What’s this about?

On 2 May 2025, the Government published four key documents relating to the Terminally Ill Adults (End of Life) Bill: an Impact Assessment, an Equality Impact Assessment, a Human Rights Memorandum, and a Delegated Powers Memorandum. These reports assess how the Bill would work in practice and conclude it is ethically justified, financially viable, and safely designed.

Here’s everything you need to know about these assessments. 

What do the Impact Assessments focus on?

The extensive impact assessments focus a lot on analysis of the financial implications of the Bill. However, the Government recognises that doesn’t truly reflect the impacts the Bill will have, saying: ‘adding only the quantified elements of [the impact assessment] together would not give a comprehensive assessment on the net impact of the Bill because significant unquantified impacts would not be accounted for in that net figure’.

In other words, it does not take into account the human costs of doing nothing. We have produced a separate report on this, which highlights that:

• Thousands of terminally ill adults would continue to suffer every year if the Bill is not passed, with many forced to take their own lives, even with the best possible standard of palliative care
• Legalising assisted dying is linked to an increase in the provision of palliative care, alongside bringing peace of mind to individuals who choose to avail of an assisted death
• The current situation exports compassion abroad, creating inequalities based on wealth, resources, and family support
• A broken system subjects families to harsh, intrusive investigations for acts of compassion, which are very rarely prosecutable. 

Safeguards and Protections

The Bill includes strong protections to ensure people are eligible, informed, and choosing freely.

Key features:

• Two independent doctors must agree the applicant qualifies.
  
• A panel (doctor, psychiatrist, social worker) reviews each case.
  
• Mandatory reflection periods to allow reconsideration.
  
• Disability Advisory Board and advocates involved.
  
• Mandatory training on recognising coercion, and supporting disabled and autistic people.

As the Impact Assessment confirms:

‘The Bill goes further than some other jurisdictions in terms of oversight, regulation, protections and safeguards.’

Professional Autonomy

The Impact Assessment confirms again that healthcare professionals can opt out if they object – no one is forced to participate.

Fair Access for All

The assessments recognise concerns about how the Bill might impact disabled people. To address this, the Bill includes specific safeguards to protect against pressure or coercion and to ensure decisions are truly voluntary.

These measures are designed to protect, not exclude, disabled people;ensuring safety, autonomy, and equal dignity for all who are eligible.

The Government’s analysis also confirms that the new law will also offer compassion to people who cannot afford to travel abroad for assisted dying.

Financial Considerations

Although the Bill is driven by compassion, not cost-saving, the Government’s assessments show it is also affordable:

• Healthcare savings: Less end-of-life care for people who choose an assisted death could save the NHS up to £59.6m per year by year 10.
  
• Implementation costs (oversight panels, training, admin): estimated to be £13.5–25.1m per year by year 10 – which would be covered by healthcare savings.
  
• Training: To ensure safe, informed care – up to £11.4 million in year 1 for initial training, then up to £9.7 million annually by year 10.
  
• Benefits and pensions: Fewer pension and benefits payments needed for those choosing an assisted death – up to £27.7 million annually saved by year 10.
  
• Court and admin costs: Minimal and manageable within current capacity.
  

Overall: The impact assessments show this is a compassionate policy that doesn’t strain public resources.

International Context

The Terminally Ill Adults Bill’s approach reflects best practices from countries like:

• Australia
  
• New Zealand
  
• Oregon (USA)
  

These systems show that assisted dying can be implemented safely and fairly.

Human Rights Compliance

The Government has confirmed the Bill is compatible with human rights law, aligning with the . It upholds:

• The right to life
  
• The right to dignity and autonomy
  
• Protection from suffering

In Summary

According to the Government’s own analysis, the Bill is:

• Morally justified
  
• Affordable
  
• Safe
  
• Practically deliverable

A compassionate law that gives terminally ill adults the dignity of choice.

The Terminally Ill Adults (End of Life) Bill is a landmark piece of legislation and an opportunity to extend freedom of choice and dignity at the end of life for thousands of Britons. 

Polling consistently shows that 75% of people support assisted dying in the UK and there’s a majority of support in every single constituency bar one. 

The Impact Assessment is part and parcel of the scrutiny process that good legislation requires – adding another layer to a Bill that has already seen months of expert testimonial, thorough, and over 90 hours of thoughtful debate by colleagues across the House at Committee Stage.

Report Stage is due to take place on Friday 16 May although could run to Friday 13 June; and Third Reading is likely scheduled for Friday 13 June, although could be Friday 20 June if Report Stage overruns.

UK-based membership of the Swiss assisted dying centre Dignitas has grown by 50% in the last five years, new figures show. In 2024, there were 2,231 members of non-profit Dignitas (full name DIGNITAS – To live with dignity, die with dignity) compared to 1,430 in 2019. Membership – a prerequisite to having an assisted death at Dignitas – has seen a sharp rise, with 331 new members in 2024, and 372 the year prior, and has doubled since 2016. Humanists UK and My Death, My Decision – both members of the UK Assisted Dying Coalition – have called on MPs to stop exporting compassion and allow for legal, safe, and compassionate assisted deaths in the UK as soon as is safely possible.

