Legal Action

Court of Appeal refuses Paul Lamb the opportunity to challenge the law on assisted dying

 The Court of Appeal has rejected a bid from Paul Lamb to challenge the law banning assisted dying, in a judgment expected to end further legal cases for the foreseeable future. We are disappointed at the decision and urge Parliament not to allow this ruling to become the last word on assisted dying. 

Paul, a 65-year old former builder, now a patron of My Death, My Decision, has been paralysed from the neck down since 1990. He is campaigning to change the law on assisted dying and wants the right to die if his pain ever became too much to bear. 

My Death, My Decision had been supporting Paul’s legal case and would have sought to intervene if he had been granted permission to pursue it. It campaigns to legalise assisted dying across England and Wales for people who are terminally ill and incurably suffering, like Paul, who have made a clear decision, free from coercion, to end their lives. 

Paul’s lawyers had argued that the current ban on assisted dying, which affects those who are physically unable to end their lives (e.g. by going to Switzerland), discriminated against Paul as a disabled person and therefore infringed his human rights under Article 14 of the European convention of human rights.  

However, the Court of Appeal decided not to grant Paul permission to bring his case to a full hearing, meaning that it ended before Paul was able to make his full arguments. 

Dismissing his appeal, Lord Justice Nick Phillips said that previous cases had established assisted dying was now ‘a matter for Parliament, not the courts’. 

Speaking after the decision, Paul said he was ‘devastated’ by the judgment but was determined to ‘continue fighting’ to change the law. Rebuffed by the courts, Paul is now supporting My Death, My Decision’s campaign for an inquiry and has called on the Secretary of State for Justice to instigate a call for evidence or call on Parliament to do so. 

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

‘Following this latest rejection of assisted dying by the Courts, the spotlight falls squarely on Parliament. With public opinion overwhelmingly in favour of a compassionate law for the UK, politicians are out of kilter with those who elected them. To dispel the often alarmist propaganda promulgated by opponents, My Death, My Decision supports Paul Lamb in his call for a public inquiry. 

We can see as we look to other countries how a compassionate law with robust safeguards can attract and increase public trust – in those that have introduced a law, public support remains high.’

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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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Assisted dying campaigner Phil Newby refused permission by Court of Appeal

Phil Newby has been denied permission by the Court of Appeal to challenge the UK’s prohibitive law on assisted dying. 

Phil, 49, a father of two and member of My Death, My Decision, suffers from the degenerative condition motor neurone disease. His legal case had raised over £48,000 in donations from the public and had asked for the right to undertake a detailed examination of the evidence on assisted dying, and the ability to cross-examine expert witnesses. 

In November, he lost his High Court case, with judges saying court was ‘not an appropriate forum for the discussion of the sanctity of life’. 

The latest development follows shortly after the Secretary of State for Justice, Robert Buckland, signaled an interest in initiating a call for evidence on assisted dying – which Mr Newby has pledged to support by providing over nine-box files of evidence in support of a change in the law. 

Reacting to the Court of Appeal’s decision, Phil said:

‘Whilst I am thoroughly disappointed that the Appeal Court has refused my case a hearing, this decision has made it clear that judges will not engage on the issue of assisted dying, which means that it is down to Parliament to act.’

‘There is an abundance of evidence demonstrating the impact that the current law is having on families like mine up and down the country, and of safe practice in the many other countries that developed laws that provide dying people with choice. With the courts refusing to even hear cases like mine, now is the time for MPs to take really account of that evidence and consider how our cruel current law can work better for patients and families. An intelligently crafted assisted dying law is desperately needed.’

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

‘We find the decision of the Court truly frustrating’ 

‘Not only is the current law out of step with the modern values of our country, denying those like Phil or Paul Lamb – who has a separate case – the dignity, empathy, and compassion they deserve to die on their own terms,  it clearly no longer represents the view of an overwhelming majority of the public. The expectations all throughout this case was that the court would be willing to engage with reasoned and balanced evidence – but having failed to do so, it is now the responsibility of our Government to initiate a call for evidence – which we urge the Secretary of State now swiftly to do .’ 

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High Court refuses permission for Paul Lamb’s right-to-die case

Today, the High Court has rejected permission for Paul Lamb, a severely disabled man, to challenge the law on assisted dying. 

Paul, who is paralysed from the neck down, requires 24-hour care, by a team of seven carers, who wash and feed him and support him in his day-to-day functions. 

In rejecting permission for his case, Lord Justice Dingemans and Mrs Justice Laing said that the decisions of previous assisted dying cases provided weighty reasons to justify the current ban on medically assisted dying. 

Paul, who is a member of the campaign group My Death, My Decision, argues the current law – which prohibits any assistance under threat of up to fourteen years’ imprisonment – breaches his human rights by discriminating against those who are unable to end their life due to a disability. 

He will now have the opportunity to appeal the decision to the Court of Appeal. 

According to the UK Assisted Dying Coalition, more than one person a week now travels to Switzerland from Britain for a legal assisted death, which costs around £10,000. 

In 2014, alongside Jane Nicklinson, the widow of locked-in sufferer Tony Nicklinson, the former builder from Leeds lost a case before the UK Supreme Court, which had argued the current law breached the right to a private life of those in his position. 

However, the Supreme Court held that Parliament must be afforded an opportunity to debate the issue, before the courts decided whether to declare the current law incompatible with Paul’s human rights and those who find themselves in a similar position. 

