The Nuffield Council on Bioethics is an independent research and policy centre that aims to put ethics at the centre of decision-making about bioscience and health so that we all benefit. We agree that public views should be central to the debate on assisted dying (Editorial, 29 April). This is why we commissioned England’s first citizens’ jury on assisted dying in 2024, which produced rich and independent evidence about what the English public think about assisted dying, and the ethical, social and practical considerations that underpin their views.
Over eight weeks, 30 jurors – who were reflective of the demographic makeup of the English population – spent a total of 24 hours hearing evidence from experts, engaging with perspectives from all sides of the debate, and deliberating in groups.
At the final vote, the jury concluded that the law should be changed to permit terminally ill adults, with capacity, to access an assisted death. The jury emphasised the need for safeguards to ensure legalised assisted dying would not be abused and to protect vulnerable people. They also expressed a strong view that deliberative public engagement on death, dying and end-of-life care should be ongoing.
Approaches such as citizens’ assemblies offer a valuable way to further enrich our understanding of diverse public perspectives as the debate evolves. However, with the possibility of another private member’s bill on assisted dying appearing after the king’s speech, it is vital that parliament engages with the substantial, independent evidence on public views that already exists, including from the our citizens’ jury.
Danielle Hamm
Director, Nuffield Council on Bioethics
We strongly support the idea of a citizens’ assembly on our relationship with death, only we would broaden it beyond the question of assisted dying. We co-chaired the Lancet Commission on the Value of Death, which concluded that we have an unbalanced, unhealthy relationship with death. Increasingly, death, dying and grieving are not seen as a family, community, cultural process but a medicalised event, increasing suffering, cost, carbon consumption and reinforcing the delusion that death is a problem to be fixed. Industrial societies like the UK have a diminishing capacity to deal with death.
Neither increased access to palliative care nor legislation for assisted dying will fix our broken relationship with death. Death takes place in complex social systems and we need to understand, debate and change those systems to rebalance our relationship with death. A citizens’ assembly, such as the one that has been held in France, would be an important step forward in that rebalancing.
Libby Sallnow and Richard Smith Co-chairs, Lancet Commission on the Value of Death
As a terminally ill woman, IÂ read your editorial with profound dismay. For those with the luxury of time, another forum for reflection may sound measured. For people like me, whose remaining time is measured in months, perhaps weeks, it sounds like yet another delay.
Terminally ill people have too often been marginalised in this debate – spoken about rather than listened to. Our suffering and our choices are treated as subjects for endless discussion while we endure the consequences of inaction. We do not need more deliberation. We need parliament to act.
Every month of delay means more dying people denied autonomy, more families traumatised and more people forced into desperate or lonely endings that they would never have chosen. Those calling for patience rarely bear the cost of it themselves. Parliament has debated this long enough. It must act now.
Dr Pamela Fisher
Skelmanthorpe, West Yorkshire
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