Assisted Dying Coalition

The first-ever national coalition for assisted dying, made up of a cross-section of campaigners including doctors and nurses, has formed to push for the legalisation of assisted dying for the millions of citizens in the UK and crown dependencies who want the right to choose.

The Assisted Dying Coalition will campaign for the legal recognition of the right to die for individuals who have a clear and settled wish to end their life and who are terminally ill or incurably suffering.

The Coalition is made up of five organisations: End of Life Choices Jersey, Friends at the End, Humanist Society Scotland, Humanists UK, and My Death, My Decision.

The Coalition’s launch today coincides with the release of new figures that show that since the UK Parliament last considered assisted dying laws in 2015, more than one citizen per week (233 people), were forced to make the heartbreaking journey to travel to Switzerland to end their life. The Coalition says thousands more that might want an assisted death don’t have the financial or physical means to travel to Switzerland.

The figures also reveal that almost 1,500 UK citizens have a paid membership with an assisted dying organisation in Switzerland, highlighting the growing desperation of many looking to foreign countries to give them peace of mind because the UK denies them choice. It costs on average £10,000 per person to access the services of a Swiss clinic.

The group is also backed by activist Paul Lamb. Paul, who is paralysed from the neck down, took his right to die case to the Court of Appeal, the Supreme Court and the European Court of Human Rights after Tony and Jane Nicklinson’s case failed.

Launching the coalition, the group’s Chair Carrie Hynds, a long-time assisted dying campaigner and Director of My Death, My Decision, said the issue could no longer be seen as ‘too ethically complex’ for Government as 80% of the UK public now supported legalising assisted dying.

Assisted Dying Coalition Chair Carrie Hynds said: ‘It is disgraceful that in the last few years alone, 233 people have been forced to make that agonising journey abroad, far from their family and friends, to have an assisted death. The various legislatures in these isles might want to wait, but it is too late for those who have already faced this injustice.

‘As a Coalition, we will be working to ensure that people have the individual autonomy to make their own decisions about their end of life choices. Several countries including Canada, Luxembourg, and Switzerland all have assisted dying laws in place which give dignity to people in dying. The UK and crown dependencies must follow in the footsteps of these countries while also implementing strong legal safeguards that protect all individuals.’

Humanists UK Chief Executive Andrew Copson said: ‘Politicians and governments cannot simply leave the issue of assisted dying in the “too-hard” category. Many people want the peace of mind that if they get to a point where they are terminally ill or incurably suffering, they will have the right to make their own choices about their death. This is a fundamental human right and this fact should trump any political, religious, or other motives.’

Assisted dying campaigner Paul Lamb, and supporter of the Coalition, said: ‘I’ve tried time and time again to get the UK Parliament to listen to me but they won’t. Animals have more rights than humans in this debate which is completely unthinkable in the modern day when individual rights in other aspects of life have progressed so much. I endorse the Coalition’s work and hope they can give a voice to people who have felt voiceless for too long.’

Humanist Society Scotland Chief Executive Gordon MacRae said: ‘We believe it is important that everyone should have the right to control their own bodies and ultimately their own options in dying. There is still an important human rights dilemma in the current legal framework across all parts of the UK including Scotland, about how individuals who are terminally ill or intolerably suffering have their rights and choices restricted.’

Friends at the End Chief Executive Amanda Ward said: ‘Assisted dying is an issue which is not going to go away, there is clear support from the general public for choice at the end of life. This is an issue which politicians need to show leadership on and recognise that it is not acceptable or sustainable to continue to ship the issue abroad, leave people to take their lives alone or to suffer in intolerable pain.’

End of Life Choices Jersey Deputy Coordinator Michael Tailbard said: ‘It matters how we end our lives, and we need to be empowered to make our own choices about it. For some, the last phase of life is not just disappointing, but truly unbearable — unbearable through pain, or loss of dignity, or whatever else. For those people, any caring society would offer help to die decently, in a manner of their own choosing.’