Robert Ince, a spokesperson for the campaign group My Death, My Decision said: 

‘We are extremely disappointed that the courts have once again failed to support the human rights of Paul and give hope to many like him who suffer intolerably.

New evidence from progressive countries including Canada has demonstrated that a transparent and robust set of safeguards is the best way to protect everyone, and that compassion need not come at the expense of protecting others. Nearly 90% of the public now believe adults facing incurable suffering deserve to be treated with respect, dignity, and compassion – but this cannot happen until the law changes.

We will continue to support Paul in his fight against this manifestly unjust law.’

About My Death, My Decision 

My Death, My Decision is a grassroots non-profit that campaigns for a balanced and compassionate approach to assisted dying in the UK. We believe that everyone deserves access to excellent palliative care but that adults of sound mind, who are either terminally ill or facing incurable suffering, should have the right to a peaceful, painless, and dignified death. 

Unlike some right-to-die organisations, we don’t believe that the right to control the manner and timing of your own death should be restricted to those with six or fewer months left to live. Through the work of our members, supporters, patrons, and activists we help to broaden the public debate on assisted dying and seek to secure changes in the law.

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

Read more about how one Briton 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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Phil Newby denied permission to challenge the UK’s ban on assisted dying

Phil Newby, an incurably suffering father of two, has been denied permission to challenge the UK’s ban on assisted dying. 

In a handed down judgment from the High Court, Lord Justice Irwin and Mrs Justice May ruled against permission to judicially review the UK’s ban on assisted dying.

A member of the right-to-die group My Death, My Decision and suffering from the degenerative condition motor neurone disease, Phil had already raised over £42,000 in donations from the public by the time of his judgment.

As a result of his condition, Phil is unable to dress himself, wash, hold a pen, or move beyond two rooms within his home without assistance. Seeking the right to control the manner and timing of his death, he had invited the court to examine a growing body of international evidence in support of assisted dying and asked or the right to cross-examine expert witnesses.

In the handed down judgment, the court said: ‘It is impossible not to have very great sympathy for the situation in which Mr Newby finds himself. His clear and dignified statement compels admiration and respect … Undoubtedly the HRA [Human Rights Act] has altered the relationship between the judiciary and Parliament. But this does not of itself impart or ascribe to the court expertise or legitimacy in the controversial questions of ethics and morals regarding the sanctity of life. These differences may mean that even in cases where the courts are empowered to act, they should be hesitant to do so.’

Ultimately holding that the High Court was bound by the Court of Appeal’s decision against Noel Conway in 2018, the Lord Justice Irwin and Mrs Justice May held: 

‘The court is not an appropriate forum for the discussion of the sanctity of life, or for the resolution of such matters which go beyond analysis of evidence or judgment governed by legal principle. For these reasons, we refuse permission.’ 

If successful, Phil’s case would allow adults of sound mind the ability to request an assisted death, in circumstances where they suffer from an incurable disease which causes them unbearable suffering and cannot otherwise be palliated. 

Trevor Moore, Chair of My Death, My Decision, who is supporting Phil’s case, added: 

‘Now more than ever, as progressively more countries, including Canada, empower their citizens with the right to choose the manner and timing of their death, the nature of our country’s inexcusably callous law against assisted dying has become clearer. Public opinion has reached a watershed moment – nearly 90% now agree that adults of sound mind, who are either terminally ill or incurably suffering, deserve the right to a peaceful, painless, and dignified death. In light of that, it is hard to comprehend why the court has refused Phil Newby the opportunity to enable full scrutiny of the evidence, so that incurably suffering people like Phil, and Paul Lamb (who has also launched a legal challenge) have choice and control over how, when and where they die.’

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 state of Victoria.

NOTES

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

Details of the Case

Phil Newby, 49, a father of two from Rutland, was diagnosed with the progressive and degenerative medical condition, motor neurone disease in 2014. Unlike 2014, Phil had been working in the financial sector as CEO of Green Ventures. He is represented by Saimo Chahal QC of Bindmans LLP, Paul Bowen QC of Brick Court Chambers, Adam Wagner of Doughty Street Chambers, and Jennifer Macleod of Brick Court. 

Phil is also being supported by the campaign groups My Death, My Decision (MDMD), Friends At The End (FATE), and Dignity in Dying.

If successful, Phil’s case would allow adults of sound mind the ability to request an assisted death, in circumstances where they suffer from an incurable disease which causes them unbearable suffering and cannot otherwise be palliated. 

On 21 May 2019, Phil submitted an application to judicially review Section 2(1) of the 1961 Suicide Act. The court was invited to grant a declaration of incompatibility under the Human Rights Act 1998, on the grounds that the 1961 Suicide Act is incompatible with Phil’s rights under Article 2 (right to life) and Article 8 (right to a private and family life). In addition, the court was also invited to allow a preliminary issue of cross-examining expert witnesses to be appealed directly to the UK Supreme Court. On 27 September, the High Court handed down a judgment denying permission for the case to proceed. 

On Tuesday 22 October, Phil’s legal team attended the High Court to appeal this decision. In a handed down judgment on Tuesday 19 November, Lord Justice Irwin and Mrs Justice May ruled that Phil Newby did not have an arguable case for permission to judicially review the Suicide Act 1961.

For legal comment or interviews with Phil Newby’s legal team at Bindmans LLP, please contact Saimo Chahal QC at s.chahal@bindmans.com or by telephone on +44 20 7833 4433

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. 

