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

UK’s largest medical body launches assisted dying survey

The UK’s largest medical body, the Royal College of General Practitioners, has launched a consultation on whether to change its policy on assisted dying, which it currently opposes. 

Over 50,000 GPs will now have until 13 December 2019 to respond to the consultation, which is being organised by the independent pollsters ComRes, on whether the College should support, oppose, or be neutral on the topic of the legality of assisted dying. 

When the body’s members were last consulted in 2014, a majority said that the college should remain opposed to reform. But, only a fraction of the college’s members participated in the consultation. 

A poll of more than 1000 GPs in January, found that a majority of GPs are now either neutral or support changing the law on assisted dying, whereas only 33% oppose law reform. 

The news comes after the British Medical Association announced its intention to hold a similar poll and after the Royal College of Physicians dropped its opposition earlier in the year after consulting its members. 

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. 

To help ensure everyone has a right to choose how they die, My Death, My Decision and its Assisted Dying Coalition partners, are encouraging their members and supporters to write to their GP and ask them to support legal, compassionate, and safeguarded assisted dying. 

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

‘There has been a seachange in evidence since GPs were last given an opportunity to express their views on assisted dying, and we welcome the Royal College of General Practitioners’ commitment to engaging with its members, in light of these changes. 

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. More than one person a week from the UK is now forced to end their life in Switzerland, and 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 deaths.

When voting in this consultation, doctors will represent not only their own interests, but also those of their patients. They will represent the patients forced to conceal plans because they fear a doctor’s duty to prevent them from travelling abroad;  the patients unable to alleviate pain and who face years of unbearable suffering; the patients who want an open and honest conversation about dying but are unable to under the current law. 

We believe as the majority of doctors do, that the best way to protect the doctor-patient relationship is a reformed the law, which balances respect for autonomy alongside robust safeguards. It is time for the law to change.’

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 Consultation

On 1 November 2019, the Royal College of General Practitioners released a non-binding consultation its 50,000 members. The consultation is being run through the independent pollsters Comres and will be open until December 13 2019. The consultation asks whether the College should support, oppose, or be neutral on the topic of the legality of assisted dying. In addition, it provides an opportunity for members to indicate, through a list of non-exhaustive options and a free text box, why they have voted in a particular manner. The final decision will then be taken by the Royal College of General Practitioners Council in the new year. 

In February 2014, 77% of respondents voted to oppose assisted dying reform, 18% of respondents voted to adopt a neutral stance, and 5% of respondents voted to support a change in the law on assisted dying. 234 individual members submitted an individual response online, and 1,479 people participated through 28 devolved regional and faculty discussions. 

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. 

GPs Public Opinion 

In January 2019 poll of 1,005 GPs, conducted by medeConnect, found that 33% of GPs opposed a change in the law on assisted dying, while 32% supported it, and 34% were neutral or did not know whether assisted dying should be legalised.

A number of medical bodies have either not taken, or have adopted a neutral stance on assisted dying including The Royal College of Physicians, The Royal Society of Medicine, The Royal College of Nursing, and The Royal College of Psychiatrists. 

Recent Developments 

In July, two members of My Death, My Decision living with different conditions that mean they are facing incurable suffering separately applied to the High Court to challenge the UK’s law on assisted dying. Paul Lamb, who is paralysed from the neck down, and Phil Newby, who suffers from motor neurone disease, both argue that the UK’s absolute prohibition infringes their human rights to a private and family life. Paul Lamb and Phil Newby are being supported by My Death, My Decision. 

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

New Guidelines for Canadian Medical Assistance to die in early stage Dementia cases

MDMD commented recently on how the current Canadian Medical Aid in Dying (MAID) legislation was now starting to be used in some early stage dementia cases. A recent 30-minute radio programme broadcast by CBC (Canadian Broadcasting Corporation) discusses another case in depth. The programme and a detailed summary are available on their website.

This is not an expansion of our law … This is a maturing of the understanding of what we’re doing. Dr Stefanie Green

Gayle Garlock was a retired university librarian who loved to read. When early stage Lewy-body dementia robbed him of his ability to read, his quality of life reduced unacceptably. For him that was intolerable suffering as reading was fundamental to who he was as a person.

