Every now and then, something happens in politics that makes a particular policy world tilt a little on its axis. Sometimes this is the result of changing attitudes or beliefs about a particular ethical issue; other times it’s an event or political decision with such huge ramifications that nothing is quite the same again.
Last week’s decision by MPs to vote in favour of a Bill to legalise assisted dying was one such moment. And as they did, the health and social care policy world tilted a little as the implications for people working in, and in receipt of, these two vital public services start to be debated.
The Nuffield Trust is neutral on the ethical question of assisted dying. That means we don’t advocate either in favour of, or against, this legislation. That’s not because we don’t care about the implications of it. We do, deeply. But our remit is to improve the quality of UK health and care through evidence-based policy analysis.
The ethics of this debate are a very personal matter of morality and belief - issues for people to weigh up themselves regardless of faith, background and political persuasion. Our staff, trustees and associates no doubt have differing views on this most profound of issues.
But when it comes to bringing evidence to discussions about how an assisted dying service interacts with the NHS and social care – and within them, palliative and end of life care services – we have plenty of insight to contribute.
We have a long-standing research programme, led by Dr Sarah Scobie, looking at quality in end of life care. Back in 2022 we conducted research in collaboration with Hospice UK to understand the impact of the Covid-19 pandemic on end of life care delivered in hospices, revealing a significant rise in 'hospice at home' contacts, which topped a million in 2020/21.
Earlier this year we revealed highly variable provision in end of life care, showing that more people in the most deprived areas died in hospital in the first year of the pandemic than those in the least deprived areas; and people from Asian, Black or mixed ethnic groups who die at home are less likely to be prescribed medicines to manage their symptoms. Before the current Bill was even drafted, we began work on two important pieces of analysis, which should inform policymakers as they deliberate the implications of assisted dying, and services as they begin the path to implementation, should it pass into law.
The first of these is a review looking at public expenditure at the end of life. In collaboration with end of life charity Marie Curie and the Health Economics Unit, we will contribute to new analysis of public expenditure on people in the last year of life in the four nations of the UK, updating a 10-year-old figure on how much is spent on end of life care in England. These insights will contribute to the upcoming spending review and will be valuable to wider discussions on end of life care.
The second, funded through our own endowment which affords us our independence and freedom to think, is looking at how legislation on assisted dying has had an impact on end of life care in other countries. While Canada and Switzerland are examples cited most often in deliberations about assisted dying, there are several countries where assisted dying is legal. This project, which will run throughout the first half of next year, will learn from these countries to understand how the legislation has been implemented in practice, and the impact this has had on health and social care services in each place.
The Bill raises a host of much wider practical policy questions which will need consideration if assisted dying is legalised: how much money will an assisted dying service cost? Who will provide it? How is it connected to non-NHS and means-tested or charitably funded services like home care and hospice care? What are the implications for education and training of doctors and nursing staff? How can we ensure we don’t simply layer on a new service without tackling underlying weaknesses in existing provision?
Our work and expertise alone won’t answer these significant questions. But we will offer insights and evidence to MPs as discussions unfold in parliament, both from emerging research - if we have findings to share - and from our wider knowledge and research on health and care systems in the UK.
This Bill provides a critical opportunity to debate and discuss how to improve palliative care, which is - like much in the NHS – at times brilliant, but frequently overstretched and all too often unable to reach the people who need it most. The NHS has shown itself to be resilient and creative in how it responds to events, providing abortion clinics in the 1970s, HIV clinics in the 1980s and long Covid support most recently. With the health policy axis tilting once again, it will need to adapt once more if this Bill becomes law.
Suggested citation
Stein T (2024) 'Ethics, evidence and shifting public policy: navigating the assisted dying debate'. Blog, Nuffield Trust