Following Debbie Purdy’s case, the then Director of Public Prosecutions, Sir Keir Starmer MP, issued guidance on factors indicating when a prosecution will and will not be brought for assisting another to die. One factor tending against prosecution is when a ‘suspect was wholly motivated by compassion’. Consequently, between April 2009 and January 2019, there have been 148 cases of assisted dying referred to the Crown Prosecution Service (CPS) by the police, but only 2 successful prosecutions. 

In 2014, Jane Nicklinson, the widow of locked-in sufferer Tony Nicklinson, and Paul Lamb, who is paralysed from the neck down, challenged the law on assisted dying in the Supreme Court. The court held that Parliament should be afforded the opportunity to debate the issue before the courts would rule on whether the law is incompatible with the rights of those who are both terminally ill and facing incurable suffering. 

In 2015, parliament rejected by 330 against to 118 in favour, Rob Marris’ private members’ bill to legalise assistance for those who were terminally ill and likely to die within 6 months. 

Under Section 1(2) of the 1982 Forfeiture Act, an individual who assists a loved one to end their life abroad can have their inheritance withheld, even if the CPS deems that it is not in the public interest to bring forth a prosecution. 

Recent Developments 

In November the UK’s largest medical association, the Royal College of GPs, opened their consultation on assisted dying

In September, the Quebec Superior Court struck down a restriction under Canada’s law on assisted dying, against those with progressive and incurable illnesses. Following the judgment, unless the Federal Government challenges the decision within six-months, those with intolerable but non-life threatening conditions will be able to request an assisted death. Also in September, Italy’s constitutional court held that people should not always be punished for assisting another to die, if a person is in a state of intolerable and irreversible suffering. 

In July, My Death, My Decision’s patron, Paul Lamb, who is paralysed from the neck-down, separately applied to the High Court to challenge the UK’s law on assisted dying. 

In June, the British Medical Association announced that they would poll their members on assisted dying. Their announcement follows the Royal College of Physicians ending their long-standing opposition to assisted dying and adopting a neutral position in March 2019. 

About My Death, My Decision

My Death, My Decision is a grassroots non-profit that campaigns for a balanced and compassionate approach to assisted dying in the UK. We believe that everyone deserves access to excellent palliative care but that adults of sound mind, who are either terminally ill or facing incurable suffering, should have the right to a peaceful, painless, and dignified death. Through the work of our members, supporters, patrons, and activists we help to broaden the public debate on assisted dying and seek to secure changes in the law.

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

Read more about how one Briton 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/

Read more

Phil Newby asks High Court for the right to challenge the UK’s ban on assisted dying

Phil Newby, a man who is facing incurable suffering and wants the right to challenge the UK’s ban on assisted dying, yesterday appealed for permission before the High Court.

The 49-year-old father of two, who suffers from the degenerative condition motor neurone disease, has already raised over £42,000 in donations from the public.

Phil could not attend court in person, but his legal team argued that the UK’s current prohibitive law breaches his human rights to a private and family life. They have invited the court to examine a growing body of international evidence in support of assisted dying and asked for the right to cross-examine expert witnesses.

In court, Phil’s lawyer, Paul Bowen QC, told Lord Justice Irwin and Mrs Justice May that Phil’s case differed from previous legal cases as if successful, it would allow adults of sound mind the ability to request an assisted death, in circumstances where they suffer from an incurable disease which causes them unbearable suffering and cannot otherwise be palliated.

Characterising the options which the Government said were already legally available to Phil as ‘inhumane’, Mr Bowen went on to say that the issue to the heart of the case was whether Phil could exercise a degree of autonomy at the end of his life.

Nearly 90% of the public now favours a change in the law on assisted dying for those, like Phil, who are facing incurable suffering, in at least some circumstances.

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 specifically terminally ill people in Colombia, ten US jurisdictions, and the Australian state of Victoria.

Phil is being supported by the campaign group My Death, My Decision, who unlike some other right-to-die organisations, do not believe that assisted dying should be restricted to only those who are terminally ill with a prognosis of six months or less.

Earlier in the day, Phil Newby said:

‘By bringing this case I’m laying down the gauntlet, asking our most senior judges to examine the evidence on assisted dying in detail.
I am hugely thankful to everyone who has helped me get this far. Many of those who have donated to support the case have direct experience of our outdated and cruel law. Reading the comments of supporters on Crowd Justice is both heart-breaking and stirring. Like me, some are staring into a bleak future where no choice exists for a dignified death. Others are the traumatised loved ones of terminally ill people who felt they had no option but to end their own lives. I sincerely hope that the court will grant permission so that all the issues can be fully aired with my lawyers having the chance to cross-examine the witnesses who argue against a change in the law and the government having the same right with my expert witnesses.’

My Death, My Decision’s Chair, Trevor Moore said:

‘Phil Newby faces an inexcusably cruel dilemma. Until the law changes, his only options in due course are to die through the painful process of starvation or through the indignity of succumbing to his illness. Years have now passed since Parliament last considered this issue, and new evidence has emerged from progressive countries, including Canada, which demonstrate that robust safeguards can be balanced alongside respect for autonomy.

Nearly 90% of the public now agree that those facing incurable suffering deserve the right to a peaceful, painless, and dignified death, in at least some circumstances. We strongly hope that our courts will use this opportunity before them, and act in the interests of reason and empathy by agreeing to examine the evidence put before them.

We believe that adults of sound mind, who are either terminally ill or facing incurable suffering, deserve the right to safeguarded assisted dying. That is why we support both Phil Newby’s and Paul Lamb’s legal cases.’

