UK Parliament

Open Letter to the Secretary of State for Justice

To mark the tenth anniversary of Debbie Purdy’s landmark assisted dying case, which resulted in the current Director of Public Prosecutions (DPP) guidelines on the Assisted Suicide law, My Death, My Decision has published an open letter to the incoming Secretary of State for Justice, Rt Hon Robert Buckland QC MP,  calling for a review into the working of the Assisted Suicide law in England and Wales. The Guardian published the letter on the anniversary date of 30th July. The call follows a recent parliamentary debate on the issue in which MPs made a similar call.

The full text of the letter is available here. The list of signatories is diverse and impressive, indicating the range of support MDMD has for its position and its growing influence. In addition to MDMD Chair Trevor Moore, the signatories include:

Medical Professionals:
Sir Iain Chalmers – Founder of the Cochrane Collaboration and acting coordinator of the James Lind Initiative
Dr Phil Hammond – Physician, Broadcaster, Comedian and Commentator
Dr Michael Irwin – Former Medical Director United Nations
Dr Henry Marsh – Physician and Author
Professor David Nutt – President of the European Brain Council
Professor Wendy Savage – General Medical Council and British Medical Association’s Ethics Committee Member
other members of MDMD’s Medical Group.

Philosophers:
Dr Julian Baggini – Philosopher, Journalist, and co-founder of the Philosophers’ Magazine
Professor A.C Grayling – Philosopher, Journalist, and founder of the New College of Humanities

Church Leaders:
Rev’d Canon Rosie Harper – Canon of Christ Church, Vicar of Great Missenden, Chaplain to the Bishop of Buckingham and member of the General Synod.
Rev’d Scott McKenna – Minister Mayfield Salisbury Church

Legal:
Professor Emily Jackson – UK Legal Scholar

Media:
Virginia Ironside – Journalist
Polly Toynbee – Journalist and Author
Andi Reiss – Independent film maker who made the documentary ‘Endgame‘.

Campaigners:
Andrew Copson – Chief Executive Humanists UK (Humanists UK is MDMD’s Assisted Dying Coalition Partner Organisation in England and Wales)
Paul Lamb – Currently bringing an Assisted Dying Court case.
Phil Newby – Currently bringing an Assisted Dying Court case.
Jane and Lauren Nicklinson – Assisted Dying Campaigners (Widow and Daughter of  Tony Nicklinson who brought an Assisted Dying Court Case)
Omar Puente – Assisted Dying Campaigner (Widower of Debbie Purdy)
MDMD supporters who have accompanied a relative to Switzerland for a medically assisted death that would not be permissible under a law limited to those with a life expectancy of 6 months or less, (as is the case in Oregon and which was rejected by the UK parliament in September 2015).

Other MDMD Patrons not included above:
Miriam Margolyes – Actor
Lord Martin Rees – Cross-bencher House of Lords

MDMD are most grateful to all signatories in coming together to support this call.

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Parliamentary debate on the UK Assisted Suicide Law

On 4th July 2019 the House of Commons had the first opportunity to debate assisted dying since the Marris Bill failed in September 2015. The debate can be seen in full here. Prior to the debate MDMD circulated this briefing to MPs.

Nick Boles MP opened the debate by contrasting the death of his father, who ended his life by exercising his right to refuse life sustaining treatment, with that of Geoff Whaley who needed the currently illegal assistance of others for the good death he wanted. Nick Boles explained that “the purpose of today’s debate is not to propose a new law on Assisted Dying, but to understand the effect of the current law… It is only when we have fully understood all the different ways in which the current law impacts the British people that we should consider returning to the question… of what kind of change in the law might be justified.” He then called on the Lord Chancellor and the Secretary of State for Justice to initiate a formal call for evidence on the impact of our existing laws on Assisted Dying. He cited the very limited ability of parliament to gather evidence as a primary reason for this request.

The debate considered many points of view. Several MPs gave moving speeches describing very bad deaths that would have been vastly better had a compassionate Assisted Dying law been in force.  Paul Blomfield MP movingly described his father’s premature unassisted suicide.  “The current law forced my father into a lonely decision and a lonely death.” Although both he and his father strongly support improved end of life care and the hospice movement, he pointed out that “no hospice can enable everybody to die with the dignity that they would want”.  It was soon after a palliative care consultation that his father took the decision to end his life while he still could, without implicating anyone else. “If the law had make it possible he could have shared his plans with us. Knowing that he could, with support, go at the time of his choosing, would have enabled him to stay longer.”

