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

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

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

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

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

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

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

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

 

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Listen to the evidence’ on assisted dying, says renowned assisted dying expert at My Death, My Decision’s 2020 Doran Lecture.

One of Canada’s leading assisted dying doctors, Dr Stefanie Green, has urged politicians to ‘listen to the evidence’ on assisted dying, as part of the 2020 Doran Lecture, an annual lecture series hosted in memory of Frank Doran MP and by My Death, My Decision. 

Her comments came after My Death, My Decision called for the Justice Secretary to issue a call for evidence (public inquiry) into assisted dying earlier in the year. 

As part of the online lecture, jointly run by My Death, My Decision and Friends at the End, Dr Green, the President of Canada’s assisted dying practitioners association, explained that as a result of a successful legal case in 2016 and subsequent developments, assisted dying is now permitted in Canada for adults who are either terminally ill or incurably suffering. She expanded this to add that under Canada’s law someone is eligible to request an assisted death if they suffer from a grievous and irremediable medical condition, are in a state of irreversible decline, and are enduring intolerable suffering. She also explained that whilst Canada’s Parliament had initially restricted assisted dying to people with a ‘reasonably foreseeable death’, this criterion had proved ‘less than spectacularly clear’ and that, following another legal challenge in the Truchon case, Canada’s Government has now proposed new legislation to remove this narrow limitation. 

Responding to a question about how the UK could best people protect vulnerable people if the law changed, Dr Green said ‘people often say ‘How do you make sure someone is not coerced?’ But clinicians do this everyday in their work, assessing someone’s capacity and their ability to speak freely for themselves: this is what we do’. 

She later added because of legal assisted dying, Canada now has ‘a much more open discussion about end-of-life options … The need for good palliative care has come to the forefront, because of assisted dying. Because people are now talking about assisted dying, they’re now talking about palliative care in a way that the palliative care community had wished they’d been talked about earlier’. 

The themes of Dr Green’s lecture clearly struck a chord and during a live question and answer session afterwards many people were eager to learn more about (i) the role patients had played in the evolution of Canada’s assisted dying law; (ii) the similarities Dr Green, the Chair of My Death, My Decision, Trevor Moore, and Chief Executive of Friends at the End, Amanda Ward, saw between the UK and Canada; and (iii) why Canada chose not to limit assisted dying to those with six months left to live.  

Notes:

A full recording of the event and slides can be found at: https://www.youtube.com/watch?v=ETA86Dobb90 

The Doran Lecture is an annual talk given in memory of Frank Doran, a Member of Parliament and committed assisted dying advocate. During his lifetime, Frank represented the people of Aberdeen for more than 20 years, and tirelessly championed legal, political, and human rights causes – including assisted dying – before tragically dying aged 68 from cancer. In honor of his achievements and work towards a kinder, more compassionate, and inclusive society – the Doran lecture is delivered by a range of pre-eminent thinkers in favour of assisted dying reform. 

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Patients can mistakenly believe assisted dying is available in the UK, causing additional mental suffering, warns former nurse.

A former nurse has opened up about how cruel it feels to refuse patients, who do not want to endure weeks of suffering, the option of a legal assisted death. 

In 2009, the Royal College of Nursing voted to adopt a neutral stance on assisted dying reform, and called for a public inquiry to help those who were confused about the law. 

But now, Pauline Carroll, an ex-district nurse, has said that patients can still be unaware that assisted dying is illegal in England and Wales, and that it made her feel ‘more like a bully than a nurse when patients with difficult symptom control requested assisted deaths … [since she] believe[s] it is cruel to force these patients to suffer a protracted death against their wishes’. 

Speaking about her experience of caring for a man suffering from Motor Neurone Disease, who had mistakenly thought an assisted death would be possible, she said knowing the option of an assisted death existed, with appropriate safeguards, would give many people in her patient’s position peace of mind. She added ‘It is incredibly important to respect a patient’s autonomous decision in end-of-life care and the general medical profession is coming round to this view’. 

Her comments follow a submission from My Death, My Decision to the Welsh Parliament that assisted dying and palliative care should be seen as two options on a spectrum of end-of-life care to improve overall choice at the end of life; and a longstanding campaign for the Ministry of Justice to issue an inquiry into the ban against assisted dying. 

