MDMD

My Death, My Decision has officially launched a campaign group on the Isle of Man. The grassroots group Let Me Choose will become My Death, My Decision Isle of Man and will campaign to legalise assisted dying on the island for the terminally ill and incurably, intolerably suffering.

Our chair, Trevor Moore, will speak at a public meeting on the Isle of Man at the Manx Legion Club, Market Hill in Douglas, at 7.30pm on Monday 20th March. The next day he will address members of Tynwald, Isle of Man’s Parliament.

Last year, members of Tynwald voted 22 to 2 to allow an assisted dying Bill to be introduced by Dr Alex Allinson.

The Bill would allow terminally ill, mentally competent adults the choice of an assisted death. A public consultation on the Isle of Man closed recently and a draft Bill should be available by the end of the year.

If you live on the Isle of Man and would like to get involved, please contact Vicky Christian at vickychristianmdmd@gmail.com.

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

“It is refreshing to see people and politicians on the Isle of Man engage with the issue of assisted dying so respectfully and wholeheartedly. My Death, My Decision Isle of Man will achieve great things with Vicky Christian at the helm and I look forward to all the campaigning our grassroots organisation will be able to do, thanks to this new group.”

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

“People on the Isle of Man desperately want to see a change in the law that allows people who are dying in pain, suffering and indignity to have a choice at the end of their lives. There’s no good reason on earth why adults who are suffering from an incurable, intolerable disease should be forced to continue living against their will.

I’m thankful to have the support of My Death, My Decision and the Assisted Dying Coalition. Together, we will bring a compassionate change in the law.”

My Death, My Decision has argued that Wales should have the power to legislate on assisted dying, in their response to the Welsh Government’s Independent Commission on the Constitutional Future of Wales. Commissioned by the Welsh government, the consultation sought views on how Wales should be governed in the future.

My Death, My Decision believes that Wales should be run in a way which enables the Welsh people to live with dignity and in full autonomous control over their own lives. Currently, an archaic law dictated by Westminster prevents the Senedd from legislating on assisted dying. While assisted dying should be understood as a matter of individual rights and health, the powers of justice and policing are not devolved to Wales and so the Senedd is unable to legislate on it. This sets Wales apart from Scotland, which is moving forward with its assisted dying bill.

My Death, My Decision recently exposed the case of Sue Lawford, a Wales resident who was arrested and investigated for six months for accompanying Sharon Johnston, a tetraplegic woman, to Dignitas in Switzerland to end her life. Sue was arrested at 5.30am on the 16th February, interrogated by police, detained for 19 hours, and then subjected to a six-month investigation which has since been dropped. Sue’s arrest was especially inappropriate given that previous police guidelines have stated: “Due to the sensitive nature of such an investigation, the police should seek to interview such a suspect under caution as a voluntary attendee unless their lack of cooperation or demeanour makes arrest necessary”. 

We recently revealed that the Dyfed Powys Police wasted over £7,000, in addition to regular police hours that should have been spent elsewhere, on Sue’s arrest and investigation.

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

“93% of the public in Wales support the legalisation of assisted dying, higher than the 90% support for legalisation enjoyed in England. The people of Wales should have the power to turn their belief in the legalisation of assisted dying into law, just as the people of Scotland are able to do.

The current split between legislating on end-of-life health and social care matters, which is devolved, and assisted dying, which is not, serves only to highlight the impression that these matters are in opposition. Other countries with legalised assisted dying have shown that they are best treated as part of the same spectrum. 

Everyone deserves the right to make choices about the end of their lives, and no one deserves to suffer.”

Read My Death, My Decision’s response to the consultation.

Read our response to ‘making justice work in Wales’ 

In their first indicative ballot, members of the Citizens’ Jury on assisted dying in France voted overwhelmingly in favour of legalising assisted dying. Almost 75% of participants voted in favour of the principle of assisted dying being available. 66% voted in favour of allowing a healthcare professional to end a life. 45% voted for the criteria to extend to people intolerably suffering from an incurable condition, 20% voted for the criteria to be limited to people whose death is foreseeable in the short or medium term, and 35% abstained.