Other figures show 37 UK deaths at the Swiss centre in 2024, down slightly from 40 in 2023. 608 UK residents in total had died at the Swiss assisted dying centre by the end of the year, one of three clinics in Switzerland open to UK citizens. Last year the Assisted Dying Coalition produced a report detailing where in the UK residents have come from before having an assisted death abroad.

Dave Sowry accompanied his wife Christy Barry to have an assisted death at Dignitas in September 2022. Christy was diagnosed with multiple sclerosis and had a clear and settled wish to die. Dave said:

‘Going to Dignitas wasn’t an easy option for my wife. Sadly, it was the only option. The additional stress and worry caused by the current legal situation was traumatising for her. Christy was terrified right up until the end that she would have her decision thwarted, by the UK laws and she felt unable to tell anyone other than a few people really close to her. 

‘It’s cruel to impose this additional burden on anyone at the most difficult time of their life. We must change the law.’

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

‘Every year, more people are joining Dignitas because our assisted dying law needs to change. These aren’t just numbers, they’re real people, many of them terminally ill, who want control over how and when they die. The UK’s current ban on assisted dying is cruel, outdated, and unsustainable. It’s time Parliament listened to the overwhelming public support for change and gave people the right to die with dignity, here at home.’

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.

Tom Gordon MP has put forward an amendment to the Terminally Ill Adults Bill to reduce the deadline for the Government to introduce assisted dying from four years to three. My Death, My Decision has welcomed the amendment.

The first draft of the Bill set the maximum time the Government could take to implement assisted dying at two years, but during the committee stage this deadline was increased to four years. My Death, My Decision was the only organisation to campaign against the delay at Committee Stage.

No other jurisdiction in the world has taken even close to four years to implement an assisted dying bill.

If selected by the speaker, the amendment would be debated and voted on at Report Stage on 25 April.

Tom Gordon MP, who tabled the amendment, said:

“A three-year deadline for implementation strikes a fair balance between the Government, which has pushed for delays, and Parliament, which voted for a compassionate change to assisted dying.

As the only MP on the Bill committee to oppose extending the deadline to four years, I believe terminally ill people must have a voice in this debate. Any delay risks denying thousands the choice of a dignified death, forcing them to suffer unnecessarily.”

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

“It’s unreasonable that the Government would need four years to set up an assisted dying service. Politicians keep forgetting we are not pioneers in this space. Assisted dying has been legal in many countries for years. We don’t need to develop training and guidance from scratch when it exists extensively in Australia, New Zealand, and many other jurisdictions.

‘Three years is a much better and safer backstop than four and we would support this amendment, however we maintain that the Government should endeavour to implement assisted dying at the earliest opportunity.”

Clare Turner, a mother of two with stage four breast cancer, said:

“This is outrageous for terminally ill people like me. Every delay means more suffering, more people forced to endure unbearable pain against their will. The government needs to stop dragging its feet and act now because the vast majority of the public supports assisted dying. People across the country want this change—so why push it further down the road? We deserve dignity, not delays!”

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 Terminally Ill (Adults) Bill committee has spent two months debating over 500 amendments. Several changes have been made to the Bill, so here’s our guide to what has changed.

An expert panel with judicial oversight replaces the High Court judge approval

The original draft Bill required every single assisted death to be approved by a High Court judge. This received considerable criticism for being costly and time-consuming.  Instead, it has been replaced with a Voluntary Assisted Dying Commission and expert panels. 

A High Court judge or senior former judge will lead the Voluntary Assisted Dying Commission. It will oversee all cases and report each year on the number of applications and how many were approved or rejected.

It will also appoint expert panels, with each applicant for assisted dying going to a panel for a decision after sign-off by two doctors. The panel will be chaired by a senior lawyer or retired judge and also include a psychiatrist and a social worker.

Spain is the only country in the world that requires a panel to assess every single assisted death. While none requires the High Court, most jurisdictions trust two independent doctors to assess the patient, with no third tier of oversight.

The implementation period has been extended from two to four years

Amendment 548, which passed with 23 votes in favour and only one vote against by Tom Gordon MP, changed the maximum time the government could take to implement assisted dying from two years to four years. Assisted dying could be implemented earlier, but this change sets the maximum amount of time before the Act comes into effect.

Assisted dying must be implemented as soon as safe and practicable.

Watch @tomgordonLD‘s speech on why assisted dying should not be delayed. pic.twitter.com/Ox2EUMZYdD

— MyDeath, MyDecision (@MDMDmydecision) March 25, 2025

We were furious at this change. The amendment was only published Friday morning before it was debated Tuesday evening. We were the only organisation to immediately speak out about it. 

We are going to campaign against it at every possible stage, and we will hold the Government’s feet to the fire to ensure that assisted dying is implemented sooner.