Sir Norman Lamb MP gave further moving examples from his constituents which demonstrate ways in which the current law is failing. One case was a woman’s failed suicide which put her daughter in an impossibly difficult position as her Lasting Power of Attorney. He ended: “it is the individual and not the state who should decide, in a period of terminal illness, whether they bring their life to an end, and that is why the law should change.”

Crispin Blunt MP made the important observation that “The hard truth is that more of us are going to have to grapple with the pain and indignity of crippling progressive infirmities in later life and if we don’t change the law, even more people than the current 1 every 8 days may travel to Switzerland for an assisted death.”

Other MPs highlighted the unfairness of the current law, as the option of a medically assisted death in Switzerland is only available to those who can afford the cost; who are capable of handling the bureaucratic obstacles and who are capable of traveling to Switzerland, often earlier than they would wish.

Steve McCabe MP made a speech in which he referred to the Assisted Dying Coalition and the MDMD poll results. Although he voted against the Marris Bill, he believes the issue needs to be considered by parliament again. He expressed his concerns over a 6-month life expectancy restriction citing the difficulties doctors have in predicting this, and the suffering people it unfairly excludes. He explained that he was very moved by the case of Paul Lamb, saying “I think we need to focus on the quality of life, the capacity for life, and the rational sound judgement of a person who makes such a decision. Life expectancy in itself doesn’t tell us anything about suffering. So I think we should be considering Assisted Dying both in the context of terminal illness but also suffering and a lack of meaningful life.”

Those MPs opposed to changing the law referred to the traditional concerns: the protection of vulnerable people; the need for better palliative care; the views of disability groups; and religious sanctity of life.

Early on in the debate Lyn Brown MP intervened in Nick Boles’ opening speech to describe her mother’s death. She feared that if Assisted Dying had been available her mother would have spent her final months consumed by guilt and anxiety about when she should choose that option because she would have worried about the effect on her close family, the cost of her care, and the NHS resources she was taking up. Nick Boles responded to this by saying that any law would have multiple checks that the requestor was not pressurised by others to make their request. He described the checks that Dignitas make that ensure people are making their choice themselves.

This aspect of the debate is a clear example of the need for a careful gathering and assessment of evidence in the way Nick Boles requested. The concerns of vulnerability and coercion are very important. MDMD hopes that evidence gathering will address:

  • Evidence of the extent of coercion in other jurisdictions regarding requests for medically assisted deaths.
  • Any evidence of coercion in the working of the current law which allows people to refuse life-sustaining treatment to end their lives. (For example, Nick Bole’s father or the case of the “champagne suicide“.) Such people are just as open to coercion to end their life as others who would be eligible for assisted dying under an appropriate law. How do we  currently manage the risk of them being “consumed by guilt and anxiety” over whether or when to choose to refuse treatment as a means of ending their life? Is there any evidence to suggest that the same approach would be inadequate were Assisted Dying legalised?
  • Evidence of how reliably sufficient mental capacity is assessed in legislations which permit various forms of assisted dying, to ensure that anyone requesting an assisted death is making their own safe decision, free from undue persuasion, on a matter as serious as choosing to take their own life.

Some MPs referred to the opposition to Assisted Dying of most religious organisations, saying how they were in favour of Assisted Dying despite their own religious belief. Noel Conway‘s MP Daniel Kawczynski, a Roman Catholic, summed these views up when he said “Perhaps the Church doesn’t always get everything right when it comes to how human beings behave, interact, and ultimately decide to die.”

A number of MPs, including Vince Cable, stated that they had changed their mind on the issue since the Marris Bill debate. In closing the debate Nick Boles said: “I have changed my mind about this issue. Many people have changed their minds about this issue. I hope that more people will change their mind about this issue so that we can get on and change the law and make this country a more humane place for people to live and die.” These are sentiments that MDMD wholeheartedly endorse, but there is still a very long way to go.

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93% think that assisted dying is acceptable in at least some situations

My Death, My Decision’s Campaign Policy Director, Phil Cheatle, breaks down the new research commissioned by MDMD.

MDMD has released the results of research it sponsored through the National Centre for Social Research (NatCen). The work tested public acceptability of various forms of assisted dying. In all cases considered the person is suffering from an incurable illness and feels their quality of life in below the level they are prepared to accept (or will soon become so). They have sufficient mental capacity to make a life-ending decision and have considered this option carefully, discussing it with professionals who have agreed that their request is within the (hypothetical) law. The different conditions tested were:

  • Those who are suffering from an illness which will eventually cause their death (regardless of timescale).
  • Those who are expected to die from their illness within 6 months.
  • Those whose illness will not cause death
  • Those suffering from Alzheimer’s disease before they lose the mental capacity to make a life ending decision.

