Canada

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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Do Alzheimer’s sufferers have to choose assisted dying too soon?

Leila Bell, an 85 year old Canadian, suffered from early stage Alzheimer’s disease. She died in August 2019 using the Canadian Medical Aid in Dying (MAID) legislation. However, in an in depth interview shortly before her death, she explains that she is angry that she had to end her life as soon as she did, because she was afraid that if she delayed, she might lose her mental capacity. Mental capacity at the time of an assisted death is one of the safeguards in the current Canadian MAID legislation.

In her video Leila Bell says: “If I had been able to do an advanced request, I would not have had to decide to make that decision to die now. … I have been forced to decide now because I fear that at some future time, I will not be able to request it due to the compromise in my brain being much more severe.”

Canadian MAID providers have drawn up guidelines on how to best help people like Leila. The Canadian government is considering extending the MAID legislation, possibly to include those like Leila Bell. In Switzerland, like Canada, those eligible for a medically assisted death must have mental capacity at the time of death. The Netherlands and Belgium permit euthanasia by an advance request, but there are very few cases where this happens.

Assisted dying in cases of dementia raises a number of issues. See this page for a detailed discussion.

Responding to the story, MDMD’s Lead Campaign Commentator, Phil Cheatle said:

‘It is easy to sympathise with Leila’s concern, but the issues involved are far from simple. It is a large step to ask someone else to decide, on your behalf, when to end your life. This is especially difficult for someone who is still conscious but lacks mental capacity.’

‘Dementia is now the cause of 1 in 8 deaths in England and Wales, a figure that rises to 1 in 4 deaths for women over 80. Advanced dementia is a condition many would wish to avoid. 88% of people consider the option of medically assisted dying to be acceptable for Alzheimer’s patients, before they lose mental capacity, in at least some cases. MDMD is watching developments in Canada closely in the hope that the UK can learn from their experience.’

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New Guidelines for Canadian Medical Assistance to die in early stage Dementia cases

MDMD commented recently on how the current Canadian Medical Aid in Dying (MAID) legislation was now starting to be used in some early stage dementia cases. A recent 30-minute radio programme broadcast by CBC (Canadian Broadcasting Corporation) discusses another case in depth. The programme and a detailed summary are available on their website.

This is not an expansion of our law … This is a maturing of the understanding of what we’re doing. Dr Stefanie Green

Gayle Garlock was a retired university librarian who loved to read. When early stage Lewy-body dementia robbed him of his ability to read, his quality of life reduced unacceptably. For him that was intolerable suffering as reading was fundamental to who he was as a person.

Dr Stefanie Green is an assessor and provider of Assisted Dying in British Columbia. She is also the current president of the Canadian Association of MAID assessors and providers, (CAMAP).  She first met Gayle Garlock in March 2018. At that time she was unsure whether he met the conditions for assisted dying in Canada, or whether she would personally be willing to help him. She was understandably concerned that if she helped Gayle and was later found to have acted improperly she could face a 14 year jail sentence.

The more we talk about this topic … the better our deaths will be, however we want to shape them. Dr Stefanie Green

Dr Green and her colleagues at CAMAP spent many months considering the issues around MAID and early stage dementia, as it relates to the Canadian law. They have produced an insightful document providing guidelines for how to assess MAID requests from those with dementia.

The document considers the assessment of three key questions:

  • Whether the patient is in an advanced state of decline in capability;
  • Whether the patient has capacity to make the decision to have MAiD; and
  • Whether the patient’s natural death is reasonably foreseeable.

In discussing the interpretation of “reasonably foreseeable” death, the guidelines cite a legal case which concludes: “Natural death need not be imminent and…what is a reasonably foreseeable death is a person-specific medical question to be made without necessarily making, but not necessarily precluding, a prognosis of the remaining lifespan. […] In formulating an opinion, the physician need not opine about the specific length of time that the person requesting medical assistance in dying has remaining in his or her lifetime.” This shows how the Canadian law is more flexible than laws requiring a specific life expectancy estimate, such as 6 months, used in Oregon and elsewhere. Doctors have long argued that it is frequently impossible to give an accurate time prognosis. This has led to calls for a more flexible definition of “terminal illness” in some jurisdictions.

