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Report warns of ‘eternal 2020’ for end of life care services without expansion of services

Major study reveals substantial inequality in end of life care options across England

A new report warns that the ‘traumatic’ final days experienced by patients sent home or to care homes to die without adequate support and resources could become the ‘new normal’ without significant reform to England’s end of life care services.

The analysis by the IPPR think tank found that annual deaths are projected to overtake rates seen during the 2020 pandemic year spike by 2031 - potentiallyexposing end of life services to the same pressures faced last year, every year from 2030 onwards.

The report attributes the growing death rate to the country’s rapidly ageing population, with the over-60 population in England estimated to grow by more than 15 per cent between 2018 and 2031.

In addition to the increasing number of annual deaths, the causes of death are also changing. The researchers note a rapid rise in conditions, such as Alzheimer’s and dementia, that often require long term support in care settings rather than hospitals. Meanwhile, more cancer patients are living longer, but with long-term and complex treatment needs.

This underscores the need for more capacity, training and resources in end of life and palliative care, according to the report.

The experience of Covid-19 shows that end of life care services are not ready to cope with a substantial increase in demand. New analysis shows that, amongst people who died of common non-Covid causes, there was a 23 per cent rise in care home deaths and a 36 per cent rise in deaths at home in England in 2020 – putting the equivalent of 15,000 people at risk of poor care.

The authors argue that this unplanned and unfunded shift meant too many people faced their final days without the right support, resources and services, often leading to undignified deaths and poor practice, including non-consensual ‘Do Not Resuscitate’ orders.

Shifting end of life care to the community the right way

The report argues that unlike the unplanned rush to community and home end of life care during the pandemic, a well-planned, well-resourced, and well-staffed shift to care in the community and private homes can mean more personalised care, higher quality of care and better use of resources. A successful transition would leave end of life care services better able to cope with the rising demand in years to some, according to the authors.

The researchers argue that the NHS is right to prioritise shifting patients to community care where medically possible. However, the analysis of the state of England’s end of life care services by a collaboration including Imperial College London, the University of Edinburgh and University of Lausanne - among the most ambitious of its kind ever undertaken - found substantial inequality in end of life care provision across England.

The research shows that more affluent areas have greater access to community, hospice and home care options, whereas people in the most deprived areas face the most time in hospitals at the end of their lives. London, the North East and the West Midlands are particularly reliant on hospital treatment and A&E in the last year of life. The report argues that this leaves some areas significantly better prepared for disruptive decades ahead.

A blueprint for community-led end of life care

For a resilient community-led end of life care service, the report urges the government to adopt a strategy to provide everyone the right care, from the right person, at the right time, with measures including:

Care champions - Hiring 2,700 new care coordinators to advocate for patients within communities to get them the care they need and ensure compassion and dignity for dying people.
Funding and resources – Ensure ‘hospice quality’ care in all settings, widely seen as the gold standard for care, by properly funding and resourcing services – IPPR has previously called for £2 billion more investment in community care per year.
Training - Ensuring quality training for all with a new ‘end of life care academy’, open to workers and carers. Everyone should have access to the right professional for their needs – regardless of where they are.
Support - Dedicated emotional, mental health and financial support should also be made available to care workers and family carers alike.

The authors argue that getting the shift to community end of life care right will also save the NHS money in the long term. End of life care in the south central region, where the move away from an antiquated hospital-based model of end of life care is most developed, is £1,500 cheaper per patient (20 per cent less) compared to the region most reliant on more expensive and less preferable hospital care. This is money that can be reinvested in better NHS services across the board.

Chris Thomas, IPPR senior research fellow, said:

“The pandemic showed the consequences of trying to tackle a huge spike in deaths without the right, proactive funding, workforce, training and coordination. In too many cases, it meant traumatic final days for dying people – and for their friends, family and loved ones too.

“The grim reality is that total annual deaths will reach pandemic levels by 2031 - and without proactive planning, this risks an eternal 2020 in end of life care. To prevent this, the government must put in place hospice quality community care across the country to guarantee a dignified death for all.

“Too often, we find it difficult to talk about death and dying, but we must overcome that hesitancy to boldly confront the challenge ahead.”

Ruth Driscoll, head of policy and public affairs at Marie Curie said:

“We share the concerns that the IPPR has raised today about the need to learn lessons from the rush to community-based end of life care during the pandemic, which left too many people dying in private homes and care homes without the care, support and dignity they deserved.

“Demand for palliative and end of life care is set to increase rapidly as our population ages. Ensuring everyone is properly cared for at the end of life must become an urgent priority at both a national and local level. Health and social care legislators, commissioners and providers must ensure good care is in place for all people – not just those who can afford it, not just those who shout the loudest, not just those from certain social groups and not just those who live in a particular postcode.

“For too long, those who have been underprivileged in life have struggled in death. We welcome the IPPR’s focus on tackling health inequalities and ensuring hospice-standard end of life care and support is made available in all settings, including the community.”

ENDS

Chris Thomas, lead author of the report, is available for interview

CONTACT

David Wastell, Head of News and Communications: 07921 403651 d.wastell@ippr.org

Robin Harvey, Digital and Media Officer: 07779 204798 r.harvey@ippr.org

Case studies available via third parties on request

NOTES TO EDITORS

The IPPR paper, The State of End of Life Care: Building back better after Covid-19 by Chris Thomas, is available for download at: http://www.ippr.org/research/publications/the-state-of-end-of-life-care
Total deaths in England in 2020 totalled around 575,000 in 2020 and are projected to reach 583,000 in 2031. 2031 projections were made before the Covid-19 pandemic.
This briefing paper is part of a collaborative programme of work by the Centre for Health Policy, Imperial College London, the Centre for Primary Care and Public Health (Unisanté) University of Lausanne in Switzerland, the University of Edinburgh and IPPR, supported by the Health Foundation. .
IPPR is the UK’s pre-eminent progressive think tank. With more than 40 staff in offices in London, Manchester, Newcastle and Edinburgh, IPPR is Britain’s only national think tank with a truly national presence. www.ippr.org