The results are discussed in detail here.

What is astounding about these results is the very high level of support for all these forms of assisted dying. Depending on the scenario, between 88% and 93% of respondents thought it acceptable in at least some situations. Comparing results between the scenarios, it demonstrates clearly that public opinion is strongly in favour of the sort of broader approach to assisted dying favoured by MDMD, as opposed to narrower approaches based on the law in Oregon which limit assisted dying to those who are within 6-months of dying. MDMD is proud to be a founder member of the newly formed Assisted Dying Coalition which brings together the UK organisations campaigning for this broader approach to assisted dying.

We were surprised that the research found that the strongest support was for those whose illness would eventually kill them, regardless of timescale. In this situation 93% of respondents thought that a medically assisted death was acceptable in at least some situations. That is a huge majority.

The current law in the UK prevents assisted dying in all situations. Our new research shows that the doctors and politicians who continue to oppose a change in this law are even more out of tune with the people they are supposed to be serving than was previously thought. How can we have confidence in the medical profession if they do not respect our rational end-of-life wishes? How can we have confidence in our politicians if they refuse to change a law which makes some people suffer unnecessarily, against their will at the end of their lives – making others decide to go to Switzerland for medical assistance to end their lives, often too soon?

Palliative care is a wonderful service that helps many people – and could help even more with increased funding. But even the best palliative care can not help in all situations. I recently asked Baroness Finlay, a leading professor of palliative care and strong opponent of assisted dying, how I could avoid an unpleasant end of life like my mother’s, if I too was diagnosed with dementia. Her answer – to look on the internet for illegal lethal drugs – is totally unacceptable and shocking. 88% of people in our poll think that in some situations like this, assisted dying is acceptable. We demand a more compassionate, patient-centred approach to avoiding end-of-life suffering, an approach that includes medical assistance to die as a last resort.

Of course, agreeing that it would be “acceptable for someone to have medical assistance to die” is significantly different from agreeing to a specific change in the law, where all the safeguards have been carefully thought through. But what is clear is that the debate now needs to move on. We should be no longer discussing whether or not assisted dying should be permitted, but instead be working on the details of how assisting dying can be safely and comprehensively introduced, ensuring adequate protection for those who may be vulnerable. In doing so we should learn from other jurisdictions where some form of assisted dying is permitted.

It is bitterly disappointing that the palliative care medical community are so reluctant to talk constructively about improving end-of-life choice when it includes assisted dying. In the eyes of 93% of the people surveyed, that can only undermine the reputation of palliative care. That is unfortunate, as good, comprehensive, patient-centred, palliative care is an important component in ensuring that as many as possible have, what for them, is a good death.

You can read our full description of the poll and results here, with technical information here.

Update August 2019:

MDMD are pleased to see that our poll methodology was replicated by End of Life Choices, Jersey. They commissioned 4insight to run a poll with the same questions for 1,420 Jersey inhabitants. The results are in line with the MDMD results and in some cases show slightly stronger support. The Jersey report can be read here.

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The Legacy of Debbie Purdy – Radio 4 programme

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The progammes are available for a limited time here:

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

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

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“I readily acknowledge that many of these cases are tragic.” says HM Advocate General for Scotland and MoJ spokesperson for the Lords The Rt Hon Lord Keen of Elie QC

Today, in an oral question relating to the Crown Prosecution Service’s (CPS) Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide, several members of the House of Lords, asked Lord Keen about the law prohibiting on assisted dying. Below is a transcript of the questions.

Assisted dying is legal in Belgium, Canada, Colombia , The Netherlands, Luxembourg, Switzerland and seven US states. Last week, new figures released by the UK Assisted Dying Coalition, which includes My Death, My Decision, found that more than one person a week now travel to Switzerland, each week, to end their life. Individuals such as Geoff Whaley, an 80 year motor neurone disease suffer, who traveled to Switzerland last week to end his life only last week.

Under Section 2(1) of the Suicide Act, any action to help another person to end their life is illegal, and those convicted face up to 14 years in prison.  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.

