Author: a23898_theseus

Today MPs debated the Terminally Ill Adults (End of Life) Bill as part of Report Stage. They debated a series of amendments, and voted on two.

Andrew Copson, Chief Executive for Humanists UK said:

‘We welcome today’s debate on assisted dying, with many eloquently standing up for compassion and dignity, emphasising that no-one should be compelled to endure unnecessary suffering at the end of life. We hope MPs remain committed to crafting a law that is robust and safe, yet deeply mindful of the experiences and dignity of those facing their final days.’

What happened today, in summary

The changes to the Bill debated today were: ‘Obligations, duties and protections for medical practitioners, hospices and care homes; The procedure for receiving assistance under the Act including safeguards and protections; Eligibility and mental capacity.’

Amendment NC10 (widening opt-outs) was agreed to without a vote. Amendment (a) to NC10, which would essentially have allowed employers as a whole to opt their employees out regardless of the employees’ views, was defeated 279 to 243.

MPs will return on 13 June to debate amendments on: ‘Approved substances and devices; Advertising; Inquests; investigations and death certification; Guidance and codes of practice; Welsh language; Monitoring, consultation and reviews; The Assisted Dying Commissioner; Implementation; Regulations; Extent; Commencement.’ Following this debate, they will vote on chosen amendments – including those from today that were not yet voted upon. It is unclear as to whether they will get through all votes on 13 June. If not, they will continue onto 20 June. After that, they will have Third Reading, where they will vote on the Bill again as a whole.

The Scottish Parliament has voted in favour of the Assisted Dying for Terminally Ill Adults (Scotland) Bill. Members of the Assisted Dying Coalition have welcomed the vote.

MSPs voted 70 in favour, 56 against on Stage 1 of the Bill, which is about general principles. There will be another two rounds of voting and amendments before the Bill passes fully. No Assisted Dying Bill in Scotland has ever made it past Stage 1.

Emma Cooper, Convenor of Friends at the End, said:

‘Today is a landmark moment for compassion, dignity, and choice in Scotland. As someone who has seen firsthand the pain that can accompany the end of life, I know how vital it is that we give people the right to die on their own terms. This Bill is not about giving up, it’s about empowering those who are dying to have control, peace, and a say in their final days. While this is not yet law, passing Stage 1 means the Scottish Parliament now has the opportunity to consider amendments and work together to create the right legislation for Scotland. On behalf of Friends at the End, we welcome this historic step forward and stand with all those who have waited so long for this moment.’

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

‘Today’s decision is a monumental step forward for human rights and compassion. This victory demonstrates Scotland’s leadership in recognising the fundamental right of terminally ill individuals to make dignified and autonomous choices about their own deaths. No-one should be forced to suffer at the end of life, and this law ensures that terminally ill adults will now have greater control and peace of mind.’

Glasgow-based Kevan Donoghue died at age 64, 18 months after a shock diagnosis of a rare bile duct cancer. Suffering from constant pain, Kevin died after not eating or drinking for three weeks as a result of his illness. His wife, ex-nurse Patricia Donoghue, suffers from PTSD following her husband’s death. Commenting on the vote, Patricia Donoghue said:

‘I am relieved and pleased with this result. It is a significant step forward for supporters of this legislation. It won’t immediately change the law, but it indicates real backing in the Scottish Parliament to continue refining and debating the Bill. It is a major milestone as previous attempts in Scotland have failed. Scotland is moving towards legally assisted dying for terminally ill adults. The hard work continues.’

Introduced by Liberal Democrat MSP Liam McArthur, the Assisted Dying for Terminally Ill Adults (Scotland) Bill is a Private Member’s Bill. It will allow terminally ill adults in Scotland to lawfully request, and be provided with, assistance by health professionals to end their own life.

Westminster will debate amendments to the Terminally Ill Adults (End of Life) Bill, which will apply to England and Wales, at Report Stage on Friday 16 May. Assisted dying legislation in the Isle of Man passed in March and is awaiting royal assent.

Humanists UK, My Death, My Decision, Humanist Society Scotland, and Friends at the End are all part of the Assisted Dying Coalition, a group of organisations across the UK and Crown Dependencies who campaign for a compassionate assisted dying law

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 only).

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 post Scottish Assisted Dying Bill passes historic first vote appeared first on My Death, My Decision.

