Dignity in Dying

New Book ‘Last Rights’ prompts discussion on assisted dying reform

A new book released by the campaign group Dignity in Dying, ‘Last Rights – The Case for Assisted Dying’, has explored arguments on assisted dying in the wake of Covid-19. The publication has been welcomed by the campaign group My Death, My Decision, and an in-depth review has been written by lead campaign commentator Phil Cheatle. 

Stating that the pandemic has exposed ‘everything that is wrong with our relationship with dying’, the book argues that the current law, which prevents assisted dying in England and Wales, is responsible for causing unnecessary suffering at the end of life, and recommends a change in the law which would enable those who are terminally ill – meaning they had six or fewer months left to live – to request an assisted death. 

However, whilst the book has been welcomed by campaigners for its ‘excellent’ discussion of assisted dying and vulnerable people, it has also prompted criticism for solely focusing on a change in the law for those who are terminally ill – which would exclude those facing incurable suffering such as MDMD patron, Paul Lamb.  

Commenting on the new book, Rabbi Danny Rich has said: 

‘The UK’s ban on assisted dying is clearly not working, and I add my voice to a growing number calling for an inquiry into the full impact of the absence of permissive legislation. I have long been an advocate of the right of incurably ill individuals, subject to appropriate safeguards, to decide the manner and timing of their own deaths, and Last Rights calls for a modest change in the law, apparently supported by the vast majority of people in this country, both those of religious faith and those not’. 

My Death, My Decision’s Lead Campaign Commentator Phil Cheatle also said: 

‘The book does an excellent job of explaining the ways in which the current law fails dying people. However, it does not adequately consider alternative ways of solving the problem. The approach taken in the Oregon law is only one example. There is much to be learnt from best practice in Canada and Switzerland, which overcomes some of the problems with the Oregon model. A recent parliamentary committee report in Queensland Australia does precisely that. The UK should learn from it’. 

 

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Distinguished right-to-die activist Barbara Smoker dies

Credit: Andrew Davidson, https://bit.ly/3c7koJb

My Death, My Decision was sad to learn that the celebrated right-to-die activist Barbara Smoker has died aged 97.

As a former Chair of the Voluntary Euthanasia Society (now known as Dignity in Dying), Barbara was at the forefront of several social justice movements within the UK for more than 70 years including humanism, abortion rights, prison reform, as well as being an early advocate of legal, safe, and compassionate assisted dying.

During her tenure as the Chair of the UK’s leading assisted dying organisation, Barbara edited the now landmark book: ‘Voluntary Euthanasia: experts debate the right to die’ (which featured contributions from our Associate Director Dr Colin Brewer), and resisted suggestions that a change in the law should be restricted to those with six or fewer months left to live, stating:

‘Why should the question of terminality be regarded as a relevant criterion at all? Indeed, provided pain is adequately controlled, the terminally ill patient is less likely to need euthanasia than someone whose equally distressing illness or disability is not terminal, since the latter could face many years of suffering. The two most important criteria are surely the intolerable nature of the condition and its incurability – the proper question being whether an intolerable condition is apparently incurable, not whether it is terminal’.

Dr Colin Brewer said: 

‘Throughout her life, Barbara stood up to help others and protect their rights. She was a loyal friend to the right-to-die movement and her presence will be missed by all who knew her. Barbara’s achievements stand as a testament to her character, values, and commitment towards creating a better world. The thoughts and wishes of everyone at My Death, My Decision are with her friends and family during this difficult time.’ 

‘Barbara would not have minded being characterised as a ‘tough old thing’. As well as her activism in many fields, she wrote poetry and was a regular contributor to competitions in literary journals, quite often winning them. Always surprised to have survived for much longer than she expected, she continued to attend secularist meetings and to support the original aims of the Voluntary Euthanasia Society after its successor Dignity in Dying adopted  an Oregon-style six-month limit without consulting the membership. She was open about her sexuality well before that became almost unremarkable and did not let increasing deafness have much effect on her activism. I hope it is not true that ‘they don’t make them like that anymore’ because the world badly needs people like Barbara’.

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17 People a Day Will Suffer As They Die

Dignity in Dying have published a hard-hitting report on how unpleasant the realities of dying in the UK today can be for some people. The report ‘The Inescapable Truth. How seventeen people a day will suffer as they die‘ is available in full as a 92 page PDF file here. It is also available in web summary form here.

It is an important and useful piece of work. All too often the images portrayed of people receiving palliative care are those in the relatively early stages, when care is obviously serving them well. Rarely do we get a glimpse of the situation closer to the end of life, where for some, suffering cannot be effectively controlled, even by the best palliative care. Instead, information is shared anecdotally by those who have been shocked by what they have seen their own relatives having to experience. The report attempts to redress the balance with an assessment of how much intolerable suffering is experienced at the end of life.

