MDMD condemns inhumane lack of choice, as incurably suffering man is forced to starve himself to death

An incurably suffering man, who wants the option of a legal assisted death, has decided to end his life by starving himself to death – while the choice is still within his control to make.  

Michael Askham, a 59-year father of three and former nurse, suffers from motor neurone disease and is unable to walk, talk, or socialise as he used to. He now believes that if he does not act to end his life soon, his only prospects will be a slow, drawn-out, and painful death. 

Speaking ahead of his decision to die, Michael has urged MPs to vote in favour of assisted dying reform – and allow others in his situation more time with their loved ones. 

He said:

‘All elements of life have slowly been taken away from me. Socialising, singing, eating, drinking, running, walking, playing guitar, working and driving. Life is no longer giving me enough pleasure for me to wish to continue’. 

‘My wish is for MPs to support and push for progress towards assisted dying in the UK. I understand that some people could be seen as being at risk of exploitation when assisted dying is legalised. Countries with the law already in place have legal processes to protect vulnerable people’.

‘I would hate to imagine any of my children going through this experience in the UK’. 

Phil Cheatle the Lead Campaign Commentator for My Death, My Decision said:

‘It is barbaric that the only option available to those facing constant and incurable suffering, like Michael, is the inhumane process of starvation. There is a better and more compassionate way.’

‘More countries than ever, including Canada, now permit the option of an assisted death for adults of sound mind – showing that such changes in the law can be achieved in a safe and compassionate manner. For some, even the comfort of knowing that an assisted death is available if needed is enough in itself – as it enables them to be secure in the knowledge that they will not have to suffer more than they can bear.’ 

‘We need a change of law in the UK so that doctors can provide the end of life assistance that their patients want – excellent palliative care with the option of a medically assisted death when the best palliative solutions are inadequate.’

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Assisted Dying laws forced our mum to die without the right-to-say-goodbye, says grieving family

The family of an unnamed woman who travelled to Switzerland to die in secrecy have criticised the current ban on assisted dying for denying their family and close friends a right-to-say-goodbye. 

The family, who have asked not to be named, felt compelled to travel more than 1,000 miles by car and ferry to avoid police scrutiny and spent more than £10,000 after their relative, who had been diagnosed with motor neurone disease and who could no longer eat or speak, begged them to help her die with dignity. 

The family said they had felt anxious, that the woman’s GP, who had provided medical records, might realise what was happening and prevent their relative from traveling abroad. As a result, the family took extra precautions to maintain their secrecy, meaning the woman was unable to say goodbye to cherished friends and other family members – denying her and them closure, which would have been possible in other circumstances. 

Describing the sense of ‘constant anxiety’ and ‘fear’ that the family would be stopped at any moment, the woman’s daughter has spoken out in favour of changing the law on assisted dying, adding that the secrecy was a burden that only added to her grief. 

She said: 

‘I want to tell my manager at work, I want him to understand what we have been though, but I dare not. I am not ashamed of what we have done. It was the right thing for my mum’. 

Phil Cheatle the  Lead Campaign Commentator for My Death, My Decision said:

‘This case illustrates the tragedy of our current law.’

‘Those who merely want the right to die on their own terms are forced by our law to conceal their plans, out of fear of being discovered or prevented from exercising choice and control over how they die. The need for secrecy deprives both family and friends of saying goodbye in the manner they would wish. But the current UK alternatives of refusing treatment, refusing food and liquid, or taking one’s life unaided while you are still able, all seem far worse.’

‘The law clearly needs to change. More and more people are deciding that the compassionate assisted dying options, which are available in an increasing number of jurisdictions, such as Canada, are far preferable to ending one’s days in enforced suffering in the UK. We urge the Government to authorise an investigation into the current law, and ensure no-one else is forced to go through the anxiety of a secretive death’.

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Jersey will establish a Citizens ‘Jury’ on Assisted Dying

In a nationwide first, the Jersey Health Minister has said he will establish a public forum of 12 – 24 citizens to consider the issue of assisted dying reform. My Death, My Decision has welcomed the decision, which it is hoped will mark the beginning of a process to allow those who are incurably suffering or terminally ill to access a legal, safe, and compassionate assisted deaths. 

