The Assisted Dying Coalition is the UK and Crown dependencies coalition of organisations working in favour of legal recognition of the right to die, for individuals who have a clear and settled wish to end their life and who are terminally ill or facing incurable suffering.
New research by the Assisted Dying Coalition has revealed the true inadequacy and disparity of the broken UK assisted dying laws. The new research shows where UK residents have come from before having an assisted death at Dignitas, the assisted dying centre in Switzerland.
The research outlines the continuous flow of UK and crown-dependency residents using assisted dying services abroad — an increase which will only continue in the absence of a compassionate assisted dying law.
For the first time, this report publishes the breakdown of where UK and Crown Dependency residents come from who have an assisted death at Dignitas:
County
Assisted Deaths
Greater London
108
Kent
20
Surrey
20
Hampshire
19
Devon
18
East Sussex
18
Essex
16
Greater Manchester
16
Somerset
15
Norfolk
12
North Yorkshire
12
West Midlands
12
More affluent local authorities see higher rates of individuals going abroad. Counties that are also further from an airport, meaning travel is significantly more difficult and expensive, often see fewer assisted deaths.
The report highlights data on the types of cases that go abroad showing that many suffer from neuro-degenerative conditions. Some of them would not yet be classed as terminally ill or have less than six months left to live, showing that any assisted dying law must ensure that eligibility criteria are based on suffering, not months left to live.
The Assisted Dying Coalition is the UK and Crown Dependencies coalition of organisations working in favour of legal recognition of the right to die, for individuals who have a clear and settled wish to end their life and who are terminally ill or facing incurable suffering.
Nathan Stilwell, Secretariat for the Assisted Dying Coalition, said:
‘This report clearly shows that the UK’s assisted dying law is broken, brutal and barbaric. We must stop exporting compassion to Switzerland and give choice, freedom and dignity to the people in this country who are suffering.
Having a postcode lottery to end suffering, and an unequal system, where only the rich and physically able can take advantage, is absolutely wrong. 31 jurisdictions around the world, accessible to nearly 400 million people, prove that compassionate options are available.
Adults of sound mind, who are intolerably suffering from a physical, incurable condition deserve the freedom and right to have a dignified end-of-life choice on their own terms.’
Notes:
For further comment or information, media should contact Nathan Stilwell at nathan@humanists.uk or phone 07456 200033.
Humanist UK Chief Executive Andrew Copson provided evidence to the Special Oireachtas committee last October
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.
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.’
If you are struggling to cope, please call Samaritans for free on 116 123 (UK and ROI) or contact other sources of support, such as those listed on the NHS Help for suicidal thoughts webpages. Support is available round the clock, every single day of the year, providing a safe place for anyone struggling to cope, whoever they are, however they feel, and whatever life has done to them.
Notes
For further comment or information, media should contact Humanists UK Assisted Dying Campaigner Nathan Stilwell at press@humanists.uk or phone 07456 200033.
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
Humanists UK is the national charity working on behalf of non-religious people. Powered by over 120,000 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.
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.
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.
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.
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.
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.
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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,”
Esther Rantzen at Queen Elizabeth II Platinum Jubilee 2022 – Picture by Andrew Parsons
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.
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.
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.
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.’
Notes
The Isle of Man is a British crown dependency located between the islands of Great Britain and Ireland, west of the Lake District. Its parliament, the Tynwald, is the world’s oldest continually operating parliament. It is not part of the UK, although the UK is responsible for its defence and international representation. Manx citizens are British citizens.
For further comment or information, media should contact Humanists UK Assisted Dying Campaigner Nathan Stilwell at press@humanists.uk or phone 07456 200033.
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
Humanists UK is the national charity working on behalf of non-religious people. Powered by 110,000 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.
The Assisted Dying Coalition represents a group of organisations within the UK and Crown Dependencies that advocate for the legal recognition of the right to die. We aim to legalise assisted dying for individuals who are terminally ill or facing incurable suffering and have expressed a clear and settled wish to end their lives.
This article provides an overview of the latest progress and updates regarding assisted dying legislation in different regions.
England & Wales
The Health and Social Care Committee is presently conducting an inquiry into assisted dying. The committee received an overwhelming response from the public, with over 63,000 submissions, along with nearly 300 written responses from experts and organisations. Humanists UK and My Death, My Decision have also provided written evidence to the inquiry.
Initial findings from a public survey and insights gained from a fact-finding visit to Oregon have already been published by the committee. They have also heard oral evidence from a diverse range of international experts. Although the report publication timeline remains uncertain, we anticipate that it will not make a definitive recommendation either for or against reform.
No assisted dying Bills are currently progressing through Parliament, and there are unlikely to be any prior to the next general election.
Scotland
Liam McArthur MSP has secured the right to introduce the proposed Assisted Dying for Terminally Ill Adults (Scotland) Bill. The drafting process for this bill is currently underway, and it is expected to be introduced to the Scottish Parliament later in 2023.
As the consultation document highlighted, the proposed bill in Scotland is set to be the most comprehensive ever presented, addressing the complex and challenging issues that previous bills did not adequately cover. McArthur and his team have received support from a medical advisory group comprising experts in various disciplines, including palliative medicine, mental capacity, public health, and pharmacology. Additionally, international stakeholders have been consulted to ensure evidence-based policymaking.
