Today (13th May 2025), the 129 members of the Scottish Parliament vote on whether the Assisted Dying for Terminally Ill Adults (Scotland) bill passes to stage 2 and makes its way towards becoming an Act of Parliament. It is 10 years since Scottish politicians voted on the issue and the international picture has changed considerably in that time with a number of other European and Anglophone jurisdictions passing assisted dying legislation.
The Glasgow End of Life Studies Group has a public event on Wednesday evening (14th May 2025) where we will discuss the international picture with a guest speaker from the Nuffield Trust, as well as hearing about the findings from the Nuffield Council on Bioethics’ citizens’ juries. Please consider attending this one hour event either in person or online (see Eventbrite link at the end of the post for details and sign up).
For the remainder of this blog, I identify 5 considerations for MSPs voting on this issue today. These are also important for the general public to keep in mind when they are being presented with lots of media stories, campaign literature, and opinion articles on this issue.
- A new response to the problem of dying in the 21st Century
Assisted dying will change how people think about, discuss and plan for dying now and in the future. It is a fundamental societal change. Even though a small number of people will request and gain access to the new procedure (less than 1% of all deaths for jurisdictions with equivalent bills) many more people may discuss it as an option amongst family and friends in the period leading up to their death. If legalized, it will become part of a choice landscape around dying whereby those who want to can exercise agency over how and when their death occurs.
But it is important to recognize that even without legalising assisted dying, dying in Scotland is changing. It takes far longer to die than ever before in human history. Dying is protracted and happens over many months and even years. In other words, people are living longer in a terminal state – in poor and declining health, and with declining quality of life and increasing symptom burden. Some people who experience this may want to bring an end to this period of time sooner and will request medical assistance to do so.
2. Requests for assisted dying are not about deficits in palliative care
In the debate around the proposed bill, there has been much discussion about how funding for palliative and end of life care needs to increase, and be more fairly distributed, before any assisted dying legislation should be considered. This implies that assisted dying requests are due to a lack of palliative care or an insufficient quality of palliative care.
This is to misunderstand two things. First, that people who request assisted dying have not been offered or received palliative care. In fact, we can see from jurisdictions that have legalized this is not the case. Research into jurisdictions that had legalized before 2016 showed that 74%–88% of persons who opted for assisted dying also received hospice or palliative care services. In Canada, which legalised assisted dying in 2016, the most recent government data suggests 77.6% of people who opted for assisted dying had received palliative care. Of those who didn’t receive it, 87.5% were reported to have had access to palliative care services (the implication being that they had declined them). There are similarly high rates in Australia. A recent 5 year government review of the Victoria state legislation (the longest running legislation in Australia) found that 88% of rural and regional applicants and 83% of metropolitan applicants were accessing palliative care. This international picture indicates that assisted dying is in most cases not requested due to an inability to access palliative care nor even as an alternative to palliative care but rather is a separate consideration.
The second point to highlight in relation to the ‘deficits in palliative care’ argument is what we know about the types of people who request assisted dying and their motivations for doing so. Existing international evidence can answer this question for us. These people are motivated by a desire to leave this world in control and maintaining their independence to the last, something which palliative care cannot guarantee them. A request for assisted dying is rarely an impulsive reaction to end of life suffering but rather people may have thought about this option for some time, and in many cases the idea was embedded in their philosophy of life. Again, this is not a perspective which will change upon receiving more palliative care.
The UK certainly needs more investment in palliative and end of life care, and to rethink how it cares for people who are dying. But it is important to recognise that additional investment in, or reconfiguring of, palliative care services will not stop requests for assisted dying.
3. Requests for assisted dying are not all a response to intolerable physical suffering
Assisted dying proponents would have us believe that requests for assisted dying are about unrelieved physical pain – people “dying in uncontrollable agony” ( to quote Peter Prinsley MP) and experiencing “misery, torture and degradation” on the deathbed (to quote Kit Malthouse MP).
While there are undoubtedly some symptoms which are hard to fully palliate at the end of life, to imagine that it is only these people who will make use of the law or that these people will even gain access to the law is to misunderstand 1) how the law will operate and 2) what we know from the evidence about people’s motivations for accessing assisted dying.
First, according to the proposed bill, accessing assisted dying would require passing through a number of checks and balances and paperwork, then a 14 day wait period between requests, then arranging for a time and place to consume the drugs. All-in-all it would take a number of weeks from first considering applying to the administration of the life-ending drugs.
