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

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

Our patron, Jean Eveleigh, responds to the debate:

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

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

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

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

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

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

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

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

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

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

Disabled people do not oppose assisted dying:

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

The position of Disability Rights UK is:

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

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

We have international evidence that assisted dying safeguards work:

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

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

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

No correlation between disability and uptake of assisted dying.

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

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

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

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

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

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

Notes:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Notes:

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

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

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

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

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

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

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

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

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

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

One of the biggest conclusions of the report is:

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

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

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

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

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

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

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

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

They did listen to our evidence, saying: 

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

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

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

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

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

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

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

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

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

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

The law is forcing people to die early

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

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

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

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

The law is not clear

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

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

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

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

Our political process may hinder this important debate

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

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

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

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

Could a citizens’ jury be the answer?

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

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

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

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

Whatever happens, parliament must act.

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

The report says:

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

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

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

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

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

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

Notes:

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

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

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

Day: Monday 29 April

Time: 3.30pm to 4.30pm

Where: Parliament Square

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

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

RSVP

What to expect:

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

What to bring:

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

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

What can I do?

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

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

Where do I go?

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

RSVP: 

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

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

We look forward to seeing you there!

Former President of the Supreme Court, Lady Hale, has publicly announced her support for the legalisation of assisted dying – and that law changes should include those incurably suffering, and not just the terminally ill. My Death, My Decision, welcomes her support.

Lady Hale will speak at an event on the 26 June to commemorate ten years since the Supreme Court decision which denied Tony Nicklinson the right for help to die. As one of the justices involved in the historic ruling, Lady Hale will reflect on the significance of the Nicklinson case and its enduring impact on the discourse surrounding assisted dying.

Lady Hale said:

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

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

The Right Honourable Baroness Hale of Richmond, served as President of the Supreme Court of the United Kingdom from 2017 until her retirement in 2020.

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

“We are delighted that Lady Hale has supported our grassroots campaign for a compassionate assisted dying law. We’ve been clear since the start, people like Tony Nicklinson, who are experiencing distressing pain and suffering with no chance of a cure, should have the right to help to die. 

Tony Nicklinson would not have been helped by the recent assisted dying bills in the UK. These bills have been unnecessarily and arbitrarily restricted to people with six months left to live. The UK should strive to have the most compassionate law possible.”

Notes:

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

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

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

The Isle of Man moved one step closer to a compassionate assisted dying law today, as a parliamentary committee has published a supportive report on Dr Alex Allinson’s Assisted Dying Bill. My Death, My Decision welcomes this move, but urges politicians not to ignore people suffering unbearably from incurable physical conditions, like the late assisted dying campaigner Tony Nicklinson, who had locked-in syndrome and would not be eligible under the proposed legislation.

The House of Keys, the lower house of Tynwald, Isle of Man’s parliament, published the report made by a committee of five members. The assisted dying bill report scrutinised previous proposals and made several amendments.

Mrs Caine MHK expressed support for the inclusion of a line recognising that the assisted death should be based on ‘unbearable suffering’ and that eligibility should be based on having 12 months or fewer left to live, rather than six months as originally proposed. This is a step in the right direction, but My Death,My Decision  considers it should extend to those suffering unbearably from incurable physical conditions. 

This news comes on the same day the Assisted Dying for Terminally Ill Adults (Scotland) Bill has been published. My Death, My Decision welcomed the bill but similarly expressed support for it to go further.

Austria, Belgium, Canada, Switzerland, Luxembourg, the Netherlands and Spain have compassionate, working and safe assisted dying laws that allow people who aren’t terminally ill but are undeniably, unbearably suffering, the option of an assisted death. In Belgium, assisted deaths of people who aren’t terminally ill make up one in five of all assisted deaths.

Last month, we released a report that shows that half the assisted deaths of UK residents in Switzerland were of people who would not have been helped by a law limited to the terminally ill. 