Eligibility remains unchanged, despite efforts

MPs on the committee did debate an amendment that would have allowed those with neurodegenerative illnesses to access assisted dying when they have twelve months or fewer to live, rather than six. Following the debate, the amendment was withdrawn due to lack of support.

The amendment would have aligned England and Wales’s assisted dying law with that found in most of Australia and would be particularly important for people with Motor Neurone Disease (MND), Huntington’s, Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and Corticobasal Degeneration (CBD), as well as some people with Parkinson’s. Under the Bill, some people with these conditions who meet the eligibility criteria of terminal illness would be excluded as the six-month limit is frequently past the point at which they need an assisted death – and sometimes it is past the point they can even be granted one.

Changes to training

Amendments from people who voted against the Bill have been accepted too. This includes one from Jess Asato, who voted no at the second reading, which added an amendment requiring all the doctors as well as members of the panel to have domestic abuse training. This was accepted unanimously.

Independent advocates for people who need support

A new clause by Dr Marie Tidball MP now provides assistance to people with learning disabilities, mental disorders, autism, or anyone who has substantial difficulty understanding the process. They can have an independent advocate to speak up on their behalf and the Government can issue codes of practice specifically for these groups of people.

Harsher sentences

The draft Bill created a new offence for coercing someone towards an assisted death, with a sentence of up to 14 years. This was increased to potentially life in prison, equivalent to murder.

Wrecking amendments defeated

Many amendments would have made the process so difficult to navigate or elongated the process so much that it would have been impossible for many people to use it. This is a serious issue, as we’ve seen in other jurisdictions where a percentage of people who want an assisted death and start the process die before they can be approved. Defeated amendments include:

• Amendment 282 would have meant that only those with ‘reasonable certainty’ of dying within one month could apply for assisted dying. With the timelines already in the Bill this would have made the system entirely unworkable. 
• Multiple amendments gagging doctors from talking about assisted dying unless the patient raises it first. This would have stifled open and honest conversations about end-of-life care.
• Amendment 108 would have required the doctor who has an initial discussion with a person about assisted dying to offer to refer them to a specialist in palliative, hospice or other care, even if that was against their wishes. 
• Amendments 301 and 317 would have doubled the reflection periods – this would cause too many people to die while waiting for approval. 

Keeping well-defined definitions 

There were extensive debates on whether to change established legal definitions around ‘pressure’, ‘coercion’ and ‘capacity’. These definitions were intensively debated throughout the whole committee however Ministers, as well as expert evidence maintain that using standard, already understood and working definitions and acts would be the safest way forward, preventing legal issues and uncertainty for both patients and doctors.

Conclusion 

The committee’s deliberations have been thorough, thoughtful and respectful. The vast majority of the changes are positive, but we worry deeply about the delay to implementation and will continue to campaign against that.

England and Wales are not assisted dying pioneers. We can and must ensure that evidence from countries like Australia, Spain and New Zealand, where assisted dying is working well, is front and centre.

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 Assisted Dying Bill on the Isle of Man has passed!

The upper and lower chamber of the Isle of Man’s parliament agreeing on changes to the Bill. My Death, My Decision, whose local Isle of Man branch has been campaigning strongly for a law, welcomes this compassionate move.

Today, Members of the Legislative Council, the upper chamber, discussed amendments which had been rejected by House of Keys, the Isle of Man’s lower house including an amendment to cut the residency criteria from five years to 12 months before a patient can access the scheme.

The Bill will now go to Royal Assent and the Isle of Man will be the first part of the British Isles to legalise assisted dying, with the choice of assisted dying potentially available to terminally ill residents from 2027.

The Bill would give terminally ill Manx residents with fewer than twelve months to live the choice of receiving help to end their own life. The Bill proposed in Westminster is limited to people with six months’ life expectancy or less. 

My Death, My Decision board member, Trevor Moore, visited Tynwald in June 2023, to make the case for parliamentarians to vote for a compassionate assisted dying law that will help end unnecessary suffering for those who so choose.

Trevor Moore, Board Member of My Death, My Decision said:

“Members of Tywald are to be applauded for taking this historic step. They have engaged positively with the debate, with arguments put forward from all sides in good faith. We hope that Westminster will pay attention to this, and follow in their footsteps.

We would like to thank our passionate campaigners on the island, especially Vicky Christian who chairs our local group there. They have done extraordinary work to ensure that the voices of people who have been deeply affected by the current unjust assisted dying laws are heard.”

Vicky Christian, Chair of My Death, My Decision Isle of Man said:

“This is a historic day. This Bill will ensure people on the Isle of Man will finally have choice and dignity at the end of their lives. I am incredibly proud of our island for not only listening to its people but, more importantly, listening to those facing the end of life. In this debate, compassion and evidence have prevailed.

I want to thank the Members of Tynwald for their dedication to this cause. But above all, I want to thank the individuals who shared their personal stories and stood with us throughout this journey—this has truly been a campaign led by the 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.