The report opens with an introduction by Nick Boles MP who says “The experiences shared in this report are as harrowing as anything I have encountered as a Member of Parliament. I have had two bouts of cancer and am no stranger to the nastiness of the disease and its treatments, but nothing prepared me for the horror of what is described here.” He continues: “Those who oppose a change in the law point to the fact that palliative care works for the vast majority of people approaching the end of life. That is no consolation to the people for whom it does not. It is shocking to think Parliament could ever be content with a policy that has such disastrous consequences for so many people.”

The report is careful to position itself in full support of palliative care as far as palliation is possible. MDMD, like Dignity in Dying, recognise and fully support the excellent work done by those working in palliative care to do what they can to help people have an acceptable quality of life for as long as possible. The problems come when a tolerable quality of life, as perceived by the person who has to live it, is impossible. For many people, that stage is never reached, they die naturally without suffering unacceptably. But for the few who have to suffer, against their will, with no alternative of a medically assisted death, the situation can be horrific. Further, the fear of a future possibly horrific situation from which they will have no escape, will negatively impact a person’s perceived quality of life, possibly to the point of it being unacceptable. The option of a medically assisted death, even if they never find they need it, would largely eliminate this fear.

The figure of 17 people every day suffering from pain is the finding of research done by the Office of Health Economics (OHE), commissioned by Dignity in Dying. The OHE report can be found here. Their source data was for England in 2017/18 and extrapolated to the whole UK to obtain the 17 people a day figure. Looking into the source data more closely reveals some important points:

  • The figure of 17 people per day is extrapolated from the current data to the situation where everyone has excellent palliative care who needs it. Currently OHE estimate that 75% of dying people require palliative care, but only 55% of dying people get it. An estimated 20% of dying people need palliative care but don’t get it. An example of this is given in a recent story in the Guardian. This unmet need is something that people on all sides of the right-to-die debate agree needs to be fixed. Because of the unmet palliative care need, the actual figure for people suffering as they die is currently higher than 17 people per day, but would be reduced to 17 if palliative care was provided for all who need it.
  • The figure of 17 people per day is for those who have “no pain relief at all“. The figure rises to 167 per day, almost 10x, for those who have “partial or no pain relief“.
  • These figures are small in percentage terms. People in the “no pain relief at all” category account for 1% of all deaths. The “partial or no pain relief” category accounts for 10% of all deaths. So with available palliative care 90% of deaths would be pain free with the help of effective pain relief when necessary.
  • The OHE study was confined to assessment of “pain”. Those who end their life with a “perceived quality of life falling permanently below the level they are able to accept”, the much broader criterion MDMD use in our objective, will be much higher as unrelievable pain is only one reason why a person’s quality of life might be permanently below the level they are able to accept. (Other reasons could include loss of dignity for example.)

The Dignity in Dying report spends much time giving a qualitative impression of the suffering various people have to contend with at the end of life through the quotes of dying people, their relatives and healthcare workers, including palliative care doctors. These touch on many of the aspects beyond “pain” itself. One of the more harrowing examples is a quote from an unnamed palliative care consultant: “One of the most distressed patients I have ever seen in my life was a man who had had a penile cancer. His penis had been removed and he was left with a big open hole directly into his bladder. He was a very gentle person. He was so ashamed and he would cry. He was begging to have his life ended because he just hated it and he had lived for months in that condition. He was begging to have his life ended because it had absolutely no meaning. He was also in pain, but that was not the main thing; it was the utter degradation. I felt so helpless. We could do nothing about that.”

In examining current end-of-life medical practices, the report usefully highlights the important inconsistency in the concern many of those opposed to a change in the law raise – the risk of vulnerable people being coerced into requesting an assisted death. The current law allows people to refuse life sustaining treatment, thereby hastening their death.  Indeed, the current right to refuse life-sustaining treatment is argued by some, such as palliative care consultant Baroness Ilora Finlay, to be a reason for not changing the law. However, there is exactly the same risk of vulnerable people being coerced into refusing life-sustaining treatment as there is in their being coerced into requesting an assisted death, were that option available. The principle difference is that with medically assisted dying the death will be quicker and painless, so likely to be a more attractive option to the patient. The report points out that “the Association for Palliative Medicine’s specialist guidance states it is the responsibility of doctors to validate the person’s decision [to refuse life-sustaining treatment] by ensuring that it is the ‘settled view of the patient,’ ‘that there is no coercion’ and that the patient has capacity to make the decision.” If palliative care good practice can handle the risk of coercion safely enough in the case of someone refusing treatment, why is this raised as an objection to changing the law on assisted dying? The right-to-die community should do much more to publicise and explain this inconsistency as it demonstrates that there are already mechanisms deemed safe enough to address the concern over possible coercion of vulnerable people. This concern is used as the primary objection to a careful relaxation the assisted suicide law to permit medical assistance to die, when requested by a mentally competent person who is suffering incurably and intolerably.

