts to move the assisted dying debate forward in the House of Lords. Everyone close to this issue is united in wanting change – we can all surely agree that the current law is inhumane.

Nevertheless, it’s regrettable that this Bill will restrict assisted dying to people who are terminally ill, with a narrow criterion of six months or fewer to live. Politicians must have the opportunity to debate a bill that allows the choice to adults who are suffering unbearably but not necessarily terminally ill – people with conditions like Parkinson’s and Multiple Sclerosis. People who are suffering like that deserve choice, just as much as people who are terminally ill.”

Notes

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.

My Death, My Decision is proud to launch a Northern Ireland section today. Led by Gavin Walker, this regional group will begin to lay the foundations for a compassionate assisted dying law in Northern Ireland.

Assisting anyone to die is illegal under Section 13 of the Criminal Justice Act (Northern Ireland) 1966. 

If anyone would like to join My Death, My Decision Northern Ireland, please contact mdmd.nireland@gmail.com or join their Facebook group.

The special Oireachtas committee in the Republic of Ireland recommended back in March that legislation should be introduced to allow for assisted dying. An important consequence of a law in the Republic is that Irish citizens (or ordinary residents for twelve months) would be eligible. This would allow Northern Irish applicants to be able to access an assisted death in the Republic under the Irish Nationality and Citizenship Act of 1956 and the Good Friday Agreement.

Gavin Walker, Chair of My Death, My Decision Northern Ireland

Gavin Walker, Chair of My Death, My Decision Northern Ireland, said:

“The recommendations of the Oireachtas Committee – alongside progress on Assisted Dying legislation in Scotland, Jersey and the Isle of Man – means Northern Ireland must now engage in a debate to determine the best way forward on this issue. My Death, My Decision Northern Ireland will work to ensure that when legislation is brought forward it reflects the wishes of the people of Northern Ireland and is not a knee-jerk reaction to legal changes in neighbouring jurisdictions.”

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

“We are delighted to launch this new regional branch of our grassroots campaign group. The people of Northern Ireland shouldn’t have Westminster or the Oireachtas choose what options they have at the end of their lives, it’s right that they decide on a compassionate law for themselves. No one should be forced to suffer against their will. ”

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.