The new push for legalising assisted dying comes at a crucial time, after the announcement by the Royal College of Physicians that it will consult its members on the issue, and two recent high-profile public cases. The first case was that of Noel Conway, a Humanists UK member, who suffers from motor neurone disease, who recently lost an application to appeal at the Supreme Court despite his lawyers arguing that it was a breach of his human rights to deny him an assisted death. Mr Conway says his only option now will be to remove his ventilator and suffocate to death. The other was Omid T, a Humanists UK member, who died at the Lifecircle clinic in Switzerland in October 2018 after a long battle with multiple system atrophy. His dying wish was to bring about assisted dying reform in the UK.

NOTES:

For further comment or information, please contact Humanists UK press manager Casey-Ann Seaniger at casey@humanism.org.uk or phone 020 7324 3078 or 07 393344293.

For a copy of our statistics briefing notes, click here.

For information about the Assisted Dying Coalition, visit https://assisteddying.org.uk/about/

About the member organisations

End of Life Choices Jersey

End of Life Choices Jersey is a campaign group working to empower mentally competent adults with incurable health problems which result in their perceived quality of life falling permanently below the level they are able to accept, provided this is their own permanent request, the option of an assisted death. They campaign to change the law on assisted dying, and to encourage a wider conversation about the use of advance decisions.

Friends at the End

Friends at the End (FATE) is a leading campaign group in Scotland, working towards a change in the law to allow assisted dying. For over 17 years, it has worked to promote knowledge about end of life choices and campaigned for better end-of-life care for everyone.

Humanist Society Scotland

Humanist Society Scotland is part of the wider humanist movement, with a clear vision for a secular Scotland. They work to further ethical and moral outcomes based on compassion, knowledge and reason.

Humanists UK

Humanists UK advances free thinking and promotes humanism to create a tolerant society where rational thinking and kindness prevail. Its work brings non-religious people together to develop their own views, helping people be happier and more fulfilled in the one life we have. Through its ceremonies, education services, and community and campaigning work, it strives to create a fair and equal society for all. Humanists UK believes that individuals who are of sound mind but who are terminally ill or incurably suffering should have a right to decide to end their life at a time and in a manner of their choosing.

My Death, My Decision

My Death, My Decision (MDMD) is a right to die organisation which wants to see a more compassionate approach to dying in the UK. It campaigns for a change in UK law to allow medical assistance to die to be given to mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent request.

The staff and trustees of Humanists UK are sad to note the death of humanist moral philosopher and logician Michael Clark, who ended his life at Dignitas in Switzerland on 23 January 2019. He was a longtime member of Humanists UK and its Humanist Philosophers Group, contributing to many of its publications over the years.

Michael first began a life-long love affair with philosophy while at school, and in 1962 he won a place to study Philosophy and Psychology at Exeter College, Oxford. His promise as a philosopher was on display even then: he was the recipient the prestigious Open Scholarship, a generous bursary available only to the brightest students. It was there at Oxford that he developed a rewarding fascination with the pursuit of formal logic. This interest propelled a long academic career that spanned the universities of Aberdeen, Manchester, New Orleans, and Nottingham. Having become one of the UK’s most distinguished philosophers, Michael was named Emeritus Professor of Philosophy at the University of Nottingham, which had awarded him his D.Litt in 2014. Since 2000, he had been editor of the leading philosophy journal Analysis.

Michael was a supporter of Humanists UK’s work, including its long-running campaign for the right to die for people with incurable and terminal illnesses, but his interests extended far wider than that. He was particularly invested in education policy, seeing the UK’s discriminatory and sectarian schooling system as detrimental to social cohesion. He was also very concerned with developing public understanding of humanism.

Before his illness advanced, Michael was out campaigning for a fairer society with Humanists UK as recently as 2014. He was among the long list of distinguished philosophers, academics, and religious leaders who united in urging Schools Minister Nick Gibb to provide equal status for humanism in the Religious Studies curriculum for England. In 2007, he worked alongside humanist philosopher Professor Richard Norman and others to produce The Case for Secularism, a publication of the Humanist Philosophers Group which intended to ‘dispel the myth… that secularism springs from anti-religious feeling, or that it is only humanists who are in favour of secularism.’