Responding to a question from Baroness Blackstone. Lord Keen said:

“The CPS policy on assisted suicide provides guidance for prosecutors on assessing the evidential and public interest stages, in reaching decisions on cases of encouraging or assisting suicide. The policy sets out the factors, which must be applied in reaching decision in these cases, and balances the various important factors which need to be considered. There are no plans on reassess the CPS policy in such cases.”
In response, Baroness Blackstone asked: “Does the Minister really think, it is a good use of police time to interview, under caution, the wife of a dying man who wishes to choose how he dies? In light of the Whaley story, and the treating of families like criminals, does the Minister think that the law is working well?”
He replied: “It is for the CPS to apply the law, not make the law. Every case must turn on its own facts and circumstances, where matters are drawn to the attention of the police of matters relating an assisted suicide or potential assisted suicide, they will investigate. They are bound to investigate what is potentially criminal conduct in terms of Section 2 of the Suicide Act. I see no reason why they should pause those investigations given the current state of the law.”
Also asking Lord Keen about the law relating to assisted dying, Lord Pannick, who recently acted in Noel Conway’s legal case to change the law for those suffering from a terminal condition, said: “Does the Minister recall that the CPS policy was adopted after the Debby Purdy case in 2009, because of the uncertainty of the law. Does the Minister accept that there continues to be very considerable uncertainty in this area, which is causing enormous distress to those at the end of their lives and their families?”
He was told: “A consultation was prompted by a decision of the courts, that led to a consultation exercise in September 2009 to which there were more than 5000 responses, and resulted in the publication of the CPS policy document in 2010. I consider that that policy is working well at the present time.”
Next, Lord Sherbourne of Didsbury asked: Does the Minister understand that for people with a terminal illness, with no hope of recovery that are suffering great distress, that for these people the current law, which prevents them from being able to end their own life in dignity, is condemning  them to great and unnecessary suffering?
He was told: Of course we are conscious of the difficulties and challenges facing people, in the situation outlined, but again I emphasise it is for the CPS to apply the law not make the law. In doing they they follow a policy that not only addresses an evidential test but also a public interest. The consequence is that in the 140 cases referred in the last 9 years, there were prosecutions in respect of section 2 of the Suicide Act in only 4 of those cases, resulting in 1 acquittal and 3 convictions.
Lord Low if Dalston, then asked: The police are only enforcing the law, so it is really the law which is the problem, rather than the police. When will the government bring in a new law to free the police from having to treat loving families like criminals?
He was told: It is not a case of having to treat loving families like criminals, it is a matter of having to look at the facts and circumstances of every case, in which the victim may be extremely vulnerable. It is therefore, as the government has said before, a matter for Parliament because it is a matter of conscience, and it is not a matter for government to bring forward such legislation. Lord Low will be aware that such legislation was proposed in 2015 and did not succeed.
Baroness Barker, then asked: Given the statistics just quoted is that not in itself, an indication that the law is not working? She was told: No I do not think so. I say only in a small minority of cases has there been a successful prosecution. I should also add however, that there have been a number of instances, in which the case which was taken forward involved prosecution for homicide not assisted suicide.
Following this, Baroness Meacher said: Indeed, Geoff Whaley did die from a dignified death in Switzerland last Wednesday, but most people can’t afford to take their families to Switzerland for such a death, or they can’t get the medical report from their doctor to have such a civilized death. Does the Minister agree that in a civilized society, someone in Geoff Whaley’s position, should be able to avoid months of being unable to swallow, to eat, to drink, to speak, or move and totally therefore cut off from communication. Will the Minister discuss with his colleges what can be done to change the law?
Lord Keen replied: It is not the intention of the government to seek to change the law in this area. I emphasise that every case needs to be considered according to its own particular facts and circumstances. I readily acknowledge that many of these cases are tragic.
Finally Baroness Chakrabarti asked:
Whatever the conflicting views, and there are many, on public and prosecutorial policy in this area, I think we  can all agree that the current situation does present loved ones with Motor Neuron Diease and similar conditions at the end of their lives, with an emotional, ethical and legal mindfield. Is the Minister confident that these people, at a very difficult time, are getting the advice and support that they need to navigate that?
She was told: I’m not in a position to say where such people seek advice on these matters, but such advice is available. The policy of the CPS with regards to this matter is publicly available.
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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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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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Dignitas hit out at UK politicians

Dignitas issued a hard-hitting press release this week “Ignorance, irresponsibility and hypocrisy – How a majority of UK politicians violate human rights and create suffering and costs“. Here’s an extract:

Just over a week ago, once again an individual from the UK has travelled to DIGNITAS – To live with dignity – To die with dignity, for having access to the human freedom and right to decide on time and manner of his own end of suffering and life, as it has been basically acknowledged by the European Court of Human Rights in 2011. This freedom and right has been violated by the UK once again – for the 394th (!) time now.