The Terminally Ill Adults (End of Life) Bill Committee has voted to remove the required High Court approval for assisted deaths, which will be replaced with oversight from a panel of legal, medical, and social care experts. Under previous provisions, all assisted deaths had to be approved by a High Court judge. Amendments put forward by Kim Leadbeater MP, the sponsor of the Bill, will replace the role of the High Court in the Bill with a Voluntary Assisted Dying Commission and expert panels. Humanists UK and My Death, My Decision have welcomed the votes.

15 MPs on the committee voted in favour of removing Clause 12, 7 against. Clause 12 outlined the steps required for court approval of an assisted death. New clauses to set up the Voluntary Assisted Dying Commission and expert panels have been debated as part of this group; however, voting on them will happen at the end of the committee stage. Amendments NC14 to NC17, NS1 and NS2 outline the new process.

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

“Removing the High Court approval, to replace it with a dedicated Commission and expert panels, is a welcome step forward. We support the move towards a specialist panel that can provide expertise and fairness in assisted dying decisions. 

“Spain is the only country in the world that requires a panel to assess every single assisted death while none require the High Court. Most jurisdictions trust two independent doctors to assess the patient, with no third tier of oversight. We hope MPs on the committee remain dedicated to ensuring the process is safe, without being too complex or burdensome for those in need.”

Andrew Copson, Chief Executive of Humanists UK, said:

“Replacing the High Court judge with a multidisciplinary panel is a welcome improvement. It has the potential to make assisted dying decisions more efficient and accessible while strengthening already rigorous safeguards. However, it is crucial that this new process as implemented is practical and does not create unnecessary bureaucracy that could delay compassionate end-of-life choices.”

Tom Gordon, MP and committee member, said:

“T​oday’s vote is a step in the right direction​. Replacing the High Court with a multidisciplinary panel will ensure decisions are made with the right expertise, rather than adding unnecessary legal delays. We must ensure that our assisted dying process remains clear, accessible, and does not create obstacles for those already dying and facing immense suffering.”

Polling commissioned by Humanists UK shows that more than two-thirds (67 per cent) of the British public support the amendments to replace High Court approval with a panel of legal, medical, and social care professionals. The High Court requirement had been criticised as costly and time-consuming, while a specialist panel should provide faster and more practical decision-making to make end-of-life care more accessible while maintaining safeguards.

The role of the High Court in the Bill has been replaced with a Voluntary Assisted Dying Commission and expert panels.  The role of the High Court and its workability has been challenged on the basis that the Court doesn’t have the capacity and that it wouldn’t provide additional safety. The Voluntary Assisted Dying Commission will be led by a High Court judge or senior former judge. It will oversee all cases and report each year on the number of applications and how many were approved or rejected.

It will also appoint expert panels, with each applicant for assisted dying going to a panel for a decision after sign-off by two doctors. The panel will be chaired by a senior lawyer or retired judge and also feature a psychiatrist and a social worker.

Spain is the only country in the world that requires a panel to assess every single assisted death while none require the High Court. Jake Richards MP cited in the debate that 20% of people who apply for an assisted death in Spain die before they can finish the process. Most jurisdictions trust two independent doctors to assess the patient, with no third tier of oversight.

During her speech, Kim Leadbeater MP highlighted the uniqueness of this clause:

“I appreciate this is very unusual if we compare this Bill to the many other models of assisted dying around the world. Most jurisdictions have a process which involves two doctors as this Bill does, but there is no additional stage in those processes, and I know there are different views as to whether this third layer is necessary as many of the jurisdictions have processes which provide a very compassionate, patient-centered, and well safeguarded approach to assisted dying without it.

“Indeed, some of the most difficult emails I receive are from terminally ill people who are very concerned about the complexity of the process as laid out in the Bill, who feel that it is overcomplicated and too bureaucratic for people who are in their dying weeks and days to navigate, and I am very sensitive to this.

I’m also aware that the thorough process as set out in the Bill will take time, and there will be people who embark upon it who will die before they can complete it, as happens in other jurisdictions, which is of course extremely sad. But I also know that certainly in this country people feel strongly that oversight and scrutiny of what we might call the medical initial stages of the assisted dying process is important.”

Supporting the panels, Kit Malthouse, MP and committee member, said during the debate:

‘We need to take care to tread lightly on people’s final moments. We have to have at our at the heart of our thinking, the notion that we are filling these people’s final days and hours with possibly stress, with bureaucracy, with a sense of jeopardy. About whether they’re going to get permission for what they want. For what they’ve declared to two doctors, for the forms that they filled in, and at the back of their mind that they don’t have long left.

‘And so, while I understand the motivation of those who are trying to amend and restrict accessibility and elongate the time, I do ask them to to bear that in mind and help us to strike a balance. Between, yes, having a system that gets to the robust answer, but, as I say, treads as lightly as possible on the lives of remaining lives of these people are facing their end.’