Michael’s investment in humanism reflected a commitment across his life to inclusive civic spaces that brought people from different backgrounds together. It was this aspect of his character that drew him, time and again, back to questions of moral philosophy and the philosophy of law: enterprises at once concerned with the social fabric that exists between people, and the ways in which governments and courts help to both provide for and shape just and fair societies.

His colleague and friend Dr Peter Cave, chair of the Humanist Philosophers Group, paid tribute to Michael’s life, saying:

‘Michael was a distinguished philosopher, specialising in logic, law and paradoxes.  He was a strong supporter of Humanists UK, the legalization of assisted dying – and jazz. He thought it was appalling that, with regard to the United Kingdom, when suffering and needing to bring an end to your life in a reasonable manner, you required the knowledge, financial resources and physical ability to travel abroad to a country with a more civilized and respectful understanding of how some people have had enough.

‘Michael was a close friend of mine.  He and I would sometimes reflect on a comment by an early twentieth-century Cambridge philosopher, C D Broad.  Broad, always interested in the possibility of an afterlife, would say, “All we can do is wait and see. Or wait and don’t see.”

‘Michael, being a man of reason – as well as a philosopher – was convinced that, on death, it was the latter: we wait – and don’t see.’

His friend and fellow philosopher Dr Nigel Warburton added:

‘He was a kind and modest man, with a brilliant mind, a keen sense of justice, a deep knowledge of philosophy, and a commitment to humanist values.’

Humanists UK Chief Executive Andrew Copson said:

‘Humanism was enriched by Michael’s contributions and our organisation owes him an enormous debt. It is a tragedy that he was forced to end his life in another country, at great expense, and not at home with his family and loved ones. We will continue to honour his legacy by campaigning for a humane right to die law in the UK, which allows people in Michael’s situation to die with dignity at a time of their choosing.’

Notes

At Humanists UK, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. Our work brings non-religious people together to develop their own views, helping people be happier and more fulfilled in the one life we have. Through our ceremonies, education services, and community and campaigning work, we strive to create a fair and equal society for all.

The Humanist Philosophers Group is part of Humanists UK, and exists to promote a critical and rational approach to public ethical issues. Its members have been heavily involved in Humanists UK’s recent legal work on abortion rights and the right to die. Members include many of the UK’s most eminent moral and analytical philosophers, including Louise Anthony, Julian Baggini, Simon Blackburn, Steve Burwood, Peter Cave, Jonathan Derbyshire, Simon Glendinning, AC Grayling, John Harris, Alan Haworth, Brendan Larvor, Sandra Marshall, Sheila Mclean, Peter Millican, David Papineau, Janet Radcliffe Richards, Ben Rogers, Peter Simons, Raymond Tallis, Nigel Warburton, Patricia White, and John White.

Read more about Humanists UK’s campaigns work on assisted dying: http://humanism.org.uk/campaigns/public-ethical-issues/assisted-dying/

On 29th November 2018 Baroness Ilora Finlay gave a talk at Bristol University titled “As the light fades: Do law and ethics collide?”. Baroness Finlay is a professor of palliative medicine at Cardiff University and a long-standing prominent opponent of assisted dying. Her talk gave a full account of the problems and dangers she sees with assisted dying legislation as it exists in various countries around the world. MDMD is sympathetic to at least some of her concerns, but reaches different conclusions. In Baroness Finlay’s view no change in the law is necessary or desirable, in part because one option people already have is to refuse life sustaining medication.

In the Q&A section MDMD Coordinator, Phil Cheatle, asked a question regarding dementia, an illness where sufferers do not require life sustaining medication which can be refused. Dementia is particularly important as it is feared by many people and is increasingly common. The discussion about how assisted dying can safely be made available to dementia sufferers is something which is actively being discussed and reviewed around the world. In Switzerland medical assisted suicide is permitted for those with early stage dementia provided the person still has the mental capacity to make a life ending decision at the time of the assisted death. In the Netherlands and Belgium euthanasia is permitted for those with dementia who lack mental capacity provided they have written an advance decision requesting euthanasia in those circumstances. In USA and Canada there is public debate about possibly broadening their assisted dying laws to include people suffering with dementia.