The CAMAP guidelines argue that as MAID requests will be part way through the mild phase of dementia, the life expectancy of most dementia patients requesting MAID would likely be less than 5 years, particularly in older patients. This is within the intention of “reasonably foreseeable”. In contrast, the guidelines are clear that cases of mild cognitive impairment (MCI) alone would not be accepted for MAID as not all such cases will progress to dementia and the rate of transition is somewhat uncertain. The death in cases of MCI alone is therefore not “reasonably forseeable”.

The guidelines carefully consider at what point a patient requesting MAID is in an “advanced” state of decline, while still retaining sufficient mental capacity to make a valid MAID request. This is a difficult and delicate issue. The guidelines first point out that for a previously highly intelligent person who is now struggling with the cognitive demands of everyday life, advanced decline is clear in terms of the relative loss of ability. However it points out that “advanced” should not be interpreted only as relative to the pre-dementia baseline, but also in terms of how close the patient is to losing capacity due to dementia. The recommendation is that in the case of a patient whose MAID request is refused solely because they are not deemed to have reached an advanced state of irreversible decline in capability, the patient should be reviewed periodically by an appropriate clinician. When it is believed that they are close to losing capacity the clinician should inform the patient that this is the case. The patient can then decide whether to request MAID or delay, on the understanding that delay may result in their losing sufficient capacity and therefore no longer being eligible for MAID.

The guidelines end with three scenarios showing how a safe assessment can be reached.

After studying the guidelines MDMD’s Lead Campaign Commentator Phil Cheatle said:

“It is very gratifying to see medical professionals in Canada working to establish safe guidelines for interpreting the MAID law in dementia cases. This is essential to ensure safe working practice. Both medical professionals and right-to-die campaigners in other jurisdictions have much to learn from the work CAMAP is doing.”

With this framework in mind, in Spring 2019 Dr Green was open to reconsidering Gayle Garlock’s case. He requested a second assessment. Dr Green found that although his condition had deteriorated he still had mental capacity and was also suffering intolerably. She approved his MAID application. Gayle chose to wait until the end of the summer, but after a fall in June he decided to request MAID in July.

Dr Green repeatedly asked Gayle whether it was his choice or his wife’s or his children’s. His consistent answers on several occasions convinced Dr Green that he had not been persuaded by anyone else. Gayle’s assisted death took place in his home on 26th August, following a final check of his mental capacity and wish for an assisted death.

In making her assessments, Dr Green interviewed Gayle on his own. This ensured that there was no one else influencing or prompting his response. It would perhaps be good practice for a video recording of the crucial assessments to be made, with the patient’s knowledge and consent, should anyone question the decision at a later stage, and for the doctor’s personal protection.

MDMD is delighted that Dr Green has agreed to be the speaker at our next meeting for our members and supporters in London in April 2020.

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Medical Aid in Dying for those with early stage Dementia in Canada

Canadians have had legal access to medical aid in dying (MAID), the preferred term there, since June 2016. The Canadian law does not limit MAID to those who are expected to die within six months, as is the case in those USA and Australian states that permit assisted dying, (the ‘Oregon model’). Instead their law uses the phrase “a reasonably foreseeable death” to indicate those who are “terminally ill” in a broader sense.  A further safeguard is that a person requesting MAID must have the mental capacity to make such a decision at the time of their assisted death. So where does that leave those suffering from the various forms of dementia?

Dementia is recognised as a terminal illness, though it takes 7 or 8 years after diagnosis, on average, to cause death. Many others die “with” dementia rather than “of” it. A staggering 1 in 8 deaths in England and Wales are caused by dementia – a figure that has been steadily rising. There is no cure. Dementia sufferers therefore have a death that is “reasonably foreseeable”. In the early stages of dementia, patients have the mental capacity to make a life ending choice. An assisted death in Switzerland has been an option for many years, provided the person has mental capacity at the time. On this basis, the criteria seem clear cut regarding the law in Canada. But MAID practice in Canada has been cautious as the implications of the law come into effect.