There are three more sessions of the citizens’ jury before they submit their final proposals to the French government on the 19th of March.

French President Emmanuel has said he hopes to introduce a new legal framework on assisted dying by the end of 2023. He has not yet ruled out a parliamentary vote or a referendum on the jury’s propositions.

Run by the Economic, Social and Environmental Council (CESE) the ‘Convention Citoyenne’ is made up of 185 French citizens who are representative of the general population. Over the course of 9 sessions, the participants listen to speakers, discuss research, debate, and vote on a series of questions about end-of-life choices.

My Death, My Decision Chair Trevor Moore said:

“While we await the outcome of the inquiry on assisted dying by the Health and Social Care Committee at Westminster, the citizens’ assembly in France is pointing the way for a balanced approach to addressing this profound issue. After all, the debate among many politicians is polarised, so an assembly whose decisions will reflect the will of the public at large seems a neat way to absolve them from responsibility.

England and Wales are encircled by progress in Scotland, Jersey and the Isle of Man and being left behind by increasing numbers of countries that allow assisted dying in wider Europe, North America, Australia and New Zealand. It’s time for us to stop wavering and proceed to a compassionate law that allows choice for the terminally ill and those suffering unbearably from incurable conditions.”

Notes:

You can read the Economic, Social and Environmental Council (CESE)’s full press release here: https://lecese.fr/actualites/convention-citoyenne-cese-sur-la-fin-de-vie-les-citoyens-votent-des-premieres-orientations

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 non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

The Health and Social Care Committee has launched an inquiry into assisted dying in England and Wales. My Death, My Decision has strongly welcomed the news and hopes to work constructively with the Committee.

My Death, My Decision is campaigning for an assisted dying law that will allow adults of sound mind who are either incurably, intolerably suffering, or terminally ill, the right to have an assisted death. We hope the inquiry will examine jurisdictions like Spain, Austria and Canada that have laws that are not restricted to only people who are terminally ill. 

Assisted dying has not been properly examined by parliament since the House of Lords’ committees in 2004. In the 18 years since Parliament last investigated the matter, public and professional opinion have changed considerably. A poll by the National Centre for Social Research (NatCen) found that around 90 per cent of the British public favours a change in the current law. The British Medical Association (BMA) and the Royal College of Nursing (RCN), opposed a change in the law during the 2004 parliamentary inquiry but both have since re-evaluated their stance and changed their position to neutrality – as has The Royal College of Physicians. 

In the last two decades global opinion has shifted in favour of the option of assisted death. In 2004, only 38 million people around the world lived in jurisdictions where assisted dying was legal, whereas currently it has increased ninefold to more than 360 million people worldwide.

My Death, My Decision Chair Trevor Moore said:

‘I am so glad that parliament is at last examining assisted dying – something for which we have been campaigning for years. We know that many of the people we support, people who are incurably suffering and people who have witnessed a loved-one’s painful death, will welcome this news. We look forward to working with the committee and I hope they look at all the international evidence that shows that safe, compassionate assisted dying laws are possible.

‘Parliament will be following in the footsteps of Jersey, the Isle of Man, Scotland, Ireland and now France in finally tackling this issue. People who are incurably suffering deserve the right and freedom to make decisions about the end of their lives.’

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 non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

The Health and Social Care Committee looks likely to launch an inquiry into assisted dying in the new year. The committee’s chair, Steve Brine MP said to his constituents: “look out for what will be a high profile piece of work on assisted dying/suicide in the New Year.” My Death, My Decision welcomes this news and looks forward to working constructively with the committee.

Assisted dying has not been properly examined by parliament since the House of Lords’ committees in 2004. In the 18 years since Parliament last investigated the matter, public and professional opinion have changed considerably. A poll by the National Centre for Social Research (NatCen) found that around 90 per cent of the British public favours a change in the current law. The British Medical Association (BMA) and the Royal College of Nursing (RCN), opposed a change in the law during the 2004 parliamentary inquiry but both have since re-evaluated their stance and changed their position to neutrality – as has The Royal College of Physicians. 