Chair of My Death, My Decision Trevor Moore said: 

‘The archaic law on assisted dying in the UK serves only to add to the anguish of those already coping with difficult end of life decisions. Those enduring intolerable and incurable suffering can gain considerable comfort in the knowledge that a dignified death is available, as other more enlightened countries have shown.. Why does the UK continue to deny people the ability to decide how, where, and when they want to die – a right that exists for tens of millions of people in many jurisdictions around the world?  The time for the Government to launch an inquiry into legal, safe, and compassionate assisted dying is long overdue. 

Adults of sound mind, who are either incurably suffering or terminally ill, should have the option of a safeguarded assisted death.’

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Ban on assisted dying undermines end-of-life care in Wales, suggests My Death, My Decision

Credit: National Assembly for Wales, https://bit.ly/3dAw1th

My Death, My Decision has responded to a consultation on the future of justice in Wales by calling for assisted dying to be devolved – in order to unify Wales’ end-of-life care under one administration. My Death, My Decision hopes that this consultation will ignite the Welsh Parliament to set a national standard by reforming the law on assisted dying, as it has previously done on issues such as organ donation. 

In their response to Making Justice work in Wales, a consultation to identify areas of concern and further justice issues for devolution, My Death, My Decision said that, just like palliative care, assisted dying should be seen as one choice on a spectrum of end-of-life options, and that it is ‘plainly illogical’ when Wales already has authority over palliative care for it not to be able to decide its own law on assisted dying. 

In 2014, the Senedd voted against endorsing the principles of a bill which would legalise assisted dying by creating a narrow exception for adults with six or fewer months left to live. However, since 2014, research made available by My Death, My Decision suggests that the current prohibition on assisted dying could have disproportionate consequences for  Wales; as the number of people travelling from Wales to Switzerland for an assisted death has more than doubled – and there are multiple years where those who travelled from the UK for an assisted death disproportionately came from Wales. 

Throughout its consultation response, My Death, My Decision argued that Wales should ‘take a leading stance on legal, safe, and compassionate assisted dying for the incurably suffering and terminally ill’, and in order to do that effectively the Senedd should have the authority to determine its own law. 

My Death, My Decision’s Chair Trevor Moore said: 

‘It is plainly wrong that, unlike other jurisdictions which have proven that palliative care and assisted dying work best when they work in tandem, a key aspect of Wales’ end-of-life care should be divorced from it’s control. 

Although there is now compelling evidence to support a change in the law for all of England and Wales which would allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of an assisted death, we believe that the final say on Wales’ law should at least be vested within its elected Assembly. We urge the Government to take notice of this evidence and recognise the compelling case for devolution’. 

Read My Death, My Decision’s full consultation response to the Senedd here and My Death, My Decision’s full response in Welsh here. 

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Adults have a right to shape and control their end-of-life, says Court of Protection

A 34-year-old man who is on life-support will be allowed to die following a ruling from the Court of Protection. The man, known as ‘MSP’ for legal reasons, has suffered from ‘painful and complex abdominal problems’ for more than a decade. His life could only continue if he had a permanent stoma inserted. This was something that he had tried but found unacceptable and had removed. Shortly afterwards he was readmitted to hospital as an emergency.

MSP had carefully considered his future and wrote a detailed advance decision which explicitly refused a permanent stoma. The judge pointed out that ‘there are procedural deficiencies in MSP’s Advance Decision, for example, the signature was not witnessed by a second person as required’. However, having carefully considered the situation and heard evidence from his family and doctors Mr Justice Hayden chose to overlook the deficiencies as the advance decision still provided strong evidence regarding what was in MSP’s best interests.

The case was complicated as, when MSP was readmitted to hospital, the consultant on duty was not aware of the background of the case or of the advance decision. The consultant impressed upon MSP that his condition was life-threatening and that he required a stoma to be formed immediately. Surprisingly MSP agreed and the operation was performed. He remains unconscious, on life-support with artificial feeding and hydration. The intervention of a consultant who knew MSP’s case well seems to have been the reason why the case went to court to establish, under the circumstances, what is in MSP’s best interests.

In analysing the situation the judge concluded: ‘this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of his life. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous’.

MDMD’s Lead Campaign Commentator, Phil Cheatle said:

‘The case is clearly complex, though there are important lessons to be learned. As this case demonstrates, advance decisions are powerful legal documents, but they must be completed correctly, to ensure that a patient does not get treatment they do not want, when they are unable to communicate that wish. It is also important to ensure that in an emergency, doctors are aware of an advance decision before emergency treatment is given. 

