With the Assisted Dying (Terminally Ill Adults) Bill progressing through Parliament, there has been increased political and media attention on the provision of care for people nearing the end of life. Whatever people’s personal views, there have been consistent concerns that palliative and EOLC provision is still not good enough to meet the needs of the ageing population now and in the future, when the number of people dying is predicted to rise by 25% by 2040.

The Secretary of State for Health and Care, Wes Streeting, voted against the Bill, saying repeatedly that he was ‘not sure as a country that we have the right end of life care available to enable real choice on assisted dying’ and that ‘the safeguards for some older people might not be strong enough to prevent coercion, as palliative and end of life care are still not good enough in our country’ (BBC News).

Media often give the impression that the main alternative to assisted dying is hospice or specialist palliative care. While these services are important, particularly for those with complex cancer needs, they represent only part of the picture as the majority of people now die from age-related conditions.

There is too little recognition of the wider generalist health and social care workforce, including geriatricians and others caring for older people, who collectively deliver the majority of EOLC in this country. These frontline teams provide the mainstay of care for most people in their final years, and must be recognised, well trained and supported if EOLC is to improve to meet the needs of the ageing population.

We must do EOLC differently

Currently, the way we care for people in the final year of life is not working well enough. Although there are many examples of excellence, EOLC can be inconsistent and unreliable. It is inequitable for many who cannot fund care themselves and there is too little investment training and support for frontline health and care teams to provide proactive, personalised EOLC. The lack of preventative community care leads to excessive emergency admissions and hospital deaths, over-hospitalisation and over-medicalisation of the dying and poor experience of care for people and families. The impact on hospital backlogs and lengthened waiting times, a key mission in the Government’s Plan for Change, means that reduced hospitalisation and waiting times are unlikely until this issue is resolved.

Recent research shows that around a third of hospital patients are in their last year of life, with a third of emergency admissions being for people in their final year, costing £6.6bn/year, almost a third of the health and care EOLC budget, according to the Nuffield Trust. Most deaths (44%) occur in hospital, about 22% die in care homes and 29% die at home, with primary care and domiciliary care support. Only 4% die in hospices and it’s estimated only around 11% of those who die each year receive care from palliative care specialists, including outreach homecare, where most would prefer to be. Along with improvements in specialist palliative and geriatric care provision, the Coalition seeks a ‘both-and’ solution of both generalists AND specialists working better together across both health AND social care to comprehensively improve EOLC.

With changing demographics, more people live longer with chronic conditions and die with age-related conditions (dementia is the UK’s leading single cause of death). Many more in future will need social care to be able to live well, right to the end of their lives. Most care for most people is given by three million generalist frontline health and social care teams – all should receive EOLC training. With better mobilisation, training and support for frontline teams, EOLC could improve for
more people.

EOLC is everyone’s business

The Coalition of Frontline Care is a partnership of leading health and social care organisations, united to promote best practice in care for older people in their final years of life, by empowering the frontline workforce. Together it represents the majority of the health and social care workforce who care for most people in their last years of life. Our members include National Care Form (NCF), Care England, Homecare Association, Association of Retirement Operators (ARCO), British Geriatric Society (BGS), the Community Hospital Association and the Gold Standards Framework Charity (GSF), the leading provider of EOLC training. Each organisation is committed to high-quality EOLC in its own areas of influence.

The Coalition believes that everyone deserves top-quality care as they near the end of life, and that EOLC will not improve in this country without the mobilisation and empowerment of well-trained, well-supported generalist frontline teams in health and social care. The Government’s 10 Year Health Plan requires a strategic shift from hospital-based care to community-based and neighbourhood-level services, emphasising prevention and digital transformation. However, this ‘shift left’ can only be achieved through significant investment in high-quality preventative community health and social care services – notably in primary care, domiciliary care and care home teams.

If we are serious about improving EOLC for more people, now and in the future, we must start with the workforce who make it happen. Such improvements are already happening with some frontrunners, leading to better quality care, more people dying well where they choose, reduced hospitalisation, greater cost-effectiveness, better workforce satisfaction and multiple other benefits. But these exemplars are not yet the norm; EOLC is still not good enough to ensure consistent, integrated, compassionate care for all.

By empowering, training and enabling this workforce, we can transform the experience of the last years of life for millions of people and their families. The Coalition urges the Government to invest in training and support for the frontline generalist health and social care workforce to make a radical change. This is the group with the greatest potential to drive change in standards of care, especially for older people, ensuring more receive compassionate, ‘gold standard’ care at the right time, in the right place, every time. Together the Coalition has produced a report detailing its argument, evidence, examples and recommendations for Government.

The time is now

This is a critical moment to speak up about the importance of getting EOLC right, particularly for our most vulnerable older people. One positive outcome of the assisted dying debate and increased public awareness and spotlight on EOLC is a universal agreement that EOLC is not yet good enough and must improve. We must seize this opportunity to reaffirm the need for recognition, investment and further development in EOLC for the 650,000 who die each year and the many thousands more in future.

The Coalition believes the most effective way to achieve this is by enabling and supporting generalist frontline teams, alongside improved specialist support from geriatrics and palliative care services. Whilst acknowledging existing examples of high-quality care, we should focus on mobilising and training the frontline workforce of generalist health and social care teams who provide most care for most dying people.

Investment in training, support and mobilising frontline workforce would, we believe, make the biggest difference in improving end of life care for more people now.

The Coalition’s aspiration

The UK’s specialist palliative care service has been recognised repeatedly as the best in the world (The Economist, Quality of Death Index). The Coalition now calls for a transformational shift in the way we care for older people nearing the end of life and aspire to make the UK the ‘best in the world’ for generalist palliative/end of life care as well. If supported by Government, the Coalition of Frontline Care could play a pivotal role in representing and supporting this key workforce, with a plan for provision, training and workforce support and implementing scalable best practice models.

With a well-trained, motivated workforce, we can deliver consistent, reliable care for all and could:

• Improve the quality of care for thousands of people nearing end of life and their families.
• Improve workforce morale and retention.
• Be cost-effective and sustainable.
• Reduce emergency admission, unblock hospital beds and help cut waiting lists.
• Ensure fewer people feel compelled to consider assisted dying due to
  inadequate services.

The Coalition wants to hear from you

There are many success stories showing that sustainable, high-quality care is possible, but the Coalition is seeking more evidence of sustained best practice, cost-effective improvements or support for frontline generalist teams to improve EOLC. The Coalition seeks to spread ‘the best of care for the rest of care’, with a vision of ‘best in world’ frontline EOLC, securing the future of top-quality EOLC in the NHS and care sector for generations to come.

See the Coalition of Frontline Care’s report, End of Life Care is Everyone’s Business here, or visit the Coalition webpage here and the GSF website here. Leave a comment on this feature or join the conversation to share your thoughts.

Professor Keri Thomas OBE is Chair of the Coalition of Frontline Care and Founder and Chair of the GSF Charity in End of Life Care. Email: [email protected] X: @ProfKeriThomas LinkedIn: @The-Gold-Standards-Framework

Related Content

Into Perspective: What would hospices do with more funding and how can they become more sustainable?

Person-centred reform on the horizon: A new sector vision

Celebrating Excellence: 2025 Winners

Into Perspective: How could end of life care investment combat NHS pressures?