Sharon Johnston (left) with Sue Lawford (right) at Dignitas, Switzerland

My Death, My Decision can now disclose that one of our members was earlier this year arrested at 5.30 am, put in a cell and held for 19 hours, and then subjected to a six-month police investigation, for escorting a woman to receive a medically assisted death in Switzerland.

The person she assisted was 60-year-old Sharon Johnston from Cardigan, who became tetraplegic following a fall at her previous home in Aberystwyth. Sharon spoke publicly about her wish to have an assisted death in 2021 BBC documentary When Would You Want to Die?

Sue Lawford, Co-chair of My Death My Decision Wales, originally from London and now living in Cardiff, says that the saga shows the urgent need to reform the UK’s assisted dying laws. Sue will be talking to MPs and Lords about her experience today at My Death, My Decision’s event in parliament.

Sue accompanied Sharon on 14 February to Heathrow Airport, en route to Dignitas in Switzerland. On the way to the airport Sharon was contacted by Dyfed Powys Police and Social Services several times; she reassured both that she was okay.

Sue accompanied Sharon to Dignitas to provide support. When Swiss Police arrived at Dignitas, Sue and Sharon reassured them and they were satisfied there was no illegal activity.  They left without taking any action. Sharon then had a calm, peaceful death early on the morning of 15 February. Her last words were: ‘This is a lovely feeling.’

The same day, Sue returned home to Cardiff. On 16 February at 5.30 am she was woken by the Police. Sue was arrested for assisting a suicide and was placed in the back of a police van and driven to Cardiff Bay Police Station. Meanwhile, police officers searched her house for over four hours. They seized her phone, electronic devices, passport, and documents relating to her work. They also took away electronic devices belonging to her husband, who had no connection whatsoever with the case.

Sue was kept in a police cell for 16 hours, before being interrogated by Dyfed Powys Police, with a duty solicitor in attendance. After over 19 hours in custody, she was released ‘pending investigation’. That investigation was dropped after six and a half months, due to ‘evidential difficulties’. Sue says being under arrest for such a long time was detrimental to her mental health.

Her possessions, and those of her husband, were only returned at the end of the investigation. 

According to data from YouGov, 79% of people in the UK believe that people who provide practical help to someone to obtain a medically assisted death abroad should not face prosecution.⁽¹⁾

My Death, My Decision supports the right to die for individuals who are of sound mind, have a clear and settled wish to end their life, and who are terminally ill or incurably suffering. Sharon was not terminally ill as a result of her tetraplegia. Swiss law allows both groups the right to die.

Sue Lawford said:

‘The entire situation caused immense stress and heartache for Sharon on an already difficult journey. It has caused me immense stress and anxiety since our return. The BBC had filmed an entire documentary on Sharon, whose decision was as clear as day. 

‘A change in the law in the UK is long overdue. And it shouldn’t be limited to the terminally ill. Sharon’s situation was intolerable, yet could have continued for many years, and there are countless others like her without the means to end their lives on their own terms.’

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

‘Sharon’s and Sue’s stories show why our current laws are completely broken. The lack of compassion they show in forcing an incurably suffering person to travel abroad for an assisted death, in the most difficult of circumstances, is shameful. For that to be followed by a heavy-handed criminal investigation of someone who acts out of the best of motives in providing help is appalling. That is why we urgently need a compassionate assisted dying law for England and Wales.’

Notes

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

Sue Lawford is available for interview upon request.

(1) All figures are from YouGov Plc. Total sample size was 1,731 adults. Fieldwork was undertaken between 17th – 18th March 2022. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

Read more about My Death, My Decision’s campaign.

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.

President Emmanuel Macron announced he will launch a citizens’ assembly on assisted dying. The French President showed his support for assisted dying while campaigning in the presidential election. Further details about the ‘convention citoyenne’ will be announced on Tuesday 13th September. Macron called it a move towards “more humanity.”

