The webinar came as UK parliamentarians are considering the practicalities of how the Bill on assisted dying for terminally ill people close to end of life should be implemented in England and Wales, if it becomes law. It featured some of the evidence presented to the public committee scrutinising the proposed legislation.
At the webinar, Professor Nancy Preston, a professor of palliative and end of life care, and Professor Suzanne Ost, a professor of law, from Lancaster University, presented their international research on assisted dying. They drew on findings from interviews with bereaved family members, and healthcare workers in countries where assisted dying is already available, highlighting the emotional impact on healthcare workers and the need for comprehensive support for patients and families. They also proposed a possible model of assisted dying for the UK that would sit outside of the healthcare service, a difference from the current Bill.
Setting out the complexity of the topic, Professor Preston highlighted the range of terminology used to describe hastened death, including euthanasia, assisted suicide, assisted dying, medical aid in dying and end of life choice act. The key difference in practice is between euthanasia and assisted suicide, with some evidence that euthanasia – where a professional ends the patient’s life on their behalf – is preferred by people and some societies to assisted suicide, where the patient is provided with the drugs to end their own life.
Speaking to healthcare workers in the Netherlands, Switzerland and some states in the USA where assisted dying is legal, the researchers found health professionals broadly in favour of supporting assisted dying, but often reluctant to perform it themselves. In part, this is because it is emotionally challenging and draining for healthcare workers. Others said they were worried about how they would be viewed by colleagues and patients.
I can discuss with the patient, with the team and agree it is the best option, but to take away the life in a moment and inject the medication that is something else… I'm not still ready for that
In interviews with bereaved family members in the US, UK and Switzerland, the researchers found that relatives often go through a complex emotional journey, including contemplation, seeking acceptance, and managing secrecy and sometimes disharmony in the family.
I had to deal with the emotional responses from all these people I didn’t really know very well. People had known [my mother] had been very ill, and some people wrote to say they felt that her choice was quite understandable. Others seemed very shocked and disappointed that they had not known about her plan before she died
In Switzerland, a country known for offering assisted dying, the researchers still found a lot of secrecy and little bereavement support for family members.
[In Switzerland] some family members were never told. Just ‘Grandma died’, not that ‘Grandma died of an assisted death’. There was a lot of secrecy still after the death, which puts a burden potentially on the family
Building on this research, and studies of other assisted dying models around the world, Professor Ost addressed practical issues in the current Bill and some of the challenges around implementing it. She explained that the researchers propose a model for assisted dying that would sit outside the healthcare system in the UK – a key difference from the current Bill, where the model sits within the NHS and will be funded by the state.
On the face of it, a fully state-funded service might promote equality of access for those seeking an assisted death, but it might also send the wrong symbolic message. There’s also the serious challenge of additional costs to an already struggling NHS and finding enough willing medical practitioners
In line with the BMA, the researchers propose an official body outside the NHS, such as an assisted dying panel or agency, that provides objective and accurate information to patients about the range of options open to them. The researchers also proposed a prospective and retrospective review of individual cases from a diverse multidisciplinary panel including healthcare, legal and ethical experts. Professor Ost said this would prevent loss of trust in medical professionals and better protect vulnerable individuals. The model would include bereavement support for families.
After the presentations, there was a Q&A session, with questions relating to issues of equity of access and decision making, including how to ensure patients have mental capacity to make an informed decision and to prevent and protect patients from coercion.
This webinar was hosted by the NIHR ARC Palliative and End of Life Care National Leadership forum as part of a series exploring topical issues in palliative care research.
The next webinar is on 14 April 2025 (11am-12pm) and is on the NIHR Palliative and End of Life Care Incubator, a new initiative to increase research capacity to drive improvements in care for patients. Speakers are Professor Candy McCabe, Professor of Clinical Research and Practice at University of West of England, Bristol and Head of Education and Research, Dorothy House Hospice Care, Bath, and Professor Christina Faull, recently retired Consultant in Palliative Medicine, Leicester.
Professor Suzanne Ost is in the Law School at Lancaster University. Suzanne was Expert Adviser to the Jersey Citizens’ Jury on Assisted Dying in 2021 and the Nuffield Council’s Citizens’ Jury on Assisted Dying in the UK in 2024. She has written extensively on assisted dying, including on a demedicalised model, and her assisted dying research has been AHRC funded.
Professor Nancy Preston is Professor of the International Observatory on End of Life Care in the Faculty of Health and Medicine at Lancaster University. Nancy is a world leading researcher on the impact of assisted dying on families and healthcare workers through her international research. She gave evidence to both the Health and Social Care Committees on assisted dying for the British and Irish Governments and is an adviser for the Nuffield Council.