“We must tread lightly on people’s final moments.” Powerful words from @kitmalthouse on why assisted dying must be accessible, compassionate & free from unnecessary stress. A choice, not an ordeal. Watch his speech 👇 #AssistedDying pic.twitter.com/Te61JYsf8A

— MyDeath, MyDecision (@MDMDmydecision) March 12, 2025

Notes:

For further comment or information, media should contact Humanists UK Assisted Dying Campaigner Nathan Stilwell at nathan@humanists.uk or phone 07456200033.

Humanists UK and My Death, My Decision have people and their loved ones who would be affected by this change available for the press.

If you have been affected by the current assisted dying legislation, and want to use your story to support a change in the law, please email campaigns@humanists.uk.

Amendments NC14 to NC17, NS1 and NS2 in detail:

• NC14 establishes the ‘Voluntary Assisted Dying Commissioner’ appointed by the Prime Minister. The appointee must be a current or former judge of the Supreme Court, Court of Appeal, or High Court, and will not become a civil servant upon appointment
• NC15 sets out how, after two doctors have approved an application for an assisted death, the Voluntary Assisted Dying Commissioner is to refer the case to a multidisciplinary panel, to be called an Assisted Dying Review Panel
• NC16 is called ‘Determination by panel of eligibility for assistance’. The panel must do this by determining that all the decision-making up to that point has been correct, including that all the eligibility criteria are met. The panel is required to question one of the two approving doctors and may question both. The panel may also question the patient themself, as well as others including other experts. Such questioning can be in-person or by video or audio link. If someone is deemed eligible, then a certificate to that effect will be issued
• NC17 is called ‘Reconsideration of panel decisions refusing certificate of eligibility’. It allows for an appeal by an unsuccessful applicant to the Commissioner, which happens without a hearing, and if the appeal is successful the case is remitted to a new Review Panel
• NS1 contains various consequential provisions related to the Commissioner role, including that there is also a Deputy Commissioner, and tenure is up to five years for both roles, although the Secretary of State may dismiss them. It provides for staffing and funding for the Commission
• NS2 outlines the make-up of the panel, consisting of a legal member, a psychiatrist, and a social worker. Again there is a five-year tenure. The legal member will be the chair and must be a current or former judge of the High Court, Court of Appeal, or Supreme Court, or be a KC. There is majority voting except to approve an assisted death, where it has to be unanimous.

Humanists defend the right of each individual to live by their own personal values, and the freedom to make decisions about their own life so long as this does not result in harm to others. Humanists do not share the attitudes to death and dying held by some religious believers, in particular that the manner and time of death are for a deity to decide, and that interference in the course of nature is unacceptable. We firmly uphold the right to life but we recognise that this right carries with it the right of each individual to make their own judgement about whether their life should be prolonged in the face of pointless suffering.

We recognise that any assisted dying law must contain strong safeguards and the international evidence from countries where assisted dying is legal shows that safeguards can be effective. We also believe that the choice of assisted dying should not be considered an alternative to palliative care, but should be offered together as in many other countries.

Humanists UK is the national charity working on behalf of non-religious people. Powered by over 130,000 members and supporters, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. We provide ceremonies, pastoral care, education, and support services benefitting over a million people every year and our campaigns advance humanist thinking on ethical issues, human rights, and equal treatment for all.

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.

Humanists UK and My Death, My Decision are both members of the Assisted Dying Coalition, along with Friends at the End, Humanist Society Scotland, and End of Life Choices Jersey.

MPs scrutinising the Terminally Ill Adults (End of Life Choices) Bill have debated an amendment that would have allowed those with neurodegenerative illnesses to access assisted dying when they have twelve months or fewer to live, rather than six. Following the debate, the amendment was withdrawn due to lack of support. Campaigners have expressed their disappointment at the outcome.

The amendment was proposed by MPs from the Labour Party, Conservatives, Liberal Democrats, and Green Party, and supported by Humanists UK and My Death, My Decision as well as the public. 

The amendment’s primary sponsor was Tom Gordon MP, who withdrew the amendment after the debate over fears that the amendment could negatively impact the chances of the Bill passing in later stages. 

Tom Gordon, MP for Harrogate & Knaresborough, who proposed the amendment said:

‘Extending the eligibility period to 12 months for those with neurodegenerative conditions remains a compassionate approach, however, I decided to withdraw the amendment. My priority is ensuring that we make progress on assisted dying legislation, and I do not want to risk delaying or jeopardising the Bill’s success by pushing for changes that might divide support at this crucial stage. I remain committed to advocating for those with neurodegenerative conditions and will continue working towards a law that is as fair and inclusive as possible.’

Fellow committee member Rachel Hopkins MP spoke in support of it. She mentioned:

‘Diane Pretty was from Luton… 25 years ago she was diagnosed with motor neurone disease and tried to change the law then, so she could access assisted dying because of the pain and suffering she endured because of her terminal illness.  

