Around 650,000 adults die each year in the UK, with one in six dying in poverty. We know that the care and support people receive from publicly funded services greatly influences the quality of their last year of life – yet very little is known about the level of care and support they receive.

To address this gap, and to help inform decision makers on the best possible use of funding, the Health Economics Unit (HEU), in collaboration with the Nuffield Trust, were commissioned by Marie Curie to estimate how much the UK spends on people in the last year of life.

Using analysis and engagement to grow understanding

The HEU and the Nuffield Trust undertook a comprehensive analysis of published data and statistics and extensive stakeholder engagement to estimate how much health care, social care and social security funding was spent on people in their last year of life across all four nations of the United Kingdom (UK) in 2022.

The expert team conducted a literature review, analysed publicly available data and engaged with 50 stakeholders to identify additional sources of information that were not routinely published, and to understand the implications of gaps in data for the analysis.

A total of 422 papers were identified in the search. Of these, 34 were reviewed in detail. Papers were included if the research contained either service activity or unit cost data for people at the end of life in the UK. The team extracted data from relevant papers and used this in combination with published statistics and information provided directly by stakeholder organisations.

The analysis covers all adults (>18 years) who died in 2022, including sudden deaths. The team also included expenditure that would be incurred even if the person was not in the last year of life, such as the State Pension. Likewise for health and social care, expenditure is included regardless of whether this was to address needs at the end of life. Effectiveness, carer expenditure, or mental health were not included in this analysis.

There were significant challenges in undertaking the work, due to gaps in data and availability of evidence within the timescale for the project. The impact of uncertainty on the total expenditure in the last year of life was explored using a probabilistic sensitivity analysis (PSA) and a one-way deterministic sensitivity analysis (DSA).

A first figure for end of life spending

The estimated spend on people in the last year of life in the UK in 2022 was estimated to be at least £22.1 Billion or £34,000 per person who died (650,000 people). Over half (53%) was on health care (almost £12 billion), 22% on social care (almost £5 billion) and 25% on social security (£5.5 billion).

Notably, a large proportion of the public funds allocated to healthcare for people in their last year of life was spent in hospitals (81%), and over half (56%) was spent on emergency hospital care. Put another way for every £10 spent on health care, £5.60 was spent on emergency care. In contrast, just 11% was spent on primary and community care.

Using data to inform policy

This work provides an important economic background for Marie Curie’s campaign to transform and better fund end of life care.

Dr Sam Royston, Executive Director of Research and Policy, of Marie Curie said: “The findings underline what we’ve been hearing in our work and wider research for far too long – gaps in holistic care in the community force too many people to visit A&E or call out ambulances.

“We’re drawing on the research findings to call on UK governments to shift health expenditure from hospital to community settings and deliver long term sustainable funding, including for the end of life care workforce.  In the immediate term, we are calling for significant plans and allowances in both the NHS 10 Year Plan and the Comprehensive Spending Review. We cannot afford to wait—the time to fix end of life care is now.”

By 2035, the number of deaths is expected to increase by 12% in the UK. As a result, total expenditure on people in their last year of life is also expected to increase.

Whilst this research tells us how much public expenditure is spent on people in the last year of life, a broader discussion is needed about what the implications are for end-of-life care, for example:

• Are we spending enough on people in their last year of life?
• Is funding being allocated in the best way possible?
• Are people getting what they need, when they need it?

The HEU recommends that future research should aim to address these questions, with a particular focus on variation and inequity. In time, improvements in data collection and linkage will mean that much of the information needed to answer these questions will be more readily available.