If we are to believe proponents that assisted dying is necessary to stop people dying ‘in agony’ then this is not going to bring quick relief for these people and the chances are that they will die or be rendered unconscious (through palliative medications) before they can make use of the law. We see this happening in jurisdictions which have assisted dying laws. As a consequence, in a number of jurisdictions, questions have been raised over the length of the wait period. Indeed, California amended their law so that if the patient is not anticipated to survive the 15 day wait period, their request can be accelerated to 48 hours.
The second point to make is that there is considerable international evidence about why it is that people want assisted dying. This data reveals that, in the main, it is not because of unrelieved severe physical pain. End-of-life suffering is more often multi-dimensional (what Cicely Saunders called ‘total pain) encompassing distressing physical symptoms, yes, but also social, psychological and existential dimensions. It is also experienced by individuals who attribute meaning to it in unique ways – what Eric Cassell called ‘the personalization of pain’. In other words, the end-of-life suffering which gives rise to a person’s assisted dying request stems from bio-psycho-social factors which are refracted through a person’s unique biography, life experiences and personal identity.
For both of the reasons above, assisted dying should not be understood as being an answer to ‘agony’ or ‘torture’ on the deathbed.
4. There will be significant implementation challenges
If assisted dying legislation is passed in Scotland, the evidence from other jurisdictions around the world suggests there will be significant implementation challenges. Most immediately this will involve the setting up of the new service, governance, training and regulatory bodies, along with awareness-raising initiatives.
But the real challenges will be around the following:
- Finding doctors willing to deliver this. This is a well-evidenced barrier to access in jurisdictions that have legalised.
- Whether or not hospices will be willing to offer this. If they are not, individuals will need to be discharged home to receive and consume the medication, or they will be moved to another hospice or hospital which provides an assisted dying service.
The Nuffield Trust has just published a comprehensive review of the arrangements in 15 jurisdictions across 9 countries where a policy for assisted dying has been implemented. I advise any member of parliament who will be voting on this issue to read this up-to-date report to get a sense of the ‘diverging paths’ assisted dying laws have taken around the world and how the devil really is in the detail.
5. Assisted dying is not the panacea for all the problems of dying in the 21st Century
The high-profile nature of this increasingly acrimonious assisted dying debate means that it is given far more airtime, screen time, and debate time than is warranted if we look at the numbers likely to make use of any bill (in Scotland likely less than 1% of all deaths given it is just for terminal illness and requires self-administration). However, as I said in (1) assisted dying’s discursive effects on end-of-life conversations will be greater than its effects in terms of actual deaths via that method.
Proponents and opponents say that they share a desire to increase death literacy for all in the general population and perhaps the assisted dying debate is a chance for public discussion. But it also perhaps gives a false impression of who is dying in Scotland now and in the future.
The majority of people in Scotland are dying with complex symptoms of frailty, multi-morbidity and cognitive decline. Assisted dying is not an answer to dying with dementia and cognitive impairment and this is the type of death which is growing at the fastest rate. 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 and defer end-of-life decisions to others. In both cases, assisted dying is not going to provide an answer.
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.
_______________________________________________________________
Scotland’s Proposal for Assisted Dying for the Terminally Ill
Join this expert panel discussion about the rhetoric and realities of assisted dying.
Wednesday 14th May 2025 – in person at the University of Glasgow or online.
Chair: Professor Graeme Roy, Dean of External Engagement and Deputy Head of College of Social Sciences and Assistant VP, University of Glasgow
Panelists:
Dr Naomi Richards is Director of the End of Life Studies Group at the University of Glasgow and has researched assisted dying on and off for 20 years. She is a Senior Lecturer and is a social anthropologist by training. She teaches on the University of Glasgow’s End of Life Studies Programme (Micro-credential/PGCert/PGDip/MSc) which includes an 11-week dedicated course called Assisted Dying: Rhetorics and Reality which can be taken as a standalone CPD course.
Anne Kerr is Professor of Science and Technology Studies and Head of the School of Social and Political Sciences at the University of Glasgow. Her research on the social and ethical context of science and medicine has focused on professional and public engagement on topics ranging from cancer, genetics, assisted conception to regenerative medicine. She in a Fellow of the Academy of Social Sciences and a member of the Nuffield Council on Bioethics and chaired NCoB Advisory Board on public views on assisted dying in England.
Sarah Reed is a Senior Research and Policy Fellow at the Nuffield Trust. Her research interests include international health and social care systems, integrated care, health inequalities, clinical commissioning, and NHS reform. She is currently involved with the Nuffield Trust’s review of the international evidence base on assisted dying implementation.