Once introduced, the bill will undergo scrutiny by a lead committee, which will consider oral and written evidence. The committee will then publish a report on the proposal prior to the Stage 1 vote in the chamber. If the bill secures a majority, Stage 2 will involve amendments, and Stage 3 will be the final stage leading to the bill’s submission for Royal Assent. Supporters in Scotland can voice their support for legal reform by contacting their MSPs using the Humanist Society Scotland’s dedicated tool.
Jersey
In November 2021, Jersey made the historic decision to support assisted dying ‘ in principle’. However, the timeline for this process has been subject to delays. The States assembly was initially scheduled to discuss detailed proposals in May 2023, but this is now anticipated to occur in 2024 or 2025, with the actual law yet to be drafted.
The assembly produced “detailed proposals” which seemed robust, sensible and a positive step forward. End of Life Choices Jersey and members of the ADC welcomed certain aspects of the proposals but warned against imposing additional burdens and delays on those experiencing unbearable suffering compared to individuals with a terminal prognosis.
The States subsequently issued a feedback report in April 2023 summarising the received input. However, it did not outline how they intend to refine the proposals. Surprisingly, an additional consultation, termed an “Ethics Review,” has now been introduced. Details about the purpose and stakeholders involved in this review remain undisclosed.
The timetable going forward is now said to be as follows:
May 2023: Proposals to be refined using consultation feedback
June 2023: Council of Ministers to agree refined proposals
Summer 2023: Ethics review on proposals undertaken
Autumn 2023: Proposals to be further refined using ethics review
December 2023: Lodge proposals for debate
February 2024: States Assembly debate
March 2024: Law drafting to begin, if proposals approved by States Assembly
Isle of Man
On June 23, the First Reading of the Isle of Man’s Assisted Dying Bill took place in the House of Keys, the island’s lower house. Earlier that day, members of Tynwald attended a briefing by Trevor Moore, Chair of My Death, My Decision. During the briefing, Trevor emphasised the inclusion of people suffering intolerably from incurable illnesses in the Bill, which currently covers only those with a six-months prognosis. It is hoped that the eligibility criteria can be expanded at the amendment stage. The Second Reading of the Bill is expected in October.
Outside the UK and the Rest of the world
In Ireland, an all-party Joint Committee with a time-bound mandate was launched on June 13 to examine the issue of assisted dying. Over the course of nine months, this committee will thoroughly evaluate the subject and present recommendations on whether to proceed with assisted dying legislation by March 2024. Given that a general election is scheduled for March 2025, it is crucial to make progress within the current government’s term. End of Life Ireland (EOLI) and Irish Doctors Supporting MAiD (Medical Assistance In Dying) have jointly organised public information meetings across the country, which will resume in September 2023.
In France, President Macron is expected to introduce assisted dying legislation soon. A Citizen’s Convention overwhelmingly voted in favour of reforming France’s end-of-life laws.
In Portugal, assisted dying was legalised in May. It was approved by parliament four times after repeated vetoes from the president.
In Slovenia, enough signatures were collected in June to table an assisted dying bill.
Note: The information provided in this article reflects the current state of affairs up to July 2023 and may be subject to further changes and updates.
As the assisted dying inquiry in Parliament comes to an end, Humanists UK Assisted Dying Campaigner Nathan Stillwell reviews what was said, what was learned, and what remaining issues the committee needs to address.
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.
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.
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
Pictured: Motor Neurone Disease sufferer and assisted dying campaigner Noel Conway
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.
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.’
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.
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.”
Yesterday, the Assisted Dying Bill on the Isle of Man passed its first reading, an important stage in the process of legalising assisted dying for residents.
The Bill would give terminally ill people on the Isle of Man the choice to end their own life. Humanists UK welcomes its progress but hopes to see the eligibility criteria changed to include individuals who are incurably and intolerably suffering.
A series of jurisdictions such as Scotland, France and Jersey are moving to legislate on assisted dying. Ireland has also launched a special committee to examine this issue. With respect to England and Wales, the UK Parliament’s Health and Social Care Committee’s inquiry into assisted dying is making steady progress, having heard evidence from Switzerland today.
Through Humanists UK’s work with the Assisted Dying Coalition, it is supporting My Death, My Decision Isle of Man in its campaign for a compassionate law on the Island.
Humanists UK Assisted Dying Campaigner Nathan Stilwell said:
‘More and more jurisdictions are moving to legislate to allow people to have compassionate choices at the end of their lives. Evidence around the world is showing that a safe and workable assisted dying law is not only possible but absolutely necessary for human dignity.
‘As a humanist, I adamantly believe we all have a right to live our lives by our own personal values – and that should include the option of a compassionate death. Legalising assisted dying gives people insurance, it means they can live dignified and meaningful lives, and they can take control when their quality of life falls below a standard they chose to be acceptable.’
Notes:
For further comment or information, media should contact Humanists UK Assisted Dying Campaigner Nathan Stilwell at press@humanists.uk or phone 07456200033.
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.
Table 2 UK Residents with neurological diagnoses receiving an assisted death in Switzerland
Yesterday, the