Evidence must be applied to the assisted dying debate with the same rigour it is with other policy decisions, write Katherine E Sleeman and Gareth S Owen
The assisted dying debate is once again coming to the fore in the UK. The debate remains highly polarised, with supporters of legalisation arguing in favour of autonomy and individual freedom, and opponents arguing that assisted dying could harm vulnerable members of society.
The importance of using high quality evidence to inform legislative change is well recognised. We argue that there are evidence gaps to fill and that we must prioritise research.
Public understanding about “assisted dying”
The case for legalisation is largely driven by polls that show around 80% of the UK public support assisted dying. However, similar polls from elsewhere have revealed poor understanding of what assisted dying legislation encompasses. A 2017 New Zealand survey found that 66% of those polled thought assisted dying includes turning off life support, 51% thought it includes stopping medical treatment, and 59% thought it includes do not attempt cardiopulmonary resuscitation (DNACPR) requests. The people who most strongly supported assisted dying were more likely to think it included legal end-of-life practices. Given the emphasis placed on public opinion polls by campaigning organisations, understanding whether similar misconceptions exist among the UK public is essential.
Public views about legalisation of assisted dying are known to be significantly affected by their awareness of the relevant complexities. Opinion surveys that do not capture this complexity may not accurately reflect public attitudes. Deliberative democracy methods that allow in depth exploration of potential trade-offs between individual freedom and societal safety could examine more complex scenarios, deepening our understanding of public opinion to help guide any legislative change.
It is frequently asserted that data from jurisdictions where assisted dying is legal identify no evidence of harm. However, much of these data come from simple reports filled out after the patient’s death by the doctor who supplied the lethal prescription, with no mechanism for independent verification or prospective data collection. In Belgium it has been estimated that half of all assisted deaths are unreported.
Consent (which is composed of mental capacity, non-coercion, and relevant information) is an important safeguard proposed to prevent harm and ensure choice. But clinical reality does not always align with neat boundaries, and it is in the grey areas that potential harms or infringements on choice will exist. Mental capacity is rightly discussed, but capacity can be affected by illness, medication, depression, and cognitive impairment in ways we are still learning about. For example, depression is associated with a desire for hastened death in people with terminal illnesses, but the strength of this desire can change over time. Evidence from Oregon found that doctors’ personal values (whether they consider suicide ethically acceptable or not) are likely to influence their assessment of whether a patient has capacity to request assisted suicide. Important questions about the effectiveness of consent as a safeguard remain unanswered.
Medical versus social models
In most jurisdictions where assisted suicide or euthanasia is legal, it is embedded within medical practice. However, questions remain about what exactly the role of the doctor should be. In the jurisdiction where assisted suicide is oldest (Switzerland) doctors do not take a leading role and the practice is embedded in assisted dying societies. A 2020 survey of doctors by the British Medical Association found that 37% of respondents supported a change in the law to permit doctors to administer life ending drugs, and 26% said they would be willing to actively participate in the process. Those working in the specialties most familiar with care for people approaching the end of life (palliative medicine, geriatric medicine, clinical oncology) were among the most opposed. In depth research to understand the attitudes of UK doctors towards the relative merits of medical and social models of assisted dying is needed.
Legalisation may complicate the relationship between palliative care providers and patients, with recent data from Canada showing some patients now fear palliative care as they associate it with hastening death. The same study found that palliative care resources were disproportionately consumed by Medical Assistance in Dying (MAiD) requests, with consequences for non-MAiD patients. Understanding how assisted dying legislation might indirectly affect care for the general population of people near the end of life, and strategies to mitigate adverse impacts, must be a priority for research. This is particularly important given the existing shortfall in provision of palliative care in the UK, well described inequalities in access to palliative care, and future increases in needs.
Whether or not assisted dying becomes legal in the UK, good palliative care, provided across care settings, is essential. While there is increasing and strong evidence of the benefits of palliative care for people with terminal illnesses, the experiences of patients and families as they approach the end of life remain poorly understood. In addition, much more research is needed about the perspectives of patients and carers towards assisted dying. This is particularly important in areas of greatest clinical, legal, and ethical complexity, such as for people with dementia.
The UK has a deserved reputation for world leading care of the dying, both in terms of clinical care and research. The rigour with which we expect evidence to be applied to policy decisions is no less relevant in the case of assisted dying. We must prioritise research.
Katherine E Sleeman is the Laing Galazka chair in palliative care at the Cicely Saunders Institute, King’s College London, and an honorary consultant in palliative medicine at King’s College Hospital NHS Trust. Twitter @kesleeman
Gareth S Owen is reader in mental health, ethics, and law at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, and an honorary consultant psychiatrist at the South London Maudsley NHS Foundation Trust.
Competing interests: none declared.