The Globe and Mail, one of Canada’s most widely read newspapers, has recently published an in depth account of the medically assisted death of Alzheimer’s patient Mary Wilson. The article considers how the doctors involved carefully considered the case, in terms of the requirements of the MAID law. The doctors decided to take the risk that they were acting within the law, and gave Ms Wilson the MAID she wanted. The College of Physicians and Surgeons of British Columbia spent 10 months investigating the death, eventually deciding that the doctors had acted appropriately. Although this is not a judicial ruling, it should still go some way to reassure other doctors that this course of action is permitted under the current Canadian MAID law.

The issues concerning Assisted Dying in cases of Dementia are complex and need to be considered carefully. The topic is the subject of a new book by Dr Colin Brewer. The developing situation in Canada shows how relevant this topic is. When invited to comment on the significance of this new case Dr Brewer responded:

“This case shows that most dementias are recognised as conditions that will inevitably be fatal unless another lethal illness intervenes. Canada’s MAID law had some built-in flexibility. As doctors gained more experience of MAID, judges could take that into account. Britain should follow this lead from the Old Commonwealth and not feel obliged to adopt the ‘Oregon Model’.”

MDMD is watching the Canadian developments with interest. We have always held the view that those suffering from early stage dementia, while they still have mental capacity to make a life ending decision, should have the option of a medically assisted death. This is currently available in Switzerland, Netherlands and Belgium. We are delighted that these recent developments in Canada are leading to the option being available there too.

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Canadian court rules in favour of assisted dying for the incurably suffering

The Quebec Superior Court has struck down a restriction under Canada’s law on assisted dying against those with progressive and incurable illnesses as unconstitutional. 

Under Canada’s 2015 law, adults who are of sound mind can voluntarily request an assisted death, if they suffer from a grievous and irremediable medical condition, and are in a state of irreversible decline, enduring intolerable suffering, and their ‘natural death has become reasonably foreseeable’. Between June 2016 and October 2018, 5085 Canadians ended their life via an assisted death, accounting on average for 0.77% of all deaths.

However, following a legal challenge from intolerably suffering Canadians, both suffering from non-life threatening conditions, Quebec’s highest trial court has ruled that ‘the reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired.’

Jean Truchon, 49, who is almost completely paralysed, and Nicole Gladu, 73, who suffers from post-polio argued that the requirement of a reasonably foreseeable death was out of step with the landmark Carter v Canada ruling which paved the way for legal assisted dying. 

Suspending the ruling for six months to allow Canada’s parliament to deal with its fallout, Justice Christine Badouin ruled that Jean Truchon and Nicole Gladu could proceed with an assisted death, and noted that ‘the statutory provision requiring natural death be reasonably foreseeable infringes life, liberty and security of the person guaranteed by Section 7 of the Charter to Mr. Jean Truchon and Ms. Nicole Gladu, in a manner inconsistent with the principles of fundamental justice’.

Nearly 90% of the public now favours a change in the law on assisted dying in the UK. The Canadian ruling follows the launch of two legal cases in the UK to legalise assisted dying for both the incurably suffering and terminally ill from a tetraplegic man, Paul Lamb, and Phil Newby, who suffers from motor-neurone disease. 

Assisted dying is now legal for terminally ill and incurably suffering people in the Netherlands, Belgium, Luxembourg, and Switzerland; it is also legal for specifically terminally ill people in Colombia, ten US jurisdictions, and the Australian state of Victoria. 

The Canadian government can now decide whether to appeal the judgement or not. 

Trevor Moore, Chair of My Death, My Decision, an organisation that campaigns to legalise assisted dying for both the terminally ill and incurably suffering said:

“We warmly welcome the judgement of the Quebec Superior Court, and its decision to defend both the rights of those who are terminally ill or facing incurable suffering, as this marks yet another important step forward within the international consensus, towards a kinder and fairer law on assisted dying. 

An overwhelming majority of the public now favours changing the law on safeguarded assisted dying to enable those living in unbearable and incurable suffering the right to decide the manner and timing of their own death. Just as compassion has motivated others to support assisted dying in the past for those who are terminally ill, it is time for our Parliament to speak up for those facing incurable suffering, such as the late Tony Nicklinson, and now Paul Lamb and Phil Newby.”

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Parliament hears from top Canadian Doctors, on the experiences of assisted dying abroad

On Tuesday 11th December, the All-Party Parliamentary Group (APPG) on End of Life Choices, met to hear from Dr Sandy Buchman and Professor Sir John Temple, on the role of doctors within a public discourse on assisted dying.

