National end of life care policy and inequities in implementation

Key statistics 

• two thirds of deaths in the UK occur among people aged over 75 years, highlighting the importance of effective end of life care for older populations 

• the study conducted 98 in-depth interviews with clinicians, commissioners, patients aged 75+, relatives and other stakeholders across three clinical commissioning group case studies 

• spending on end of life care varied substantially between London clinical commissioning groups, ranging from £540 to £3,740 per death, illustrating large differences in local resource allocation 

• substantial variation in service provision between local areas contributed to unequal access to services such as overnight palliative care support and fast track continuing healthcare 

Key messages 

• national end of life care policy provides an important framework for quality standards but does not guarantee consistent implementation across local areas 

• patient experience is shaped by interactions between health services, social care, informal carers and local system factors 

• fragmentation between health and social care services creates challenges for coordinated and person-centred end of life care 

• local context, including commissioning capacity, resource availability and workforce conditions, strongly influences how policy is implemented 

• improved integration between health and social care systems is necessary to reduce inequalities in care experiences 

Policy implications 

• strengthen integration between health and social care services to provide coordinated end of life care 

• improve training and support for commissioners responsible for designing local end of life services 

• develop mechanisms to reduce variation in service availability between local areas 

• support social care workers and unpaid carers, who play a key role in end of life care 

• improve systems for recording and sharing patient preferences across organisations 

Gaps 

• the study focused on three London-based case studies, which may not represent all regional contexts across England 

• findings are primarily qualitative and based on stakeholder interviews 

• further research is needed to examine how different commissioning models influence service equity across regions 

• additional evidence is needed on how integration between health and social care can be effectively implemented 

Commentary 

This realist evaluation explores how national end of life care policy in England shapes the experiences of older people nearing death. The study highlights the complexity of translating national policy into consistent local practice. 

Patient experience at the end of life is shaped by a combination of formal services and informal care. Interviews with patients and families emphasised the importance of compassion, dignity and social connection during the final stages of life. Many patients expressed a preference to remain in familiar environments such as their home or care home rather than being admitted to hospital. 

However, the study found that achieving these preferences often depends on the availability of community-based services. Shortages of community nursing, limited overnight palliative care support and inconsistent access to home visits from clinicians were identified as barriers to delivering care outside hospital settings. 

Variation in service provision between local areas was a recurring theme. Differences in commissioning decisions, local budgets and organisational structures meant that some areas offered more comprehensive services than others. For example, variation in spending on end of life care between clinical commissioning groups suggests that resource allocation may influence the quality and availability of services. 

The research also highlights the fragmented relationship between health and social care systems. Medical care, such as pain management, is typically funded through the NHS, while practical and relational support such as personal care is often provided through social care services. Because these services operate under different budgets and governance structures, patients may experience gaps in support. 

The study emphasises that policy alone cannot guarantee equitable care. Successful implementation requires alignment between national policy goals, local commissioning decisions and the priorities of professionals, patients and families. 

From a health and social care equity perspective, the findings illustrate how geographical variation in services contributes to unequal care experiences at the end of life. Addressing these disparities will require stronger integration between health and social care systems, better support for the social care workforce and clearer mechanisms to reduce local variation in service provision.