The Government’s impact assessments for the Terminally Ill Adults (End of Life) Bill, published today, demonstrate that assisted dying can be delivered safely, ethically, and compassionately in England and Wales. Humanists UK and My Death, My Decision have welcomed the reports.

Coming two weeks before the Bill returns to the Commons for the next stage of legislative scrutiny, the impact reports outline the costs associated with the law and the impact on different groups, drawing from evidence in 25 other jurisdictions where assisted dying is already established.

Overall there are predicted to be cost savings for the state if the law does change – though the sums of at most tens of millions are negligible in the context of the £180 billion annual NHS spend. Regardless, the decision on whether to change the law should not be about economics, but on whether assisted dying is the right approach in principle.

Terminally ill people of sound mind who have a clear and settled wish to die are suffering enormously under the law as it stands, or else finding ways to end their lives without safeguards. This Bill will enable them to end their lives with appropriate safeguards through a proper legal framework.

Andrew Copson, Chief Executive of Humanists UK said:

‘These impact assessments are part and parcel of the scrutiny process that effective legislation requires, adding another layer to a Bill that has already seen months of thorough debate in the House of Commons at committee stage in addition to its pre-legislative development. We’re pleased to see that the Government has done such a thorough job.

‘Assisted dying isn’t untested. Legislation is already working in over 31 jurisdictions across the world, where implementation in Australia, New Zealand, the US, and Europe has shown it to be safe, compassionate, and practical. It’s time for Parliament to grant people the dignity and autonomy they deserve at the end of life.’

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

‘These reports confirm what we have long known – that our current laws are failing dying people and that the current status quo is unacceptable. Every day we delay is another day someone is denied the choice to die with dignity, free from prolonged pain and suffering.

Assisted dying is not a fringe issue – it is a mainstream, compassionate cause backed by the majority of the public. These reports must be a catalyst for action. It’s time for Parliament to take a clear-eyed, humane look at how we care for those at the end of their lives.’

On 16 May, all MPs will have the opportunity to debate the Bill for the first time since it was strengthened considerably by its public bill committee. The impact assessments’ findings have shown that the Bill is feasible and workable, as well as overwhelmingly supported by UK citizens.

In March, the Isle of Man became the first jurisdiction in the UK and Crown dependencies to pass an assisted dying law following a historic vote. The Bill will make assisted dying available to adult Isle of Man residents who are of sound mind, are terminally ill, have twelve months or fewer to live, and have a clear and settled wish to die.

 

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 post My Death, My Decision and Humanists UK welcome Assisted Dying Bill impact assessment appeared first on My Death, My Decision.

The special Oireachtas committee in the Republic of Ireland is set to recommend that legislation should be introduced to allow for assisted dying. Humanists UK welcomes this move by the Irish committee and urges Westminster to take note.

Disappointingly, just last week the UK Health and Social Care Committee released their report on assisted dying which didn’t go as far as to recommend change.

Following late-night votes on Wednesday evening, the Oireachtas Committee on Assisted Dying agreed to recommend that legislation be introduced to allow for assisted dying for people with terminal illnesses. People with incurable, irreversible, progressive and advanced illnesses that will cause death within six months will be eligible. This time limit is likely to be set at 12 months for neurodegenerative conditions.

The Committee’s final report is due to be published on 20 March.

The report will likely recommend that Irish citizens or Irish residents will be eligible, which could mean that Northern Irish people will be able to travel to Ireland for an assisted death. Bangor Humanists will be hosting an event on assisted dying on 20 March. Sign up here.

In October, Humanists UK Chief Executive Andrew Copson gave evidence to the committee. He set out the humanist case that any assisted dying law should be based on relieving unnecessary suffering, and that adults of sound mind who are intolerably suffering from a physical, incurable condition should have this end-of-life choice.

Senator Annie Hoey, who was on the committee, will address UK politicians at the All-Party Parliamentary Humanists Group meeting in Westminster on 19 March.

Nathan Stilwell, Assisted Dying Campaign for Humanists UK, said:

‘Well done to the Irish special Oireachtas committee on assisted dying for taking an evidence-based and compassionate approach. It’s brilliant to see such a bold move after just a week ago a Westminster committee did not vote for any change in the law. We look forward to reading the full report.