Dr Sandy Buchman, the President-elect of Canada’s Medical Association, who was joined by his Vice-President Dr Jeff Blackmer, discussed the role doctors had played in shaping Canada’s decision to legalise assisted dying in 2016. Professor Sir John Temple, the previous President of the British Medical Association (BMA), spoke about his concerns regarding the representation of doctors views.

“I see assisted dying as one more tool in the service of palliative care’s core mission of alleviating suffering” – Dr Sandy Buchman

At the start of his talk, Dr Buchman explained that “medical-aid-in-dying” (MAID) began in Canada, in response to two developments. First, the Canadian Supreme Court unanimously struck down a federal prohibition of assisted dying in 2015. Second, the Canadian Parliament passed an assisted dying law in 2016, which permitted MAID for anyone who was: (i) 18 years or older, (ii) suffering from a grievous and irremediable condition, (iii) enduring psychological or physical suffering which was intolerable, (iv) was capable of giving informed consent and (v) had a reasonably foreseeable natural death.  

Turning to the role that doctors had played during these developments, Dr Buchman explained that throughout Canada’s public discourse, the Canadian Medical Association (CMA) had chosen to play an active role in steering discussions. He argued that whilst it had been the CMA’s longstanding position, to support the right of every physician to follow their conscience, he believed that to uphold this commitment it was necessary to support both the right of  “contentious participation” and “conscientious objection”. Thus, in 2015 when the CMA intervened in the Carter Case, they did so only to provide expert information from a medical perspective and without taking any particular position. Equally, during the 2016 legislative process, the CMA only intervened to provide objective information, and allow Parliament to engage in an informed and full debate.

Dr Blackmer went on to explain that the CMA has purposefully chosen not to approach assisted dying from a yes/no perspective, but instead to broach a wider debate about the role doctors should play in end of life care. Consequently, he explained that it had been essential to the CMA, to consult widely with the public, physicians and medical stakeholders, and understand their concerns before adopting a neutral position.

Indeed, in a powerful moment, Dr Blackmer warned other medics that “if [they] chose not to become involved [in the debate], all that [would] happen is that a conversation [would continue], without them, and they would lose an opportunity to shape the debate”. Both doctors closed their talk, by stressing that they believed it was the responsibility of doctors, to engage within a public debate and provide unbiased information so as to enable a national conversation to move forward.

“Medical organisations must engage with the debate with evidence and honesty and adopt a position that respects patitents’ and professionals’ choices.” – Professor Sir John Temple

Professor Temple then followed Dr Buchman and Dr Blackmer, by focusing upon an emerging divide between the views of medical professionals, and the organisations representing them. At the core of the debate, Professor Temple suggested that a fault-line had emerged within modern medical practice between the profession’s ability to extend life, and its inability to alleviate suffering.

My Death, My Decision noted with particular interest Professor Temple’s discussion of the BMA’s official opposition to assisted dying. Having highlighted that 80% of the public now support changing the law to permit assisted dying, and that the experience of Canada demonstrates that assisted dying laws are not abuse, nor likely to affect a large percentage of the population, Professor Temple suggested that the BMA’s continuing opposition was “troubling”. In particular, he stressed that whilst the BMA has a membership 150,000, only 197 doctors were responsible for its official policy of opposition. Setting aside his democratic concerns, Professor Temple condemned the BMA for failing to reflect the views of doctors, as evident from a recent poll in the British Medical Journal (the BMA’s independent paper), which found 55% of doctors supported a change in the law.  

Turning to the opinions of the wider medical community, Professor Temple suggested that those such as the Royal Nursing Colleges, who have followed a policy of neutrality since 2009, were ahead of doctor’s associations and it was now time for a “fresh meaningful and informed debate” to begin.

Professor Temple closed his talk by highlighting that the BMA, General Medical Council and Royal College of Physicians’ had proven, when offering to assist Guernsey during its debate on changing the law, that the medical profession was capable of approaching the debate constructively. He argued that whilst many doctors may fundamentally disagree with the notion of assisted dying, and that this conscientious objection must be respected, the modern articulation of the medical profession’s practice oath now reads: “I will respect the autonomy and dignity of my patient”. Consequently, in an age when the medical profession is increasingly moving away from paternalism, it is imperative for:

(i) Medical Associations to properly ascertain the beliefs of their members.