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

“Today we have seen historic developments around the British Isles in the campaign for a compassionate, dignified assisted dying law, with both Scotland and the Isle of Man moving forward. Politicians on the Isle of Man should be commended for supporting the continued progress of Dr Alex Allinson’s Bill – reflecting the overwhelming public support.

Nevertheless, at My Death, My Decision we believe that competent adults who are intolerably suffering from incurable conditions  – like locked-in syndrome, or for example paralysed after an accident – deserve the choice of an assisted, dignified death. People like the late brave campaigners Tony Nicklinson and Paul Lamb. It seems likely that the Bill on the Isle of Man would exclude many such cases by being limited to the terminally ill only.”

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

“I welcome the report published by the Assisted Dying Committee. However, I’m very disappointed that if its recommendations are adopted, people suffering intolerably from incurable illnesses such as Huntingdon’s Disease, Parkinson’s Disease or Motor Neurone Disease will not have access to an assisted death. This seems to me to be a cruel and inhumane omission, and one which I hope will be remedied by compassionate and empathetic Members of the House of Keys in the debates to follow.”

 

Notes

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

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

The Assisted Dying for Terminally Ill Adults (Scotland) Bill has been published today. My Death, My Decision welcomes the bill and urges Scottish politicians to follow overwhelming public opinion by voting in favour of a Bill that will provide a compassionate and dignified end-of-life choice for their citizens. 

The Bill is limited to people who are terminally ill, with an advanced and progressive condition. Recent attempts to change the law in England have been limited to people who have six months left to live or fewer. This Scottish bill does not contain an arbitrary time limit on life expectancy, something we support.

Patients would need to have been a resident of Scotland for at least a year and would need the sign-off of two independent doctors. These doctors must have explained all feasible alternatives to the patient, including pain relief, hospice support and other palliative care packages.

Lib Dem MSP Liam McArthur is putting forward the Bill. MSPs will be given a free vote.

The Bill has been supported by our colleagues on the Assisted Dying Coalition, Humanist Society Scotland and Friends At The End.

Of the 14,038 responses to the consultation on the Assisted Dying for Terminally Ill Adults (Scotland) legislation, 76% of respondents were fully supportive. Our report recently revealed that 19 people from Scotland had an assisted death at Dignitas since 2002.  

Our supporter, ex-nurse Patricia Donoghue from Glasgow, suffers from PTSD following her husband’s death. Her husband, Kevan, died at age 64 from a rare bile duct cancer. After this shocking diagnosis, Kevan was determined to live and survive the cancer. But he died 18 months later after not eating or drinking for three weeks as a result of his illness. 

Patricia Donoghue from Glasgow, ex-nurse and supporter of My Death, My Decision said:

“We think of Britain as being advanced, but we are not. Leaving people to suffer in the final stages of their lives is far from advanced – it’s cruel. Kevan felt abandoned by God and ultimately by the system that wouldn’t help him leave this world without suffering. He accepted death, but why did he have to suffer like that for three weeks?”

I can’t change what happened to Kevan, but I want it to change for others in the future. People are suffering and having a horrible time of it, all being made worse by this cruel law. You can’t sit on the fence with this issue, it needs to change.”

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

“It’s stories like Patricia’s and Kevan’s that show why Liam McArthur’s assisted dying bill is so badly needed. I urge all Scottish politicians to listen to their story and vote in favour of a compassionate and dignified end-of-life choice. We continue to campaign for the same progress in England and Wales as we have seen in Scotland, reflecting overwhelming public opinion.

Competent adults who are intolerably suffering from incurable conditions  – like locked-in syndrome, or for example paralysed after an accident – deserve the choice of an assisted, dignified death. People like the late brave campaigners Tony Nicklinson and Paul Lamb. The Scottish Bill excludes many of them by being limited to the terminally ill only. But it is nevertheless welcome in excluding  any arbitrary life expectancy criterion, such as the ‘six months prognosis’ in recent bills in England and Wales.”