The UK Government must legalise assisted dying. The evidence is clear, the people are united in wanting change and not one more Brit should have to go through an unnecessarily painful death when other countries are repeatedly showing that a more compassionate route is possible.’

A new study published today shows that the majority of UK residents who travel to Switzerland for an assisted death would not be helped by the laws considered by Parliament to date. My Death, My Decision urges politicians to support an assisted dying law that recognises intolerable suffering and makes these journeys to Switzerland unnecessary.

Every law that has been proposed in the UK so far has been based on the legislation introduced by the US state of Oregon in 1997. Under the ‘Oregon Model’, only people with a terminal illness who have six months left to live or less are eligible to have an assisted death. 

Many people seeking an assisted death suffer from slow degenerative diseases like Parkinson’s and Motor Neurone Disease and cannot be said to have “only six months left to live”.  This study shows that more than half the UK residents going to Switzerland have such conditions, and would likely be ineligible under a UK assisted dying law requiring a six-month prognosis. 

The paper was published in the BMJ Supportive & Palliative Care. Read it here.

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

“The next parliament must legislate to reflect overwhelming public support for assisted dying. We urge politicians to vote for an ethical and compassionate law that will not discriminate with arbitrary eligibility criteria. We know that many MPs have spoken with constituents with conditions like ALS, Huntington’s and Motor Neurone Disease, who want and deserve the right to have a dignified death on their own terms.

We need a law that would have worked for Tony Nicklinson and Paul Lamb, the men who fought for the right to receive assistance for their self-determined death through the courts and whose Supreme Court challenges remain landmark cases.”

Table 1 Diagnoses of UK Residents receiving an assisted death in Switzerland

Diagnosis	Deaths	%
Cancer	92	22.7%
Neurological diagnosis	201	49.6%
Chronic Pain	21	5.2%
Dementia incl Huntingtons	13	3.2%
Cardiovascular	7	1.7%
Respiratory	8	2%
Gastrointestinal	3	0.7%
Misc/Multi-Morbidity	60	14.8%
Total	405	100%

Table 2 UK Residents with neurological diagnoses receiving an assisted death in Switzerland

	UK Residents
	Nos	% of all patients
Motor neurone disease	79	19.5
Parkinsons/ Multiple system atrophy (MSA)	15	3.7
Multiple Sclerosis	63	15.5
Spinal problems/stenosis	9	2.2
Progressive Supranulear Palsy	7	1.7
Paralysis*	11	2.7
Ataxia	3	0.7
Locked in syndrome	1	0.5
Other	13	3.4
TOTAL	201	49.6
* incl tetraplegia and status after stroke

The study:

Analysis was carried out by Marie-Claire Hopwood, palliative care consultant, Dr Graham Winyard, retired public health physician and former Deputy Chief Medical Officer, Dr Colin Brewer, retired psychiatrist and former director of Westminster Hospital’s community alcoholism treatment service.

They analysed the diagnoses of UK residents who had an assisted death during periods between 2005 and 2022 at all three of the Swiss organisations that provide this service to non-residents of Switzerland to try to determine what proportion of them would have met that requirement. 

My Death, My Decision recommends that the UK legislation on assisted dying should be based on the following:

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

The Health and Social Care Committee is currently running an inquiry into assisted dying. It is likely to be published soon. 

Progress on assisted dying legislation is being made in Scotland, Jersey and the Isle of Man. Each jurisdiction is due to debate the issue next year.

Notes:

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

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

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

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

The post Swiss assisted dying data shows proposed UK laws are inadequate appeared first on My Death, My Decision.

The Prime Minister, Rishi Sunak, has said he would support allowing enough parliamentary time for a meaningful debate and vote on assisted dying. Mr Sunak also pledged to introduce assisted dying laws if parliament wanted to change the law, saying the government would “facilitate” it in a “legally effective” way.

My Death, My Decision welcomes the Prime Minister’s comments and will push for an assisted dying Private Member’s Bill to be introduced at the next opportunity.

Earlier this year the leader of the opposition, Keir Starmer, made a similar pledge of parliamentary time.

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

“This is huge. Both the Prime Minister and the Leader of the opposition have now said they would make parliamentary time for a meaningful vote on assisted dying. This is welcome progress towards more compassionate end-of-life choices for people suffering unbearably from incurable conditions. 