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

Details of the Case
Phil Newby, 49, a father of two from Rutland, was diagnosed with the progressive and degenerative medical condition, motor neurone disease in 2014. He is represented by Saimo Chahal QC of Bindmans LLP, Paul Bowen QC of Brick Court Chambers, Adam Wagner of Doughty Street Chambers, and Jennifer Macleod of Brick Court.

Phil is a member of and supported by the campaign groups My Death, My Decision (MDMD), Friends At The End (FATE), and Dignity in Dying.

If successful, Phil’s case would allow adults of sound mind the ability to request an assisted death, in circumstances where they suffer from an incurable disease which causes them unbearable suffering and cannot otherwise be palliated.

On 21 May 2019, Phil submitted an application to judicially review Section 2(1) of the 1961 Suicide Act. The court was invited to grant a declaration of incompatibility under the Human Rights Act 1998, on the grounds that the 1961 Suicide Act is incompatible with Phil’s rights under Article 2 (right to life) and Article 8 (right to a private and family life). In addition, the court was also invited to allow a preliminary issue of cross-examining expert witnesses to be appealed directly to the UK Supreme Court. On 27 September, the High Court handed down a judgment denying permission for the case to proceed.

On Tuesday 22 October, Phil’s legal team attended the High Court to appeal this decision. If permission is granted, a full hearing of the case will follow.

For legal comment or interviews with Phil Newby’s legal team at Bindmans LLP, please contact Saimo Chahal QC at s.chahal@bindmans.com or by telephone on +44 20 7833 4433

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.

Following Debbie Purdy’s case, the then Director of Public Prosecutions, Sir Keir Starmer MP, issued guidance on factors indicating when a prosecution will and will not be brought for assisting another to die. One factor tending against prosecution is when a ‘suspect was wholly motivated by compassion’. Consequently, between April 2009 and January 2019, there have been 148 cases of assisted dying referred to the Crown Prosecution Service (CPS) by the police, but only 2 successful prosecutions.

In 2014, Jane Nicklinson, the widow of locked-in sufferer Tony Nicklinson, and Paul Lamb, who is paralysed from the neck down, challenged the law on assisted dying in the Supreme Court. The court held that Parliament should be afforded the opportunity to debate the issue before the courts would rule on whether the law is incompatible with the rights of those who are both terminally ill and facing incurable suffering.

In 2015, parliament rejected by 330 against to 118 in favour, Rob Marris’ private members’ bill to legalise assistance for those who were terminally ill and likely to die within 6 months.

Under Section 1(2) of the 1982 Forfeiture Act, an individual who assists a loved one to end their life abroad can have their inheritance withheld, even if the CPS deems that it is not in the public interest to bring forth a prosecution.

Recent Developments
In September, the Quebec Superior Court struck down a restriction under Canada’s law on assisted dying, against those with progressive and incurable illnesses. Following the judgment, unless the Federal Government challenges the decision within six-months, those with intolerable but non-life threatening conditions will be able to request an assisted death. Also in September, Italy’s constitutional court held that people should not always be punished for assisting another to die, if a person is in a state of intolerable and irreversible suffering.

In July, My Death, My Decision’s patron, Paul Lamb, who is paralysed from the neck-down, separately applied to the High Court to challenge the UK’s law on assisted dying.

In June, the British Medical Association and Royal College of GPs announced that they would poll their members on assisted dying. Their announcement follows the Royal College of Physicians ending their long-standing opposition to assisted dying and adopting a neutral position in March 2019.

About My Death, My Decision
My Death, My Decision is a grassroots non-profit that campaigns for a balanced and compassionate approach to assisted dying in the UK. We believe that everyone deserves access to excellent palliative care but that adults of sound mind, who are either terminally ill or facing incurable suffering, should have the right to a peaceful, painless, and dignified death. Through the work of our members, supporters, patrons, and activists we help to broaden the public debate on assisted dying and seek to secure changes in the law.

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

Read more

Autonomy and Safety of Assisted Suicide Law – reflecting on Jonathan Sumption’s Reith Lecture comments

This year’s BBC Reith lecturer is former supreme court judge Jonathan Sumption QC, who was one of the judges in the Tony Nicklinson case. In his first lecture “Law’s Expanding Empire“, he looked at what we expect of the law and how it’s aims have developed over the years.

The programme can be heard here, or the transcript read here.

The lecture, and in particular one of the questions at the end, are of interest to the debate on the Assisted Dying law. Lord Sumption discussed the degree to which the law permits autonomy and protects against risk, both of which have important implications in the assisted dying debate.

Lord Sumption identified “growing moral and social absolutism to produce conformity” as one trend in law. In some areas such as religious worship and homosexuality the law has been relaxed. (The decriminalisation of suicide in 1961 is another relevant relaxation.) In other areas he argued that the law applies conformity. “We are a lot less ready than we were to respect the autonomy of individual choices. We tend to regard social and moral values as belonging to the community as a whole, as matters for collective and not personal decision.” He discussed the Charlie Gard case, pointing out that the parent’s wishes were not permitted. In cases like this the medical profession understandably use the law to make the final judgement, protecting them from legal liability. Lord Sumption was not disagreeing with the Charlie Gard ruling, but pointing out how the law limits autonomy, of the parents in this case, in ways that it wouldn’t have done a generation ago. The law has always, rightly, limited personal autonomy when this is necessary to protect the rights of others. “What is new is the growing tendency for law to regulate human choices even in cases where they do no harm to others and there is no consensus about their morality.

