Calls for assisted dying to become legal have been more prominent in recent months. Legislation is being considered in a number of jurisdictions in the UK, including in Jersey and the Isle of Man (which are both committed to introducing legislation on assisted dying), and in Scotland, where a consultation has begun. Although legislation has not yet been considered by the Westminster parliament, the topic was debated in April this year, and a private members’ bill is anticipated.
The Secretary of State for Health and Social Care, Wes Streeting, has highlighted that practical issues need to be considered as well as moral and ethical principles. As he put it, “is palliative care in this country good enough so that choice [to opt for assisted dying] would be a real choice, or would people end their lives sooner than they wish because palliative care and end of life care isn’t as good as it could be?” (BBC Radio 4, 26 July 2024).
Introducing assisted dying has major implications for health systems, making it critical to understand the current state of play for people receiving end of life care in advance of legislation. We draw on our research on end of life care in England to highlight current challenges in the provision of palliative and end of life care.
The Nuffield Trust's neutral position regarding legalisation of assisted dying
The term assisted dying is used in this long read to include both clinician-assisted methods of dying, and assisted suicide (where drugs are self-administered following a prescription by a doctor).
We hold a neutral position on whether or not assisted dying should be legalised, for whom, and in what circumstances. In line with our remit – to improve the quality of health care in the UK by providing evidence-based research and policy analysis and informing and generating debate – we are committed to identifying evidence to support decision-makers in understanding the implications of legislation for health and care services.
The main challenges facing palliative and end of life care in England
Despite end of life care being needed by almost everyone, there are currently significant challenges with ensuring that high-quality end of life care is available to everyone, whether provided by core health and care services, or for those with more complex care needs requiring specialist support. In 2023, there were 544,000 deaths in England, of which 43% occurred in hospital, 28% at home, 20% in care homes, and the remainder in hospices or elsewhere.
Many people who die do not receive the care they need, which impacts on both them and the unpaid carers who support them
There is well-established research about what patients and carers value at the end of life – such as holistic, coordinated care and support to maintain their quality of life. But arrangements to deliver this in a consistent and equitable way remain elusive. A recent nationally representative survey of experience at the end of life in England and Wales found a third of people were overwhelmingly affected by pain in their final week of life, with it common to find poorly coordinated care, difficulty accessing services out of hours, and insufficient support for unpaid caregivers.
There are also inequalities in end of life care. People from more deprived areas are more likely to die in hospital, and be admitted to hospital at the end of life even if they then die at home. People from Asian, Black or mixed ethnic groups who die at home are prescribed fewer medications for symptom control at the end of life.
Provision of specialist palliative care services is fragmented, with access to care variable and funding insecure
Specialist palliative care services, provided by independent hospices or within the NHS, support people with complex care needs after a terminal diagnosis has been made, and at the end of life. They have expertise to meet unresolved complex needs that cannot be met by the core team, such as relating to symptom control or psychological needs.
Independent hospices are an important part of the landscape of specialist palliative care services, particularly outside of hospital. However, they receive under a third of their funding from the public sector, with the majority coming from charitable sources. Increases in costs for hospices, including the impact of pay agreements negotiated for NHS staff, combined with a challenging funding environment across the charitable sector, have heightened concerns about the stability of the hospice provider sector.
At the same time, the dependence in the UK on independent hospices means that access to specialist care is variable, with more deprived and diverse areas being less well served.
However, non-specialist health and care services provide most care at the end of life care but are overstretched
While it is estimated that as many as half of people who die in England have some input from specialist services, most people at the end of life will receive most of their care from general health and care services – whether in hospital, or if they die at home or in a care home, from their GP, community nursing services, and social care providers.
While the NHS is as stretched as it is now, it is questionable whether high-quality care for people at the end of life can be delivered. For example, whether urgent and emergency care services are able to provide high-quality care to people who access them. Over four-fifths of people who die in hospital attend A&E in the last month of life, as did a fifth of people dying in other locations, but we know that long waits in A&E or for admission to a bed are routine.
Workforce challenges and the need for skills and experience to deliver end of life care
Delivering end of life care requires skills and experience, ranging from expertise in symptom control to communication skills to support people and families with psychological challenges and navigating care needs. The National Audit of Care at the End of Life, which applies to the 43% of deaths that occur in hospital, found that only 60% of providers met the current standard to have face-to-face specialist palliative care advice available for eight hours a day, seven days a week. Specialist skills are equally scarce in community settings, where improving access to training could enhance confidence among GP practice, community nursing and social care staff to provide end of life care. District nurses play a critical role in provision of end of life care for people in the community, but the size of this workforce has declined over time.
The role of GPs and the primary care team
Our recent research using GP clinical records has revealed important changes in patterns of care provision from GPs and the primary care team. For people who die at home, recorded contacts from the GP and primary care team more than doubled between March and August 2019 and the same period in 2023. This reflects the combined impact of more people dying at home, and changes in provision of care and how activity is recorded. While more activity is being recorded, the organisation of primary care is changing in ways that can have a negative impact on end of life care. In particular, the decline in continuity of care risks increasing unplanned hospital admissions.
For people who died in care homes, over 90% of people had a contact with the GP/practice in the last month of life (a 44% increase since 2019), which in part reflects a programme designed to enhance the provision of primary care to care home residents. But these changes have occurred without a broader evaluation to understand the impact on people, their families, or the staff and organisations providing care.
Not enough is known about end of life care provision by social care providers
As well as the almost one in five people who die in a care home, many more people rely on home care at the end of life – for support with personal care, preparing and eating meals, and taking medication. There is very limited visibility of provision of home care for people at the end of life: a study from 2012 found that 15% of people received local authority funded care in the last year of life.
What might legislation on assisted dying mean for end of life care services?
Where assisted dying has been legalised, international evidence suggests the numbers of people dying in this way has so far remained small (for example, under 5% of all deaths in Canada). But end of life care impacts everyone who will die.
Evidence about the impact of legalising assisted dying on end of life care services is unclear, but legislation is likely to impact on health care professionals, on funding, and on access to health services – all areas where current provision for people at the end of life is under strain.
A key consideration is how people at the end of life will navigate an already complex system, where access to information and coordination of care is a major concern for people dying and those who care for them. This could significantly increase existing inequalities in access to care at the end of life.
While decisions on legalising assisted dying in the UK have not yet been made, and implementation may be some time away, this is a crucial time to be considering implementation issues. Legislation being considered now will set the framework within which services will need to operate in the future.
The Nuffield Trust is currently scoping research to draw on international experience to understand implications for the UK. We aim to review existing evidence on the impact of legislation on patients and their families, the health and care workforce, and how services are organised, and to identify lessons for the UK, drawing on experience in countries where assisted dying is already legal.