The Dignity in Dying report is highly valuable as far as it goes, however, the true situation is actually much worse than it portrays, as the report fails to consider those who are suffering incurably and unacceptably but who are not close to dying. This includes people suffering from dementia for example, which is the leading cause of death in England and Wales, responsible for 1 in 8 deaths and almost 1 in 4 for women over 80. In the early and mid stages of dementia the sufferer may be aware of the gradual annihilation of the person they are – something some people find completely unacceptable, people like Alex Pandolfo for example.  Similarly it excludes those suffering intolerably from non-terminal but incurable illnesses, people like Omid T, who suffered from Multiple Systems Atrophy and ended his life with medical assistance in Switzerland; Tony Nicklinson, who had locked-in syndrome and ended his life by refusing food after his legal case failed; and Debbie Purdy who suffered from Primary Progressive MS and died by stopping eating and drinking.) Dignity in Dying does not campaign for a change in law which would help such people, whereas MDMD does.

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Government to review “Terminal Illness” definition

The common understanding of the term “terminal illness” is ‘a disease or condition which can’t be cured and is likely to lead to someone’s death.’ This can apply to advanced cancer, dementia (including Alzheimer’s), motor neurone disease (MND/ALS), advanced heart disease and many other illnesses.

However, the term is used in a more restrictive sense in some situations. In England and Wales someone with six months or less to live can claim benefits under Special Rules for Terminal Illness, entitling them to fast-track access and the highest rate of payment for several benefits.

A report from the All Party Parliamentary Group (APPG) for Terminal Illness shows severe problems with the approach of trying to put a life-expectancy time limit on the definition of “terminal illness”. The report cites:

  • ‘In 1990 [when the definition was introduced into UK law], many terminally ill people were unlikely to survive for six months after receiving a terminal diagnosis – today, advances in treatment and diagnosis mean that many more people are living with terminal illness for longer.’
  • ‘The six-month rule also wrongly assumes that life expectancy can always be accurately predicted. It is very challenging for clinicians to estimate how long someone has left to live’
  • ‘Clinicians’ interpretations of the law also vary significantly, and many believe they will be held accountable if their prediction turns out to be wrong’
  • ‘The assumption that people with terminal illnesses will need support only for a matter of months until they die is outdated and does not reflect the modern reality of many terminal conditions, where people can live and need ongoing support for several years with conditions that cause progressive debility over time.’
  • Evidence from the Royal College of GPs that ‘Doctors may be concerned that a patient’s state of mind will be negatively impacted upon hearing their life expectancy may only be six months – even if this is only a “reasonable expectation”’. For this reason GPs may be reluctant to specify a time scale, especially when they know there is considerable uncertainty.

 

It is incredibly difficult to predict with any degree of accuracy how long someone has left to live.

Dr Clare Gardiner, Senior Research Fellow at the School of Nursing & Midwifery, University of Sheffield

In 2018 the Scottish parliament removed any explicit time limit from the equivalent laws in Scotland, following advice from the medical community there. The APPG report endorses the Scottish approach, saying ‘there is no evidence-based reason why the UK government cannot follow the Scottish government and allow medical professionals to certify that a person is terminally ill, entitling them to fast-track access to benefits, with no arbitrary and outdated time limit.’

Having evaluated the evidence the report concludes that: ‘the current legal definition of terminal illness, with its “six-month rule”, is unfit for purpose – it is outdated, arbitrary and not based on clinical reality.‘ Its first recommendation is that ‘the UK government amends the definition of terminal illness in UK law so that a person is determined as having a terminal illness if it is the clinical judgment of a registered medical practitioner or clinical nurse specialist that they have a progressive disease that can reasonably be expected to cause the individual’s death.’

MDMD strongly support this conclusion and recommendation. We want people to have a better end of life experience, keeping their quality of life as high as possible for as long as possible. People who have an incurable illness that will eventually end their life should have ready access to the benefits they need.

Following the publication of the APPG report, Work and Pensions Secretary Amber Rudd announced that the government will review its benefits system for the terminally ill. MDMD welcomes this news and hopes that this will lead to England and Wales following Scotland’s example and dropping any life-expectancy time limit on its definition of “terminally ill”.

Another problematic use of the narrow six-month definition of terminal illness is as a possible criterion in determining who is eligible for assisted dying. The criterion is used in the US states such as Oregon which permit a limited form of assisted dying. MDMD has always argued against this approach, in part because of the problems with prognosis highlighted in the APPG report.

The campaign group Dignity in Dying chooses to use this six-month life expectancy criterion as their definition of “terminal illness”. They state on their website ‘We believe the right law for the UK is one that allows dying people, with six months or less to live the option to control their death. We do not support a wider law.’ They omit to state why they hold this belief, other than pointing to experience with the law in Oregon where this has been a criterion in the Death with Dignity law there since 1997.