Although this trend may go some way to explain the reluctance to legalise assisted dying, in medical ethics there is a very strong principle of respecting individual autonomy. We hear “patient-centred medicine” being advocated, though this currently stops short of patient-centred choice when it comes to assisted dying, due to the current law. In refusing treatment, however, patient autonomy is strongly defended. In the Noel Conway legal challenge it was said that a change in law was unnecessary as he could end his life by removing the breathing apparatus on which he was dependent. Precisely this option was used by John King, who also suffered from MND. This right to refuse life sustaining treatment is upheld by the courts even when it is contrary to medical opinion. This is seen clearly in cases such as the “champagne suicide” and a woman suffering from mental illness who refused a leg amputation that her medics deemed essential. Advance Decisions allow us to extend this right to refuse life sustaining medical treatment even when we have lost the mental capacity to make the decision at the time.

A second area Lord Sumption identified as leading to growing dependence on the law is the quest for greater security and reduced risk. He discussed the risk of road accidents posed by motor vehicles. The accepted situation is that the benefit of convenient fast transportation outweighs the risk of loss of human life and severe injury. “Eliminating risk is not an absolute value, it’s a question of degree.” He gave an example of how to protect the public from the ill-advised behaviour of some individuals, such as a man who was paralysed due to diving into a lake. The House of Lords rejected a claim against the local authority as the problem was seen to be self-inflicted folly. “Every time that a public authority is blamed for failing to prevent some tragedy like this, it will tend to respond by restricting the liberty of the public at large in order to deprive them of the opportunity to harm themselves. It’s the only sure way to deflect criticism.” He pointed out that “the law doesn’t in fact provide a solution for every misfortune. It expects people, within limits, to look after their own interests.” He acknowledged that “public expectations are a powerful motor of legal development” but qualified this saying “Judges don’t decide cases in accordance with the state of public opinion but it is their duty to take account of the values of the society which they serve. Risk aversion has become one of the most powerful of those values and is a growing influence in the development of the law.” This is highly relevant to the discussion of possible risk in the current law on assisted suicide, and any future law enabling medical assistance to die.

Interestingly the “risk” argument is used by those on both sides of the assisted dying debate. In a recent article Alyson Thomson, director of Dignity in Dying in Scotland, said: “The current law is unsafe and, unlike an assisted dying law, does not protect vulnerable people. We are calling for a compassionate law with up-front safeguards – rather than a criminal investigation.” This was rejected by Baroness Grey-Thompson in a letter in the Times on 20th May 2019 which went on to argue that legalised assisted dying would be unsafe. The risks on each side are relative.

From MDMD’s perspective the current law against assisted dying makes some people feel they have to end their life themselves, or persuade others to help them illegally.  7% of recorded suicides involve people who are terminally ill. To this should be added suicides of those with incurable illnesses but without terminal illness, which result in an unacceptable quality of life which causes them to end their lives. Many unassisted suicides fail, possibly leaving seriously ill patients even sicker and more desperate. After a death it is much harder to assess whether the deceased agreed, or was coerced. You can’t ask them. There wasn’t the chance to protect them. There are a number of very real risks with the current law when people attempt to take their lives themselves (or with assistance) due to the lack of an assisted dying law:

  • Suicides which are ill-advised due to lack of counselling;
  • Suicides or assisted suicides which have been coerced;
  • Botched suicides resulting in the person surviving but in a worse condition;
  • Suicides which are done sooner than ideally wished out of fear that it may be impossible to do unaided as the illness progresses.

It is surely safer to professionally evaluate any request for medically assisted suicide, and provide legal assistance when there are no acceptable alternatives and the person is making a free, mentally competent, informed and persistent life-ending choice in the face of incurable and unacceptable suffering. If medically assisted suicide were available in this way there may be very rare cases where coercion remains undetected, despite the best processes on detection. However, exactly the same potential risk exists in patients who choose to end their lives legally today by refusing life sustaining treatment. Society already accepts that risk of possible coercion. So why should the legalised assisted dying case be treated differently? Those who voice their concerns about the possible risks of coercion in assisted dying, but who also uphold the patient’s right to refuse life sustaining treatment, seem highly inconsistent.

It is very relevant to point out that another retired and highly respected judge, Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge chose to end his life by hanging in his care home, following a dementia diagnosis. Few would argue that this was a good death, but quite possibly more preferable for Sir Nicholas than the alternative. Deaths like this are the grim reality of the current law preventing medical assistance to die.

In the questions that followed Lord Sumption’s lecture, Ann Whaley told Lord Sumption about her well publicised case concerning how she helped her husband go to Switzerland for an assisted death there and how she had to endure a police investigation. She said “The current law on assisted dying is not working and a huge majority of the public wants to see a change.” Lord Sumption responded that it was not for judges to make decisions on these matters. He questioned the reliablity of opinion polls, due to the simplicity of the questions asked and continued: “this is a subject on which people have strong moral values and on which they disagree. There is a large number of people who feel … that changing the law so as to allow assisted suicide would render large numbers of people vulnerable to unseen pressures from relatives and so on. There are others who feel that the intervention of somebody in the life of another so as to end it is morally objectionable.” He regarded this as something that needed to be resolved by a political process.

The chair then pressed Lord Sumption for his personal opinion on the issue, to which he responded: “I think that the law should continue to criminalise assistance in suicide and I think that the law should be broken. I think that it should be broken from time to time. We need to have a law against it in order to prevent abuse but it has always been the case that this has been criminal and it has always been the case that courageous relatives and friends have helped people to die, and I think that that is an untidy compromise of the sort that I suspect very few lawyers would adopt, but I don’t believe that there is necessarily a moral obligation to obey the law and, ultimately, it is something that each person has to decide within his own conscience.”