In Phil’s question to Baroness Finlay he explained that his experience of his mother’s end of life suffering from dementia taught him that he really didn’t want to die like that. He then asked:

 “What should I do to avoid an unpleasant death from dementia?”

Baroness Finlay started by saying that with dementia a patient doesn’t have mental capacity. Phil clarified that he was thinking of early stage dementia before mental capacity was lost. Baroness Finlay then suggested that people could use the internet to find suitable methods for ending their lives themselves and could procure life ending drugs illegally. Phil followed up by pointing out that this was highly risky, and that you can’t be sure what you are buying. Surely there must be a safer way to ensure people have a good death?

Baroness Finlay then explained that if society were to decide that lethal medication was to be legally obtainable within the UK, then there would need to be a body which brought a set of different skills together to ensure safeguards were followed. She mentioned clinical psychologists, for example, to assess the person’s mental state. In her view assisted dying should not be a medical matter.

Reflecting on her answer afterwards, Phil Cheatle said: “It is very surprising that Baroness Finlay should suggest risky and illegal suicide techniques, without the opportunity for professional help in evaluating if that is really the best death possible for the patient. The MDMD website lists many reasons why this approach is dangerous and unacceptable. People deserve compassionate assistance when facing incurable suffering which they wish to avoid, not direction to unsafe suicide resources.”

“MDMD shares Baroness Finlay’s desire for strong, effective and workable safeguards in any assisted dying legislation. We welcome any opportunity for constructive discussion about the nature of the regulatory body she suggested. This approach may be a way forward to break the current impasse between the medical, legal and political positions. However, MDMD would prefer assisted dying to be closely integrated with palliative care, as happens in parts of Belgium, as this would help ensure that all palliative options were considered before choosing a medically assisted death.”

The post MDMD Coordinator asks Baroness Finlay how to avoid late stage dementia appeared first on My Death, My Decision.

Recently the Royal College of Physicians (RCP), in a widely reported statement, called for doctors to start talking about death earlier. It followed from a report, “Talking about Dying”, which found only 4% of patients talk to their doctors about dying or benefit from advanced care planning.

“Too many patients are being admitted to hospital without ever having discussed serious issues like DNACPR (do not attempt cardiopulmonary resuscitation) or their ceiling of treatment despite chronic, life-limiting conditions and frailty. We act on default because we don’t know what the patient wants.” – Medical Registrar cited in the report

Stating that open dialogues, although sometimes “challenging”, were essential to good medical practice the RCP identified three barriers to end of life conversations: culture, confidence and practicalities.

On culture, the RCP found a systematic gap between patient’s expectations and clinical practice. In particular, they found whilst 77% of patients would prefer being told if they had less than a year to live, a majority of doctors preferred not discussing the topic. The report also found that “death [is widely viewed] as a failure” amongst the medical community, and a culture exists which prevents patients from discussing the acceptable limits to treatment. Indeed the report found many doctors believe their role is to “cure all ailments”, thus meaning that they believe they should always “do something to help [even if it resulted] in unnecessary aggressive treatment”.

On confidence, the report found that at all levels doctors feel unprepared to talk about dying. Specifically, the RCP found that junior doctors feel most unprepared, because they often lack opportunities to practice end of life conversations and consequently feel worried about initiating them.

Finally, on practicality, the report found most doctors were unclear at what stage conversations should begin. Additionally, doctors were unclear which healthcare professionals should be responsible for conducting end of life conversations. Indeed, many staff admitted “they were reluctant to start conversations … if they could not finish them … themselves”.