Dr Stefanie Green is an assessor and provider of Assisted Dying in British Columbia. She is also the current president of the Canadian Association of MAID assessors and providers, (CAMAP).  She first met Gayle Garlock in March 2018. At that time she was unsure whether he met the conditions for assisted dying in Canada, or whether she would personally be willing to help him. She was understandably concerned that if she helped Gayle and was later found to have acted improperly she could face a 14 year jail sentence.

The more we talk about this topic … the better our deaths will be, however we want to shape them. Dr Stefanie Green

Dr Green and her colleagues at CAMAP spent many months considering the issues around MAID and early stage dementia, as it relates to the Canadian law. They have produced an insightful document providing guidelines for how to assess MAID requests from those with dementia.

The document considers the assessment of three key questions:

  • Whether the patient is in an advanced state of decline in capability;
  • Whether the patient has capacity to make the decision to have MAiD; and
  • Whether the patient’s natural death is reasonably foreseeable.

In discussing the interpretation of “reasonably foreseeable” death, the guidelines cite a legal case which concludes: “Natural death need not be imminent and…what is a reasonably foreseeable death is a person-specific medical question to be made without necessarily making, but not necessarily precluding, a prognosis of the remaining lifespan. […] In formulating an opinion, the physician need not opine about the specific length of time that the person requesting medical assistance in dying has remaining in his or her lifetime.” This shows how the Canadian law is more flexible than laws requiring a specific life expectancy estimate, such as 6 months, used in Oregon and elsewhere. Doctors have long argued that it is frequently impossible to give an accurate time prognosis. This has led to calls for a more flexible definition of “terminal illness” in some jurisdictions.

The CAMAP guidelines argue that as MAID requests will be part way through the mild phase of dementia, the life expectancy of most dementia patients requesting MAID would likely be less than 5 years, particularly in older patients. This is within the intention of “reasonably foreseeable”. In contrast, the guidelines are clear that cases of mild cognitive impairment (MCI) alone would not be accepted for MAID as not all such cases will progress to dementia and the rate of transition is somewhat uncertain. The death in cases of MCI alone is therefore not “reasonably forseeable”.

The guidelines carefully consider at what point a patient requesting MAID is in an “advanced” state of decline, while still retaining sufficient mental capacity to make a valid MAID request. This is a difficult and delicate issue. The guidelines first point out that for a previously highly intelligent person who is now struggling with the cognitive demands of everyday life, advanced decline is clear in terms of the relative loss of ability. However it points out that “advanced” should not be interpreted only as relative to the pre-dementia baseline, but also in terms of how close the patient is to losing capacity due to dementia. The recommendation is that in the case of a patient whose MAID request is refused solely because they are not deemed to have reached an advanced state of irreversible decline in capability, the patient should be reviewed periodically by an appropriate clinician. When it is believed that they are close to losing capacity the clinician should inform the patient that this is the case. The patient can then decide whether to request MAID or delay, on the understanding that delay may result in their losing sufficient capacity and therefore no longer being eligible for MAID.

The guidelines end with three scenarios showing how a safe assessment can be reached.

After studying the guidelines MDMD’s Lead Campaign Commentator Phil Cheatle said:

“It is very gratifying to see medical professionals in Canada working to establish safe guidelines for interpreting the MAID law in dementia cases. This is essential to ensure safe working practice. Both medical professionals and right-to-die campaigners in other jurisdictions have much to learn from the work CAMAP is doing.”

With this framework in mind, in Spring 2019 Dr Green was open to reconsidering Gayle Garlock’s case. He requested a second assessment. Dr Green found that although his condition had deteriorated he still had mental capacity and was also suffering intolerably. She approved his MAID application. Gayle chose to wait until the end of the summer, but after a fall in June he decided to request MAID in July.

Dr Green repeatedly asked Gayle whether it was his choice or his wife’s or his children’s. His consistent answers on several occasions convinced Dr Green that he had not been persuaded by anyone else. Gayle’s assisted death took place in his home on 26th August, following a final check of his mental capacity and wish for an assisted death.

