Palliative and end of life care

DOI: https://doi.org/10.58248/PN675 

There are varying definitions of palliative and end of life care. However palliative care can be described as an approach to improve the quality of life of people with life-limiting illness and those close to them through physical, psychological, social and spiritual support. The NHS define end of life care as a form of palliative care for those in the final year of life.

Experts agree there are challenges for the provision of palliative and end of life care. According to the latest National Audit of Care at the End of Life in 2019/20, two thirds of hospitals in England and Wales lacked face-to-face specialist palliative care provision eight hours a day seven days a week. Research shows that patient demand surpasses the recruitment and retention of NHS staff. In 2019 the Royal College of Nursing estimated that the number of NHS District Nurses had reduced by almost 43% in ten years to around 4,000. Some stakeholders note that information is not shared effectively between care providers which can inhibit out-of-hours staff and paramedics from reacting according to patients’ information and wishes.

The Health and Care Act (2022) introduced significant reforms to the organisation and provision of health and care services in England. The Act established Integrated Care Boards (ICBs) to replace Clinical Commissioning Groups (CCGs) from July 2022 and placed a duty on ICBs to commission and oversee health services including palliative care. NHS England have funded the development of seven regional palliative and end of life care strategic clinical networks to support commissioners. In May 2021 the National Palliative and End of Life Care Partnership in England updated its Ambitions for Palliative and End of Life Care that describe what good P&EOLC looks like, including fair access to care and maximising comfort and wellbeing.

The COVID-19 pandemic highlighted the importance of palliative care services as demand increased. During the COVID-19 pandemic the UK Government made around £400 million available to hospices to increase capacity and to enable patients to be discharged from hospitals.

It can be challenging for clinicians to determine if an individual has 12-months or less to live, particularly for non-cancer diagnoses due to less predictable illness trajectories. Since end-of-life provision was first introduced in the Social Security Act 1990, patients, or their clinicians, could provide the Department of Work and Pensions with a clinical prognosis that they have six months or less to live to get fast-tracked access to benefits. In May 2022, a new Social Security (Special Rules for End of Life) Bill was introduced in the House of Lords to extend eligibility to certain disability benefits for those expected to live 12 months or less in England, Wales, and Scotland.

Key points

• Palliative and end of life care includes the management of physical symptoms such as pain, as well as social, psychological, and spiritual support for someone with a life-limiting or terminal illness and those close to them. P&EOLC tends to be provided at home, in a care home, in a hospice or a hospital but it can also be provided in other settings such as prisons. Informal carers, often family members, are estimated to provide 75-90% of home-based care to people at the end of life.
• Demand for palliative and end of life care is increasing due to people living longer and with increasingly complex needs. The UK’s population is ageing and it is estimated that by 2050, one in four people will be aged 65 years or over. In England and Wales, by 2040, demand for palliative care is expected to increase by 25% to 47%.
• The COVID-19 pandemic increased the demand for palliative and end of life care. Challenges for the provision of P&EOLC during the pandemic included upskilling non-specialists to deliver P&EOLC, remote discussions with relatives and staff distress. An international survey found that 48% of palliative care services experienced shortages of PPE, 40% experienced staff shortages and 24% experienced medicine shortages.
• Overall, evidence suggests that people experienced poorer end of life care during the COVID-19 pandemic, for example, such as family and friends being unable to visit or say goodbye. The pandemic also exacerbated inequalities in accessing P&EOLC for minority ethnic groups as well as socio-economic inequalities in place of death.
• Research suggests that the quality of P&EOLC could be improved by early referral to palliative care services and providing services that support people to live and die according to their preferences, priorities and needs.
• Academic and industry stakeholders, patients and carers, have called for inequalities in access to palliative and end of life care to be addressed. For example, through the provision of 24-hour-7-days-a-week (24/7) specialist palliative care support in the community, education and communication skills training for health and social care professionals, and investment in community care to reduce unnecessary hospital admissions.

 Acknowledgements

POSTnotes are based on literature reviews and interviews with a range of stakeholders and are externally peer reviewed. POST would like to thank interviewees and peer reviewers for kindly giving up their time during the preparation of this briefing, including:

Contributors:

Members of the POST Board*

Department of Health and Social Care*

Department of Work and Pensions*

Professor Matthew Allsop, University of Leeds

Dr Sabine Best, Marie Curie*

Dr Natasha Campling, University of Southampton*

Dominic Carter, Hospice UK

Professor Simon Cohn, London School of Hygiene and Tropical Medicine

James Cooper, Together for Short Lives

Dr Felicity Dewhurst, National Institute for Health and Care Research, Older People and Frailty Policy Research Unit* 

Professor Ilora Baroness Finlay of Llandaff FRCP, FRCGP, FHEA, FMedSci, FLSW*

Professor Kate Flemming, University of York*

Professor Lorna Fraser, University of York

Professor Clare Gardiner, Sheffield University*

Professor Rob George, Guy’s and St Thomas’ NHS Foundation Trust  

Usha Grieve, Compassion in Dying*

Professor Barbara Hanratty, National Institute for Health and Care Research, Older People and Frailty Policy Research Unit* 

Anita Hayes, Hospice UK

Davina Hehir, Compassion in Dying*

Professor Irene Higginson, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation*

Melanie Hodson, Hospice UK

Professor Celia Kitzinger, University of Cardiff*

Professor Sue Latter, University of Southampton*

Dr Guy Peryer, National Institute for Health and Care Research, Applied Research Collaboration, East of England (disclaimer: the views expressed are those of Dr Peryer and not necessarily those of the NIHR).  * 

Dr Claud Regnard, St Oswald’s Hospice

Dr Naomi Richards, Glasgow University*

Sam Royston, Marie Curie*

Professor Katherine Sleeman, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation*

Dr Louise Tomkow, National Institute for Health and Care Research, Older People and Frailty Policy Research Unit* 

Professor Bee Wee, NHS England*

Dr Lesley Williamson, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation*

*denotes people and organisations who acted as external reviewers of the briefing.