The Assisted Dying Coalition is the UK and Crown dependencies coalition of organisations working in favour of 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 facing incurable suffering.

Below you can find some news updates from our members. Elsewhere on the site you can also find more about us, our members, and our personnel, and how to get in touch.

New Jersey Legalises Assisted Dying

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On 12th April 2019 the Governor of the US state of New Jersey, Phil Murphy, signed a bill into law which allows assisted suicide for those who have mental capacity, are terminally ill, and are within six months of dying. The law is based on a similar law in Oregon which has been in force for over 20 years.

New Jersey is the 8th US state to pass this form of legislation, following Oregon (1994); Washington (2004); Vermont (2014); California (2016); Colorado (2016); Washington DC (2017) and Hawaii (2018). The addition of New Jersey, brings the US population with access to assisted dying to almost 70 million – over 20% (1 in 5) of the total population of the USA. (Assisted dying is also permitted in Montana, though this is by virtue of a court ruling rather than legislation.)

In signing the New Jersey Bill, Governor Murphy, a Catholic, is quoted as saying:

“After careful consideration, internal reflection and prayer, I have concluded that, while my faith may lead me to a particular decision for myself, as a public official I cannot deny this alternative to those who may reach a different conclusion.”

“I believe this choice is a personal one and, therefore, signing this legislation is the decision that best respects the freedom and humanity of all New Jersey residents.”

MDMD applauds Governor Murphy for taking this position and sharing his reasoning. It was clearly a difficult personal decision for him, but in putting respect for the autonomy of others above his personal beliefs he demonstrates an important principle that others of faith should follow. His decision also shows compassion for those who need to use this law to enable them to have what for them is a good death.

As an organisation, MDMD welcomes supporters of all faiths and none. We respect the values, choices and traditions of others to make their own end-of-life decisions for themselves. We plead for the type of reciprocal respect and understanding which Governor Murphy has shown in passing this legislation. Unfortunately, many religious leaders and organisations do not share Governor Murphy’s tolerance of other people’s views. Two recent examples of this, concerning the renewed attempt to change the law in Scotland, appear in articles published by the Scottish Catholic Observer and the Christian Institute. It is unfortunate that these bodies fail to show the compassion and respect demanded by 93% of the UK population – a figure which demonstrates just how out of touch the views of those opposed to change are.

Although MDMD welcomes the New Jersey law as a first step towards a more humane approach to dying in the 21st century, we believe that the “Oregon model” approach has significant limitations. Most significantly the 6 month terminal illness criterion excludes many people who quite rationally long for medical assistance to die. In addition, there are concerns over the support and counselling given to those who choose to make use of the law, and the process by which assisted dying drugs are administered. These issues were demonstrated in a Louis Theroux documentary shown on BBC2 in November 2018. MDMD are pleased that these issues are now actively being reviewed in Oregon.

Despite these reservations, the new law in New Jersey is another clear sign of the progress being made by right-to-die campaigners around the world. Progress that, we hope, will one day reach the UK – which is looking increasingly backward on the issue.

Royal College of Physicians moves from hostile to neutral position on assisted dying

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The Royal College of Physicians (RCP) has announced it has adopted a neutral position on assisted dying after a clear majority of respondents to its poll either supported or were neutral towards such a move. Humanists UK warmly welcomes this move, and the wider shift in medical opinion regarding assisted dying.

The RCP poll revealed a leap in support for a change in the law on assisted dying as the number of respondents wanting the RCP to support a change in the law increased by over a quarter, from 24.6% in 2014, when doctors were previously polled about assisted dying, to 31.6% in 2019.

Together, the number of respondents who want the RCP to support or be neutral (25%) towards a change in the law totals 56.6%, a majority of all respondents.

The poll also shows growing support for assisted dying among physicians as the number of respondents who personally supported a change in the law increased by a quarter, from 32.3% in 2014 to 40.5% in 2019.

Humanists UK called on RCP members to vote in support of assisted dying and advised members how to respond to the poll.

A legal challenge headed up by doctors opposed to assisted dying was also today rejected by the High Court.

A recent poll by My Death, My Decision, a partner of Humanists UK in the Assisted Dying Coalition, showed that more than 90% of the UK public now supports assisted dying for certain groups of people, reflecting a growing trend of support for assisted dying across the board.

Humanists UK Director of Public Affairs and Policy Richy Thompson said:

‘We welcome the news that the Royal College of Physicians has adopted a neutral position on assisted dying. We believe terminally ill or incurably suffering individuals who are of sound mind should be empowered to make their own free and informed choices about their options in dying. It is only by giving them this choice that we can guarantee they have dignity, autonomy, and choice in when and how they die.

‘We hope to see medical organisations take note of this and similarly conduct their own polls to best reflect the views of the medical community.’

NOTES:

For further comment or information, please contact Humanists UK Director of Public Affairs and Policy Richy Thompson at richy@humanism.org.uk or phone 020 7324 3072 or 07815589636.

The RCP poll took place from 5 February and 1 March and was responded to by 6,886 members and fellows. The poll required a supermajority of 60% to either support or oppose a change in the law.

Read our previous news item on the RCP poll here:

https://humanism.org.uk/2019/02/21/humanists-uk-calls-on-royal-college-of-physicians-members-to-consider-dignity-compassion-in-assisted-dying-survey/

For more information on our work on assisted dying visit:

https://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.

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

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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.

Jersey Government Will Research Assisted Dying Reform

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Last week, Jersey’s Council of Ministers announced that a new commission will research end of life options, including the legalisation of assisted dying and dying well The announcement follows after more than 1,800 people signed a petition from End of Life Choices Jersey (MDMD’s partner in the newly formed Assisted Dying Coalition).

