By Neil Small, Emeritus Professor of Health Research at the University of Bradford (see biography at the foot of this page)
Keywords: end of life care; neoliberalism; palliative care; private members bill.
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The context in which we are considering assisted dying.
The Terminally Ill Adults (End of Life) Bill is continuing its progress through parliament. It is doing this at a time while the NHS is under considerable financial pressure, hospices are struggling to retain their current level of service and care services are in crisis. It is also progressing in a health and care system shaped by forty years or so of neoliberalism. In that time, we have travelled from Thatcher’s “no such thing as society” to Trumps’ mantra that all is resolved via “the deal”. Neoliberalism’s individualism, its approach to relationships as transactional and its emphasis on the market have changed our social contract and our individual sensibilities. www.routledge.com/9781032365145 . Both present pressures and the impact of neoliberalism set the context within which we need to examine a proposal that would see a major change in how the state can intervene in our lives.
We need to broaden the options we are considering.
The advocates of assisted dying argue it will reduce individual suffering and increase autonomy and choice when compared with the current alternative. The Department of Health and Social Care’s (DHSC) Impact Assessment estimates between 1,042 to 4,559 assisted deaths in England and Wales by Year 10 after the bill’s implementation. (www.gov.uk. 3 May 2025). These figures are drawn from examining other parts of the world where assisted dying is legal, inevitably these have very different patterns of care provision. This range is so great and the settings looked at to infer numbers are so different that, rather than illuminating impact, it underlines the huge uncertainties around take up of the bill.
Comparing a hypothesised gain with just what is available now is not the best way to proceed. A wider assessment, including options about changes in the balance of care services, would offer a more useful context in which to consider the Bill. Most spending in a patient’s last year of life occurs in acute hospitals (78% of total formal healthcare costs). A series of studies undertaken over many years have underlined how a shift from hospital based acute care would reduce system wide spending and improve outcomes for patients and family caregivers. ( https://www.kcl.ac.uk/nmpc/assets/research/costs-and-cost-effectiveness-of-adult-palliative-and-end-of-life-care-evidence-briefing-summary.pdf Accessed on 20/03/2025. )
An example of shortcomings in care that may impact on choosing assisted dying.
Many people in the last months of life receive social care. If the care they receive is inadequate they may lose faith in any health services being able to meet their needs. They may also feel that they are not valued. Some social care is excellent but the sector as a whole has been simultaneously monetised and devalued. Care workers are in insecure and badly paid employment. Their work is invariable categorised as “unskilled”. Workers are given very limited time to do things like washing, dressing and toileting and it’s very likely the person doing this today will not be doing it tomorrow. Anyone who has been helped with activities of daily living will know the difference between a rushed task and someone who does it with skill and compassion. This is the difference between a care worker “doing to” or “being with” their client. At the same time care planning is caught up in the short-termism that is a characteristic of market economies. We know that the need for care will increase but we do not give priority in our politics to things beyond a concern with short-term futures. ( www.fabians.org.uk Seizing the Opportunity report published 18 May 2025.)
Any new initiative comes with challenges in delivery,
What would the impact of inequalities in access to care be on the take up of assisted dying? Would take-up be higher in areas with poorer services or in groups who currently are under-represented in specialist palliative care? Or would people in areas with poorer services also get less opportunity to access assisted dying should they wish it? At present there are inequalities by geography, by deprivation, by ethnicity, and by diagnosis. The DHSC have published an equalities impact assessment (www.gov.uk 16 May 2025). That assessment finds that the bill is drafted in such a way as to address the challenges of existing inequalities and notes a commitment to undertake a review 5 or 6 years after the bill has passed.
Training and support needs associated with the bill are considered in the Impact Assessments. Assisted dying seeks to give adults the right to make autonomous and private choices. As the bill has progressed there has been attention paid to how to identify people being coerced to choose assisted dying. But this remains a challenging areas with many people fearing that the vulnerable may be sacrificed in favour of the idealised autonomous individual. There are many other long-standing challenges in end of life care that have been resistant to change despite many years of training initiatives. These are just some examples: doctors find it hard to communicate bad news; prognostication is difficult, saying someone has less than six months to live is often inaccurate; patients often mis-hear/misunderstand what doctors are saying; patients’ perception of their needs can be different from their families/carers perception; identifying clear and settled views (a requirement in the bill) is complex in a scenario when the exigencies of the moment can change your mind, put simply people have good and bad days.
A series of NHS failures, from Mid-Staffordshire, via maternity and mental health care, have illuminated the capacity of the NHS to miss toxic behaviours in their institutions. There will need to be close attention to how assisted dying is implemented that takes cognizance of the potential for mistakes, misjudgements and malpractice. www.routledge.com/9781032365176
Individual choice comes with risks.
Assisted dying raises issues about the legitimate scope of the NHS and about the relationship between the public and health care providers. Someone asking for and being given medical assistance to die is not getting health care or social care, they are having it withdrawn. They may still be being cared for but we are on new ground and need a language to accompany us. Having a health professional who can give you something that will kill you may erode trust in the NHS and in doctors, either individually or collectively. Will a patient be able to ask their doctor, “how many times have you participated in assisted dying?” (see Your choices in the NHS www.nhs.uk.) While assisted dying might alleviate individuals suffering it has the potential to further erode social trust.
The changes are being proposed in the context of a forty year attack on the idea that we are part of a community in which our existence is intertwined with that of others. Even in the face of suffering, or especially in the face of suffering, we should expect that we will be valued and cared for.
While there remain wide uncertainties about take up, impact, and about the alternatives that could be considered the bill feels rushed and insufficiently researched.
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Neil Small is Emeritus Professor of Health Research at the University of Bradford. His two most recent books, Health and Care in Neoliberal Times . www.routledge.com/9781032365145 and Failures in Health and Social Care www.routledge.com/9781032365176, both published by Routledge in 2023, explore some of the issues in this blog – but in a lot more detail: Website https://www.bradford.ac.uk/staff/nasmall