In making her assessments, Dr Green interviewed Gayle on his own. This ensured that there was no one else influencing or prompting his response. It would perhaps be good practice for a video recording of the crucial assessments to be made, with the patient’s knowledge and consent, should anyone question the decision at a later stage, and for the doctor’s personal protection.

MDMD is delighted that Dr Green has agreed to be the speaker at our next meeting for our members and supporters in London in April 2020.

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An image of paralympic champion Marieke Vervoort.

Belgian Paralympian chooses to end her life with medical assistance

MDMD has been following the story of Marieke Vervoort, the medal-winning paralympic athlete, since she announced her intention to end her life when she felt the time was right for her. Many papers, including The Guardian and The Mail have reported her death by euthanasia on 22nd October 2019. Marieke had endured unbearable pain as a result of the degenerative condition Reflex Sympathetic Dystrophy, an incurable illness which can cause a burning sensation within the limbs, which even the best palliative care could not alleviate.

It is interesting to contrast the approach of palliative care options in Belgium with those in the UK. Marieke’s palliative care doctor gave her the best pain relief he could, but he could also provide euthanasia when asked. In this country that is impossible due to the law preventing medical assistance to hasten death. Instead, when asked how to avoid incurable suffering in the case of dementia, (and by implication other conditions such as Marieke’s where death could not be caused by refusing treatment), Baroness Finlay, Professor of Palliative Medicine at Cardiff University and a long-standing opponent of medically assisted dying, said “there’s no law against committing suicide”. How does she think one could do this? “There are people ordering drugs over the internet now and taking overdoses”, was her response. Attempting to wash their hands of the problem of incurable suffering, and pointing to unsafe and illegal suicide alternatives is not an acceptable position for the palliative care community. The law in Belgium allows palliative care there to set a much better example.

In an earlier interview, when Marieke had obtained papers authorising her assisted death, she said:

“Those papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers… If I didn’t have those papers, I think I’d have done suicide already. I think there will be fewer suicides when every country has the law of euthanasia. … I hope everybody sees that this is not murder, but it makes people live longer.”

The fact that Marieke delayed her death for 3 years since publicly stating her intention to take the option available to her, clearly demonstrates this point. It shows that she took a long time to carefully consider her decision and to ensure that she lived her life as long as she could tolerate, with the help of the best that palliative care could offer. A recent report highlights the extent to which palliative care in the UK fails to relieve suffering at end of life – “17 people per day will suffer as they die”.

The BBC have an in depth interview with Marieke available on-line, recorded in 2016, where she discusses her sporting achievements, the challenges of living with her disability, and her clear wish to eventually have a medically assisted death.

In response to Marieke’s death Christian Today and The Independent Catholic News quote Gordon Macdonald, chief executive of Care Not Killing, who said “It is extremely sad news that Ms Vervoort has chosen to end her life this way, but her death highlights how the right to die has become a duty to die in both Belgium and their near neighbours in the Netherlands.” Really? A Duty? On what basis does he reach that conclusion? On the contrary, it seems clear from her interviews and quotes that far from feeling a “duty to die”, the euthanasia law in Belgium enabled Marieke to live for longer than she might have otherwise, and with the comfort of knowing that a peaceful death was available when she eventually needed it. Gordon Macdonald, in not welcoming the compassion available under Belgian palliative care in extreme situations like this, seems to be saying that Marieke had a “duty to suffer for longer”. MDMD together with the vast majority of the public, consider this position to be callous and medieval.

Graham Spiers, writing in the Times, who also comes from a Christian background, demonstrates a much more compassionate attitude when he says “The Church remains largely against assisted suicide, and with well meaning, but the prolonged, ceaseless, acute suffering of people has made it an impossible argument to sustain. To those, like Vervoort, who despite medicine’s best efforts, were often in excruciating pain, the Church was saying: ‘Bear with it. Hang in there. Don’t deny God. See it through.’ It is an abhorrent stance to adopt.” Fortunately, at least a few Christian leaders agree with Graham Spiers’ view, including Desmond Tutu, the ex Archbishop of Canterbury, George Carey and MDMD Patron and General Synod Member Rev Rosie Harper. Importantly, both George Carey and Rosie Harper recognise that assisted dying should be available for people who are suffering incurably, even if they are not terminally ill – people like Tony Nicklinson, Omid T, MDMD patron and campaigner Paul Lamb and of course, Marieke Vervoort. None of these people would be helped by an assisted dying law which only helped those with a life expectancy of 6 months or less – that criterion too has become “an impossible argument to sustain” and is “an abhorrent stance to adopt”, as Marieke Vervoort’s case demonstrates and as MDMD has always argued.