She said, which is fundamental and at the heart of what we are trying to do here 25 years later: “I want to have a quick death, without suffering, at home and surrounded by my family”. In the end Diane Pretty was not successful, she died aged 53… She didn’t have a choice, she could not choose the death she wanted. Much has been said about rushing the Bill, but that was 20+ years ago.’

My Death, My Decision Chair Aleisha Murray commented:

‘We know that many people living with neurodegenerative conditions are dismayed that MPs have decided not to give them the choice offered by this Bill, leaving them to face prolonged and unbearable suffering that could be avoided. The six-month limit fails to account for the realities of diseases like motor neurone disease, where prognosis is uncertain and many may lose mental capacity before they become eligible. 

‘While we regret this missed opportunity for a more compassionate law, we remain steadfast in our support for the Bill as a crucial step toward giving people the dignity and autonomy they deserve at the end of life.’

Humanists UK Chief Executive Andrew Copson commented:

‘It is disappointing that this amendment was not taken up. It would have extended the hope offered by this Bill to the large number of terminally ill people who are not covered by a six-month limit. All terminally ill people deserve the dignity of choice that legal assisted dying will afford. 

‘While we regret this outcome, we continue to support the unamended Bill, as a once-in-a-generation opportunity to bring choice at the end of life to those many people that it will help.’

Why the amendment was proposed

The amendment would have aligned England and Wales’s assisted dying law with that found in most of Australia and would be particularly important for people with Motor Neurone Disease (MND), Huntington’s, Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), and Corticobasal Degeneration (CBD), as well as some people with Parkinson’s. Under the Bill, some people with these conditions who meet the eligibility criteria of terminal illness would be excluded as the six-month limit is frequently past the point at which they need an assisted death – and sometimes it is past the point they can even be granted one.

Every UK resident who travels to Switzerland for an assisted death has a debilitating condition meaning they need an assisted death. But most do not have six months or fewer to live and so would not fit the criteria of the current Bill. The ‘six-month’ definition of terminal illness currently exists in law only in parts of the United States and in New Zealand. But even in New Zealand, yearly reports on assisted dying indicate that being unable to confirm a six-month prognosis is the primary barrier for eligibility. There are now proposals to extend it.

Motor Neurone Disease kills six people per day in the UK. 45% of people living with MND say they’d consider assisted dying if the law changed. The MND Association highlighted in its evidence to the committee that the six-month criteria is problematic as prognosis is incredibly difficult and for many the suffering is too great to mean that they can wait that long. Some will also lose mental capacity if forced to wait.

The Multiple System Atrophy Trust similarly said in its evidence that the six-month criteria is problematic, stating that 85% of people living with Multiple System Atrophy who have a view support a change to the law. The amendment will also extend choice at the end of life to the almost 8,000 people living with Huntington’s in the UK, many of whom would otherwise be excluded from the Bill for similar reasons as described above.

And the PSP Association similarly highlighted in its evidence to the committee that the six-month criterion is problematic for people with Progressive Supranuclear Palsy and Corticobasal Degeneration. And during oral evidence, several witnesses made similar points, such as Sir Nicholas Mostyn and experts from Australia.

Text of the amendment (No 234):

Clause 2, page 2, line 2, leave out “within 6 months” and insert— 

1. 1. in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or

1. 1. in the case of any other illness, disease, or medical condition, within 6 months.”

Member’s explanatory statement

This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.

The amendment would not have affected the ability of those who lack mental capacity to access assisted dying under the terms of the Bill. They remain, and would have remained, precluded from being able to access it under clause 1(a).

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 Assisted Dying Bill on the Isle of Man has passed a key hurdle, with a majority of amendments to the Bill being accepted. My Death, My Decision, whose local Isle of Man branch has been campaigning strongly for a law, welcomes this compassionate move.

Today, Members of the House of Keys, the Isle of Man’s lower house, voted on changes to the Bill made by the Legislative Council, the upper chamber. They chose to support changes including:

• A mandatory referral to a psychiatrist if there are doubts about the patient’s mental capacity.
• Specific training for healthcare professionals to identify coercion, duress or pressure.
• A person must be registered as a patient with a GP practice on the island

However, they rejected an amendment to cut the residency criteria from five years to 12 months before a patient can access the scheme.

The Bill will go back to the upper chamber on the 11th March, if they accept the final changes the Bill will go to Royal Assent and the Isle of Man will be the first part of the British Isles to legalise assisted dying with the choice of assisted dying potentially available to terminally ill residents from 2027.

The Bill would give terminally ill Manx residents with fewer than twelve months to live the choice of receiving help to end their own life. The Bill proposed in Westminster is limited to people with six months’ life expectancy or less. 

Our former chair, Trevor Moore, visited Tynwald in June 2023, to make the case for parliamentarians to vote for a compassionate assisted dying law that will help end unnecessary suffering for those who so choose.

Trevor Moore, Board Member of My Death, My Decision said:

“The members of the House of Keys are to be applauded for taking this historic step. They have engaged positively with the debate, with arguments put forward from all sides in good faith. We hope that Westminster will pay attention to this, and follow in their footsteps.