There are alternatives to the Oregon model that should be seriously considered. In 2016 Canada, aware of the limitations of the Oregon model, chose to explicitly exclude any precise time limit from the criteria of their assisted dying law. The Canadian law uses the more flexible criterion of ‘their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining’ (241.2(2d) bold added for emphasis).

From MDMD’s perspective, a better example would be Switzerland, where at least one Briton goes every 8 days for a medically assisted death. Assisted suicide has been possible in Switzerland since 1942 with no life expectancy criterion.

In their written evidence to the APPG for Terminal Illness report, (see section 22, starting on page 52), Dignity in Dying agree that ‘the current definition of terminal illness is not fit for purpose…’, but add the caveat ‘…in regard to fast track access to benefits’.  They continue ‘for the avoidance of doubt, Dignity in Dying’s position is that a definition of terminal illness based on a six month prognosis would be appropriate for other purposes, such as access to assisted dying (should the law change on that issue).‘

They argue that the need for additional benefits comes earlier than a need for the option of a medically assisted death and cite the situation in Victoria, Australia where benefit entitlement is available with a 24-month life expectancy, but assisted dying is available only for those with a life expectancy of 6-months or less, (or 12 months or less for those with neurodegenerative conditions). However, they fail to explain why they believe a) a fixed time limit is necessary in the case of assisted dying and b) why that time limit should be six months.

Although MDMD agree that the need for additional financial support will typically come earlier than the need for an option of medically assisted death, in neither case is a fixed time limit appropriate for the reasons given in this APPG report: it is impossible for doctors to accurately predict life-expectancy, and giving a time prognosis may be detrimental to a dying patient’s state of mind. A further complication in the case of assisted dying is that some terminal illnesses cause a loss of mental capacity in their later stages. People with these conditions need to be able to exercise their choice while they can still make a safe and reliable decision if they wish to avoid an imminent deterioration in their quality of life which they consider unacceptable. Mental capacity is frequently lost well before they would have a six month life expectancy.

MDMD believe that people suffering from incurable illness should be helped to have as high a quality of life as possible, for as long as possible, but that when they find their quality of life permanently below the level they can tolerate, they should have the option of a medically assisted death.

Ultimately decisions should to be taken on the grounds of the financial need for state benefits for those with an incurable illness, and the personal end of life choices for those who are incurably suffering. These decisions are not helped by a notion of “terminal illness” based on unreliable life expectancy estimates and artificial time limits. England and Wales should follow Scotland’s example.

Update July 2020

A legal case in Northern Ireland was brought by a woman with MND who was refused additional benefits because she was not within six months of dying. The judge ruled that she “suffered a breach of her human rights”. The BBC report that evidence presented in the case showed that 14% of those who were granted payments because they were expected to die within six months, were still alive three years later.

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Renewed campaign to legalise assisted dying in Scotland.

A major push is being made to change the law in Scotland, led by Dignity in Dying (Scotland).  MDMD strongly supports this. Although their campaign is limited to the “terminally ill”, we note that Scotland now has a broader definition of terminal illness that no longer includes the six month life expectancy criterion. We hope that the campaign in Scotland provides the first step towards a law that will help those who are incurably suffering, like Tony Nicklinson, Debbie Purdy and Omid, in additional to the “terminally ill”.

As part of the campaign, in this BBC story, Kay Smith, who is suffering from various untreatable conditions which are expected to result in a painful death, describes how she wants an assisted death. As a former palliative care nurse, now in palliative care herself, she knows better than most the limits of what palliative care can offer.

This article and others quote the results of a Populus survey which shows that 87% of respondents in Scotland back a change in law for those who are terminally ill with 6 months or less to live. Interestingly the figures quoted for Scotland are a little higher than the 84% quoted for Great Britain. The new poll shows increased support than in polls a few years ago. These results are in accordance with MDMD’s recent poll, though the questions are not directly comparable.

The MDMD poll compared acceptability of various forms of assisted dying. The greatest level of support was for terminal illness in the broad (Scottish) sense of an illness which will eventually cause death, rather than limited to those with a life expectancy of 6 months or less. The MDMD poll found 93% considered medical assistance to die acceptable in at least some circumstances for someone who was terminally ill in this broad sense, compared to 88% when the 6-month criterion for terminal illness was included.

Perhaps the difference in Scotland can be explained as the definition of “terminal illness” in Scotland no longer includes the 6-month criterion, following a change in law instigated by Scottish doctors a year ago. This is very welcome news as it implies that the Scottish campaign for a law permitting assisted dying for the “terminally ill” will use the broader criterion.

MDMD is pleased that there are now discussions to try to broaden the terminal illness definition in England and Wales too. We strongly support this move and hope that it results in England and Wales following Scotland’s lead.

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Parliament hears from top Canadian Doctors, on the experiences of assisted dying abroad

On Tuesday 11th December, the All-Party Parliamentary Group (APPG) on End of Life Choices, met to hear from Dr Sandy Buchman and Professor Sir John Temple, on the role of doctors within a public discourse on assisted dying.

