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.

Read more