This case highlights that intolerable suffering is highly personal. For MSP, a stoma was intolerable, but many other people may be able to adjust to life with a stoma and are pleased to have this treatment. It is the individual’s well-considered, well-informed decision that doctors have to respect, and courts uphold, even if they might think it is unwise. I’m pleased to see that the courts are standing up for individual autonomy’. 

Update 11th June 2020: MSP has now died, after his life support systems were turned off by hospital staff, following the legal ruling.

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Restricting assisted dying to the terminally ill would be ‘totally arbitrary’, says disabled journalist Melanie Reid

Award-winning journalist of the Times’ Spinal Column and author of The World I Fell Out Of Melanie Reid MBE, has criticised attempts to limit assisted dying for those with only six months left to live, in a filmed interview shown at an online event jointly hosted by My Death, My Decision and Friends at the End.

In an interview with My Death, My Decision’s Chair, Trevor Moore, Melanie explored how her attitudes towards assisted dying had changed following an accident ten years ago which left her a tetraplegic. Melanie explained that whilst she had always supported personal autonomy, assisted dying had become all the more important to her after her accident, because if the option existed she would be able to live a happier life; secure in the knowledge that if her pain ever became unbearable she would be able to end it. 

Responding to the criticism of disability rights organisations, Melanie said that no two people experience disability in the same way and that whilst some people may not want the option of an assisted death, that does not permit organisations – even those purporting to speak on her behalf – the right to say at what point her life is liveable, endurable, or enjoyable. Adding that robust safeguards can be created to protect those who may be perceived as vulnerable, she said: 

‘I have very little control in my life in the sense that I am fairly powerless. When you end up paralysed and in a wheelchair, you lose a lot of your power, authority, or agency. That power that I have, that bit of control, that knowledge that my fate will not be decided by anyone else and that I can choose the time of a good death; surely that is the one bit of agency that I am entitled to?’ 

Following the showing of the interview the Chair of My Death, My Decision, Trevor Moore and the Chief Executive of Friends at the End, Amanda Ward, also answered a series of questions, ranging from safeguards which could be incorporated into future legislation, whether attitudes may have shifted since 2015, and barriers to future legal reform. 

NOTES:

For the full recording of the event, visit: https://www.youtube.com/watch?v=XEQUSuUZhy0

For the full recording of Melanie Reid’s interview with Trevor Moore, visit: https://www.youtube.com/watch?v=F4B6Drn0E1Y

For a transcript of Melanie Reid’s interview with Trevor Moore, visit: https://www.mydeath-mydecision.org.uk/wp-content/uploads/2020/05/Trevor-Moore-in-conversation-with-Melanie-Reid-Transcript.docx

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Medical voices urge doctors to respect patients’ wishes about coronavirus

Sir Iain Chalmers left, Professor Wendy Savage centre, and Dr Henry Marsh right.

An article published in the British Medical Journal (BMJ) has called upon healthcare professionals to respect their patients’ end-of-life wishes, and ensure that the rights of those receiving care are protected during coronavirus. The article, written by My Death, My Decision’s Medical Group, states that medics should not feel pressured into providing everyone with potentially futile treatments, if the effect of that treatment would be to merely prolong their suffering. 

The co-authors of the article are MDMD’s Associate Director Colin Brewer; Sir Iain Chalmers, the co-founder of the medical research Cochrane Collaboration; Dr Phil Hammond, the acclaimed physician and broadcaster; Dr Henry Marsh, the best-selling author and neurosurgeon; Professor David Nutt, the President of the European Brain Council – and Professor Wendy Savage, winner of the BMJ’s award for outstanding contribution to health and women’s rights advocate. 

Trevor Moore chair of the campaign group My Death, My Decision said: 

‘Coronavirus has already taken the lives of tens of thousands of people, leaving their family and friends to grieve at the same time as coming to terms with a changed world. It is essential, during such a difficult time, that the virus not be allowed to rob those facing intolerable and incurable suffering of their rights to say how they’d like to be cared for as well. There has never been a time when thinking about how we’d want to be treated in the final stages of our life has mattered more; nor, a moment when doctors and nurses should feel supported for upholding the wishes of their patients. In spite of these challenging times, the respect that we show towards a patient’s autonomy remains a defining quality of our healthcare system. We are pleased so many prominent medics have voiced their desire to protect it.’

