Assisted dying is a highly complex, sensitive and ethically charged topic. Many jurisdictions worldwide do not permit it, but there has been an increasing number considering or passing legislation to change this in recent years. Currently, the UK does not permit assisted dying, but both political and public conversations around that fact are intensifying.
Back in 2015, Westminster debated this topic, with 118 MPs voting for and 300 against; but last year, Labour MP Kim Leadbeater’s terminally ill adults (end of life) bill passed with a majority of 55. It will now enter committee stage, offering us a chance to talk about death and dying in an open and informed way. We must seize this opportunity, and we must ensure the public’s voice is central – which is why I must highlight how disappointing it was to see the debate’s lack of reference to the credible deliberative evidence available. For an issue that cuts so deeply into the fabric of personal and societal values, this absence is notable.
The evidence we have to understand what the public think and feel about assisted dying has stagnated. By this, I mean it has largely been limited to polling and survey methodology, which, although useful as an indicator of public opinion, cannot offer a reflection of informed public judgement. And it had primarily been collected by those with an interest, i.e. campaign organisations, which raises questions about the impartiality of the data.
Through our conversations with UK policymakers and legislative decision-makers, it became clear to us that there was a vital need for robust, independently gathered insights into not only what the public think about assisted dying, but why they think it. This is why we decided to commission England’s first citizens’ jury on the topic.
Since October 2023, we have been working with Hopkins Van Mil, M.E.L Research and the Sortition Foundation to design, facilitate and organise this project. The Nuffield Council on Bioethics is not seeking to form an organisational position on assisted dying – we see ourselves as a broker, there to unpack the associated social, ethical and practical considerations that underpin people’s views.
A citizens’ jury is similar to a legal jury in that it brings together a representative group of people and provides them with the information they need to discuss and reach a conclusion together. The main difference is that a citizens’ jury goes one step further by seeking to ensure the group reflects the chosen population’s demographic makeup and attitudes. So, in the case of our assisted-dying jury, we needed to ensure that the mix of people selected to enter deliberations represented the average spread of attitudes people living in England have about assisted dying.
Critics of citizens’ juries often suggest attitudinal inclusion is a weakness, claiming that it weights the likely outcome, or stacks the deck unfairly. That is not the case, and this is an important point to make – citizens’ juries include attitudinal data because in doing so, they provide a more accurate representation of the population being governed.
Bringing 30+ people who had no opinion on assisted dying together and asking them to form a view would be interesting, but it would not be a citizens’ jury and it would not tell policy and decision-makers what a representative group of the English population thinks. It is also worth highlighting that people entering the jury process with an assumed view may leave thinking and feeling something else; opinions can change and, indeed, we saw this happen in our project.
Using a process called sortition, we recruited 34 people living across England to become jury members and answer these questions: should the law in England be changed to permit assisted dying? What are your reasons for or against? If the law does change, what should the service look like? If it doesn’t change, are there any other changes you would like to see?
Together, the jury members entered an intense, eight-week deliberative process where they were given a wide range of materials to increase their understanding and awareness of assisted dying. These materials had been carefully curated by our independent advisory board and content group to ensure they were balanced, comprehensive and accurate.
In September, we published a verbatim account from the jury – showing that the 28 members who participated in the final votes had concluded with a majority in favour of legalising assisted dying in England for adults with a terminal illness and the capacity to choose. This data release received extensive media interest, with an estimated 2.6 billion people reached by the news coverage. MPs and peers were sent a briefing pack of the data and invited to request a meeting with us, should they have any questions.
Shortly after we published our findings, we ran a national survey that used insights gathered through the jury process to design several assisted-dying scenarios. These explored concepts such as terminal diagnosis and non-England residents accessing an assisted-dying service in this country. We immersed 2,000 people in England in these scenarios and then asked their view.
In 2024, we published the result of this survey and a further summary analysis of why the jury concluded as it did. These insights showed that the majority of the public want assisted dying to be legalised in England and that the most favoured eligibility criteria would be adults with a terminal diagnosis of six months. There was less support for a 12-month diagnosis and lesser still for the inclusion of intolerable suffering, through fear that it would make the service too easy to access.
Our data also showed ensuring safeguards was of utmost importance. The public want to see safeguards that are strong enough to protect vulnerable people from pressure or coercion, and medical professionals from action by those who oppose assisted dying. Indeed, it was confidence in the possibility of achieving adequate safeguards that, after religious beliefs, was the second-biggest influencer of whether someone was in favour or against legalisation.
Two areas where we exposed a lack of public consensus is whether under-18s or people who are not residents of England should be able to access an assisted-dying service. Strong opinions were felt on either side, with some believing under-18s with a terminal illness and parental support should be eligible; but others thinking the establishment of informed consent in children would be too difficult and parents should not be put in that situation. With regards to residency, some felt people should be living in England to gain access, but others could see a financial benefit to the NHS if non-residents were able to use it.
This independently gathered evidence provides the trustworthy and rich intel decision-makers will need if they are charged with shaping new legislation and guidance. But throughout our engagement, it has become clear that there is still some work to do in raising awareness of deliberative democracy, such as citizens’ juries, and the positive impact of embedding such methods into policy development.
At the NCOB, we are working to put ethics at the centre of decision-making through projects such as this one, which gather the evidence so sorely needed. We are also producing tools and frameworks to assist civil servants and policymakers in how they can utilise ethical insights in a timely way.
Our door is always open to any civil servant, policymaker or governance decision-maker who wants or needs information about the ethical implications of innovation. In a world where trade-offs are inevitable, ethical insight can help to promote fairness and equity, for the benefit of us all.
Danielle Hamm is director of the Nuffield Council on Bioethics