Assisted Dying in Scotland: As a New Parliamentary Bill is Launched, Time to Bust 5 Myths

The proposed Assisted Dying for Terminally Ill Adults [Scotland] Bill launched on Thursday 28^th March 2024. The Bill proposes allowing terminally ill people over the age of 16 the right to request lethal medication from a doctor which they would self-administer to bring an immediate end to their own life at a time and place of their choosing. As an intense public, media, and parliamentary debate ensues in Scotland over the next year leading up to a parliamentary vote on the issue, I want to bust some key myths which have been circulating in this highly polarised and contentious debate.

To be clear, these myths are propagated by both proponents and opponents in the debate, some intentionally, others maybe not. While we still don’t know about some of the long-term generational effects of assisted dying, there are many things we do know about and that we can say with confidence, particularly about short-term effects. In a bid to move away from some of the propaganda which circulates on both sides of this emotive debate, lets unpack 5 recurring myths with the aim of shedding more light than heat on this complicated issue.

*MYTH 1 – There is a slippery slope from terminal illness to non-terminal illness

There are those opposed to assisted dying who say that the Scottish proposal to permit assisted dying for the terminally ill is ‘just a first step’ towards more liberal laws whereby life ending drugs will be lawfully prescribed to people with serious but not terminal health conditions, including psychiatric conditions. 

The House of Commons Select Committee Report (2024), for which I acted as a witness last year, is categorical in its statement that:

‘jurisdictions which have introduced assisted dying/assisted suicide on the basis of terminal illness have not changed the law to include eligibility on the basis of “unbearable suffering”’ [Section 142; p53; my emphasis]. 

To put it succinctly, there is no evidence from any of the jurisdictions which have legalised assisted dying for the terminally ill that their law has been extended to allow assisted dying for the non-terminally ill. Canada is now often cast by opponents of assisted dying as evidencing just such a slippery slope. However, while it is true to state that the eligibility criteria have been changed in Canada (from terminal to non-terminal), this was on the grounds of bringing government policy more in line with the original Supreme Court ruling (Carter v Canada) from 2016. In other words, the basis on which assisted dying was legalised in Canada has not altered.  

The framing device of a slippery slope is one of the most persistent and widely circulated myths in the debate in the UK and elsewhere. Indeed, in the UK in the last couple of weeks I have identified this blurring of terminal and non-terminal cases in Liz Carr’s BBC documentary Better off Dead, and in the House of Commons debate on assisted dying on 29 April 2024:  

“It starts with, say, the people who cannot afford to go to Dignitas and expands to those who are depressed” [Sir Peter Bottomley, Conservative MP]

Given that survey data suggests the UK public is less supportive of assisted dying for cases of non-terminal illness than it is of terminal illness, you can see why it is in the interests of those opposed to legalisation of any form to cast as ‘inevitable’ the expansion of any law, despite evidence to the contrary.

*MYTH 2 – Assisted dying is no different to other lawful life-ending scenarios

Proponents of assisted dying are sometimes liable to conflate assisted dying with other life-ending scenarios – the withdrawal or withholding of life-sustaining treatment or terminal palliative sedation, for example – in order (in my view) to make it appear as if assisted dying does not represent a significant break with current practices and norms; to make it seem less of a challenge to the status quo. This framing of assisted dying as something which is ‘already happening’ is a technique which was used to great effect in the Carter v Canada case which led to the legalisation of assisted dying in Canada. 

However, there is a material distinction between assisted dying and other life-ending scenarios. While assisted dying involves either the injection or swallowing of a lethal drug at a person’s explicit request causing almost immediate death, other life-ending scenarios are different. They rely on either nature taking its course, and/or a lack of active, conscious involvement from the patient, and/or on death taking a longer time to occur than the immediate death which the lethal medication used in assisted dying brings about. In our study on the distinctions between assisted dying and palliative care, for example, it was clear that they were perceived as distinct whether because of the physician’s intentions, time to death, the choice and preferences of the patient, or the experiences of family.

