Research finds that end of life care across England is not being prioritised, despite aging population

Research by King’s College London has found that local authorities have failed to prioritise palliative and end of life care, despite the health care challenges posed by a rapidly ageing population.

The research, published today in the journal Palliative Medicine, is based on an analysis of the Health and Wellbeing Strategies of 150 local authorities across England, which found that only 4 per cent cited end of life care as a priority.

Palliative care is defined as the active total care of patients whose disease is not responsive to curative treatment, with the control of pain, of other symptoms, and of psychological, social and spiritual problems paramount.

The goal of palliative care is to achieve the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness.

As the population ages, the need for effective palliative care strategies that are fit for purpose has never been greater - research suggests that the demand for palliative care will increase by 42%* by 2040.

To understand how England’s 152 local authorities - whose regional Health and Wellbeing Boards are responsible for improving health and care – prioritise end of life care, researchers systematically analysed their Health and Wellbeing Strategies published from 2012 onwards. In two areas neighbouring Health and Wellbeing Boards developed a joint strategy, making the total number of strategies analysed 150.

Specific measures linked to end of life care were assessed, including; the level of prioritisation of end of life care; whether end of life care was referenced within a specific clinical context – such as in relation to cancer or dementia; whether a target for improvement was identified; and whether a specific intervention for improving end of life care was present.

Researchers found that of the 150 strategies identified, end of life care was mentioned in just over half 78 (52 per cent) and prioritised in only six (4 per cent).

In 43 of the 78 strategies, end of life care was mentioned in connection with specific medical conditions, with ageing and dementia the most cited.

The King’s team also found that there was a sparse use of evidence in relation to end of life care, particularly with respect to the effectiveness of interventions. With budgets for specialist palliative care services ranging from £51.83 to £2,329 per patient per annum across England, being able to provide robust evidence about the effectiveness of treatments could have a bearing both on provision and budgets.  

Lead author Dr Katherine Sleeman, from King’s College London’s Cicely Saunders Institute for Palliative Care, Policy & Rehabilitation said: ‘This is the first study to systematically analyse content relating to end of life care within local health care strategies and provides a comprehensive national picture of priorities and plans. 

“What we found is that while half of Health and Wellbeing Strategies mention end of life care, few prioritise it, and none cite evidence for effective interventions This is concerning, especially as end of life care has been highlighted as a priority for policy makers nationally and internationally.

‘This research highlights the large variations in the prioritisation of palliative and end of life care across England and underscores the need for greater scrutiny of local health and care strategies to avoid the unintended creation of a palliative care post code lottery.’ 

Notes to editors:

The research: ‘Is End of Life Care a Priority for Policy Makers? Qualitative Documentary analysis of Health care Strategies’ is published in Palliative Medicine.

The report is independent research arising from a Clinician Scientist Fellowship to Dr Katherine Sleeman supported by the National Institute of Health Research (NIHR). The views expressed in the report are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

*https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0860-2