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.

A new report published today by the Assisted Dying Coalition shows the true inadequacy of our assisted dying laws in forcing many UK citizens to choose an assisted death in Switzerland. My Death, My Decision urges politicians to read this report and support an assisted dying law that recognises intolerable suffering and makes these journeys to Switzerland unnecessary.

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:

More affluent regions see higher rates of individuals travelling to Switzerland. This is hardly surprising, given the approximate cost of £15,000 to do so. Counties that are also further from an airport, meaning travel is significantly more difficult and expensive, often see fewer assisted deaths. 

The Assisted Dying Coalition, of which My Death, My Decision is a founder member, is the UK and Crown Dependencies coalition of organisations working in favour of legal recognition of the right to an assisted death. 

My Death, My Decision advocates an assisted dying law 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 report also highlights data on the conditions from which people who go abroad are suffering, in many cases being neuro-degenerative conditions like Motor Neurone Disease. Many of them would not be classed as terminally ill or as having less than six months left to live, so they would be outside the scope of every law that has been proposed in the UK so far. 

That is because those proposals have 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 fewer than six months left to live are eligible to choose an assisted death. Clearly, therefore,  this report highlights that any assisted dying law must ensure that eligibility criteria are based on suffering, not months left to live.

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

“This startling report by the Assisted Dying Coalition is further evidence that our current prohibition on assisted dying is outdated, discriminatory and unworkable. MPs will surely be concerned to know that some of their suffering constituents are fleeing abroad for an assisted death, while others who are not financially or physically capable of doing so must continue to endure avoidable suffering. We know that many politicians have constituents with conditions like 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 the late Tony Nicklinson and Paul Lamb, the courageous, suffering men with incurable conditions who fought for the right to receive assistance for their self-determined death through the courts and whose Supreme Court challenges remain landmark cases.”

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.

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Sir Keir Starmer, leader of the Labour Party, has pledged a vote on assisted dying in the next parliament if they are to win the next general election. My Death, My Decision welcomes this commitment, which could see assisted dying legalised in the term of the next Parliament.

Sir Keir made the commitment when speaking in a phone call with broadcaster Dame Esther Rantzen, who announced in December that she had joined the Swiss assisted dying centre Dignitas. 

Sir Keir told Esther: “I’m personally in favour of changing the law… I think we need to make time. We will make the commitment. Esther, I can give you that commitment right now.”

Picture by Andrew Parsons / No 10 Downing Street

When asked whether he’d like a vote to take place within the next parliament, Sir Keir replied: “Oh yes, definitely. I think Esther would agree with this.

“For people who are going through this or are likely to go through it in the next few months or years, this matters hugely and delay just prolongs the agony.”

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

“Sir Keir Starmer’s commitment to give time for an assisted dying debate in Parliament is huge progress towards more compassionate end-of-life choices for people suffering intolerably from incurable conditions. My Death, My Decision welcomes this bold statement  – assisted dying law reform is long overdue.

Voters from all parties desperately want the law change to change. It’s about time we stopped exporting compassion to Switzerland and gave people control of their lives and ultimately their deaths”

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.

There has not been a vote on assisted dying since 2015. 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 recently published its report on assisted dying. The report contained no direct recommendations for legislative change, but clearly outlines the evidence and should be used as a roadmap for the next parliament to legislate on assisted dying.

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. Westminster can learn much from them.

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 special Oireachtas committee on assisted dying in the Republic of Ireland is set to recommend that legislation should be introduced to allow terminally ill people the right to a dignified death on their own terms. My Death, My Decision welcomes this news, adding to the cases of Scotland, Isle of Man and Jersey in shining a spotlight on the lack of progress at Westminster.

Last week the Health and Social Care Committee’s assisted dying inquiry in the UK released their report. It did not make any recommendations for moving to an assisted dying law for England and Wales.

By contrast, the Irish Parliament’s Committee on Assisted Dying is expected to recommend that a law be introduced to allow assisted dying for terminally ill people. Those 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 people suffering from neurodegenerative conditions.

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 endu

ring unbearable suffering from an incurable physical condition. There should be no arbitrary life expectancy thresholds.

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

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

“This Oireachtas report should lay the foundations for a compassionate assisted dying law for Ireland. With laws progressing in Scotland, Isle of Man and Jersey too, it’s time politicians at Westminster realise that doing nothing is no longer an option. 

We urge them to support a law that will give adults of sound mind who are suffering intolerably from incurable physical conditions the right to make their own end-of-life decisions, without artificial life expectancy timeframes like six or twelve months.”

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 those who are terminally ill or intolerably suffering the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members, 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/2023/05/15/assisted-dying-inquiry-health-and-social-care-committee-takes-next-steps/