“There could be a whole population of people who, even at 60 years, may not want resuscitation. If we don’t ask them, they’ll just get it. This should be a routine conversation with every single person.” – Trainee Doctor cited in the report  

The RCP report stated that these barriers were a serious concern, because doctors “need to be equipped to offer patients honest conversations about what they can expect in the future, [and] to give [patients] choice and control over the remainder of their days”. Their report highlighted five main benefits to open conversation about death:

1. Early planning often improves a patient’s quality of life and mood
2. Early planning often reduces the need for aggressive treatment later
3. Early planning improves a doctor’s ability to deliver a patient’s wishes
4. Early planning often enables better pain relief for a patient
5. Early planning can in some cases extend a patient’s life

Consequently, the RCP recommended a raft of proposals to improve the dialogue between doctors and patients. For example, they recommended better training for undergraduates, a public awareness campaign and a better understanding of an end of life conversation’s purpose. The RCP stressed, that conversations should not be considered singular events, but rather understood as a continuing process of “encouraging a patient to think about their preferences”.  Interestingly, the Royal College also suggested conversations should not begin in the last phases of someones life, but could and should begin at any point.

MDMD strongly endorse these conclusions. We promote these discussions with medical professionals both as part of possibly refusing medication and as part of end of life planning using advance decisions to refuse treatment, advance statements of wishes to guide “best interests” decisions, and lasting powers of attorney for health and welfare. We also strongly encourage discussion with family and close friends. These discussions can help both the person whose life will soon end, and those who they will leave behind.

In the light of this report, and the excellent book “Being Mortal” by Atul Gawande, which touches on similar topics and the over-medicalisation of our care for the elderly, perhaps the medical professions should get initial conversations started long in advance of any serious illness, during routine medical check-ups in people’s 60’s and 70’s?

Two factors indicate that “Talking about Dying” may signal a subtle shift in the Royal College of Physicians in this direction.

1) Good End of Life Planning “is not just about high quality palliative care in the last weeks or days”.

Throughout the RCP’s report palliative care examples were heavily drawn upon to evidence their claims. Indeed, the report even went so far as to ultimately conclude that physicians find end of life conversations difficult, because “there are not enough palliative care specialists”.

Despite this, “Talking about Dying ” is important, because it signals that the Royal College of Physicians may be moving away from a simple insistence that good palliative care is all that is required.

My Death, My Decision welcomes this movement. Palliative care is an important end of life choice, and it brings relief to a very large number of suffering individuals. However, it is important to acknowledge that for all its benefits, palliative care is not sufficient for everyone, in all situations. Palliative care is principally a pain oriented form of treatment. Thus, it is limited in the extent it can help individuals who fear a loss of dignity and autonomy. Without the option of an assisted death, should they eventually need it, some people quite understandably fear that their end of life will be intolerable for them. This fear alone can prevent them having a good death.

We believe that palliative care and assisted dying are neither alternatives nor antagonistic options. Experience in parts of Belgium has demonstrated, for over a decade, that the two can work in tandem. My Death, My Decision would encourage any future change in the law to adopt a similarly integrated approach.

2) Doctors are uncomfortable with diagnosis of less than 12 months to live

Another interesting aspect of “Talking about Dying”, was the Royal College’s frank admission that “Professionals are often reluctant to initiate conversations about the end of life because they are not sure that the patient will die within the next 12 months”.

MDMD fully understands that it is impossible for doctors to make accurate predictions on life expectancy. They should not be expected to do so, not in relation to when to start conversations about end of life treatment, nor in relation to eligibility for welfare benefits, nor in decisions as to whether someone might be eligible for an assisted death. Patients and legislators need to accept this too.

Patients wanting to discuss end of life options, should not be refused a conversation merely because an accurate life expectancy assessment is impossible, regardless of any timescale. MDMD believes that those suffering from non-terminal illnesses, such as Locked-in Syndrome or Multiple Systems Atrophy, are entitled to the same conversations and choices as those whose end of life is sooner and more predictable.

The Royal College of Physicians seem to reflect a wider trend of doctors pushing back against  a rigid 12-6 months time frame. For example, in Scotland it was recently decided that “terminal illness”, as it applies to the right to certain benefits, is now determined by doctors without any need for an estimate of life expectancy. Further, in Canada the Medical Assistance in Dying law there is applicable to those with a “reasonably foreseeable death”, again with no specified time limit.