A majority of UK politicians ignore that these journeys cause a lot of suffering for the individual and his family and friends. Not only is it very hard for someone already in a deplorable health situation to travel abroad. It all has to take place in secret and with fear, as it is shadowed by an absurd law that threatens to criminalise loved ones who give their compassion and care – something which every suffering individual deserves.

The press release was picked up by the Daily Mirror in an article titled ‘Dignitas blasts “ignorant and irresponsible” MPs for refusing to back change to assisted death laws in UK‘. The Mirror article refers to the case of James Howley who accompanied his partner to Dignitas. On return he was investigated by the police for six  months before charges were dropped. MDMD are aware of other similar cases.

MDMD fully agree with Dignitas that the UK law on assisted suicide is not working and needs to be changed to allow medically assisted dying in the UK, with similar safeguards to those which apply at Dignitas. In Switzerland medically assisted suicide is possible for a person who requests it provided that they are mentally competent and have a medical condition which is incurable and which causes unacceptable suffering. It is not restricted to those who are “terminally ill” in the sense of having a life expectancy of six months or less, which means that it is available to those with the early stages of dementia provided that they still retain mental capacity. MDMD feel this is particularly important now that dementia is recognised as the leading cause of death in England and Wales, and many more people die with it rather than of it.

I’m not frightened of dying, but I am frightened about the way I die

The current law causes far too much suffering, both for the dying person and their family. Many people would agree with Helen Johnson, (James Howley’s partner who ended her life in Switzerland), when she said ‘I’m not frightened of dying, but I am frightened about the way I die’. The option of a medically assisted death in the UK, for those that want it, would greatly reduce that understandable fear, which even the best palliative care cannot allay. This would enable far more people to have a “good deathwhether or not they actually choose medical assistance to die as their end-of-life situation unfolds.

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Farewell to Lord Joffe

MDMD bids farewell to one of the pioneers in the battle to legalise assisted suicide in the UK.  Lord Joffe of Liddington, who died on 18 June 2017 at his home, age 85, fought for terminally ill people to be given the right to die.  He was a front runner in the House of Lords on the subject of dying with dignity, and presented four bills in the House but unfortunately, in his lifetime, his objective was not achieved.

Lord Joffe was appointed to the Lords in 2000.  Soon after his appointment he began pursuing the cause of the right to die.   He became a member of the Voluntary Euthanasia Society (which has since been renamed Dignity in Dying).  Whilst enjoying public support, he did not win over the religious and political authorities.

In 2002 he tabled a private member’s bill.  This was a proposal to enable a competent adult with unbearable sufferings to request and receive medical assistance to die.  The bill failed in June 2003.  Lord Joffe made several amendments to the bill and in 2006, and at his fourth attempt, he failed again.  He said that “it is a human right issue” and that “if patients are suffering, doctors should do something”.

Lord Joffe showed his dedication to good causes throughout the world and thought that passage of the bill to assist terminally ill patients to die was inevitable.  He said that “Most of those who oppose assisted dying opposed the decriminalisation of homosexuality, they opposed inter-faith marriage and abortions, all of these. Opponents [to assisted dying] don’t seem to recognise we are developing into a more and more compassionate and caring society. This doesn’t mean they themselves are not caring and compassionate people, it means they have a bit of a blind spot when it comes to the compassionate development of our law.”

We who remain must continue to fight for the cause of assisted suicide, so courageously undertaken by Lord Joffe.  MDMD believes that right-to-die legislation should not be restricted to those who are terminally ill (in the sense of having a life expectancy of six months or less) as this would exclude many deserving cases, and is a criterion which doctors say they would have difficulty implementing. We are actively working to define safeguards which will ensure that people who do not wish to have an assisted death are protected from possible coercion, but which can allow those who have a well-considered and persistent desire for medically assistance to die, when faced with incurable suffering, to have the good death they wish for.

Update 24th November 2017: Lord Joffe’s daughter, Deborah, writes about her father’s end of life.

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House Of Lords Debate on Assisted Dying

On 6th March 2017 the House of Lords held a short debate on Assisted Dying “To ask Her Majesty’s Government what assessment they have made of recent legislation on assisted dying in North America; and whether those laws provide an appropriate basis for legislation in England and Wales.”