The proposed ‘jury’, which would consist of a randomly and representative sample of islanders, would be tasked with producing a detailed report and set of recommendations on assisted dying, after having listened to leading experts both for and against a change in the law. 

The latest move in Jersey follows after the Government had pledged to conduct a review into the current law on end-of-life practices – including assisted dying – and after My Death, My Decision’s partner in the Assisted Dying Coalition, End of Life Choices Jersey, found that more than 80% of islanders favoured a change in the law for those who are incurably suffering or terminally ill. 

The moves mirrors a similar approach which later led to abortion reform in the Republic of Ireland in 2016. 

Commenting on the decision, My Death, My Decision’s Chair Trevor Moore said: 

‘The current law on assisted dying isn’t working. It places an unjust financial and emotional burden on those who are incurably suffering or terminally ill, and in many cases forces adults to end their lives before they would otherwise wish.’

‘But whilst there is now overwhelming public support for a change in the law, parliamentary attitudes have stayed the same – despite major changes in other jurisdictions, including Canada. These proposals for a citizen’s jury are a huge step in the right direction, and send a clear message that assisted dying shouldn’t be left in the ‘too-hard to resolve’ category anymore. We thoroughly endorse this decision and will assist the panel in any way we can to ensure there is an open, honest, and evidence-based debate.’

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Do Alzheimer’s sufferers have to choose assisted dying too soon?

Leila Bell, an 85 year old Canadian, suffered from early stage Alzheimer’s disease. She died in August 2019 using the Canadian Medical Aid in Dying (MAID) legislation. However, in an in depth interview shortly before her death, she explains that she is angry that she had to end her life as soon as she did, because she was afraid that if she delayed, she might lose her mental capacity. Mental capacity at the time of an assisted death is one of the safeguards in the current Canadian MAID legislation.

In her video Leila Bell says: “If I had been able to do an advanced request, I would not have had to decide to make that decision to die now. … I have been forced to decide now because I fear that at some future time, I will not be able to request it due to the compromise in my brain being much more severe.”

Canadian MAID providers have drawn up guidelines on how to best help people like Leila. The Canadian government is considering extending the MAID legislation, possibly to include those like Leila Bell. In Switzerland, like Canada, those eligible for a medically assisted death must have mental capacity at the time of death. The Netherlands and Belgium permit euthanasia by an advance request, but there are very few cases where this happens.

Assisted dying in cases of dementia raises a number of issues. See this page for a detailed discussion.

Responding to the story, MDMD’s Lead Campaign Commentator, Phil Cheatle said:

‘It is easy to sympathise with Leila’s concern, but the issues involved are far from simple. It is a large step to ask someone else to decide, on your behalf, when to end your life. This is especially difficult for someone who is still conscious but lacks mental capacity.’

‘Dementia is now the cause of 1 in 8 deaths in England and Wales, a figure that rises to 1 in 4 deaths for women over 80. Advanced dementia is a condition many would wish to avoid. 88% of people consider the option of medically assisted dying to be acceptable for Alzheimer’s patients, before they lose mental capacity, in at least some cases. MDMD is watching developments in Canada closely in the hope that the UK can learn from their experience.’

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Germany’s top court overturns ban on physician-assisted dying

Germany’s constitutional court has ruled that a law forbidding professional assistance to die is unconstitutional, in a move that is being seen as a major victory for assisted dying campaigners.

The decision centred on a controversial 2015 law, which legalised the right for individuals to purchase life-ending substances for ‘altruistic motives’, but forbade doctors or other professionals from prescribing substances for ‘enterprise purposes’. The court found that to deny adults the right to professional assistance unlawfully denied them a ‘right to a self-determined death’. 

The judgment has been hailed as a major victory for right-to-die campaigners for clarifying the law for those who are terminally ill, since the court had already ruled in 2017 doctors could not always deny adults who were ‘seriously and incurably ill’ access to similar drugs.