With the vast majority of the public in favour of law change, voters from all parties have been pushing for a proper debate and vote on this crucial issue. It’s about time we stopped exporting compassion to Switzerland and gave suffering people the choice of how and when they wish their life to end.”

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

There has not been a vote on assisted dying since 2015. The most recent attempt to change the law ended when a Bill in the House of Lords ran out of time in 2021. There are currently no votes or debates expected on this topic in this parliamentary term.

The Health and Social Care Committee is currently running an inquiry into assisted dying. The date of the report’s publication is likely to be announced soon. 

Progress on assisted dying legislation is being made in Scotland, Jersey and the Isle of Man. Each jurisdiction is due to debate the issue this year.

Notes:

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

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

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

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

The post Rishi backs time for assisted dying vote appeared first on My Death, My Decision.

Sir Keir Starmer, leader of the Labour Party, has said MPs should be allowed to vote on assisted dying. His comments come alongside several senior politicians, including Michael Gove, Alicia Kearns, Mel Stride, Tobias Ellwood and Darren Jones, who have backed another assisted dying vote in Parliament. The last time MPs voted on assisted dying was 2015. 11 MPs who are now members of Sir Keir’s shadow cabinet supported the bill at the time. Starmer’s comments come in the light of the news that Dame Esther Rantzen, the broadcaster who founded the charities Childline and The Silver Line, said she had joined the assisted dying centre Dignitas. Dame Esther is currently undergoing treatment for stage four lung cancer. Cabinet Member Mel Stride said the government did not have plans to bring the law back to parliament but he would not be resistant to discussions if it did. Levelling Up Secretary Michael Gove said it was “appropriate for the Commons to revisit [assisted dying]”. Alicia Kearns, Chair of the foreign affairs select committee, said she thought there had been “a fundamental shift in the country, but also in parliament” since 2015.  Kearns told the BBC: “The amount of my colleagues who say ‘I’ve reflected, I’ve changed my views’… I really do think that the national conversation has changed,” Prominent Labour MP Darren Jones has told reporters that an assisted dying debate “should happen” and he believes a debate will happen “sooner rather than later”. The most recent attempt to change the law ended when the bill ran out of time in 2021. There are currently no votes or debates expected on this topic in this parliamentary term. Avengers and Game of Thrones star Diana Rigg recently made headlines when she made an impassioned case to legalise assisted dying in a message recorded shortly before her death. The message was released by her daughter.  The Health and Social Care Committee is currently running an inquiry into assisted dying. It was due to publish its findings this year, but due to the debate around the report, it is likely to be published early in 2024.  Progress on assisted dying legislation is being made in Scotland, Jersey and the Isle of Man. Each jurisdiction is due to debate the issue next year. Claire Macdonald, Director of My Death, My Decision said: “We welcome Sir Keir Starmer’s comments that there are “grounds for changing the law” on assisted dying. The current status quo forces British citizens into an impossible choice: flee abroad for an assisted death in a foreign country or stay at home and suffer. The current law is barbaric. In the next parliament, we desperately need a proper debate and vote on this vital issue. The vast majority of voters want to see a change in the law. Adults who are intolerably suffering from a physical condition that cannot be cured and have come to a clear and settled wish to die should be allowed that right.” Notes: Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033. My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow mentally competent adults who are terminally ill or intolerably suffering from an incurable condition the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives. Read more about our work with the Assisted Dying Inquiry: https://www.mydeath-mydecision.org.uk/2023/07/13/our-summary-the-assisted-dying-inquiry/  The post Keir Starmer backs assisted dying vote appeared first on My Death, My Decision.

An Assisted Dying Bill in the Isle of Man has passed its second reading in parliament, a key stage of a bill’s passage into legislation. Humanists UK welcomes this important step and hopes that the Isle of Man will be the first part of the British Isles to legalise assisted dying.

The Bill would give terminally ill people on the Isle of Man the choice to end their own life. Now that the Bill has passed the second reading, it will enter the clause stage where individual elements of the bill can be scrutinised and voted on. This could be done by a committee of five members, or a committee of the entire House of Keys, the Isle of Man’s lower chamber. A committee of the entire house proved effective in the creation of the island’s abortion bill.

Before the third stage of the bill, Humanists UK hopes to see the eligibility criteria changed to include individuals who are incurably and intolerably suffering.