These are important distinctions and make assisted dying a new and unique phenomenon, particularly, I would argue, with regard to the timing and the immediacy of death. While some assisted dying practitioners may perceive continuity with their existing fields of practice (palliative sedation for example), and while it might be in the interests of campaigners to emphasise a continuum of end-of-life medical interventions and to play down the idea of a radical departure from existing practice, the core distinct elements of the new phenomenon which is assisted dying need to be openly acknowledged. This is not end-of-life decision-making and dying as we currently know it.  

*MYTH 3 – People with dementia will get access to assisted dying

Earlier this year (2024) I facilitated a series of workshops for Hospice UK, and in each workshop the issue of assisted dying for people with dementia came up. This didn’t surprise me as I hear this a lot in the many conversations I have with members of the public about assisted dying. Dementia is one of the leading causes of death in economically advanced countries and will continue to be so in the future. Survey evidence also suggests it is also more feared by people over 65 years old than cancer.

However, assisted dying is not currently an answer to the question of how to die well with dementia and nor is it likely to be an answer in the future. Currently, in the small number of jurisdictions where assisted dying is legalised for reasons of ‘unbearable suffering’ rather than terminal illness, and where people with dementia could officially (as per the legislation) be eligible, tiny numbers of those people access the law. In the Netherlands in 2022 for example, just 3.3% (n=288) of assisted deaths were for people with dementia. The main reason for this is the fact that the disease affects a person’s mental capacity to request an assisted death. This means that discussions linking assisted dying with dementia are somewhat of a red herring and take up far more airtime in the debate than it ever takes up in reality. The airtime devoted to this should be read as an expression of the cultural fears which exist around dementia, rather than being a key consideration in whether or not to legalise assisted dying.

*MYTH 4 – Palliative care will not be affected by assisted dying

It is a myth, sometimes perpetuated by both sides in the debate for different reasons, that assisted dying and palliative care can be kept entirely separate post-legalisation. While research conducted by our End of Life Studies Group showed that the relationship between palliative care and assisted dying in jurisdictions where it is lawful is varied and contested, they are still in a relationship with each other and influence each other. The palliative care workforce will inevitably encounter a significant proportion of the assisted dying requests in Scotland should the current Bill be passed. Emanuel and colleagues’ 2016 research showed that in Canada, the US and some European countries, 74-88% of people who choose assisted dying also receive hospice or palliative care services.

While associations representing palliative care doctors have generally taken an oppositional stance to legalising assisted dying, it should be recognised that there are a variety of views held within the palliative care workforce in Scotland. My myth busting point here is not that palliative care owns death or can exercise any veto over the passing of legislation, but rather that evidence from other places indicates that many patients trying to access assisted dying are in receipt of palliative care or are receiving treatment in hospices and so will be making their requests to that workforce. The implications for the palliative care workforce in particular therefore need to be acknowledged.

*MYTH 5 – Assisted dying is the panacea for all the problems of dying in the 21st Century

The number of people dying in the UK and in other economically advanced countries is on the rise. The question of how, as a society, we are caring for all of these people in a way which prevents them and their loved one’s distress and supports their wellbeing until death is one which needs societal-wide consideration. 

Many of those who are dying now, and who will be dying in the future, will be dying with complex symptoms of frailty, multi-morbidity and cognitive decline. As already discussed, assisted dying is not an answer to dying with dementia and cognitive impairment. Moreover, and to point out the obvious, most people will not choose to make use of any assisted death legislation, preferring to live on until natural death. In both cases, assisted dying is not going to provide an answer.

In short, assisted dying will simply never be the answer to all of the distressing situations which present themselves at end of life. Political, media and public pre-occupation with the issue somewhat belies this fact. The assisted dying debate takes up a lot of the discourse around dying, giving the impression that it is a more significant end of life intervention than others which don’t accrue such attention but which actually might benefit more people e.g. community initiatives and funding to support and enable dying at home.

UK palliative care charities are using the assisted dying debate and the media coverage generated as a way of smuggling stories about palliative care provision or funding challenges into the press. In other words, they are piggy backing conversations about palliative and end of life care which are not as headline grabbing onto conversations about assisted dying which are. This is one way to broaden out the debate, albeit with an agenda to fund more palliative care.

But more reckoning with the reality of contemporary dying is needed across the board and we need to question the sheer volume of rhetoric and expanding discourse which surrounds assisted dying. Assisted dying is not the panacea for all the problems of dying and will only ever be just one end of life intervention among many.