Macron had previously said he  would support having the Belgium model of assisted dying in France. Belgium legalised assisted dying in 2002 by allowing it for adults who experience ‘constant and unbearable physical or mental suffering that cannot be alleviated’. This is broadly similar to the law that we are advocating for, along with the Assisted Dying Coalition.

In 2021, a citizens’ jury on the island of Jersey overwhelmingly supported the introduction of assisted legislation, with 78% voting in favour. This led to Jersey’s States Assembly approving assisted dying ‘in principle’ and official legislation is expected to be introduced in 2023.

The Scottish Parliament has just released a report showing strong support for assisted dying. 78% of the respondents to a consultation in 2021 supported a proposed Assisted Dying Bill by Liam McArthur MSP. 

According to France Info, Macron told Jean-Luc Romero, honorary President of the Association for the Right to Die with Dignity ( l’Association pour le Droit de Mourir dans la Dignité – ADMD), that he is committed to passing an assisted law before the end of 2023.

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

“The welcome announcement by Emmanuel Macron of a citizens’ jury on assisted dying for France holds a mirror up to the inaction of our government in addressing this fundamental human rights issue. His commitment to put political weight behind it should shame our politicians into respecting the opinion of the vast majority of the UK population who want a compassionate assisted dying law.

The time for procrastination is over and we call on the new Justice Secretary to instigate a Parliamentary inquiry or to set up a citizens’ jury, following the examples of Jersey, and now France.”

Today sees the long-awaited publication of the Consultation report on a proposed assisted dying law for Scotland. An astounding 14,038 responses were received, the largest number ever for any Member’s Bill in that country.

Support for Liam McArthur’s proposal was unequivocal: 76% of respondents were fully supportive. This is in line with many opinion polls that have shown a comparable or higher level of support for assisted dying in the UK as a whole.

Encouragingly for My Death, My Decision – since what happens in Scotland will have a bearing on the debate in Westminster – many said they think a wider group of people should be able to choose an assisted death than the intended definition of ‘terminally ill’ would allow for. In other words, the law should extend to people such as those with potentially longer-term degenerative conditions, such as Motor Neurone Disease, Parkinson’s and forms of dementia.

A notable difference between the McArthur proposal and Baroness Meacher’s failed Bill in Westminster is that ‘terminally ill’ will not have an arbitrary life expectancy attached – the Meacher Bill would, if passed, have extended only to those with six months or fewer to live.

One of the most common reasons given by the 21% who fully oppose the proposal was a fundamental religious belief that human life is sacred and must not be intentionally ended under any circumstances. We understand that the Right to Life organisation co-ordinated a mass response of similar responses on that basis – no doubt facilitated by the lack of any geographical limitation on those who could respond.

The proposed Bill requires that life-ending medication must be self-administered. A number of respondents made the point that some people who would wish to choose an assisted death would not be able to take the medicine themselves. But the issue is wider than that: in Canada, where there is an option of a lethal injection administered by a health professional, over 99% of applicants for an assisted death choose that. That is an issue that will need further investigation as the Bill progresses.

Liam McArthur now has one month in which to find 18 MSPs to support his Bill, following which he will be entitled to introduce it into the legislative process. In theory the Scottish government can instead say it will take the matter over as government business, but this is thought to be unlikely.

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

“The overwhelming 76% support shown for Liam McArthur’s proposal in Scotland is to be welcomed, though it is no surprise, given what we have seen from many opinion polls in recent years. It is also encouraging to see not only that the proposal suggests no arbitrary six month life expectancy criterion for a person to be eligible, but also that so many respondents support a wider law that reflects what My Death, My Decision campaigns for.
The progress made in Scotland on this important matter of social justice shines a light on the woeful inaction on the part of politicians in Westminster. We urge the Justice Secretary to establish a formal inquiry for England & Wales so that evidence can be heard and scrutinised, with legislation to follow.”