An area that “Talking about Dying” doesn’t cover, but should, relates to a patient’s wish for a meaningful conversation about assisted dying. Without this doctors can never have the sort of open, honest “Talking about Dying” conversations which some patients wish for. In this sense the doctor patient relationship is currently broken and needs fixing by giving doctors the freedom and professional protection to:

1. discuss options like medically assisted suicide in Switzerland, refusal of food and drink, and rational suicide. Even if they cannot assist in these options.
2. provide documentary evidence of the patient’s condition together with medical records. Patients should not fear discussing their well-considered options in case doctors attempt to withhold that essential information as a method of frustrating a patient’s attempts to arrange a medically assisted death abroad.

 

The post Talking about Dying – More than Meets the Eye? appeared first on My Death, My Decision.

Assisted dying campaigner Noel Conway, who has Motor Neurone Disease (MND) and has been pushing for a change in the law to allow assisted dying in the UK, has today been refused permission to take his case to the Supreme Court.

Noel, a 67-year-old retired lecturer from Shrewsbury and a member of Humanists UK, suffers from terminal MND. Noel wants the right to die if his condition worsens to the point that he has six months or fewer to live.

However, the Court concluded that there was not a strong enough prospect of the case succeeding to proceed to full hearing.

Humanists UK intervened in Noel’s case at the High Court and Court of Appeal, and would have sought to do so at the Supreme Court too. It campaigns to legalise assisted dying across the UK for people who are terminally ill or incurably suffering and who have made a clear decision, free from coercion, to end their lives.

Following the decision, Humanists UK Chief Executive Andrew Copson said:

‘It is extremely disappointing that the Supreme Court has refused Noel Conway permission to have his case heard. Citizens who are terminally ill or incurably suffering should be able to die with dignity at a time and manner of their choosing and the Court’s decision robs Noel of the chance to challenge this most pernicious of laws.

‘We will continue to campaign for this most fundamental of human rights to be recognised and protected in UK law.’

Nancy Collins, Partner at Hodge Jones & Allen, who represented Humanists UK in this case, said: ‘We are disappointed by the Supreme Court’s decision not to grant Mr Conway permission to be heard before the Supreme Court. We continue to represent Humanists UK who have long campaigned for the right to assisted dying, and whose campaigning will continue.

‘We believe that the right of terminally ill to choose how and when to die, is a fundamental right that should now be recognised and protected by the law.’

The Supreme Court has today published its order refusing Mr Conway permission to appeal along with reasons for the decision. The written reasons do not set out weights the judges gave to different factors in concluding that permission should be refused. In particular, one part of the document (paragraph 3 of the reasons) might be construed as to suggest that refusal was in part due to the nature of Mr Conway’s condition. The judges wrote that Noel could refuse consent to continue his non-invasive ventilation, whilst being simultaneously sedated.

The judges seemed to suggest that they think that such an approach could bring about a quick and painless death. A similar route would not be open to some other classes of claimant, for example Tony Nicklinson or Paul Lamb, who brought a previous case on the matter and are not terminally ill but are incurably suffering. However, whether this factor was decisive, and means that Tony or Paul could succeed where Noel has not, is at present unknown.

NOTES:

For further comment or information, please contact Humanists UK press manager Casey-Ann Seaniger at casey@humanism.org.uk  or phone 020 7324 3078 or 07 393344293.

Humanists UK is represented by Nancy Collins from Hodge Jones & Allen LLP and Caoilfhionn Gallagher QC and Graeme Hall of Doughty Street Chambers.

Read the Supreme Court’s decision: https://www.supremecourt.uk/docs/r-on-the-application-of-conway-v-secretary-of-state-for-justice-court-order.pdf

Read our previous news item on Noel Conway’s case: https://humanism.org.uk/2018/11/22/assisted-dying-campaigner-takes-case-to-the-highest-court-in-uk/

Read more about Humanists UK’s campaigns work on assisted dying: http://humanism.org.uk/campaigns/public-ethical-issues/assisted-dying/

At Humanists UK, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. Our work brings non-religious people together to develop their own views, helping people be happier and more fulfilled in the one life we have. Through our ceremonies, education services, and community and campaigning work, we strive to create a fair and equal society for all.