(ii) Medical Associations to examine the examples of assisted dying abroad, most obviously the situation in Canada.

(iii) Medical Associations to listen and engage with the stories of those affected by the UK’s prohibition of assisted dying and their families.

Following the two talks, the floor was then opened to a question & answer session. Notable contributions included a question from Paul Blomfield MP, who asked about the degree of safeguards in Canada and Lord Lipsey of Tooting Bec, who raised concerns about the popular understanding of opinion polling on the right to die.

Two questions of particular interest to MDMD, came from Catherine West MP, who asked about potential assurances to those living with a long-term disability, and Lord Warner of Brockley, who asked how the CMA had overcome a rigid opposition from the medical community.

In responding to the first question, Dr Buchman commented that he would not presume to tell the UK how to address the challenge of protecting vulnerable groups, such as the disabled. However, he suggested that were the UK to follow Canada’s example, legislators would be wise to continue considering the issues of assisted dying, as Canada has done, even after the passage of legislation. Dr Blackmer, a specialist in disability and palliative care, made the astute observation that whilst he can sympathise with the dismay of many disabled groups, evidence from Canada indicates that those who are most vulnerable tend to be excluded from accessing end of life care, rather than pressured into it. Consequently, he suggested that those who are most vulnerable in society, are often most frightened by the prospect of having no choice at all.

Regarding the opposition of the medical community,  Dr Buchman said that he believed it was the open approach of the CMA which allowed him, and ultimately those who opposed assisted dying as well, to feel confident in their positions and to create a culture of mutual respect.

As a palliative care specialist, Dr Buchman acknowledged that his personal journey towards accepting assisted dying had spanned over two years. He stressed, that it was his belief  high quality palliative care was key to good end of life planning, but that assisted dying did not threaten the provision of such care, but somewhat perversely strengthened the case for ensuring that palliative care was accessible and available. Closing on a personal example, Dr Buchman explained that whilst he was initially hesitant about the prospect of assisted dying, he ultimately decided that helping patients who wanted to decide when and how they died, was an extension of what he had been doing already: helping to relieve suffering. Dr Buchman explained that when he first participated in an assisted death, for a professor of medicine suffering from Lewy body dementia, he had been struck by the sense of “illumination”, as though “a weight had been lifted”, when he agreed to discuss the prospect of an assisted death, let alone participate. He explained that whereas before his patient had explained he felt hopeless, especially after exhausting the options of traditional palliative care, the option of an assisted death enabled the patient’s mood to lift, and allowed him the dignity to die from a peaceful death surrounded by those he loved.  

Subsequent to their meeting on Tuesday, Dr Buchman and Dr Blackmer also attended a meeting at the Scottish parliament where they told MSPs “I’ve learned from clinical experience that sometimes the only way to alleviate a patient’s suffering is to allow them to choose an assisted death. It’s not an easy decision to become a provider of assistance in dying. It took the better part of more than two years to sort through my deepest emotions. Every case is difficult – every single case is a challenge. I never see this as an easy decision. It’s as difficult as you can make in medicine. No-one I know takes it lightly. But I look to medicine to alleviate suffering. Ultimately I have decided that helping eligible patients who wanted choice over the manner and timing of their death was an intention of what I was doing all along – that is relieving suffering. This is a choice that I have made personally, this is a matter of conscience which should unequivocally be respected.”

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Economist Essay Series on Assisted Dying

The Economist is publishing a series of essays by those involved in the Assisted Dying debate. We are delighted that one of the invited authors is Dr. Michael Irwin, MDMD’s founder and now a patron. Michael’s piece describes the five occasions where he has been present at an assisted suicide in Switzerland.

All the essays are well worth reading. The series keeps a balance between those in favour of a change in the law, and those opposed.