Previously, the law had meant that any doctor who assisted a patient to end their life could face up to 5 years imprisonment, resulting in more than 120 people individually applying for life-ending substances to Germany’s Institute for Drugs and Medical Devices without any professional guidance. 

My Death, My Decision which campaigns for assisted dying for people who are terminally ill and incurably suffering, has welcomed the decision. My Death, My Decision is supporting Paul Lamb in his bid to change the law on assisted dying in the UK.

It will now be up to Germany’s government to propose legislation to bring the law into line with the court’s ruling.

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

‘Here in the UK we watch in frustration as more and more jurisdictions around the world settle upon laws that allow the incurably suffering or terminally ill to choose a dignified death at a time and place of their own choosing, surrounded by those they love and who love them. 

As a recent Westminster Hall debate on the subject of assisted dying showed, MPs know full well that they are out of kilter with public opinion – around 90% of the public now support a change in the law. Since Parliament last voted on the subject in 2015 there have been major developments in other jurisdictions that show the way: Canada, for example, introduced legislation in 2016 without any particular controversy, so that an assisted death is seen as one choice on a spectrum end of life options – with robust safeguards.

We at My Death, My Decision urge the Justice Secretary, Robert Buckland, to establish an independent inquiry (call for evidence), so that stories such as the oppression of the vulnerable, and of doctors being forced to take part in assisted deaths, can be shown as the scaremongering they are. Only in that way can those with hidden agendas be exposed and the British public acquire a right now available to around 150 million people worldwide.’

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Canada moves to broaden assisted dying law

The Canadian government has proposed changing the law on assisted dying to extend access for those who are not terminally ill.

Unlike some states in the USA and Australia, under Canada’s current 2016 law, the right to request an assisted death is not restricted to those with a life expectancy of 6 months or less. Instead, adults who are of sound mind can voluntarily request assistance to die if they suffer from a grievous and irreversible condition – provided their death is ‘reasonably foreseeable’.

Some Canadian assisted dying providers are now interpreting these criteria to include those in early-stage dementia, while the person still has mental capacity. This is similar to the approach taken in Switzerland by organisations such as Dignitas and Lifecircle.

Last year the Quebec Superior Court found the requirement of a ‘reasonably foreseeable death’ discriminated against those who are incurably suffering, but not from an illness that will cause death. The Government has now proposed changes to enable those who are incurably suffering the right to request an assisted death as well, without the need for their death to be ‘reasonably foreseeable’. This would be likely to include people with complaints similar to UK campaigners Debbie Purdy, Omid, Paul Lamb and Tony Nicklinson.

The proposed law would not, however, extend to cases where someone was purely suffering from a mental illness.

The Bill also proposes a ‘waiver of final consent for eligible persons whose natural death is reasonably foreseeable and who may lose capacity to consent before MAID can be provided’. (MAID – Medical Aid in Dying, is the term used in Canada to refer to Assisted Dying.) This waiver is important as some people require such strong medication to relieve their pain as they approach death, that they lose their mental capacity as a side-effect of the medication. The current Canadian law requires them to obtain MAID, if they request it, without this level of medication, which means they have to end their life sooner than they might wish. In situations like these it seems much more reasonable for people to be able to pass all the safeguarding checks before they lose capacity due to requiring high levels of medication. This waiver may also apply to those with dementia. (See this article for further discussion of assisted dying and dementia.)

Phil Cheatle, MDMD’s Lead Campaign Commentator said:

‘This is another very welcome development from Canada. The Canadian government is rightly considering modifying its assisted dying legislation to overcome some limitations. They are attempting to carefully protect vulnerable people while at the same time providing access to an assisted death for those who want to use it when this is the only way to end their suffering. Canada should now be seen as the country to watch as an excellent example of well-considered assisted dying legislation.’

‘Those who oppose this sort of careful, evidenced-based approach are forcing many to suffer against their will at the end of their lives, or to take drastic, unregulated and possibly illegal action themselves. This is totally unacceptable in a caring, compassionate society.’

