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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