Nathan Stilwell, Humanist UK’s assisted dying campaigner, spoke to Members of the House of Keys and Legislative Council last week, making the case for them to adopt the most forward-thinking and compassionate law possible, similar to how the Isle of Man voted to introduce the most liberal abortion regime in the British Isles in 2018.

Humanists UK Assisted Dying Campaigner Nathan Stilwell said:

‘We are delighted that the Isle of Man’s Assisted Dying Bill has passed its second reading. The Isle of Man has moved past other parts of the British Isles to show that a compassionate, evidence-based approach is possible.

‘However, it’s important that the incurably, intolerably suffering, not just the terminally ill, are included in any assisted dying legislation. People with neurological conditions like MND and Huntington’s deserve the right to choose to end their suffering on their terms, and if legislation is only limited to people who have six months left to live, this choice could be denied to them.’

Last week, the House of Commons’ assisted dying inquiry held its final oral evidence session

Here’s what happened in the inquiry, including all the important conclusions. The Health and Social Care Committee, a cross-party select committee led by Conservative MP Steve Brine, launched the inquiry in January. Its stated aim is to explore the arguments across the debate and ‘to consider the role of medical professionals, access to palliative care, what protections would be needed to safeguard against coercion and the criteria for eligibility to access assisted dying’. A key aspect of the inquiry was what could be learnt from international experiences.

Humanists UK expressed some concern about the composition of the Committee as seven of the 11 members have previously opposed assisted dying, with only three being known to be supportive. The Committee is also much more religious than the public at large: only one of the 11 MPs (9%) affirmed upon entry into Parliament (i.e. made a non-religious oath), with the other ten swearing a Christian oath. This compares with 24% of all MPs having affirmed. The 2019 British Social Attitudes Survey recorded that 53% of British adults belong to no religion.

What did they do?

The public was invited to share their views in a survey, which received 63,000 responses. The Committee has only released a partial snapshot of the results of the survey, saying for example that 94% of respondents who said that they broadly disagree with the current law in England and Wales felt that ‘reducing suffering’ was a key factor in their view.

Humanists UK, along with over 300 organisations, experts, and individuals submitted written evidence as well.

The Committee also held two closed-door roundtable discussions with people who are affected by the current law. We understand this to mean quite a range of individuals, from terminally ill people to nurses. These discussions have been anonymised, transcribed and will feed into the report.

The Committee also hosted five evidence sessions, where a range of domestic and international experts give evidence live in front of the Committee, who were able to pose questions. However, the evidence sessions did not include healthcare professionals outside palliative care, disabled people, people with lived experience of assisted dying or healthcare professionals are part of the assisted dying process abroad.

What did they learn?

Assisted dying legislation improves other end-of-life care, such as palliative care

Contrary to some assertions, the oral evidence sessions showed that abroad, the introduction of assisted dying legislation led to improvements in general end-of-life care.

In the oral evidence session that focused on jurisdictions that allow assisted dying for people who are incurably, intolerably suffering, Professor James Downar, Head of the Division of Palliative Care at the University of Ottawa, explained that since the introduction of an assisted dying law in 2016, Canada had seen ‘the strongest growth of palliative care in its history.’ Professor Jan Bernheim and Professor Rutger Jan van der Gaag said that legislative change in Belgium and the Netherlands had been intrinsically linked with palliative care and they now boast some of the best palliative care provisions in Europe.

In written evidence submitted to the committee, Palliative Care Australia – the peak palliative care organisation in Australia – outlined how it had initially opposed assisted dying legislation. But after extensive research it came to the conclusion resoundingly that assisted dying legislation leads to improved palliative care.

Every jurisdiction that introduces assisted dying legislation wants to keep it

In every single one of the 27 international jurisdictions that have legalised assisted dying in some form, the service works and remains popular. Over 350 million people across the world have access to assisted dying.

Professor Bernheim explained that Belgium and the Netherlands have the most scrutinised and studied legislation in the world, and public support remains strong, as does public confidence in the medical system.

Professor Roderick MacLeod from New Zealand, who opposes the country’s law, conceded that there is no appetite to turn back the clock.

When asked what would happen if assisted dying was prohibited in Switzerland Dr Georg Bosshard, a practising Swiss geriatrician, said it would be a revolution. He continued:

‘It is very important for Swiss people to have that freedom at the end of life. The right to die society EXIT has more than 100,000 members. It is a public rights issue at the forefront. It is really important for Swiss people to have that right.’