Dr Sandy Buchman, the President-elect of Canada’s Medical Association, who was joined by his Vice-President Dr Jeff Blackmer, discussed the role doctors had played in shaping Canada’s decision to legalise assisted dying in 2016. Professor Sir John Temple, the previous President of the British Medical Association (BMA), spoke about his concerns regarding the representation of doctors views.

“I see assisted dying as one more tool in the service of palliative care’s core mission of alleviating suffering” – Dr Sandy Buchman

At the start of his talk, Dr Buchman explained that “medical-aid-in-dying” (MAID) began in Canada, in response to two developments. First, the Canadian Supreme Court unanimously struck down a federal prohibition of assisted dying in 2015. Second, the Canadian Parliament passed an assisted dying law in 2016, which permitted MAID for anyone who was: (i) 18 years or older, (ii) suffering from a grievous and irremediable condition, (iii) enduring psychological or physical suffering which was intolerable, (iv) was capable of giving informed consent and (v) had a reasonably foreseeable natural death.  

Turning to the role that doctors had played during these developments, Dr Buchman explained that throughout Canada’s public discourse, the Canadian Medical Association (CMA) had chosen to play an active role in steering discussions. He argued that whilst it had been the CMA’s longstanding position, to support the right of every physician to follow their conscience, he believed that to uphold this commitment it was necessary to support both the right of  “contentious participation” and “conscientious objection”. Thus, in 2015 when the CMA intervened in the Carter Case, they did so only to provide expert information from a medical perspective and without taking any particular position. Equally, during the 2016 legislative process, the CMA only intervened to provide objective information, and allow Parliament to engage in an informed and full debate.

Dr Blackmer went on to explain that the CMA has purposefully chosen not to approach assisted dying from a yes/no perspective, but instead to broach a wider debate about the role doctors should play in end of life care. Consequently, he explained that it had been essential to the CMA, to consult widely with the public, physicians and medical stakeholders, and understand their concerns before adopting a neutral position.

Indeed, in a powerful moment, Dr Blackmer warned other medics that “if [they] chose not to become involved [in the debate], all that [would] happen is that a conversation [would continue], without them, and they would lose an opportunity to shape the debate”. Both doctors closed their talk, by stressing that they believed it was the responsibility of doctors, to engage within a public debate and provide unbiased information so as to enable a national conversation to move forward.

“Medical organisations must engage with the debate with evidence and honesty and adopt a position that respects patitents’ and professionals’ choices.” – Professor Sir John Temple

Professor Temple then followed Dr Buchman and Dr Blackmer, by focusing upon an emerging divide between the views of medical professionals, and the organisations representing them. At the core of the debate, Professor Temple suggested that a fault-line had emerged within modern medical practice between the profession’s ability to extend life, and its inability to alleviate suffering.

My Death, My Decision noted with particular interest Professor Temple’s discussion of the BMA’s official opposition to assisted dying. Having highlighted that 80% of the public now support changing the law to permit assisted dying, and that the experience of Canada demonstrates that assisted dying laws are not abuse, nor likely to affect a large percentage of the population, Professor Temple suggested that the BMA’s continuing opposition was “troubling”. In particular, he stressed that whilst the BMA has a membership 150,000, only 197 doctors were responsible for its official policy of opposition. Setting aside his democratic concerns, Professor Temple condemned the BMA for failing to reflect the views of doctors, as evident from a recent poll in the British Medical Journal (the BMA’s independent paper), which found 55% of doctors supported a change in the law.  

Turning to the opinions of the wider medical community, Professor Temple suggested that those such as the Royal Nursing Colleges, who have followed a policy of neutrality since 2009, were ahead of doctor’s associations and it was now time for a “fresh meaningful and informed debate” to begin.

Professor Temple closed his talk by highlighting that the BMA, General Medical Council and Royal College of Physicians’ had proven, when offering to assist Guernsey during its debate on changing the law, that the medical profession was capable of approaching the debate constructively. He argued that whilst many doctors may fundamentally disagree with the notion of assisted dying, and that this conscientious objection must be respected, the modern articulation of the medical profession’s practice oath now reads: “I will respect the autonomy and dignity of my patient”. Consequently, in an age when the medical profession is increasingly moving away from paternalism, it is imperative for:

(i) Medical Associations to properly ascertain the beliefs of their members.

(ii) Medical Associations to examine the examples of assisted dying abroad, most obviously the situation in Canada.

(iii) Medical Associations to listen and engage with the stories of those affected by the UK’s prohibition of assisted dying and their families.

Following the two talks, the floor was then opened to a question & answer session. Notable contributions included a question from Paul Blomfield MP, who asked about the degree of safeguards in Canada and Lord Lipsey of Tooting Bec, who raised concerns about the popular understanding of opinion polling on the right to die.