Steven Fletcher gives the perspective from someone who is severely disabled. Steven, a quadriplegic since he was 21, disabled from the neck down after a motor accident, was a member of the Canadian parliament, including five years as a cabinet minister. As a backbench MP he “introduced the private members’ bills into parliament that ultimately resulted in the changes in the law that ended the prohibition on medical assistance in dying in Canada.” He ends by saying “Dying with dignity is the greatest shift in morality in Canada in this generation. As long as the shift is in the context of empathy, compassion, choice, hope and common sense other countries should learn from our example.”

Another particularly informative essay, also from Canada, is from Ellen Wiebe, a doctor who says she has “provided about 150 assisted deaths”. Talking about this role from the doctor’s perspective she says “an important part of being a good doctor is helping our patients have a good death, but the only person who can define a good death is the person dying.” (For a discussion of what is meant by a “good death” see our article here.)

This article is in stark contrast to the essay from Ilora Finlay, a crossbench peer in the House of Lords, professor of palliative care, and leading critic of attempts to legalise assisted dying in the UK. Baroness Finlay argues that a change in the law is not necessary and that we have a lot of choice already, in particular a choice to refuse life prolonging treatment, relying on doctors to provide “analgesia and other measures to relieve distress”. Unfortunately that can fall far short of a “good death”, as defined by the dying person. This is especially so when accompanied by the fear of what may happen, coupled with the inability to do anything about it. The option of a medically assisted death, as part of the palliative care process, would alleviate that fear and help prevent early suicides both in the UK and in Switzerland.

Baroness Finlay also says that, due to improved palliative care, “for most people in Britain today, dying does not mean an agonising death, but a gentle ebbing away of life.” MDMD agrees that palliative care helps ensure a good death for many, and we fully support better palliative care provision. However, our fear is for those who fall outside “most people”, and also for those whose idea of a good death is not “a gentle ebbing away of life” – especially if this is protracted, unpleasant, and undignified as can so often be the case, particularly for those facing advancing dementia and other degenerative conditions.

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Extending the Oregon Right to Die Law. Evidence of a “Slippery Slope”?

A recent article in the Washington Post describes moves in Oregon, USA to try to extend their Death with Dignity Act to include help for those suffering from degenerative diseases such as Motor Neurone Disease, Parkinson’s and Alzheimer’s. Related discussions are taking place in other US states and in Canada. For example, a recent paper published in the academic journal Geriatric Nursing reports that 83% of a sample of elderly care nurses in Quebec were in favour of extending the Medical Aid in Dying legislation to include incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity. In Ontario a recent legal case indicated a broader interpretation of the “reasonably forseeable” death requirement in their Medical Aid in Dying legislation, allowing it to cover someone with chronic osteoarthritis. In interpreting the law the judge explained “the natural death need not be connected to a particular terminal disease or condition and is rather connected to all of a particular person’s medical circumstances.”

The Oregon law has been in effect for 20 years without extension, but it is limited to those who have a life expectancy of six months or less, and who have sufficient mental capacity to make a clear life-ending decision. MDMD has consistently argued on behalf of those who are suffering unacceptably and incurably, but whose life expectancy is longer than six months. We are particularly concerned about those, like Alex Pandolfo, who suffer from dementia, which can be very unpleasant in its final stages, and is now the most common cause of death in England and Wales.

The Oregon law has been used as a model for right to die legislation in other US states, such as California and Colorado. An attempt to use the Oregon model for the UK was rejected by the House of Commons in September 2015. One of the arguments used by those who oppose even this limited form of right to die legislation, is that it would be the start of a “slippery slope” leading to much broader legislation in future. Is the current debate in Oregon and elsewhere evidence for this?

MDMD think not. However, it may be the next step along a carefully considered and difficult path towards a safe, compassionate and workable approach to dying in our modern world of advanced medical sophistication, where people live for much longer, but where more people are enduring a long period of suffering before their eventual death.

It is helpful to look back at other changes in legislation to see how they have been introduced. In 2018, in the UK, it is appropriate to consider the right to vote. This year we celebrate the 100th anniversary of women first gaining the right to vote. But not all women. Only those who were “over the age of 30 who were householders, the wives of householders, occupiers of property with an annual rent of £5, and graduates of British universities”. It was another 10 years before all women over 21 had the right to vote, bringing them in line with men, and not until 1969 when the voting age for both men and women was reduced to 18. Was this a “slippery slope” that should have been prevented? In 2018 it would be a brave person to suggest that it was. Rather, it was a cautious, step-by-step, considered, and hard-won campaign for equality and representation.