There is no evidence of coercion

Some people fear that if legalised, some may pressure others to have an assisted death.

In the second panel, which consisted of academics that have studied assisted dying, Dr Naomi Richards, Professor nancy Preston, and Dr Alexandra Mullock were clear that in the international jurisdictions that they have studied throughout their extensive research and careers, there is no evidence that people are forced against their wills to have assisted deaths.

Silvan Luley, from the Swiss assisted dying centre Dignitas, explained that every single assisted death in Switzerland is investigated by the police and the coroner does an examination, and he wasn’t aware of a single case of coercion. Most international jurisdictions have some sort of reviewing process to check processes and conditions have been met.

Assisted dying legislation brings dignity

Switzerland has had an assisted dying law for nearly 80 years. The US state of Oregon, Belgium, and the Netherlands have had legislation for over two decades. In all of these jurisdictions, people are given the opportunity to die on their terms, with dignity.

Professor Bernheim explained that Belgium and the Netherlands are where end-of-life issues have been studied the most intensely. He highlighted that since the law was introduced there has been ‘much more control, much more scrutiny, much more awareness, much more compassion’.

Legalising assisted dying improves conversations around death

Most MPs on the Committee, as well as people who gave evidence, agreed that conversations around death and dying are incredibly important.

In written evidence to the Committee, Professor Bronwyn Parry, Dean of an Australian University, and Dr Sally Eales, PhD at the University of Sheffield concluded after research that ‘The current ban on assisted dying prevents dying people, their loved ones and doctors from having open and honest conversations about dying.’

A citizens’ jury could be the answer

Citizens’ juries, otherwise known as citizens’ assemblies or citizens’ conventions, is when a group of individuals who are representative of the population are brought together to have an honest conversation and find common ground on an issue that matters. Citizens’ juries on assisted dying have happened in both France and Jersey.

The second evidence session included Dr Mullock, an expert advisor to the jury in Jersey. She supported members of the jury to help them clarify and examine the evidence they received. She told the Committee: ‘I think it is a very good process and a really good way to have democratic participation.’

The survey run by the inquiry posed the question if a citizens’ assembly would be helpful, but the Committee has not revealed the number of respondents who agreed that it would be.

Did they approach the inquiry in the right way?

At the start of the inquiry, Humanists UK revealed that the Committee is considerably more religious than the public. Ten of the eleven committee members swore a Christian oath upon entering Parliament. Four committee members have voted against assisted dying in the past and at least three of the members have also voted against abortion rights, a stark contrast to the 86% of the public who support women’s right to an abortion.

It’s possible that many of the Committee members approached the inquiry already disagreeing with assisted dying.

The Committee missed some key components of the debate

It’s understandable that the Committee would be unable to interview every expert, but a complete lack of campaigning organisations, disabled people, practising doctors outside of palliative care, surgeons, nurses, and social care workers draws big holes in how the inquiry would work. As the inquiry was run by the Health and Social Care Committee, more emphasis on these groups would have been expected.

While the Committee did speak to a range of international experts, not a single healthcare professional who has assessed patients for an assisted death was called to give oral evidence. Doctors who administer end-of-life drugs internationally were omitted too.

One of the biggest changes since the 2015 House of Commons vote to uphold the ban on assisted dying is that the British Medical Association and all bar one Royal College have changed their position to one of neutrality. A survey by the Royal College of Surgeons recently revealed that six in ten surgeons personally support assisted dying. The British Medical Association dropped its opposition to assisted dying in 2021, after 59% of doctors said they believe adults with physical conditions causing intolerable suffering should be allowed help to die.

There was too much focus on issues unlikely to affect the UK

There are several organisations in the UK that advocate for a compassionate assisted dying law. Most are part of the Assisted Dying Coalition, which we co-founded. There have also been several attempts to change the law, in the form of private members’ bills. None of these organisations or past bills advocate for people under the age of 18 to be eligible for an assisted death. Nor do they ever advocate for people who suffer from mental health conditions, not physical conditions, to be eligible. A petition to include mental health in the Scottish Assisted Dying Bill garnered only 40 signatures.

It is entirely fair for politicians to ask questions about mental health and age criteria, but this conversation that focuses on the fringes of the debate took up too much time from the oral evidence sessions.