Two questions of particular interest to MDMD, came from Catherine West MP, who asked about potential assurances to those living with a long-term disability, and Lord Warner of Brockley, who asked how the CMA had overcome a rigid opposition from the medical community.

In responding to the first question, Dr Buchman commented that he would not presume to tell the UK how to address the challenge of protecting vulnerable groups, such as the disabled. However, he suggested that were the UK to follow Canada’s example, legislators would be wise to continue considering the issues of assisted dying, as Canada has done, even after the passage of legislation. Dr Blackmer, a specialist in disability and palliative care, made the astute observation that whilst he can sympathise with the dismay of many disabled groups, evidence from Canada indicates that those who are most vulnerable tend to be excluded from accessing end of life care, rather than pressured into it. Consequently, he suggested that those who are most vulnerable in society, are often most frightened by the prospect of having no choice at all.

Regarding the opposition of the medical community,  Dr Buchman said that he believed it was the open approach of the CMA which allowed him, and ultimately those who opposed assisted dying as well, to feel confident in their positions and to create a culture of mutual respect.

As a palliative care specialist, Dr Buchman acknowledged that his personal journey towards accepting assisted dying had spanned over two years. He stressed, that it was his belief  high quality palliative care was key to good end of life planning, but that assisted dying did not threaten the provision of such care, but somewhat perversely strengthened the case for ensuring that palliative care was accessible and available. Closing on a personal example, Dr Buchman explained that whilst he was initially hesitant about the prospect of assisted dying, he ultimately decided that helping patients who wanted to decide when and how they died, was an extension of what he had been doing already: helping to relieve suffering. Dr Buchman explained that when he first participated in an assisted death, for a professor of medicine suffering from Lewy body dementia, he had been struck by the sense of “illumination”, as though “a weight had been lifted”, when he agreed to discuss the prospect of an assisted death, let alone participate. He explained that whereas before his patient had explained he felt hopeless, especially after exhausting the options of traditional palliative care, the option of an assisted death enabled the patient’s mood to lift, and allowed him the dignity to die from a peaceful death surrounded by those he loved.  

Subsequent to their meeting on Tuesday, Dr Buchman and Dr Blackmer also attended a meeting at the Scottish parliament where they told MSPs “I’ve learned from clinical experience that sometimes the only way to alleviate a patient’s suffering is to allow them to choose an assisted death. It’s not an easy decision to become a provider of assistance in dying. It took the better part of more than two years to sort through my deepest emotions. Every case is difficult – every single case is a challenge. I never see this as an easy decision. It’s as difficult as you can make in medicine. No-one I know takes it lightly. But I look to medicine to alleviate suffering. Ultimately I have decided that helping eligible patients who wanted choice over the manner and timing of their death was an intention of what I was doing all along – that is relieving suffering. This is a choice that I have made personally, this is a matter of conscience which should unequivocally be respected.”

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PRESS RELEASE: Right to Die Campaigner Noel Conway Loses challenge in UK’s Highest Court

Today, assisted dying campaigner Noel Conway has lost permission to bring a case before the Supreme Court.

Diagnosed with Motor Neurone Disease (MND) four years ago, the retired teacher from Shrewsbury, is dependent upon a ventilator for up to 23 hours a day and has limited movement in his right hand, neck and head. Mr Conway now says that he wants the choice to decide when and how to die. However, he would be unable to do so without assistance.

Under current UK law, it is a criminal offence to assist the death of another and anyone found guilty faces a jail sentence of up to 14 years. However, at a permission hearing last week, Mr Conway’s lawyers argued that Section 2(1) of the 1961 Suicide Act was in breach of the 1998 Human Rights Act and should be declared incompatible.

In a handed down judgement today, the 3 justice panel comprising President Lady Hale, Deputy-President Lord Reed and Lord Kerr said that despite some legitimate differences of opinion within the court:

“Mr Conway could bring about his own death in another way, by refusing consent to the continuation of his NIV.”

“Ultimately, the question for the panel is whether the prospects of Mr Conway’s succeeding in his claim before this court are sufficient to justify our giving him permission to pursue it, with all that that would entail for him, for his family, for those on all sides of this multi-faceted debate, for the general public and for this court. Not without some reluctance, it has been concluded that in this case those prospects are not sufficient to justify giving permission to appeal.”

Mr Conway’s case followed almost two months after another assisted dying campaigner, Omid T, had lost a similar legal challenge and ended his life in Switzerland.  

It is unclear what the longer term implications of this judgement may be. There is some indication from the court’s focus upon Mr Conway’s non invasive ventilation, that it would be possible for a different claimant, without this option, to bring a new case in the future.

Phil Cheatle, Coordinator of My Death, My Decision (MDMD) an organisation which campaigns for the law to change said:

“The public overwhelming support a positive change in the law, to help those like Noel to die with the dignity they deserve. Sadly, our courts and our parliamentarians are divided.”