We would like to thank our passionate campaigners on the island, like Vicky Christian who chairs our local group there. They have done extraordinary work to ensure that the voices of people who have been deeply affected by the current unjust assisted dying laws are heard.”

Vicky Christian, Chair of My Death, My Decision Isle of Man said:

“This is a historic step, and is likely the last time the Bill will be debated in the lower chamber. This Bill will ensure people on the Isle of Man will finally have choice and dignity at the end of their lives. I am incredibly proud of our island for not only listening to its people but, more importantly, listening to those facing the end of life. In this debate, compassion and evidence have prevailed.

I want to thank the members of the House of Keys for their dedication to this cause. But above all, I want to thank the individuals who shared their personal stories and stood with us throughout this journey—this has truly been a campaign led by the 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.

In 2017 Victoria became the first state in Australia to pass an Assisted Dying Act. The Act came into force in 2019. Today a review of the Act has prompted the Victorian Government to propose changes to the law to improve access – in ways that should be instructive to UK politicians as to how our proposed laws can best be constructed. Here’s everything Humanists UK and My Death, My Decision think UK politicians could learn from Australia:

A six-month eligibility clause is too narrow

The Victorian law requires that the patient accessing assisted dying must have six months left to live or less, or twelve months left to live if they have a neuro-degenerative condition. The proposed law in England and Wales is six months for everyone, although an amendment has been put forward to change that to the same system as Victoria. 

In New Zealand (a six-month limit), many people lost their decision-making capacity before they could proceed. In contrast, in Victoria, only 7% lost competence during the process.

However, as the 12-month limit has proven more compassionate for people with neuro-degenerative conditions, the Victorian Government is now proposing extending it to all conditions. They argue this will also help doctors who have difficulty determining how long a patient has left to live.

There will be a consultation on this proposal, and politicians in Australia will have a free vote on it.

Assisted dying is safe and compassionate

The independent review, which was a result of extensive research and community consultations, found that assisted dying ‘is a safe and compassionate end-of-life choice available to eligible Victorians.’

The review found that families overwhelmingly valued the care and support provided by assisted dying medical practitioners. 93% of families reported that the process was compassionate.

‘The application was as good as it possibly could be… handled compassionately and efficiently.’ (Family member)

‘Just knowing that he had the option to access [assisted dying] was huge for him, even if he never ended up needing to use it.’ (Family member)

Don’t stop doctors from having frank and open conversations

Currently, doctors are essentially banned from talking about assisted dying unless the patient specifically asks for it, known as the ‘Gag Clause’. 

Nick Carr, a doctor in Victoria, has said that one of the hardest things to witness as a doctor is seeing terminally ill patients in unbearable pain, knowing that there is an option to end their suffering – but being unable to mention it. He said:

‘There’s been times where I’ve been sitting there, having to sit on my hands, having to shut my mouth because I want to say to them, ‘Do you know there is the option of voluntary assisted dying?’ and I can’t.’

Politicians in the UK have argued extensively about whether doctors can raise assisted dying. The BMA and other organisations have argued that doctors should not be ‘gagged’ and should always be able to have free and open conversations with patients. Thankfully, such a gag clause is not currently in the England and Wales bill. Proposals to add it should be resisted.

Accessibility is important

The review goes into depth about how assisted dying should be accessible. Currently, there is a ban on non-Australian citizens from being able to access it. 

There have been a number of high-profile cases of suicides from people found not to be eligible, including a British national who had lived in Australia for 42 years but who had never become a citizen. That man, who was eligible to vote and paid local taxes, was only rejected because of his lack of citizenship – despite receiving a terminal pancreatic cancer diagnosis and enduring immense pain, according to his doctor.

Politicians have also proposed reducing the time to obtain an assisted permit from 28 days to 21 days, making access quicker and reducing suffering. The Committee in the UK received a lot of evidence not to make the process too difficult for patients, to avoid them dying while waiting for access.

Assisted dying works in line with palliative care

The report also outlines that the overwhelming majority (83% in some areas) of applicants were also receiving palliative care, showing that assisted dying is used as a complementary option rather than a replacement.

There is a growing sense of approval in the palliative care community in Australia. The report outlines that medical practitioners and families support the process, and the medical community acknowledges that even the best palliative care cannot always alleviate suffering.

91% of people seeking assisted dying in Victoria were satisfied with the support from medical practitioners.

Aleisha Murray, Chair of My Death, My Decision, said:

‘On assisted dying, the UK isn’t leading the way – we’re lagging behind. We absolutely must learn from places like Victoria, which share our core values and now have years of experience. Crucially, we should take lessons from Victoria’s comprehensive review of assisted dying to ensure we introduce the best possible law from the outset.

‘It’s unjust that a dying person in Australia can choose a compassionate, dignified death, whilst in the UK, that same person would be forced to suffer. Compassion shouldn’t depend on geography. Everyone deserves a choice, and now is the time to introduce a compassionate law.’