Another example of developing legislation is the introduction of the “horseless carriage”. In the early years, (1865-1896), for public safety, self-propelled vehicles had to be preceded by a pedestrian waving a red flag or a lantern. Since this was relaxed, cars (and their drivers) have caused much loss of life and serious injury. They still do. Importantly, the lives lost are not those of incurably suffering people who, after careful consideration of their likely future and the available alternatives, have decided that their best option is for their lives to end. Instead the lives lost in “road casualties” are predominantly those of healthy, active, often blameless, people whose lives are tragically cut short.  Although a succession of legislative changes have improved car safety considerably, the risk is still there. Instead of banning cars, society accepts this risk, killing on average 5 people per day in Great Britain in 2016, and seriously injuring 66 people per day.  This risk is far greater than even the worst fears of those concerned about the risks of possible abuse of any proposed assisted dying legislation. Was allowing self-propelled vehicles, and subsequently weakening the restrictive red-flag law a slippery slope that should have been resisted in order to protect vulnerable people: passengers; pedestrians; cyclists etc.? No, a balance was found which society deemed acceptable. Many laws were gradually introduced to improve road safety when the risks were found to be unacceptably high: driving tests; vehicle safety checks; compulsory wearing of seat belts; drink-drive limits etc.

Many analogous situations exist, for example legislation concerning gun control, where public safety, in particular protecting “vulnerable people“, has to be balanced against freedom of choice for the individual.

In considering what assisted dying legislation to adopt, and how any first step might later be extended, it would obviously be preferable to get the “right” law in the first place. In practice, in some jurisdictions, a cautious, step-by-step approach may be required. It is clear to MDMD supporters that the current Oregon law doesn’t go far enough, as it leaves many who suffer incurably and intolerably without the compassionate assistance to die they would like. We welcome the debate to broaden the Oregon law and wish the campaigners there success. We hope that the UK will learn from the Oregon experience and adopt a broader initial step, taking into account experience from other countries such as Switzerland, the Netherlands and Belgium.

What is also clear is that talk of “Slippery Slopes” is not appropriate in a serious discussion of how to introduce legislation which is both compassionate, in allowing people the options they want to avoid suffering at the end of life; and safe, in its protection of vulnerable people.

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Should a right-to-die extend to those with psychiatric conditions?

The BBC report the suicide and background of Canadian Adam Maier-Clayton who took his life in April 2017, aged 27, following a history of psychiatric illness including a condition that left him in extreme pain. The video which forms part of the report shows Adam and his parents clearly explaining their point of view, together with some opposing opinions.

Adam’s illness was diagnosed as Somatic Symptom Disorder, “a psychiatric condition characterised by physical complaints that aren’t faked but can’t always be traced to a known medical illness”. Adam experienced “crippling physical pain throughout his body” which he described as like being “burned with acid”.

Adam believed his condition to be incurable, following years of trying different treatments. He wanted to have a medically assisted death, but although right-to-die legislation was introduced in Canada in 2016, this only covers cases where death is “reasonably foreseeable”, so excludes people like Adam’s.

A young person taking their own life, perhaps especially when done so for psychiatric reasons, seems far more tragic to most of us than when someone chooses a medically assisted death after living a reasonably long life, which they now feel is complete, due to worsening and incurable physical illness. One of the difficulties, with cases such as Adam, is that it is unclear whether the patient will recover. A younger person can generally be expected to live longer to “see what happens”. Doctors naturally want to play safe, pursuing all possibilities of the patient returning to an acceptable quality of life. That is the argument given by critics of Adam’s choice in the BBC article. However what the article fails to clarify is what the evidence is.

We hear much of “evidence-based medicine”, but where is the evidence in cases such as this? For example:

What proportion of people with similar conditions to Adam eventually regain an acceptable quality of life (either by recovering or by learning to cope with their symptoms)?

How long, on average, does it take for them to regain acceptable quality of life? What are the longest and shortest periods one could reasonably expect?