Many people have reacted with astonishment at this statement. Suggesting that the law should be broken is surprising enough, clearly indicating that the law is not appropriate, but it is quite incredulous when the reason given for not changing it is due to a fear of abuse which is unsubstantiated, and as argued above, is no greater than the risk of abuse accepted today regarding refusal of life sustaining treatment. In his lecture he argued that it was unrealistic to expect the law to guard against all risks – especially when attempting to do so limits autonomy unreasonably. The desire for a peaceful medically assisted death, when faced with incurable suffering, is surely a case where autonomy should be respected. From MDMD’s perspective the risks of the current law and the increased autonomy of the incurably suffering who wish to end their lives, far outweigh any risks of a carefully designed and implemented assisted dying law.

Ann Whaley pointed out that Lord Sumption omitted to mention the issue of compassion – not only for the person wanting an assisted death, but also for their loving family who have to suffer the consequences of the current cruel law to provide the help the suffering person requests. Unlike Lord Sumption, many people do feel a moral obligation to obey the law – and a good thing too! People taking the law into their own hands is a hugely risky suggestion. Instead of being encouraged to break a bad law, we need a good compassionate law which provides autonomy with acceptable safety – at least the same level as safety afforded for those who refuse life-preserving treatment.

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‘Endgame’ Documentary on Assisted Dying Available Online

Endgame is a documentary made over 18 months in 2017/8 by independent film maker Andi Reiss. It has been shown, with much praise, at many film festivals and at independent venues. He has now made it available to view on his Vimeo site. A link is embedded at the bottom of this page.

The film, which lasts 65 minutes, follows the stories of Marie, Omid and Alex: three people contemplating a medically assisted suicide in Switzerland. At points the viewing is harrowing and highly emotional – please take that as a warning and have tissues to hand if you watch it!

The documentary asks hard questions and interviews people central to the debate including: Saimo Chahal, (Lawyer for Omid and previously Tony Nicklinson); Richard Huxtable, (Professor of Medical Ethics and Law, Bristol University); Dr Erika Preisig, (Lifecircle) and Rt Rev Lee Rayfield (Bishop of Swindon).

The final section of the film shows Marie and Omid ending their lives at Lifecircle in Switzerland. The in-depth interviews with them immediately prior to them ending their lives are particularly striking. The footage starkly contrasts, on the one hand the joy and gratitude of two people able to peacefully end their suffering after a long period of careful consideration, but on the other hand, the inevitable sadness at loss of life. Omid clearly found happiness in his final interview, the day before he ended his life. The cries of those he left behind speak for themselves.

Another important aspect of the film is that it shows the speed and ease of the intravenous method of medically assisted suicide used at Lifecircle. By controlling a valve, the patient knowingly takes the final step themselves, clearly making this an act of assisted suicide rather than voluntary euthanasia, but because there is no oral ingestion the death is quick and predictable. Dr Preisig has previously told MDMD that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”. This contrasts with the possibility of many hours with oral methods, as demonstrated in a recent BBC2 documentary which showed a case in California which took 7.5 hrs.

The tragedy of Omid’s death, which movingly ends the film, is not that Omid chose to end his life. Instead, the tragedy is that Omid’s legal challenge failed and that his eventual medically assisted suicide in Switzerland was so difficult for him to arrange, causing him prolonged suffering he wanted to avoid. It also put his grieving friends and family at risk of prosecution under the UK’s assisted suicide law.

Marie and Omid considered all their alternative options carefully. MDMD strongly advocates good palliative care but recognises that the option of assisted dying is essential for some people for whom even the best palliative alternatives are inadequate.

MDMD’s work will not be complete until this type of peaceful “good death” is integrated into improved palliative care in the UK. Currently the option is only available in the UK to a fortunate and determined few who manage to arrange it in Switzerland. Outsourcing medically assisted dying to another country should only be be seen as a temporary stopgap, pending a compassionate, safe law to permit medically assisted dying for people like Marie, Omid and Alex in the UK, after full and open discussion with their UK doctors. Many of the problems with the current UK arrangement are discussed here and in this study.



Endgame 65 min Oct 2018 from Andi Reiss & Yellow Media Group on Vimeo.

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The ‘forfeiture’ rule and assisted dying – punishing compassionate families?

Recently, it was reported that Sarah Ninian, the wife of Alexander Ninian who ended his life at the Swiss clinic Dignitas in 2017, was entitled to inherit from her husband.

Mr Ninian, who had been deemed mentally competent, had been suffering since 2013 from progressive supra-nuclear palsy, an incurable disease which can lead to a loss of mobility, difficulty swallowing, and eventually death. In 2016, he decided that he wanted medical assistance to end his life, but without the assistance of his wife he would have been unable to do so.

Under the 1961 Suicide Act, any action which is capable of helping another person to end their life, including assistance to travel, is illegal, and those convicted face up to 14 years in prison.

The key issue for Mrs Ninian, was whether a legal rule (the forfeiture rule) prohibiting individuals from benefiting from unlawful killing, would prevent her benefiting under Mr Ninian’s will from any inheritance.

