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.

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 http://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.

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

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

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

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

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

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

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

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

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

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

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

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

 

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Assisted dying campaigner Noel Conway refused Supreme Court hearing

Humanist and assisted dying campaigner Noel Conway.

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.

Assisted Dying in the USA, A Good First Step But Room for Improvement

Assisted Dying in the USA, A Good First Step But Room for Improvement

My Death, My Decision’s Coordinator, Phil Cheatle, discusses the recent documentary by Louis Theroux and the implications it raises for the US Oregon Model.

The BBC2 documentary by Louis Theroux, “Choosing Death”, which aired on Sunday 18th November 2018 and is available on iPlayer until May 2019, showed examples of the Oregon/California right to die law in action. The Oregon model, which is now available in seven US states, has proven itself to be an important first step for the right to die. However, as “Choosing Death” demonstrated, it leaves considerable room for improvement in how people can be helped to have a better and safer assisted death. Four apparent weaknesses of the Oregon model, highlighted in the programme, are discussed below.

1) Improved safety of handling lethal medication.

The Oregon law does not involve medical professionals in the supervision of lethal medication. Once accepted as meeting the legal criteria the patient is given a prescription for the medication which they keep at home. Leaving lethal medication in the unsupervised hands of non-medics seems potentially dangerous.

2) Improved counselling and support prior to using the prescribed medication.

The film showed the difficulty of reaching a decision on the exact timing of when to use the lethal medication. This will always be difficult, especially for those with close family who are coming to terms with an inevitable loss. What appeared to be missing was independent professional counselling that might help families reach a shared agreement. This was portrayed strongly in the case of Gus, a 74 year old man with stage 4 pancreatic cancer. Eventually he and his family reached a decision which balanced both Gus’s need not to suffer indefinitely and his family’s need not to lose a husband/father too soon. Both Gus and his family clearly wanted to take the feelings of the others into account.

MDMD believe that professional counselling should be available throughout the process of an assisted death, to help an individual and their families discuss concerns that often feel uncomfortable to talk about. For example, whilst there is concern that families may sometimes pressure vulnerable people to end their lives prematurely, “Choosing Death” demonstrated that the inverse is also true when families feel uncomfortable accepting that a loved one wants to die, and are coming to terms with the loss they will feel.

“Gus, in some cases I know patients in your situation, there is pressure from the family. I’m curious, are you all on the same page?” – Louis Theroux

“Well I would have gone probably a couple of weeks ago. But I told Reyanna [his daughter] in order to give her, her support, that I’d go through Chemo. And so that’s what I’m doing. But I’m afraid I’m going to wait too long for AB15 [California’s Right to Die Legislation]” If you get too sick, you can’t hold anything down. And one of the tenets of the whole programme, is that you’ve got to be able to take the medicine yourself.  – Gus Thomasson

MDMD believe that a dying person needs to reach their own decision on timing, taking the views of their loved ones into consideration, but without feeling pressured. With appropriate training, good consultation should be able to ensure this happens. The eventual decision needs to be based on best medical advice on likely future quality of life, and a full exploration of all palliative care options as the situation develops. The family may need a facilitator to ensure that they understand and respect each others points of view, but do not pressure or coerce the dying person either to prolong or shorten life. Ideally these discussions should be built into the palliative care process, as happens in Belgium.

3) Without the option of a medically assisted death, those suffering from non-terminal medical condition, which reduce their quality of life permanently below the level they can accept, are forced to request unsafe alternatives.

The lack of professional counselling was particularly apparent in the case of Debra, a 65 year old, in a wheelchair, with early stage dementia-like symptoms. Her husband had died 5 months earlier, leaving her with no other close family. Debra’s condition was not covered by the Oregon-style legislation, so she had no professional medical assistance in her decision. Instead Debra contacted the Final Exit Network, (FEN), who provided two unregulated amatuer “guides”. The guides seemed well-meaning and compassionate and provided verbal advice which helped Debra end her life herself, using equipment she purchased online.

Debra’s situation and death, demonstrates a significant failing in the Oregon care system. Her case raises a number of questions such as: Were all available choices adequately explored? Should people be driven to well-meaning amateurs for information on how to end their lives?

MDMD would like to see people like Debra have the option of a medically assisted death, but only after professional consultation and after it can be confidently said that:

  1. her decision was not the result of a curable depression
  2. her decision was not due to understandable but transient unhappiness due to her recent bereavement
  3. her decision was not something which would change if she received adequate support to adjust to her changed circumstances.