“Motor Neurone Disease robbed Noel of his independence. It will eventually rob him of his dignity. Tragic as this is, it is not because of Motor Neurone Disease that his family will now be robbed of a peaceful last memory. It is because the law is wrong. We will continue to fight to help those like Noel and countless others incurably suffering.”

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Videos from Healthcare and Secularism 2018 Conference

In October 2018, the National Secular Society and the Secular Medical Forum held a joint conference on Healthcare and Secularism. The final two talks concerned assisted dying and the right to die. Both talks were excellent. Videos of the talks are available on YouTube and are embedded here with some description and comments.

1. Dr. Jacky Davis – An Update on Assisted Dying – One hundred million people now have access to it, why can’t we?

Jacky Davis is the Chair of Healthcare Professionals for Assisted Dying (HPAD). Jacky is also a consultant radiologist at Whittington Hospital; a member of the BMA Council and of the BMA ethics committee; and a board member of Dignity in Dying.

The talk makes many excellent points – especially in covering why it is so difficult for the BMA to change its approach on assisted dying. Policy is decided by an annual conference of only 300 people. The BMA have so far refused to hold a ballot of all their members on whether to adopt a neutral position on assisted dying. MDMD strongly endorse Jacky’s calls for the BMA to hold such a vote.

Of particular interest to MDMD is Jacky’s description of a public debate in Gloucester which she took part in prior to the 2015 Marris Bill debate in the House of Commons. She said “I was in a position I often find myself in. I was being attacked because they [the audience] didn’t think that our position on assisted dying went far enough.”

Jacky went on to discuss criticism of the 6 month criterion. She dismissed, as “another straw man”, the argument used by some, that the difficulty of accurate prognosis was a reason for not changing the law. She then described those who wish to be able to have a medically assisted death: “These people are not people who want to commit suicide. These are people who want to live as long as they can, until they don’t want to any more.”

One really positive suggestion Jacky put forward was with the practicalities of doctors working with an assisted dying law. She estimated that, extrapolating from the situation in Oregon, each GP practice would expect to see one patient who wanted as assisted death every 7 years. GPs might reasonably be concerned that they wouldn’t know how to deal with such rare events. Jacky suggested regional teams of trained experts who GPs could work with.

2. Dr Michael Irwin – When will MARS (Medically Assisted Rational Suicide) land on the UK?

Michael was Medical Director of the United Nations; chairman of the Voluntary Euthanasia Society prior to it changing its name to “Dignity in Dying”; and a past president of the World Federation of Right-to-Die Societies. He founded the Society for Old Age Rational Suicide in 2009 and was its coordinator until 2015, after which it was renamed “My Death, My Decision” (MDMD). Michael is a patron of MDMD.

Michael picked up on a number of points made by Jacky, saying “I’m very much is favour of the Oregon Bill, but as a start, it should go much further.”

Michael discussed some different approaches to defining “terminal illness”, contrasting a GMC reference to “dying over the next 12 months” to the Oregon Bill’s 6 months, and the situation in Scotland where a recent change to benefit legislation replaced a 6 month “terminal illness” criterion with an evaluation by doctors on a case by case basis without requiring an estimate of life expectancy.

Michael pointed out that there is currently uneasiness in Oregon over their 6 month criterion with moves to expand it to cover longer term degenerative diseases.

MDMD Conclusions

These are two very experienced campaigners, both with a strong medical background. It is fascinating to hear both the common ground and the differences in their views. From MDMD’s perspective Jacky’s defence of the 6 month criterion does not stand up to serious scrutiny, although it may be a realistic political compromise in the UK and elsewhere in the short or medium term. We recognise that is has provided an important option to millions of people around the world – which we in the UK do not have.

However, dismissing the difficulties of accurately giving a life expectancy prognosis as a “straw man” seems too simplistic. Even without the moral dilemma of assisted dying, Scottish doctors found the criterion unacceptable and successfully pressed for this to be removed as a criterion in benefit assessments. If this is the case for benefit assessment, why not also for assisted dying?

Even more importantly, MDMD fully agrees with Jacky’s statement that the people who should be allowed access to medical assistance to die are “… people who want to live as long as they can, until they don’t want to any more”, (when this is due to the intolerable and incurable medical conditions they face, which even the best palliative care cannot alleviate). But Jacky’s description includes high profile cases like Tony Nicklinson, Debbie Purdy, and Omid T. None of these people could be helped by the Oregon-style law she advocates. In addition, some of those in early stage dementia fit her description, while they retain mental capacity – people like Alex Pandolfo who plans to go to Switzerland to end his life when his condition becomes unbearable for him. They face the later stages of dementia when mental capacity will be lost, but are also ineligible for help from an Oregon-style law. Dementia is now the cause of 1 in 8 of all deaths in England and Wales – and nearly 1 in 4 deaths of women over 80, according to the latest ONS data.