MDMD is delighted that Dr. Stefanie Green, one of Canada’s leading MAID providers and the President of the Canadian Association of MAiD Assessors and Providers, will be giving a lecture hosted by MDMD and FATE in London in April 2020. Further information and tickets are available here.

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Distinguished Doctors and Philosophers urge BMA members to support assisted dying

Credit: https://ab.co/2Tfnjrm

A diverse range of thirty doctors, philosophers, academics, and campaigners have signed an open letter, which appeared in the Guardian today, urging members of the British Medical Association to support assisted dying in the ongoing survey.

The joint letter was organised by the UK Assisted Dying Coalition, of which My Death, My Decision is a founding member, and follows just days after the Royal College of GPs voted to maintain their opposition to assisted dying, despite a majority of GPs wanting to move to a neutral or supportive position. 

Among those who have signed the letter are My Death, My Decision’s Chair Trevor Moore, Professor A.C. Grayling, Professor John Harris, Dr Henry Marsh, Dr Wendy Savage, Melanie Reid MBE, Dr Michael Irwin, The Revd Dr Scott S McKenna, and Professor Raymond Tallis. 

The full letter and list of signatories can be found here. 

Trevor Moore the chair of My Death, My Decision said:

‘In the last decade, there has been an overwhelming shift in popular support for assisted dying, which the BMA’s policy has lagged behind. More countries than ever now have legal, safe, and compassionate assisted dying – and it is time we follow suit’. 

‘By choosing to remain opposed to assisted dying and retaining a position which closes down debate and discourse, the BMA will not be stopping the public or our decision-makers from continuing to consider reform. Instead, they will prevent themselves from constructively contributing to a national conversation and send a signal which risks alienating doctors from the wishes of their patients’. 

‘We were proud to have lent our support to the voices of doctors and leading ethicists who would like to see a change in the BMA’s policy, and hope doctors who support reason, compassion, and empathy will vote in favour of assisted dying’. 

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Royal College of General Practitioners maintain opposition to assisted dying

The Royal College of General Practitioners has maintained its 14-year opposition to assisted dying, despite a majority of GPs voting to support a change in the law or adopt a neutral stance.

The college announced the decision of its executive council, after surveying its 50,000 members on the topic last year.

More than 6000 GPs voted in the online poll:

  • 47% of respondents said that the RCGP should oppose a change in the law on assisted dying;
  • 40% of respondents said the RCGP should support a change in the law on assisted dying, providing there is a regulatory framework and appropriate safeguarding processes in place;
  • 11% of respondents said that the RCGP should have a neutral position and;
  • 2% of respondents abstained from answering

The results mean that the College will continue to lobby MPs against changing laws which make assisted dying punishable by up to 14 years in prison, despite a majority preferring to support reform or set out both sides of the argument.

The Royal College of General Practitioners has opposed assisted dying since 2005 and affirmed its opposition in 2014.

In 2013, after a similar survey, 77% of GPs voted to oppose a change in the law, 18% voted to adopt a neutral stance, and only 5% voted to support changing the law.

The news follows after the Royal College of Physicians voted to drop their longstanding opposition to assisted dying in a similar poll last year, and as members of the British Medical Association, the doctors’ trade union body, continue to vote on whether the BMA should change its stance on assisted dying.

The College will now not review the RCGP’s position on assisted dying for at least five years unless there are significant developments.

Trevor Moore chair of the campaign Group My Death, My Decision said: 

‘We are extremely disappointed that the executive council of the RCGP have decided to ignore the preference of a majority of GPs to either support assisted dying or adopt a neutral stance. This seems undemocratic, given that those who voted in support would obviously agree with at least a neutral position’.

‘The overwhelming shift in support for assisted dying among GPS reflects a wider trend across our country, as nearly 90% of the public now support legal, safe, and compassionate assisted dying.