The Final Exit Network clearly provided some form of valuable consultation, in the absence of alternatives. However, end of life situations are invariably complex and require trained professional involvement to help individuals reach the decision that is right for them. It seems that the Oregon model could be improved in this respect by providing an assisted dying option for those like Debra. Whilst MDMD is sympathetic to Debra’s case and is grateful Debra could avoid a traumatic method of ending her life, her reliance upon the Final Exit Network demonstrates the need for a better law in Oregon.

4) Use of intravenous delivery of lethal medication to significantly reduce the time to die and increase the reliability of medically assisted deaths.

The final segment of the programme showed Gus and his family after Gus swallowed the lethal medication which he was prescribed. Although he appeared to be sleeping comfortably, the death took 7.5 hours.

To investigate the time that life-ending oral medication can take to end life MDMD contacted Dr. Erika Preisig, President of Lifecircle in Switzerland which offers medically assisted suicide to foreign nationals. She told MDMD that the longest duration of death by oral assisted dying she was aware of was 26 hours. (A case of pancreatic cancer where a patient can have a lot of stomach water (Ascites), which makes the uptake of the medication very slow.)  Dr Preisig explained that at Lifecircle, whenever possible they use an intravenous method where the patient controls a valve to start the flow of the medication which will end their life. (It is required by Swiss law that the patient self-administers the lethal medication.) Dr Preisig told us that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”. Dr Preisig has assisted 386 people to die using this method. MDMD conclude that this seems a far preferable method than that used in the USA.

Louis Theroux’s documentary raised important questions about the Oregon model. For over 20 years, Oregon has been taken as an example for legislation elsewhere, both within the USA and around the world. MDMD believe it is an important first step, but that several issues remain unresolved by the Oregon-style approach. It is important to discuss these issues and learn from not only the Oregon experience but also other countries such as Switzerland, Netherlands and Belgium in any future attempt at changing the UK law.

There is ongoing debate in both Oregon and Canada as to what improvements may form the next step, particularly regarding degenerative diseases like Debra appeared to have. MDMD watches with interest as this will inform what might one day happen in the UK.

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Assisted dying campaigner takes case to the highest court in UK

Humanist and assisted dying campaigner Noel Conway

Assisted dying campaigner Noel Conway, who has motor neurone disease (MND) and wants a change in the law to allow assisted dying in the UK, has taken his case to the Supreme Court today.

Noel, a 67-year-old retired lecturer from Shrewsbury and a member of Humanists UK, suffers from terminal MND. Noel is campaigning to change the law and wants the right to die if his condition worsens to the point that he has six months or fewer to live. The permission hearing for his case was held at the Supreme Court and Noel is now awaiting the outcome of the decision.

Humanists UK, which is supporting Noel’s legal bid, will apply to intervene in the upcoming case if the court grants permission, as it did at the High Court and Court of Appeal. Humanists UK 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.

Lawyers acting for Noel have argued that the current law is an intrusion into Mr Conway’s right to privacy and therefore incompatible with the Human Rights Act 1998.

MND is a progressively degenerative condition in which a person’s muscles weaken and they struggle to grip, walk, speak, swallow, or breathe. Noel himself is currently dependent on a ventilator to breathe for nearly 20 hours a day.

The case comes almost two months after the death of Omid T, a Humanists UK member who was forced to travel to Switzerland to die with dignity while awaiting his High Court case.

Humanists UK Chief Executive Andrew Copson said: ‘Noel hopes to establish that all people who are terminally ill must be able to make their own choices about how they want to die and to have these choices protected by law. We are proud to support Noel’s case.

‘In any assisted dying law there must be strict legal safeguards in place but being able to die, with dignity, in a manner of our choosing, must be understood to be a fundamental human right.’

Nancy Collins, Partner at Hodge Jones & Allen, who represents Humanists UK, said: ‘We welcome today’s permission hearing by the Supreme Court. We hope that permission will be granted and that the Court will swiftly consider Mr Conway’s case that he should be allowed to choose the manner and timing of his death. We continue to represent Humanists UK who have long campaigned for the right to assisted dying.

‘We hope that the Supreme Court will make a positive finding in support of Mr Conway and the proposed scheme for assisted dying so that terminally ill people are able to choose how and when to die, where they wish to do so. We believe that this is a fundamental right that should now be recognised and protected by the law.’

Noel Conway is being supported by campaign group Dignity in Dying.