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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/ 

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Medical Aid in Dying for those with early stage Dementia in Canada

Canadians have had legal access to medical aid in dying (MAID), the preferred term there, since June 2016. The Canadian law does not limit MAID to those who are expected to die within six months, as is the case in those USA and Australian states that permit assisted dying, (the ‘Oregon model’). Instead their law uses the phrase “a reasonably foreseeable death” to indicate those who are “terminally ill” in a broader sense.  A further safeguard is that a person requesting MAID must have the mental capacity to make such a decision at the time of their assisted death. So where does that leave those suffering from the various forms of dementia?

Dementia is recognised as a terminal illness, though it takes 7 or 8 years after diagnosis, on average, to cause death. Many others die “with” dementia rather than “of” it. A staggering 1 in 8 deaths in England and Wales are caused by dementia – a figure that has been steadily rising. There is no cure. Dementia sufferers therefore have a death that is “reasonably foreseeable”. In the early stages of dementia, patients have the mental capacity to make a life ending choice. An assisted death in Switzerland has been an option for many years, provided the person has mental capacity at the time. On this basis, the criteria seem clear cut regarding the law in Canada. But MAID practice in Canada has been cautious as the implications of the law come into effect.

The Globe and Mail, one of Canada’s most widely read newspapers, has recently published an in depth account of the medically assisted death of Alzheimer’s patient Mary Wilson. The article considers how the doctors involved carefully considered the case, in terms of the requirements of the MAID law. The doctors decided to take the risk that they were acting within the law, and gave Ms Wilson the MAID she wanted. The College of Physicians and Surgeons of British Columbia spent 10 months investigating the death, eventually deciding that the doctors had acted appropriately. Although this is not a judicial ruling, it should still go some way to reassure other doctors that this course of action is permitted under the current Canadian MAID law.

The issues concerning Assisted Dying in cases of Dementia are complex and need to be considered carefully. The topic is the subject of a new book by Dr Colin Brewer. The developing situation in Canada shows how relevant this topic is. When invited to comment on the significance of this new case Dr Brewer responded:

“This case shows that most dementias are recognised as conditions that will inevitably be fatal unless another lethal illness intervenes. Canada’s MAID law had some built-in flexibility. As doctors gained more experience of MAID, judges could take that into account. Britain should follow this lead from the Old Commonwealth and not feel obliged to adopt the ‘Oregon Model’.”

MDMD is watching the Canadian developments with interest. We have always held the view that those suffering from early stage dementia, while they still have mental capacity to make a life ending decision, should have the option of a medically assisted death. This is currently available in Switzerland, Netherlands and Belgium. We are delighted that these recent developments in Canada are leading to the option being available there too.

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Book Review: O, Let me not get Alzheimer’s Sweet Heaven!

Latest figures from the Office of National Statistics show that the number of deaths attributed to Alzheimer’s disease and other forms of dementia continues to rise. 1 in 8 of all deaths in England and Wales were caused by dementia in 2018. For women over 80 the figure rises to 1 in 4. A defining aspect of MDMD is that we campaign for a change in the law to allow assisted dying for those in early stage dementia, provided that the sufferer still has mental capacity to make a life ending decision. This is the same criterion used by Dignitas and Lifecircle in Switzerland. In a recent poll we sponsored, 77% of those surveyed agreed with our position on this, either “always” or “sometimes” with an additional 11% “rarely”. Only 12% thought it never acceptable. A separate survey in Jersey, using the same questions, showed even stronger support: 86.7% agreed “always” or “sometimes”, with a further 3.3% rarely. Only 10% responded “never”.