How bad can the symptoms of people in similar situations get? For example, might Adam, had he decided to stay alive longer in the hope that his condition would improve, run the risk of losing the mental or physical ability to end his life if he later decided that his life was intolerable? … or might he run the risk of being sectioned, “for his own protection”, such that he lost his freedom to take his life if he wished? …and if so, for how long?

If psychiatry is unable to give honest and informed answers to questions like these, “evidence-based medicine” is impossible. Doctors presumably should then admit that they don’t know, and should accept that their opinions are little better than those of the patient and his family.  This is particularly important in cases like Adam’s which have proven themselves resistant to all treatments which might have helped. Surgeons and physicians generally accept the decisions of patients who decide against very demanding or unpleasant treatments, particularly if the chance of improvement is low or the extra life expectancy would be small. In a similar way we need to appreciate the limits of what psychiatry is able to achieve, despite is best efforts, and the incurable suffering some patients have to endure as a consequence.

If, on the other hand, the questions above can be answered to some extent, then the patient, with the help of their doctors, has the potential of reaching an informed and carefully considered choice. They can weigh up the chances of returning to an acceptable life, against the experienced pain and difficulty of the current and anticipated condition and the risk that they may never recover. Not an easy decision for anyone. Something that needs time and careful discussion with all involved. What is striking in Adam’s case is that both his parents seem strongly supportive of his decision and believe he should have had the option of a medically assisted death. This suggests that Adam’s decision was based on careful weighing up of the best available evidence.

Some may not agree with Adam’s decision. But in what way do they, as bystanders who don’t have to experience Adam’s condition, have a right to insist that he suffers in a way he finds intolerable for some indeterminate (and presumably long) period of time – possibly for the rest of his life? Does Adam’s situation differ significantly from Omid’s in this respect? (Omid suffers from an incurable physical condition that is not terminal, but reduces his quality of life permanently below the level he can accept.)

Medically assisted suicide is obviously a very last resort, particularly in psychiatric illness. This is reflected in Belgium and Holland where although it is legal, a very small proportion of the total assisted deaths occur in psychiatric cases. However, allowing patients the chance to at least discuss a medically assisted death as one of their options quite often means that they decide not to take it up or postpone it and perhaps try different treatments. The alternative to not being able to discuss it as a possible option can be some extremely distressing and sometimes botched DIY suicides that are much more traumatic for the patient and distressing for the family, than an assisted death.

Further discussion on assisted dying in psychiatric cases can be found in our article regarding depression (particularly the final sections). An interesting discussion of mental illness and assisted dying by a Canadian bio-ethicist is available here. An academic book of papers, mostly by (US) psychiatrists dealing with rational suicide in the elderly is reviewed in detail here. Although it focuses on the elderly, many of the issues are relevant to cases like this, particularly those relating to what steps should be taken by psychiatrists to prevent someone ending their life.

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A Good (Assisted) Death in Canada

Canada legalised a limited form of assisted dying in 2016. A long article in the New York Times gives a detailed and inspiring account of John Shields who died by lethal injection in British Columbia. He suffered from an incurable condition, amyloidosis, which gave him increasing pain that he no longer wished to endure.

The article contains a video, (about two thirds of the way through), of a goodbye party which Mr Shields held for his friends and family. There is much laughter and emotion. Mr Shields seemed totally at ease with the fact that he would soon be dead.

Among many interesting aspects to the story is the fact that Mr Shields had been a Catholic priest at one stage in his life. Another is that in Canada, patients who are accepted for medical assistance to die have the choice between either taking a lethal medication themselves (assisted suicide), or for a doctor to give them a lethal injection, (euthanasia). Most patients prefer the latter. However, this puts additional responsibility on the doctor and some doctors find themselves unable to help their patients in this way. Dr Stefanie Green, who ended Mr Shields life by lethal injection, makes a significant contribution by explaining her reasoning, and why she doesn’t believe that offering lethal medication goes against medical training. The article quotes her saying “I think people go into medicine because they want to help people. … This is on the continuum of care of helping people.”

MDMD hopes that the example set by Mr Shields and Dr Green will inspire others to see how someone can have a dignified death in a safe and compassionate manner – what for them is a “good death“. Why should people in the UK be denied a death like this, if that is their wish, when the alternatives are, for them, far less acceptable?

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