End of life care is part of palliative care and encompasses treatment, care and support for people thought to be in the last year of life. End of life care is typically provided by the generalist workforce in primary care, care homes, hospitals and domiciliary care. Palliative care is typically provided by specialists in hospices or other dedicated settings.
Government’s Plan for Change intends to move healthcare out of hospitals and into the community, with palliative and end of life care playing a large role, according to a subsequent Government announcement. In December 2024, Government invested £100m in hospices to, in the words of Health and Social Care Secretary, Wes Streeting, ‘continue to deliver the compassionate care everyone deserves as they come to the end of their life in the best possible environment’. Through what was, until recently, the Children’s Hospice Grant, hospices for children and young people will also receive an additional £26m funding for 2025/26.
The British Medical Association (BMA) responded to the funding in a statement made by Professor Philip Banfield, BMA Council Chair, who suggested that funding hospices falls short of what is needed for people to achieve their wish to die in a place of their choosing. He said, ‘We sometimes forget that the majority of people choose to reach the end of their lives at home or in a care home, where their care is often managed by GPs, district nurses and community palliative care teams, who are buckling under cost, workload and workforce pressures.
‘If we are to ensure everyone in the UK receives the end of life care they should have a right to expect in a civilised society, there needs to be a holistic, four-nation approach and investment in the whole of the system that provides this most important care in people’s final hours.’ It could be argued that this investment in hospices, although welcome, does not address the wider issue of using social care to ease the burden on the NHS or the wishes of those who would like to die at home or in a care home setting.’
The Marie Curie Better End of Life Report 2024 states that up to 90% of deaths would benefit from palliative care. It anticipates that the need for palliative care will increase by 26.5% by 2048. The report asserts that, ‘with around a third of NHS costs accrued in the last year of life, the design and delivery of end of life care has huge implications for public spending’.
Another report by Marie Curie and the University of Sheffield has estimated that there are up to 762,000 people across the UK every year providing unpaid care for someone living with a terminal illness. The new report also reveals that almost 15% of end of life carers who are living with the person they care for (which equates to at least 22,500 carers) are believed to be living below the poverty line.
The NHS Long Term Plan, published in 2019, makes a brief mention of end of life care and contains a commitment to roll out ‘training to help staff identify and support relevant patients’. It promises to introduce proactive and personalised care planning ‘for everyone identified as being in their last year of life’. The plan states that, as a consequence of better quality care, avoidable emergency admissions will be reduced and more people will be able to die in a place of their choosing.
Around 9.5 million hospital beds each year are occupied by people in the last year of life following an emergency admission. Furthermore, 43% of deaths occur in hospitals. Amanada Pritchard, Chief Executive at NHS England, said if this figure was reduced by 10%, it could have the same impact as building three new hospitals. With demand for palliative care expected to rise by 42% within 15 years, radical approaches and investment are needed to meet the demand and doing this would ease NHS strains. In our submission to the consultation on the 10-Year Health Plan for the NHS, we have proposed to the Government a five-point plan, which would help build a new ecosystem for palliative and end-of-life care. This includes the improved provision of community care, which needs integrating with the Government’s plans for Neighbourhood Health Centres. This would reduce emergency admissions, but we also need to work with hospitals to support people there and play our part in reducing overcrowded wards. Our vision includes creating Sue Ryder hospice suites on existing and new hospital sites. These suites would be separate buildings from the wards and would create the home-from-home hospice environment that our patients value so greatly. Working with colleagues in hospitals we would identify terminally ill patients in A&E and other wards and transfer them to our specialist palliative care suites. This would immediately free up beds. From our suites we would ensure patients experience a timely discharge to the community or for people at the end of life, a dignified, peaceful death away from a busy hospital ward. Reshaping how hospital care works for dying people would be transformational – for patients, the hospice sector and the NHS. In the 10-Year Health Plan, we are calling on the Government to invest and unlock the potential of the hospice sector in helping meet its NHS targets. James Sanderson, Chief Executive Officer, Sue Ryder X: @JamesCSanderson Email: [email protected]
In the Prime Minister’s ‘Plan for Change’, Government should work in partnership with public and health professionals for the ‘biggest national conversation’ about the NHS’ future. His 10-year plan will focus on individual’s ideas and experiences and include staff training to help identify and support those in their last year of life. Currently, outside the NHS, there is no recognised educational support for generalist staff who care for frail older adults in the community with complex health needs and those approaching the end of their life, many of whom are in care homes. Nursing homes tackle growing demands for fast-track end of life care as hospitals discharge patients needing comfort care or an unavailable hospice bed. 41.2% of people who died in care homes were temporary residents, compared to 36.6% in 2019. Care home residents are often admitted to hospital at the end of life due to crisis-driven situations, frequently led by overwhelmed, anxious, unprepared staff and family who don’t know what to do. While some admissions are necessary, many could be avoided. The Health & Social Care Act 2022 suggests Integrated Care Boards (ICBs) ensure local authorities and social care use Care Act funding to develop community Advance Care Planning (ACP) education initiatives. ACP encourages compassionate discussions documenting choices and preferences, reviewed over time with trusted people. This could prevent unnecessary ambulance calls and hospital admissions, ensuring care aligns with patients’ preferences. Implementing policy change and education will help nursing homes provide high-quality end of life care. If ACP were standard, generalist staff would manage end of life situations better, improving everyone’s experience. Healthwatch England should submit a Parliamentary report evidencing how many only hear about ACP in crisis situations, advocating for mandatory ACP awareness at the national level and inclusion in policies, as ICB’s were encouraged to create. Hospice beds are not the solution. However, accessible Palliative Care expertise in care homes can help ensure residents receive optimal care, a dignified death and avoid inappropriate hospital admission. Paula Plaskow, End of Life and Palliative Care Lead, Jewish Care X: @jewish_care Email: [email protected]