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 more about Noel Conway’s case in our previous news item here: https://humanism.org.uk/2018/04/26/humanists-uk-to-intervene-in-conway-assisted-dying-case-at-court-of-appeal/

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

Read more about the case of Omid T which Humanists UK also supported: https://humanism.org.uk/2018/10/04/humanists-uk-mourns-death-of-assisted-dying-campaigner-omid-t-who-has-died-in-switzerland/

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.

PRESS RELEASE: A New Documentary Has Explored the Realities of Oregon’s Assisted Dying Model

On Sunday, BBC 2 aired the second installment of Louis Theroux’s new documentary series Altered States. “Choosing Death” followed the journeys of Gus, Lorri and Debra, as they grappled with a choice to end their lives.

Suffering from stage four pancreatic cancer, Gus was eligible to end his life under California’s 2016 End of Life Act. California’s law is modelled on the system and safeguards first established in Oregon in 1997.  Anyone seeking an assisted death must be over the age of 18, be of sound mind, have gained the consent of two doctors, waited for a period of 15 days after an initial oral request to die and be expected to die within 6 months or less. This approach is being made available in an increasing number of US states and will become available in Hawaii in January 2019. The film showed the difficulties faced by those dying, and their families. Deciding the time of death is particularly difficult, balancing the wishes of the dying person to avoid unwanted suffering for themselves and their family on the one hand, and the family’s wish to put off the loss of the dying person for as long as possible on the other. This is always going to be a difficult decision but much rather this (preferably with more independent professional support than was shown in the film), than have to suffer the final stages without the ability to bring it to an end when desired.

At one point viewers watched Gus as he broke down, saying his decision was a “burden on [his] loved ones because they [didn’t] want [him] to go”. “I feel like I’m letting [them] down, when I decide to take that option.” Admitting if he was completely selfishly he would have ended his life many months earlier than he did.

Gus and his family did agree a time for him to die by swallowing the prescribed medication. He died peacefully with his family, however the death took over 7 hours. In contrast, Lifecircle, a Swiss organisation which provides medical assistance to die, uses an an intravenous (IV) method controlled by the patient.

Dr Erika Preisig, President of Lifecircle, told MDMD that the time taken by the Lifecircle method is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all.” Dr Preisig, has assisted 386 people to end their life using this method. It appears to have clear advantages compared to the US method, but still allows the patient to take the final action themself, something required by Swiss law.

Viewers also saw Debra, a 65 year old wheelchair-bound widow, ineligible under Oregon’s law for an assisted death. Debra also suffered from dementia like symptoms – something she knew would lead to an intolerable decline for her. Following the death of her husband she had no close relatives. She sought advice from a group called Final Exit Network, FEN. Their two “guides” were compassionate and offered only advice (they did not provide equipment or physically help with Deborah’s death). With their guidance, Deborah chose to end her life.  

Following its broadcast the BBC 2 documentary sparked an online debate as to whether the UK should change its law. In 2015 Rob Marris MP, had introduced an Oregon style assisted dying bill into Parliament, but had failed to pass it during its first reading, losing 118-330 against.

Phil Cheatle, Coordinator of My Death, My Decision, a UK organisation which campaigns for a change in the law has said:

Yesterday’s documentary highlighted precisely why My Death, My Decision is campaigning for a more inclusive change in the law. Few won’t have sympathised with Debra’s story. Despite possessing a clear and settled wish to end her life and the capacity to make such a choice, the law did not allow her the help and support she needed to end her suffering. To respect someone’s dignity, to uphold their autonomy and to act compassionately, the law must allow assistance for those whose medical conditions give intolerable and incurable suffering regardless of their life-expectancy.”

“It is up to society to provide as much help as possible, but up to the person themselves to form their own view of whether this is sufficient. With the right support some can and do live fulfilling lives, despite the very difficult medical situations they endure. However this is not always possible. For those who, after careful and informed consideration, decide that their quality of life is permanently below the level  they can accept, the law needs to change.”

The film raises questions about unregulated well-meaning amateur groups like Final Exit Network. MDMD believes that a legal, regulated, professional assessment and support process would be a much safer way to ensure that people like Debra were making the right choice for themselves, having carefully considered all the options, before having a medically assisted death if that is their well-considered and persistent wish.”

“Louis Theroux’s documentary highlighted the empowering choice those who are within six months of dying possess in California. For those who are of sound mind and either terminally ill or incurably suffering, it is time for the UK to offer that choice as well.”

The final episode in Louis Theroux’s series “Take my Baby” will air on Sunday 25th November at 9pm.

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