Whilst more countries than ever have now legalised assisted dying, including Canada, and demonstrated that the best way to protect everyone is through an open and robust system of safeguards, it is disheartening that the RCGP has adopted a position which will continue to silence many in the medical community who have a conscientious commitment to respect their patients’ autonomy and exercise compassion for those who are incurably suffering or terminally ill.’

‘The current law on assisted dying simply isn’t working. It forces those who are incurably suffering or terminally ill to suffer, or choose to die abroad – often putting their loved ones at risk of prosecution. There is a better way forward. We will continue to campaign for the adoption of a system akin to that in Canada.’

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Dark money anti-assisted dying ad taken down from Facebook

A Facebook advertisement by the anti-assisted dying organisation Our duty of care UK has been taken down for failing to disclose who paid for it. 

The advert, which encouraged doctors to vote against changing the British Medical Association’s stance on assisted dying, was seen by more than 3,000 people before it was removed by Facebook. 

The group ‘Our Duty of Care UK’ now states on its website that it is funded in part by the anti-assisted dying group Care not Killing, though reportedly failed to disclose any connection when it unsuccessfully lobbied the Royal College of Physicians last year against dropping their long-standing opposition to assisted dying. 

The news that anti-assisted dying advertisements have been funded by undisclosed backers follows after it was reported last year that dark money groups – who campaign to restrict abortion rights in the USA – had been funding campaigns against assisted dying in the UK. 

According to Facebook’s website, the advert ‘ran without a disclaimer. After the ad started running, we determined that the ad was about social issues, elections or politics and required the label. The ad has been taken down.’ 

Trevor Moore the chair of the campaign group My Death, My Decision said:

‘Assisted dying is a complex and emotive topic, which demands sensitivity and careful discussion. It is incumbent upon those who advocate either for and against changing the law to make sure we hold ourselves to the highest standards and engage in an open, transparent, and honest debate.’

‘To gain trust in the public debate we all need to ensure that statements are supported by verified evidence and are not alarmist or ideological. That means keeping sight of what drives the debate – compassion for real people.’

‘It is a national disgrace that adults of sound mind, who are incurably suffering or terminally ill, do not have the benefit of a law that gives them the option to choose how and when they die. But, there is a better way forward. New evidence from countries, including Canada, demonstrates a balance between respecting autonomy and robust safeguards can be achieved.  I encourage doctors who believe in empathy and dignity to vote in support of legal, compassionate, and safeguarded assisted dying.’

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MDMD urges BMA to vote in favour of compassion and empathy

My Death, My Decision has called on the British Medical Association (BMA) members to consider compassion and empathy by voting in favour of assisting dying in the association’s consultation which closes on 27 February. 

Last year, the BMA announced it would survey its members after a motion was passed at its annual policymaking meeting to hold a consultation and ‘support patient autonomy’. 

The BMA had previously adopted a neutral stance on assisted dying in 2005 but then changed and became opposed in 2006. This is the first time all 160,000 members of the BMA will be polled on the issue. 

Later this month, the results of a similar consultation by the Royal College of General Practitioners will be announced. 

Doctors will be asked whether the BMA should actively support, oppose, or neither actively support nor oppose (take a neutral stance) on a change in the law to permit doctors to prescribe drugs for adults of sound mind, who are either incurably suffering or terminally ill, to end their life. The survey will similarly ask what position members think the organisation should take in regard to doctors administering lethal substances (often known as euthanasia). 

Dr John Chisholm, BMA Medical Ethics Committee chair, said:

‘Doctors and medical students have a particular interest in discussions around legislation because any change in the law would impact on them not just personally but professionally. Therefore, this poll will allow us to gather information about the breadth of views held by our membership, which will then inform any future policy decisions and how we respond to any proposals for a change in the law.’

MDMD urges BMA members to vote in favour of assisted dying reform, and for others to encourage their doctors to support a change in the law. 

Trevor Moore chair of the campaign group My Death, My Decision said: 

‘We strongly welcome the British Medical Association’s decision to give their members a say on this issue. 

The right to choose how, where, and when we die is a fundamental human right, and it is unacceptable that the law forces those facing unbearable pain or terminal illness to suffer in ways that often cannot be palliated. More than one person a week now travels from the UK to end their life in Switzerland – this is double what the number was five years ago. 