There were twelve questions posed by committee members on assisted dying for mental health criteria. MP James Morris posed seven questions which mentioned mental health and capacity. Questions related to children were asked five times.

Even in jurisdictions where assisted deaths are legal for people under the age of 18 or for people suffering from mental health conditions, assisted deaths for these groups are incredibly rare. In 2020, 2021, and 2022 there were no assisted deaths for minors in Belgium.

The emphasis on palliative care detracted from evidence from the rest of the health and social care profession

There was clearly an overwhelming focus on palliative care for this inquiry. While palliative care is relevant, this took up too much oxygen. In the final session, involving Helen Whately MP, Minister of State at the Department of Health and Social Care, and Professor Stephen Powis, National Medical Director at NHS England, it was 31 minutes into a 40-minute session before the first question pertaining to assisted dying was asked.

As already mentioned, palliative care doctors were invited to give oral evidence, while not a single other practising healthcare professional was. The first item of the terms of reference was ‘To what extent do people in England and Wales have access to good palliative care? How can palliative care be improved, and would such improvements negate some of the arguments for assisted dying/assisted suicide?’

This means that most written evidence tackled this question first, before outlining why the assisted dying debate is happening in the first place.

Outside of healthcare, psychologists, social workers, disabled people, terminally ill people, people suffering from incurable diseases and families, and friends and loved ones of people who have died painful deaths are all important stakeholders in this inquiry. Not enough weight was given to these other groups.

A lack of UK-based evidence

The committee did not adequately probe case studies of Motor Neurone Disease and Huntington’s. As mentioned, it is great that the Committee took in large amounts of international evidence: as numerous jurisdictions have had assisted dying legislation for over two decades, there is ample international evidence.

However, there have been several important studies into the pain, suffering, and indignity that exist in the UK today. Firstly, a study by the Office of National Statistics found that diagnosis of a serious health condition is associated with an elevated rate of death due to suicide. Even more strikingly, the study found that patients with Huntington’s and Motor Neurone Disease were considerably more likely to die by suicide. It’s clear that with the lack of any assisted dying law, people in the UK are taking end-of-life decisions into their own hands.

Another major study, by the Office of Health Economics, found that even if they received the best possible palliative medicine, at least 6,000 per year would die without any effective pain relief in their final month. A report by Dignity in Dying showed that 17 people a day die in pain.

These two major studies received little attention during the inquiry, yet are a vital part of the picture, showing the need for an assisted dying inquiry here in the UK.

Anecdotes were left unchallenged

There were several moments in the inquiry where anecdotal evidence and unsupported assertions were left unchallenged or uncorrected.

Professor Lydia Dugdale, Director of Centre for Clinical Medical Ethics in the US, alleged that people had been forced into euthanasia in Canada for poverty or by pressure from their children. Paul Blomfield MP challenged Dugdale to produce evidence of these claims, yet to date, no corrections or additional evidence has been published by the Committee. Dr Matthew Doré, Honorary Secretary of the Association for Palliative Medicine, repeated these claims in the subsequent session and was left unchallenged.

Professor Downar told the Committee ‘A number of cases in Canada have been misrepresented. It is important to set the record straight on some of these.’

Humanists UK produced a report on how many of the cases in Canada are being misreported. A recent IPSOS poll confirmed that 84% of Canadians support their assisted dying legislation.

An inadequate survey

There were also technical issues with the survey that was carried out at the start of the inquiry. Firstly, the first question in the survey stated:

‘Suicide and attempted suicide are not crimes in England and Wales. However, it is a crime for a person to encourage or assist the suicide of another person. Euthanasia (healthcare professionals administering lethal drugs) is also illegal.

Which of the statements below best reflects your view?

• I broadly agree with the law on this issue in England and Wales
• I broadly disagree with the law on this issue in England and Wales
• I’m not sure’

The wording of this question is quite unclear – a person could read this as being asked to agree/disagree with the idea that suicide is not a crime. Secondly, a person could agree that encouraging the suicide of a person, especially for selfish motives, should remain illegal, while assisting someone who is incurably suffering, under strict criteria, should not be illegal. So how is someone who supports assisted dying meant to answer?

