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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