This background demonstrates both the importance of the issue of dementia and the high level of public support for the MDMD position. The subject of dementia and assisted dying is complex and raises a minefield of ethical issues. A new book, “O, Let me not get Alzheimer’s Sweet Heaven! Why many people prefer death or active deliverance to living with dementia” is published on 17th October 2019 which provides a clear guide through this minefield. It is written in a style which is very accessible to the general reader, but is backed up with a wealth of academic references for the professional. There are many anecdotes, presented with touches of humour, to lighten an otherwise very dark subject.

The author, Colin Brewer, is a retired psychiatrist who has been involved in the UK right to die movement for over 40 years. In the late 1970’s he served on the committee of the Voluntary Euthanasia Society (now renamed Dignity in Dying). He has been on the Executive Council of MDMD since 2015 and is currently a board member. He is also the convenor of MDMD’s Medical Group. In the introduction he states “I have assessed nearly every British dementia patient who applied to go to Switzerland [for a medically assisted death] in the last few years…“. He co-edited the excellent collection of essays “I’ll See Myself Out Thank You“. With that background he is uniquely qualified to write this book.

The book starts by explaining what dementia is; the varieties; what it is like to watch a person’s decline; and what it feels like to live it, (as far as we can tell). The person you have been all your adult life changes. When you lose mental capacity you no longer remember what you might previously have wished for. Who is the real “you”?

The various forms of treatment and care are discussed. Those with mental capacity have a legal right to refuse treatment (like artificial feeding and hydration, or antibiotics). When mental capacity is lost the wishes of the former self to refuse treatment can be retained through a carefully written advance decision, (living will). A recurring theme throughout the book is the importance of making clear what your wishes are by using an advance decision. Appendices give examples and a pro-forma for an advance decision specifically tailored to those with a dementia diagnosis – though the strong recommendation is to write one long before that stage is reached.

The book then considers a host of objections to changing the law on assisted dying, and the motives behind the groups opposing change. Dr Brewer is a cavalier guide through the ethical minefield, fearlessly considering areas where others fear to tread. No one escapes his scrutiny – doctors, the palliative care community, religious leaders, representatives of disability groups. Comparisons are drawn with abortion and the holocaust. The book is undoubtedly provocative – but with a purpose – to enable evidence-based discussion of important issues and to expose what he sees as fallacious arguments and hidden biases.

The second part of the book considers the choices both the individual and society have now: Do nothing; Do something; Do it yourself; Do it abroad. The book is careful not to give advice on techniques for taking one’s own life, but does not shy away from discussing why some people feel that this is an appropriate option for them – people like Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge.

At the end of his foreword to the book, neurosurgeon and author Henry Marsh invites you to “Read this book and ask yourself: what will you want for yourself, or for your family, if you are diagnosed with progressive, irreversible dementia? And what right have doctors, priests or politicians to order us how to live, or how to die?” MDMD echoes this invitation. We also suggest that the book would be an excellent gift to doctors, MPs and others with interest or influence in this subject.

It is important to point out that this book is the personal opinions of the author. Clearly there is much agreement with the position of MDMD. However, other than offering comments on initial drafts, MDMD has had no involvement in the production of the book.

NOTE: MDMD has been advised that a few last minute technical difficulties mean that the book may not be available until a few days after the planned publication date of 17th October.

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Marking one year since assisted dying campaigner Omid T’s death

Today marks one year since the right-to-die campaigner Omid T ended his life in Switzerland. To honour the anniversary, My Death, My Decision has released the exclusive extract from the last interview of Omid T, courtesy of ‘Endgame’ director Andi Reiss and Yellow Media Entertainment.

Omid had been a vocal and active campaigner, and a prominent member of My Death, My Decision before his death. Following a diagnosis of the rare neurological condition Multiple Systems Atrophy in 2014, the father of three launched the UK’s first assisted dying case, since Paul Lamb and Tony Nicklinson’s Widow Jane challenged the law in 2014. 

Raising more than £34,000 to support his challenge, Omid sought to convince the courts that the UK’s prohibitive law breached the human rights of those living with unbearable and incurable illnesses, by denying them a right to a private and family life. However, fearing that his condition would progress and leave him physically incapable of travelling to Switzerland, Omid was forced by the UK’s law to go to Switzerland before he would otherwise have wished, and 2 days before the High Court delivered its judgment – ultimately leaving Omid’s case unresolved. 