The transcript reveals the continuing debate along well-worn lines. Those in favour of a change in the law in the UK describe the recent changes in legislation in Canada, California and Colorado as indicating a “tide of history” which will sooner or later reach the UK.  Those opposed were concerned about inadequate safeguards and the possibility of future extensions of an initial law permitting assisted dying.

In his summing up, the Advocate-General for Scotland (Lord Keen of Elie) makes some helpful observations. Importantly he points out something that is often overlooked in media headlines: the two sides of the debate have much in common. We all want to ensure people have access to high quality compassionate care at the end of their lives. Further, we all want to protect those who are vulnerable from coercion. He identifies the central question as “whether a blanket ban on assisting suicide is a necessary and proportionate way of achieving this.” MDMD clearly think not. True compassion, for some people, in some situations, means medical assistance to end their life at a time of their choosing, when their quality of life is incurably below the level they can accept. To deny people this opportunity is a cruelty that vulnerable people should be protected from as much as from any coercion to request it.

Regarding a change in the law, Lord Keen cautions that there are cultural differences between countries which mean that we cannot simply adopt a law from elsewhere. He also echoes concerns about the possibility of laws being modified in future. He points out the need for very carefully crafted safeguards, while accepting that no safeguards could eliminate risk completely. “The real question is: how much risk to the vulnerable is acceptable in order not to deny those who would genuinely wish to be assisted to commit suicide the opportunity of an assisted death?”

How do we move the debate forward? MDMD believes that some new thinking and proposals are necessary. Some important suggestions we offer are:

  • The six month criterion has serious problems both of diagnosis, but also for people with incurable, often slowly degenerative, diseases who suffer intolerable conditions for much longer. Dementia is an important example. It is now the most common cause of death in England and Wales. People with a dementia diagnosis are faced with horrible alternatives before they lose their mental capacity: ending their life in Switzerland like Ron Hall; ending their life themselves like senior judge Sir Nicholas Wall, the former President of the Family Division; or being subjected, like Joan Cheatle, to the living nightmare of one’s self withering away uncontrollably with loss of all shreds of dignity, even though she had excellent specialist care.Despite these concerns, the six-month criterion may turn out to be an important initial safeguard – but it should be recognised for what it is, the first step in a cautious, incremental approach towards more compassionate, but still safe, solutions. Many changes in law have been introduced step-by-step – our right to the vote being the most obvious example.
  • Currently proposed safeguards are not considered adequate by many opponents. We should work actively to improve this. MDMD’s suggestion of extending the concept of an advance decision could be an important contribution here. Under our proposal, vulnerable people who had not previously made a formal statement of their wish for the option of an assisted death, made at a time when there were no questions about their “vulnerability”, would have precisely the same protection as at present. Yet those who could point to evidence of their long held wish, or who were very clearly not vulnerable even if they had recently changed their mind (like Lord Rix), would be allowed assistance to have the good death they desire.
  • More detailed proposals are needed of how exactly doctors and courts could establish that someone was making their request freely. There are already many healthcare professionals experienced in interviewing people, especially vulnerable people, to ascertain their wishes, to test the reasons for those wishes, and their consistency. Perhaps such an expert interview should be compulsory and recorded on video for consideration by others involved in the authorisation process.
  • The question of “how much risk to the vulnerable is acceptable” needs to be balanced by the question “how much suffering should be inflicted on the incurably ill by refusing their well considered requests for an assisted death?”. The best estimates, from those jurisdictions where assisted dying is legal, suggest that the risk to vulnerable people is very small indeed – there is very little evidence of coercion – though admittedly it could be hard to trace. We should perhaps do more work to quantify the amount of incurable suffering being experienced by those who are refused the life ending assistance they desire – but it is very difficult to do so. We have estimates of how many people choose to end their life in Switzerland (47 people went to Dignitas in 2016 from Great Britain). We can only estimate how many people take their own lives due to incurable suffering. Dignity in Dying estimate 300 per year. This is a helpful statistic, but it is likely to be a significant underestimate as they only include those suicides where “terminal illness” is mentioned, and their data will exclude many situations where someone has voluntarily stopped eating and drinking to hasten their death, as this is unlikely to be recorded as suicide. Anecdotally we hear of many more cases of people suffering against their will at the end of life, where death eventually comes as a relief.

MDMD encourages and participates in constructive discussion between all parties. There is clearly much more work to be done to produce a more acceptable proposal for how the law should change in this country.

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