Ultimately, reflecting on specific facts of the case, Chief Master Marsh concluded that Mrs Ninian should be entitled to benefit from her husband’s inheritance. Noting that:

  1. Mr and Mrs Ninian were married for 34 years. It was a first marriage for both of them and all the evidence points towards a strong and loving relationship.
  2. The degree of moral culpability on the part of Mrs Ninian is limited. I have concluded, applying the civil standard of proof, that she committed an offence under section 2 of the Suicide Act. It is a serious offence with a maximum term of imprisonment of 14 years. However, it is I think fair to say that what she did was to assist her husband, who was a man with a strong independent will, who had been assessed by an eminent consultant as having capacity, to fulfil his wish to undertake a lawful act. On one view, although not a course of action the court can endorse, she did what many persons would do for a loved one.
  3. I have already remarked on the nature and gravity of the offence. Mrs Ninian took steps to positively discourage her husband from committing suicide and the help she provided was removed from the immediate steps that were the cause of his death.
  4. Mr Ninian’s intentions were clearly recorded and were unambiguous.
  5. Having regard to the overall financial position, there could be no suggestion that Mrs Ninian was motivated by money in the assistance she provided.
  6. Mrs Ninian’s brothers would be entitled to take the forfeited property if relief is not granted. They have no wish to do so and have supported her application.

Indeed the judge even went as far as to say: “On one view, although not a course of action the court can endorse she did what many persons would do for a loved one”.

The Issues Behind the Headline

At its core, the forfeiture rule, found under Sections 1 and 2 of the Forfeiture Act 1982, is a sensible law designed to deter criminals from committing crimes for personal gain. The rule states that as a matter of “public policy” those who have unlawfully killed another, cannot acquire a benefit as a result of their actions. However, and importantly for Mrs Ninian, the rule also states that where “the justice of [a] case requires” it, the rule can be modified or even not applied at all.

Mrs Ninian’s story should serve as a reminder for many, of the tragic situation the current law on assisted dying can force upon families.

Like so many other families confronted by the same request for help, Mrs Ninian did not want her husband to end his life. It is reported that she pleaded with him to change his mind, and even persuaded her husband to inform a specialist palliative doctor of his plans, to ensure that he understood the full range alternative options. Yet, once Mr Ninian had made it clear that he found his quality of life intolerable, and that it was his persistent wish to control the manner and timing of his own death, Mrs Ninian decided to support her loved one and respect his wishes. Indeed, whilst giving evidence she said:

“For a man of such intelligence, dignity and grace, being unable to speak made life insufferable for Alex. Alongside this his mobility was bad, leading to frequent falls and his swallow was showing the first signs of going. The thought of losing his swallow as well as his speech terrified Alex. A few months before his death, I asked him if he got any enjoyment out of life at all and he gave me the thumbs down. I spent a year trying to get Alex to change his mind but he was solid in his decision that he wanted to be dignified to the end which is why he chose to end his life. He faced a future that he did not want. Alex was my soul mate for 40 years and it is very hard to cope with losing him. Everything that I did for him I did because he asked me to, and because I loved and cared for him too much to refuse.”

As a result of this, the CPS determined, in accordance with the Director of Public Prosecution’s guidelines, that it was not in the public interest to bring a case against Mrs Ninian, and chose not to impose a criminal penalty for her compassionate actions.

An Unnecessary Punishment

Against this backdrop, it is worth considering the impact this case may have on cases of families travelling abroad in the future.

One option, is that Chief Master Marsh’s judgement will now crystalise a rule which states when the criminal law brings no sanction, then the forfeiture rule will not take effect either. In support of this view, authority could be drawn from Lord-Justice Phillips, who wrote in the authoritative case governing this area of the law, “where the public interest requires no penal sanction, it seems to me that strong grounds are likely to exist for relieving the person who has committed the offence from all effect of the forfeiture rule”.

Alternatively, it could be argued that Chief Master Marsh did not adopt such a strong rule, citing instead a list of factors, along with the DPP’s guidelines, as guides on whether discretion should be used to disapply the forfeiture rule should be applied e.g

“The court is entitled to take into account a whole range of circumstances relevant to the discretion, quite apart from the conduct of the offender and the deceased; the relationship between them; the degree of moral culpability for what has happened; the nature and gravity of the offence; the intentions of the deceased; the size of the estate and the value of the property in dispute; the financial position of the offender; and the moral claims and wishes of those who would be entitled to take the property on the application of the forfeiture rule.”

On this reading, a perverse outcome is possible. Assuming that a loved one is equally opposed to a family member ending their life abroad, pleads with them to continue living, informs the police of their acts, but is in an unstable financial position, it is possible the civil law may punish something that the criminal law considers to be against the public interest to prosecute. Granted whilst this situation would most likely be rather rare, the very possibility that the criminal law may find no principled justification to punish someone for acting compassionately, but the civil law might,is cause for alarm.

For those who cannot afford to forfeit their inheritance, this judgement may create yet another divide within the law on assisted dying. Not only will the right to die be restricted to those who can afford the costs of travelling abroad to end their lives, the right to die might now be restricted, even further, to only those whose loved ones can afford to sacrifice an inheritance.

My Death, My Decision believes that a law which puts the well-being of those who want to die at its core, and treats their loved ones with compassion should not be restricted to those with financial means; or force families to choose between letting their loved ones suffer, or supporting them to travel abroad, and risk criminal investigation.

Mrs Ninian’s case serves as a worrying reminder, even if the DPP’s guidance can mollify the worst effects of the criminal law, it is possible the civil law could punish compassionate families regardless.