Richy Thompson, Director of Public Affairs and Policy at Humanists UK, said:

‘We hope MPs take note of how assisted dying is evolving in Victoria. We must take into account all the international evidence and, where possible, learn from other countries about how to construct the most compassionate law possible, rather than seeing the same issues arise.

‘Adults in the UK deserve the right to a compassionate and dignified assisted death. 20 people a day die in pain, even with the best care, and for those people, they should have a choice at the end of their lives. No-one should be forced to die in pain when internationally more compassionate options are available.’ 

Notes

For further comment or information, media should contact Nathan Stilwell at nathan@humanists.uk or phone 07456200033.

Humanists UK and My Death, My Decision have people and their loved ones who would be affected by this change available for the press.

If you have been affected by the current assisted dying legislation, and want to use your story to support a change in the law, please email campaigns@humanists.uk.

Media can use the following press images and videos, as long as they are attributed to ‘Humanists UK’.

Humanists defend the right of each individual to live by their own personal values, and the freedom to make decisions about their own life so long as this does not result in harm to others. Humanists do not share the attitudes to death and dying held by some religious believers, in particular that the manner and time of death are for a deity to decide, and that interference in the course of nature is unacceptable. We firmly uphold the right to life but we recognise that this right carries with it the right of each individual to make their own judgement about whether their life should be prolonged in the face of pointless suffering.

We recognise that any assisted dying law must contain strong safeguards, but the international evidence from countries where assisted dying is legal shows that safeguards can be effective. We also believe that the choice of assisted dying should not be considered an alternative to palliative care, but should be offered together as in many other countries.

Read more about Humanists UK’s campaign to legalise assisted dying in the UK.

Humanists UK is the national charity working on behalf of non-religious people. Powered by over 130,000 members and supporters, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. We provide ceremonies, pastoral care, education, and support services benefitting over a million people every year and our campaigns advance humanist thinking on ethical issues, human rights, and equal treatment for all.

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.

Humanists UK and My Death, My Decision are both members of the Assisted Dying Coalition, along with Friends at the End, Humanist Society Scotland, and End of Life Choices Jersey.

A new amendment to the Terminally Ill Adults (End of Life) Bill aims to allow those with neurodegenerative illnesses to access assisted dying when they have twelve months or fewer to live, rather than six, as currently stipulated in the Bill.

Text of the amendment (No 234):

Clause 2, page 2, line 2, leave out “within 6 months” and insert— 

1. 1. in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or
   2. in the case of any other illness, disease, or medical condition, within 6 months.”

Member’s explanatory statement

This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.

The amendment does not affect the ability of those who lack mental capacity to access assisted dying under the terms of the Bill. They cannot access an assisted death under clause 1(a).

The amendment would align England and Wales’s assisted dying law with that found in most of Australia and would be particularly important for people with Motor Neurone Disease (MND), Huntington’s, and Multiple System Atrophy (MSA), as well as some people with Parkinson’s. Under the Bill as introduced, some people with these conditions who meet the eligibility criteria of terminal illness would be excluded as the six-month limit is frequently past the point at which they need an assisted death – and sometimes it is past the point they can even be granted one.

Proposing the amendment, Tom Gordon MP, who is on the Bill Committee, said:

 

‘This Bill is about ensuring people facing painful deaths from terminal conditions can have the choice of how they die. For those with neurodegenerative conditions, in their last six months, it may be too late for them to engage in the bureaucracy of applying. The amendment I have put forward, supported by colleagues across the house, will ensure more people with neurodegenerative conditions will be able to access an assisted death if that is their choice.’

 

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

‘MPs have heard evidence in the Terminally Ill Adults Bill Committee sessions from doctors in Australia and New Zealand why it would be sensible to permit a 12-month eligibility limit for people with neurodegenerative conditions like Motor Neurone Disease and Parkinson’s. We have a great opportunity in England and Wales to learn from doctors how assisted dying is working in their countries. My Death, My Decision really welcomes the amendment being put forward by these MPs – it is both evidence-based and compassionate.’

Why the amendment is being proposed

Most UK residents who travel to Switzerland for an assisted death do not have six months or fewer to live and so would not fit the criteria of the current Bill. The ‘six-month’ definition of terminal illness currently exists in law only in parts of the United States and in New Zealand. But even in New Zealand, yearly reports on assisted dying indicate that being unable to confirm a six-month prognosis is the primary barrier for eligibility. There are now proposals to extend it.

Motor Neurone Disease kills six people per day in the UK. 45% of people living with MND say they’d consider assisted dying if the law changed. The MND Association highlighted in its evidence to the committee that the six-month criteria is problematic as prognosis is incredibly difficult and for many the suffering is too great to mean that they can wait that long. Some will also lose mental capacity if forced to wait.

During oral evidence, several witnesses highlighted a problem with the six-month limit, such as Sir Nicholas Mostyn.

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.