There is a better way forward. New evidence from countries, including Canada, demonstrates that a balance between respecting autonomy and robust safeguards can be achieved. We urge all doctors who believe in reason, compassion, and empathy to support a change in the law.’

NOTES

For further comment or information or requests for interviews, please contact My Death, My Decision Campaigns and Communications Manager Keiron McCabe at keiron.mccabe@mydeath-mydecision.org.uk or phone 020 7324 3001. 

More about the BMA’s consultation

The BMA is a trade union representing and negotiating on behalf of 160,000 doctors in the UK. In 2019, at the BMA’s main policymaking meeting members voted for a motion to poll members on whether the association should adopt a neutral position on assisted dying. 

The BMA’s consultation will run from 06 February until 27 February and is being organised by the independent organisation Kantar. 

Members will be asked whether they believe the BMA should actively support, actively oppose, or neither actively support nor actively oppose (take a neutral stance on) a change in the law to permit doctors to prescribe drugs for eligible patients to self-administer to end their own life. They will also be asked whether the BMA should actively support, actively oppose, or neither actively support nor actively oppose (take a neutral stance on) a change in the law to permit doctors to administer drugs with the intention of ending an eligible patient’s life.

Results from the survey will be published ahead of the ARM, which takes place in Edinburgh from 21 to 25 June.

2019 Motion

That this meeting notes the recent decision by the Royal College of Physicians to adopt a neutral position on assisted dying after surveying the views of its members, and:
i)   supports patient autonomy and good quality end of life care for all patients;
ii)  recognises that not all patient suffering can be alleviated;
iii) calls on the BMA to carry out a poll of its members to ascertain their views on whether the BMA should adopt a neutral position with respect to a change in the law on assisted dying.

The law on assisted dying in the UK

Under section 2(1) and 2(2A) of the 1961 Suicide Act, it is unlawful in England and Wales to encourage or assist someone to end their life. Anyone found guilty of an act ‘capable of encouraging or assisting the suicide or attempted suicide of another’ can face up to 14 years’ imprisonment. 

Recent updates 

Assisted dying is now permitted for terminally ill and incurably suffering people in Canada, Belgium, Italy, Luxembourg, and the Netherlands. It is also permitted specifically for terminally ill people in Colombia, ten US jurisdictions, and the Australian states of Western Australia Victoria.

In January 2019, MPs debated in a Westminster Hall debate proposals for an independent call for evidence into assisted dying. MPs from all major political parties called for the Secretary of State for Justice, Robert Buckland QC MP, to initiate a formal call for evidence on the impact of the UK’s existing law. 

Last year two members of My Death, My Decision living different conditions that mean they are facing incurable suffering separately applied for permission to judicially review the law on assisted dying in England and Wales. Paul Lamb, who is paralysed from the neck down, was refused permission from the High Court in December 2019; Phil Newby, who suffers from motor neurone disease, was denied permission from the Court of Appeal in January.

About My Death, My Decision

My Death, My Decision is a grassroots not-for-profit organisation that campaigns for a compassionate and balanced approach to assisted dying in the UK. 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.

Unlike some right-to-die organisations, My Death, My Decision does not believe that assisted dying should be restricted to only those who are terminally ill with a prognosis of six or fewer months left to live. Just as compassion for others motivates people to support assisted dying for those who are terminally ill, we believe it should also underscore support for those facing incurable suffering, as were the late Tony Nicklinson and Debbie Purdy, and now Paul Lamb and Phil Newby. 

Read more about how nearly 90% of the public support an inclusive change in the law. 

Read more about research which found that more than one British citizen a week now ends their life in Switzerland. 

Read more about My Death, My Decision’s campaign for an inclusive change in the law:

http://www.mydeath-mydecision.org.uk/

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My Death, My Decision is a company limited by guarantee, registered in England company number 11758121 and located at Unit A 39 Moreland Street, London, EC1V 8BB.