In her final interview, in December 2014, Debbie Purdy, who worked closely with Dignity in Dying in her campaign work, said “I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.” Michael Irwin, together with MDMD, Friends at the End and Humanists UK, very clearly support Debbie’s point of view. Jacky Davis failed to explain why she advocates an approach which wouldn’t help people like Debbie, while at the same time arguing for “people who want to live as long as they can, until they don’t want to any more”, to have the option of a medically assisted death, which is just what Debbie wanted. With this approach, we expect that Jacky will continue to hear the views she described from her audience in Gloucester.

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Scottish Parliament’s Cross-Party Group on End of Life Choices meeting

MDMD Associate Coordinator Colin Brewer represented MDMD at the Scottish Parliament’s Cross-Party Group on End of Life Choices. Here is his report…

We heard a good presentation by Dignity in Dying’s Scottish organiser on their excellent recent survey of people from Britain who approached Dignitas for assistance and the financial, legal and bureaucratic obstacles that some of them encountered in the process. (I presented my own, more modest, research in the same field at Euthanasia2016 – the international conference organised by the World Federation of Right to Die Societies in Amsterdam two years ago.) When I mentioned the importance of including early dementia among other slowly progressive conditions that should at least be discussed in any legislative proposals, the reaction was interesting. Several people applauded or nodded vigorous approval and some later spoke in favour of the idea. Others, while apparently not unsympathetic, were worried that even mentioning dementia would make legislation even more difficult to pass. I noted that in Oregon and Canada, dementia is now up for discussion as an approved addition to the present categories. MDMD looks forward to contributing to Westminster’s equivalent group in the near future.

MDMD believe discussion of dementia is particularly important now that it is the largest cause of death in England and Wales, and many more people die with it, rather than of it.

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New Report on Outsourcing Assisted Dying to Switzerland

An excellent report ‘The True Cost – How the UK Outsources Death to Dignitas‘ was recently published by Dignity in Dying, discussing the many difficulties associated with UK citizens choosing to end their lives in Switzerland. (Despite it’s title, the report also considers other Swiss organisations prepared to offer medical assistance to die to foreign nationals, such as Lifecircle.) The underlying research was carried out by Bronwyn Parry, Professor of Global Health and Social Medicine at King’s College London and her Research Associate Sally Eales.

One day we will look back in disbelief at how long it took Parliament to realise this.

In the report’s foreword, MP Kit Malthouse, (who chairs the Choice at the End of Life All-Party Parliamentary Group), says “Our outdated laws discriminate between rich and poor, discourage proper conversations between patients and their doctors, criminalise grieving relatives who spend time with their loved ones in their dying moments and oblige people to end their lives before they are ready. Worst of all, while they are predicated on preserving the sanctity of life, they show no mercy to those facing an agonising death, and deny free will to those whose lives and deaths depend upon it. One day we will look back in disbelief at how long it took Parliament to realise this.” The report gives substance to these points through analysis of the current situation and using quotes from many interviews with those who have been involved in the process.

The report goes into admirable depth in many related issues, including:

  • The confusion and inconsistency over the medical approach to requests for discussion about assisted death or requests for required documents. This is something also covered in a recent article by Dr Paul Teed who is currently carrying out research in this area at Bristol University. (If you have personal experience and would be willing to take part in this research you can contact Paul anonymously through his website.)
  • The complexity of the process of arranging an assisted death in Switzerland. The process can take many months. MDMD understand from Dignitas that the process can take 3 or 4 months. Some people leave it too late to get started… to the point that by the time they have the “green light” to go, they are too ill to travel. In a response to a follow up question from MDMD, Dr Erika Preisig of Lifecircle told us that 8% of applications are not progressed because the applicant is no longer able to travel.
  • People are ending their lives too soon, due to the need to be able to travel to Switzerland. Dr Preisig told MDMD that she estimated that 40% of the people who end their lives at Lifecircle choose to do so sooner than they might, if they had the option of a medically assisted death at home, due to fear of no longer being able to travel.
  • Why even the best available palliative care is not always sufficient.
  • The alternatives some people feel forced to consider: refusing treatment and suicide.
  • The cost – typically around £10,000. This figure should, however, be viewed in the context of some other costs:
    a) It includes cremation costs which could cost around £3,000 in the UK
    b) Anyone having to pay for their own residential nursing care will typically be paying around £1,000 per week.
    c) Dignitas are sometimes able to reduce or waive their fees for those who do not have sufficient financial means.

This important and hard-hitting report makes an overwhelming case for changing the UK law. Until that happens there are no good alternatives for some people. The clear conclusions for anyone contemplating “going to Switzerland” are to: apply early; expect bureaucratic difficulties; and, regretfully, plan to go before you would ideally choose, while you are still able to travel. MDMD recommend reading the report in full and thank those who contributed to its production.

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