Blog6th December 2024

Assisted dying bill – why public deliberation must be considered 

Molly Gray

This year we ran England’s first Citizens’ Jury exploring public views on assisted dying. Here’s how our work can help to inform next stages of the UK assisted dying bill.

Assisted dying

On 29 November, UK Parliament turned its attention to the sensitive and complex ethical issue of assisted dying as they debated The Terminally Ill Adults (End of Life) Bill. As MPs shared their personal perspectives and reflections, there was one glaring omission: a 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 felt notable. 

The debate so far 

The debate touched upon familiar but important themes: the sanctity of life, individual autonomy, the potential for coercion and abuse, and the slippery slope concerns that arise when considering a legal framework for assisted dying. Some MPs shared powerful individual stories to underline the urgent need for reform. In contrast, others expressed fears about the potential impact on palliative and end-of-life care. 

However, the debate lacked reference to the evidence available on public views, which was surprising. Recent surveys, such as the two we conducted and another by King’s College London, indicate a majority are in favour of legalising assisted dying. And these insights have been further bolstered and enriched by our commission of England’s first Citizens’ Jury on assisted dying, which has enabled a deliberative exploration of public attitudes, unpacking the complexities of this issue beyond a binary “yes” or “no”.  

Why public deliberation matters 

The assisted dying debate often involves reconciling deeply held and often differing values: the right to autonomy, the duty to protect vulnerable individuals, and peoples’ understanding of what it means to live and die with dignity. Understanding the public perspectives on such a complex topic requires more than what opinion polls can often offer. It lends itself to a process where individuals can grapple with the ethical dilemmas, hear diverse perspectives and information, and consider with others through informed dialogue. 

This is where deliberative processes like Citizens’ Juries and Assemblies become invaluable, and is why we commissioned Hopkins Van Mil to run a Citizens’ Jury on assisted dying with 30 members of the public who together, broadly represent the population of England. Over an 8-week process, our partners brought this group together, provided them with balanced information and evidence, and facilitated in-depth discussions. This process revealed not only what people think but also why they think it, and how their views might change when faced with the complexities of the issue. At the end of their time together, the Jury put forward a set of well-informed recommendations. This included that the law should be changed to permit assisted dying in England for those with the capacity to make a decision and restricted to adults with terminal illness.  

However, the Jury went beyond simply voting for or against. They explored the trade-offs and nuances of the topic. As witnessed throughout the debate, the Assisted Dying Bill has brought the current state of palliative and end-of-life care into focus. This echoed what the Citizens’ Jury also highlighted as they called for a commitment to improve end-of-life care, even if the law does not change to permit assisted dying. They recommended more evenly distributed funding from the Government to ensure that NHS palliative care provision is equitable and of a high standard. 

The Jury also recommended further public conversations around assisted dying and death more generally. This indicates the readiness from the public to engage with knotty topics and could strengthen trust between policymakers and the public. One Jury member said:  

For me this, this Jury is the start of a conversation. You’d expect people to have enough research, statistics, like we are. Shouldn’t more people, from all parts of society be given the option to discuss this? Wouldn’t that be valuable?“

Although Jury members held differing positions on the topic, they came together to find collective solutions, describing how empowering and inclusive the process was. Another Jury member stated: 

Hearing the values, the ideas, the ideologies that people as individuals have, and hearing their thoughts and opinions, merging those together to come to some kind of conclusion has been very, very special.”

The path forward 

So, what happens next, now that the Bill has passed its second reading and entered Committee stage? Politicians have the opportunity to reflect on the findings of this Citizens’ Jury, gaining valuable insights into the public’s current values. It could also help MPs navigate the tensions between respecting individual rights and protecting societal values. Most importantly, it would ensure that any eventual legislation is not only informed by medical, legal, and ethical expertise but also rooted in the considered judgements of the public.  

It’s great to see legislators, like Liam McArthur MSP, already taking note of the Jury, and as the debate continues, I hope more MPs and the Committee will also recognise the value of engaging the public more meaningfully and inclusively through the Citizens’ Jury. The lack of reference to this evidence during the 29 November debate was a missed opportunity, but it need not be a permanent one. The NCOB and others, such as Involve’s Citizens’ Jury in Jersey into assisted dying, have provided a roadmap for how this can be done – let’s hope politicians take note. 

In the end, assisted dying is not just a question of law or ethics; it’s a question of how we, as a society, confront one of life’s most profound moments. Ensuring the public has a voice in that process is not just valuable – it’s essential.