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Dutch court backs assistance to die for people with advanced Alzheimer’s

The Netherlands’ highest court has ruled that doctors can honour euthanasia requests for adults with advanced Alzheimer’s, provided they have signed a written request beforehand. 

Although it has always been possible in the Netherlands for a patient unable to express their will at the moment of death, to receive assistance to die, this ruling has brought further clarity on the law there. Doctors will now be able to help under strict conditions, including that the patient must have ‘unbearable and endless suffering’ and that at least two doctors must have agreed to carry out the procedure. The patient must also have made a declaration that they want assistance before they could ‘no longer express their will as a result of advanced dementia’. 

The latest figures show that the overall number of requests for assisted dying has fallen in the Netherlands, and only two people with severe dementia applied for an assisted death in 2018. 

This ruling follows from an earlier decision in the Netherlands, which acquitted a doctor for helping a 74-year-old woman end her life. The woman, who had been suffering from severe Alzheimer’s, had written a statement saying she wanted to die if she became incapacitated.

Commenting on the ruling, Trevor Moore chair of the campaign group My Death, My Decision said: 

‘Dying in a manner and timing of your own choice relates to the most fundamental of human rights – autonomy. No one should be forced to endure as an illness eclipses their very being or slowly erodes everything which once made them themselves. That’s why we support assisted dying for adults of sound mind who are either incurably suffering or terminally ill, and that’s why the law must change.’ 

‘However, we believe mental capacity is an essential safeguard within any system which permits assisted dying. We encourage everyone in the UK, suffering from Alzheimer’s, who wants greater control over their end of life care, to set out their wishes in an advance decision or through a lasting power of attorney.’

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Distinguished right-to-die activist Barbara Smoker dies

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

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

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

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

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

Dr Colin Brewer said: 

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

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

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Queensland – the next Australian state to legalise Assisted Dying?

A parliamentary committee has recommended that the Australian state of Queensland should legalise voluntary assisted dying for adults with an advanced terminal illness.

Currently over one-third of Australians have, (or shortly will have), access to a form of assisted dying since the state of Victoria passed its voluntary assisted dying law in 2017, followed by Western Australia in 2019. If Queensland follows, this would give the option of an assisted death to well over half (57%) of Australians.

 The Queensland report recommends that any assisted dying legislation there should be limited to:

  • Adults over 18
  • Queensland residents
  • Those ‘having an advanced and progressive terminal, chronic or neurodegenerative medical condition that cannot be alleviated in a manner acceptable to the person, and that the condition will cause death.’
  • People with ‘decision-making capacity’.

Any conversation about the possibility of an assisted death would have to be instigated by the person wishing to die. Counselling should be available to anyone who requests it, but should not be compulsory, as some submissions to the enquiry had advocated.

Importantly the report recommends that the legislation should not be limited to a ‘precise timeframe for a person’s anticipated date of death … due to the complex, subjective and unpredictable nature of the prognosis of terminal illness.’ This follows from the Canadian model, which was cited in evidence to the enquiry.  

Another thoughtful recommendation is that ‘the coordinating practitioner may determine whether self-administration of the substance or administration by the practitioner is the method best suited to the patient.’ It would permit the lethal substance to be provided intravenously, controlled either by the patient or by the doctor. This overcomes one of the problems with oral methods used in Oregon and other US states. Experience from the organisation Lifecircle in Switzerland, indicates that the Intravenous method is the quickest and most reliable, as their IV method (in which the client opens the cannula) results in a person falling asleep within thirty seconds and dying peacefully within four minutes. This recommendation again follows the example of Canada.

Mental illness is a question that often comes up in assisted dying debates. The report recommends that provided the person has the mental capacity to make a life-ending decision, any mental illness itself should not prevent an otherwise valid request for an assisted death.

Despite the careful analysis demonstrated in the report, an Australian newspaper, The Age, points out that political focus in Queensland is rightly concentrated on tackling the Covid-19 crisis. It is currently unclear when legislation will be proposed.

Phil Cheatle the Lead Campaign Commentator for My Death, My Decision said:

‘The Queensland report is encouraging as it pays close attention to important nuances of the assisted dying debate and takes on board experience from Victoria and Canada. It recommends following Canada in not limiting assisted dying to a strict prognosis time limit such as 6 months and in permitting intravenous delivery. These overcome two serious criticisms of the US/Oregon approach and we strongly endorse Queensland’s decision to avoid them.’

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