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The Legacy of Debbie Purdy – Radio 4 programme

BBC Radio 4 recently broadcast a 2 part programme about Debbie Purdy. The first part is a dramatisation of the story of how Debbie took her legal case to the House of Lords and as a result caused the director of public prosecutions, (DPP), to issue guidelines clarifying the facts to be considered when deciding whether someone should be prosecuted for assisting suicide. Debbie was concerned that her husband might be prosecuted if he helped her to go to Dignitas in Switzerland, where she could have a medically assisted suicide. (The DPP at the time was Keir Starmer, who is now a front bench Labour MP, and shadow Brexit secretary.) It is 10 years ago this year that Debbie won her case.

In the second part of the programme, The Legacy of Debbie Purdy, Deborah Bowman discusses the issues raised by Debbie’s case with her husband, Omar Puente, her solicitor, Saimo Chahal, and Lord Falconer, the barrister and Labour peer who campaigned on the issue in Parliament.

In recalling the day of the House of Lords ruling on the Purdy case, Lord Falconer said, ‘What Debbie and Omar achieved was absolutely epochal in relation to the struggle because it forced the government, the DPP, to set out what were the circumstances which would lead you to be prosecuted for helping someone to take their own life and what would be the circumstances that would mean you wouldn’t be prosecuted.‘ The resulting DPP guidelines are available here.

The programme raised the recent case of Geoff Whaley, in which his wife, Ann, was interviewed by the police under caution, prior to assisting Geoff to go to Switzerland for a medically assisted death there. The presenter asked ‘Why are friends and family still vulnerable to investigation and potential prosecution given Debbie’s case?

Lord Falconer explained that ‘there are still lots of problems because they are dependent on the discretion of the DPP. He decides if there is any bad motivation on the part of the family or friends who helped their loved one take their own life.

Asked why his attempts to change the law failed when Debbie Purdy’s case was won, Lord Falconer went on to say ‘I think parliament is totally out of tune with the public’s view… Politicians come into politics to deal with schools and hospitals and issues like that and this is a side issue for them.’

In 2014 Lord Falconer put forward a private member’s Bill in the House of Lords for an assisted dying law along the lines of the Death with Dignity law in Oregon USA. His Bill made significant progress by passing its second reading, but it ran out of time due to the general election of 2015. (Essentially the same Bill was re-introduced in the House of Commons by Rob Marris following the election, but was defeated at its second reading.)

Saimo Chahal, Debbie’s solicitor, went on to represent Tony Nicklinson, who suffered from locked in syndrome. More recently she represented Omid in his legal challenge for assistance to die. She raised the issue of people with degenerative diseases which mean that they would not be helped by the kind of Bill proposed by Lord Falconer as they are not expected to die within six months, but have much longer to suffer. She quoted Lord Neuberger, one of the law lords who ruled in the Nicklinson case, saying surely these people are even more deserving of our sympathy than those who only have a few months to suffer.

Although the Nicklinson and Omid cases failed, the Nicklinson case did help persuade ex Archbishop of Canterbury, Lord Carey to change his view on assisted dying, so that he now supports assisted dying for cases such as these.

Lord Falconer was asked why he proposed a law that would only help those with six months or less to live. He replied ‘Authorising people to assist somebody to die should be limited to those who are dying already. I think that by and large being opposed to helping people to commit suicide is the right policy position for the state to be in, however if you are dying you should have choices as to how you die.

The presenter pointed out the medical difficulties of making an accurate life-expectancy prognosis, which Lord Falconer accepted, but said that doctors had to make difficult decisions all the time.

Saimo Chahal agreed with Lord Falconer that there was an underlying principle of personal autonomy over end of life wishes which should be respected, but she said ‘I personally cannot understand why people who have 6 months or less should be helped but not people who have a degenerative condition which is life shortening, who have years and years of pain and agony ahead of them. It seems to me that those very people deserve to have autonomy over when they bring their lives to an end.

Lord Falconer responded that ‘the problem is that if suffering becomes the test, you are asking the law to make quite difficult decisions’. He went on to highlight the difficulties with people who are suffering from extreme depression.

Clearly there are difficult decisions to be made – both medical and legal. What seems to be missing is agreed guidelines to tackle them both, while providing adequate protection from those who may be coerced to act against their “true” wishes. It is unfortunate that the programme was not able to explore this point further. It is instructive, for example, to compare the existing right of someone to refuse life-sustaining treatment, or to refuse food and liquid, in order to end their life, but the absence of a right to request medical assistance to die when faced with incurable suffering. Two recent cases highlight this issue, both with motor neurone disease. John King ended his life by removing his ventilator, but Noel Conway’s legal challenge was refused, partly because he has this option of removing his ventilator which he could choose. We should note that the criteria which separate these very similar cases do not involve issues of the risk of coercion, nor any estimate of life-expectancy. Surely it cannot be acceptable to force people to suffer from incurable conditions against their will when they are not dependent on life-sustaining treatment which they could refuse, or where such refusal of treatment could lead to a protracted and unpleasant death.

One thing that wasn’t pointed out was that in her final interview Debbie’s views on the six month issue were very clear: ‘I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.‘ Saimo Chahal was clearly echoing Debbie’s point of view.

Despite these limitations, the programmes are both fascinating. It is particularly helpful to hear a discussion on the issue of the six month criterion – something that MDMD has strong views on.

The progammes are available for a limited time here:

https://www.bbc.co.uk/sounds/play/m0002r4f

https://www.bbc.co.uk/sounds/play/m0002r4h

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