Secondly, the survey included no identifiers, such as names, email addresses, or addresses. This means that individuals from abroad could respond, and individuals could respond multiple times. We know this is an issue, the Scottish consultation on its Assisted Dying Bill in September 2021  received 3,352 responses, all on the same day, from the same organisational email address with near-identical responses, organised by the anti-abortion lobby group ‘Right to Life’.

Right to Life organised the same campaign for this survey, even pre-filling the responses. When responding to the survey, users were asked to select factors they found the most important when considering the issue. Right to Life did not ask individuals to choose the ‘Sanctity of life’ option of the survey – clearly hiding their main religious motivation.

Conclusion

The evidence submitted to the assisted dying inquiry shouldn’t be ignored. There is a tremendous amount of evidence that was submitted by a huge range of experts, both at home and abroad. We now have decades of experience internationally to draw upon and 27 jurisdictions to look towards. The existence of an inquiry alone has helped to move this vital debate forward.

Yet there are enough issues that we’ve identified that need to be addressed. At the very start of the inquiry in January, David Gauke, the former Justice Secretary, expressed concern about the makeup of the Committee. He wrote in an article for the New Statesman ‘The composition of the committee makes it very unlikely that it will recommend reform’.

Considering this may be one of the most important ethical issues of our generation, it could be considered unjust if the makeup of the Committee prevents it from coming to genuine, evidence-based conclusions.

Notes:

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

Read about the inquiry’s session on Switzerland.

Read about the inquiry’s session on Belgium, the Netherlands, and Canada.

Read about the inquiry’s session on Australia, New Zealand, and America.

Read more about a decade of campaigning for the legal right to die – at home and abroad.

Read the ONS study on suicides among people diagnosed with severe health conditions.

Read more about our campaign to legalise assisted dying in the UK.

Humanists UK is the national charity working on behalf of non-religious people. Powered by 100,000 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.

Helen Whately MP, Minister of State of the Department for Health and Social Care told the Health and Social Care’s inquiry on assisted dying that the Government will not stand in the way of assisted dying legislation.

Whately told MPs on the committee that the Government believes this is an issue of conscience and that it is a matter for parliament to decide what assisted dying model the UK would adopt, if it chose to. She told the committee that the government had not had any discussions on whether to give Parliament enough time for a meaningful vote. She also admitted that she had not been involved in, and was not aware of, any discussions for policies if Scotland, Jersey or the Isle of Man introduce assisted dying legislation, as they are expected to do so.

The session also heard from experts on palliative care. Jonathan Ellis, Director of Policy at Hospice UK, said the consequences of a lack of legislation should be understood as well as the potential consequences of legislation.

In a previous evidence session, the committee heard evidence that assisted dying actually leads to improvements in palliative care. Professor James Downar, Head of the Division of Palliative Care at the University of Ottawa, explained that since the introduction of an assisted dying law in 2016, Canada had seen ‘the strongest growth of palliative care in its history.’ Professor Jan Bernheim and Professor Rutger Jan van der Gaag said that legislative change in Belgium and the Netherlands had been intrinsically linked with palliative care and they now boast some of the best palliative care provisions in Europe.

The overwhelming majority of people who access assisted dying abroad are over 70, have terminal cancer and were already receiving good quality palliative care at the time of their death.

In written evidence submitted to the committee, Palliative Care Australia – one of the main palliative care organisations in Australia, which initially opposed assisted dying legislation – after extensive research came to the conclusion resoundingly that assisted dying legislation leads to improved palliative care.

My Death, My Decision would welcome an assisted dying law in the UK that grants mentally capable adults the option of an assisted death if they are enduring unbearable suffering from an incurable physical condition.

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

“The evidence is clear, where assisted dying is legalised, jurisdictions see better funding for palliative care, a better understanding of death and better choices for people at the end of their lives. 

We are glad to find out that the Government won’t block assisted dying legislation, but the way politics works means that we haven’t had a meaningful vote on assisted dying in nearly a decade. The people of the UK desperately want to see this issue addressed.”

---

Read more about our work with the Assisted Dying Inquiry: https://www.mydeath-mydecision.org.uk/2023/05/15/assisted-dying-inquiry-health-and-social-care-committee-takes-next-steps/ 

Watch the evidence session here: https://committees.parliament.uk/event/18436/formal-meeting-oral-evidence-session/ 

The post Health Minister: Government will not stand in the way of assisted dying appeared first on My Death, My Decision.