Omid recognised the importance of an inclusive law on assisted dying, believing that just as compassion has motivated people to support assisted dying for those who are terminally ill, compassion for others should also underscore support for a change in the law for adults of sound mind, facing constant and unbearable suffering. 

“In my view, there is no moral or legal justification for drawing the line at terminal illness or 6 months or fewer to live.  This would not have helped Debbie Purdy, Tony Nicklinson or me or many others who are begging for help to end our lives at a time of our choosing without pain in a dignified way.”

Acknowledging the one year anniversary of Omid’s death, My Death, My Decision’s Chair, Trevor Moore commented: 

‘Omid’s story cut through the debate on assisted dying, to provide a strong and poignant reminder that, unless the law respects the rights of both those facing terminal and incurable illnesses, a balanced and compassionate change in the law, will discriminate against hundreds that deserve compassion. It was and remains a tragedy that Omid was forced to die abroad.

Nearly 90% of the public now agrees that Omid should have had the right to choose how he died, prominent medical opinion (such as the Royal College of Physicians) has shifted, and an increasing global consensus now points towards changing the law both for those who are terminally ill and those facing incurable suffering. Isn’t it time that our politicians take stock, and act to reflect this reality?

Omid has now passed the baton onto Paul Lamb and Phil Newby to change the law in the UK, and we will continue to support them both.’ 

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Canadian court rules in favour of assisted dying for the incurably suffering

The Quebec Superior Court has struck down a restriction under Canada’s law on assisted dying against those with progressive and incurable illnesses as unconstitutional. 

Under Canada’s 2015 law, adults who are of sound mind can voluntarily request an assisted death, if they suffer from a grievous and irremediable medical condition, and are in a state of irreversible decline, enduring intolerable suffering, and their ‘natural death has become reasonably foreseeable’. Between June 2016 and October 2018, 5085 Canadians ended their life via an assisted death, accounting on average for 0.77% of all deaths.

However, following a legal challenge from intolerably suffering Canadians, both suffering from non-life threatening conditions, Quebec’s highest trial court has ruled that ‘the reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired.’

Jean Truchon, 49, who is almost completely paralysed, and Nicole Gladu, 73, who suffers from post-polio argued that the requirement of a reasonably foreseeable death was out of step with the landmark Carter v Canada ruling which paved the way for legal assisted dying. 

Suspending the ruling for six months to allow Canada’s parliament to deal with its fallout, Justice Christine Badouin ruled that Jean Truchon and Nicole Gladu could proceed with an assisted death, and noted that ‘the statutory provision requiring natural death be reasonably foreseeable infringes life, liberty and security of the person guaranteed by Section 7 of the Charter to Mr. Jean Truchon and Ms. Nicole Gladu, in a manner inconsistent with the principles of fundamental justice’.

Nearly 90% of the public now favours a change in the law on assisted dying in the UK. The Canadian ruling follows the launch of two legal cases in the UK to legalise assisted dying for both the incurably suffering and terminally ill from a tetraplegic man, Paul Lamb, and Phil Newby, who suffers from motor-neurone disease. 

Assisted dying is now legal for terminally ill and incurably suffering people in the Netherlands, Belgium, Luxembourg, and Switzerland; it is also legal for specifically terminally ill people in Colombia, ten US jurisdictions, and the Australian state of Victoria. 

The Canadian government can now decide whether to appeal the judgement or not. 

Trevor Moore, Chair of My Death, My Decision, an organisation that campaigns to legalise assisted dying for both the terminally ill and incurably suffering said:

“We warmly welcome the judgement of the Quebec Superior Court, and its decision to defend both the rights of those who are terminally ill or facing incurable suffering, as this marks yet another important step forward within the international consensus, towards a kinder and fairer law on assisted dying. 

An overwhelming majority of the public now favours changing the law on safeguarded assisted dying to enable those living in unbearable and incurable suffering the right to decide the manner and timing of their own death. Just as compassion has motivated others to support assisted dying in the past for those who are terminally ill, it is time for our Parliament to speak up for those facing incurable suffering, such as the late Tony Nicklinson, and now Paul Lamb and Phil Newby.”

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