Tanya Tupper, whose terminally ill mother Roberta is planning to end her life in the Swiss clinic Dignitas, began the campaign to change the law. Last year, after contacting Jersey’s’ election candidates she found that around a third of Jersey’s candidates would have supported changing the law to permit assisted dying in Jersey.

In answer the petition, Health Minister, Deputy Richard Renouf said that “much of the debate in other jurisdictions has been underpinned by shared values of care, freedom of choice and compassion. It is these shared values that we should now draw on in reviewing our own laws on end-of-life care to understand if a change is needed, and, if so, how to make that change”.

Jersey’s research will aim to bring together international research and focus upon: eligibility criteria for an assisted death, protection and safeguards for patients, the registration of medical practitioners, and ethical codes of conduct.

Jersey, an island of over 100,000 people, would be the second channel Island to consider legalising assisted dying, after Guernsey’s parliament voted against a similar proposal in May 2018.

Responding to the announcement, MDMD’s Campaign Policy Director, Phil Cheatle, who delivered a talk to the campaign group last year, said:

“My Death, My Decision is delighted by the by Council of Ministers’ decision, and congratulate our partners End of Life Choices Jersey on their process. It could give dignity to those, whose illness steals it from them; freedom to those, otherwise condemned to years of suffering and peace to families, forced either to let their loved ones suffer or risk imprisonment.”

“Having opened the door to a more compassionate approach to dying, I urge the Council of Ministers to review the evidence on an objective basis, and adopt a law which strikes a kinder balance between empowering individuals, respecting their dignity, and protecting the most vulnerable with stringent safeguards. Many in the UK and channel Islands will now look to Jersey to lead the way on this issue. Now is the time for the law to change.

Assisted Dying Coalition launches

MDMD is delighted with the launch of a formal coalition of like-minded organisations campaigning in the UK and crown dependencies for a change in the law on assisted dying. The Assisted Dying Coalition (ADC) is a forum that meets regularly and shares information and approaches on right-to-die campaigning.

For many years MDMD has worked closely with Friends At The End, (FATE), most notably in holding joint 6 monthly meetings in London. Our links with Humanists UK on right-to-die campaign issues have deepened considerably over the past 2 years. Since the idea of a coalition between like-minded campaign groups was first mooted, Humanist Society of Scotland and the recently formed End of Life Choices Jersey have joined us.

Each of the member organisations maintains its own identity and particular focus, along geographic and/or religious-inclusion lines, but on matters that we have in common, relating to our assisted dying campaign work we will be working increasingly collaboratively, sharing our expertise and information, and maximising the power of our collective supporter base.

Membership of the ADC is open to campaign organisations and lobby groups who share the same right-to-die campaign goals: for individuals who are terminally ill or facing incurable suffering and who have a clear and settled wish to end their life.

As part of its launch activities the ADC published research which reveals that since the Marris Bill on assisted dying was rejected by the House of Commons in September 2015 more than 1 person per week from the UK has ended their life in Switzerland. The figures also reveal that almost 1,500 UK citizens have a paid membership with an assisted dying organisation in Switzerland. This highlights how desperate many people feel about how the law and medical practice in this country fail to respect their end of life wishes.

Responding to these figures Assisted Dying Coalition Chair Carrie Hynds, (who is also a director of MDMD), 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.”

Phil Cheatle, MDMD’s campaign policy director said: “It is simply not acceptable for doctors to defer the decision on assisted dying to politicians, only for politicians to reject it, at least in part, because “doctors don’t support it”. The ADC will be pressing for a more joined up response. Medical organisations and politicians must work together to respond to the public clamour for more compassionate, dignified end of life options, which include medical assistance to die when there are no acceptable alternatives.”

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UK’s first Assisted Dying Coalition formed to campaign for millions who want right to die

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.

Humanists UK mourns philosopher Michael Clark

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/

American Family Physicians Association (AAFP) changes position on medical aid in dying

In October 2018 it is reported that the American Academy of Family Physicians (AAFP) broke ranks with the American Medical Association (AMA) by adopting a position of “engaged neutrality” on assisted suicide and euthanasia.

At its Congress of Delegates in New Orleans the AAFP, the second largest component society of the AMA with more than 131,400 members voted to adopt a position of “engaged neutrality” and to reject the use of the terms “assisted suicide” or “physician-assisted suicide”. “Through our ongoing and continuous relationship with our patients, family physicians are well-positioned to counsel patients on end-of-life care, and we are engaged in creating change in the best interest of our patients,” said the AAFP president Michael Munger, a physician from Kansas.

This is important in the UK because the BMA radically opposes assisted dying, whereas the BMJ has come out in favour of putting it to the vote, to show the true picture amongst British doctors.

Often it is the minority groups such as ‘Care Not Killing’ which shout the loudest. I once heard a story of a Methodist Minister trainee student who wrote his sermons out in full with notes in the margin. On one occasion one of his colleagues happened to come upon one of these sermon transcripts and was amused to read in the margin ‘weak point, shout louder’.

In the UK. nurses are the largest group of care providers for the terminally ill, so it is not surprising that following an extensive and detailed consultation process with their members, the Royal College of Nurses moved in 2009 to adopt a neutral stance in relation to assisted dying for people who have a terminal illness.

It is time the BMA followed suit and stopped giving politicians an excuse against seeing reason and voting for legislation allowing Assisted Dying for the terminally ill and those suffering long term incurable health conditions which have reached a stage of relentless suffering, provided this is their own persistent wish.

 

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MDMD Coordinator asks Baroness Finlay how to avoid late stage dementia

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.”

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Talking about Dying – More than Meets the Eye?

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.

 

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