Notes

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.

Assisted dying proposals have been lodged in Jersey, making the Crown Dependency one step closer to a safe and compassionate assisted dying law. My Death, My Decision welcomes the proposals and looks forward to the fundamental debate on this vital issue.

The proposals include the right for people who are incurably suffering from a physical condition, or terminally ill, to have an assisted death. Terminally ill patients with six months left to live (or twelve months for neurodegenerative conditions) will have the right to an assisted death through ‘Route 1’, while those who suffering intolerably from an incurable condition will have access to ‘Route 2’ with additional safeguards.

In November 2021, in a landmark decision, The States Assembly of Jersey voted by 36 to 10 in support of the principle of legalising assisted dying for citizens of the island. 

Jersey previously voted for a more inclusive approach which extends to the terminally ill as well as individuals with an incurable physical condition resulting in unbearable suffering. This was the result of the Citizens’ Jury which published its findings in September 2021, and showed that an overwhelming majority of 78% were in favour of changing the law. 

Citizens Juries or Assemblies are used to engage citizens on a wide range of issues and can be used to inform Government policy and legislation. The Jury was selected at random and consisted of 23 residents who reflect the demographics of the island.

Depending on how votes proceed in the Isle of Man, Jersey could be the first jurisdiction in the British Isles to legalise assisted dying.

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

‘This news from Jersey is welcome indeed. My Death, My Decision has been supporting colleagues in the Assisted Dying Coalition, End of Life Choices Jersey, in their campaign, and our previous board member for religion gave evidence to the Citizens’ Jury that led to the parliamentary decision. 

It is welcome that the proposed legislation in Jersey will extend to the unbearably suffering as well as the terminally ill. Recent research by members of our Clinical Advisory Group shows that over half of the assisted deaths of UK residents in Switzerland would not have been helped by a law limited to those with six months left to live – the restricted model that has been considered at Westminster to date.

We urge Westminster politicians to take note and respect the overwhelming public support in England and Wales for assisted dying reform. My Death, My Death will continue to call for a compassionate assisted dying law reflecting proposals similar to Jersey,  giving choice, compassion and dignity to people suffering from conditions like Motor Neurone Disease and locked-in syndrome.’  

Notes:

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

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

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

The special Oireachtas committee in the Republic of Ireland has just published its final report which recommends that legislation should be introduced to allow for assisted dying. My Death, My Decision welcomes this major development in another jurisdiction neighbouring England and Wales, focusing attention on the lack of progress at Westminster.

Last month the UK Health and Social Care Committee released its own report on assisted dying which, disappointingly, didn’t deliver any recommendation for change.

The Oireachtas committee report made 38 recommendations overall, and outlines that people with incurable, irreversible, progressive and advanced illnesses that will cause death within six months should have access to an assisted death. This time limit should, however be set at 12 months for neurodegenerative conditions.

An important consequence of a law in the Republic is that Irish citizens (or ordinary residents for twelve months) would be eligible. This would allow Northern Irish applicants to be able to access an assisted death in the Republic by virtue of the Irish Nationality and Citizenship Act of 1956 and the Good Friday Agreement.

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

“This Oireachtas committee report on assisted dying takes a welcome, evidence-based and compassionate approach. The proposed narrow time criteria would, however, mean that many people suffering unbearably from incurable conditions like Locked-in Syndrome will be excluded. The politicians will doubtless want to explore this in developing the details. 

Politicians in the Northern Ireland Assembly at Stormont may want to move quickly to consider their own assisted dying law, given that their constituents would otherwise have access to assisted dying sooner in the Republic.

Overall, this report follows many others in outlining the overwhelming evidence in favour of assisted dying. Across the British Isles, people are united in wanting change. No-one should have to undergo an unnecessarily painful death when other countries are repeatedly showing that a more compassionate route is possible.”

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.