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Unequal pain relief at home for dying patients

March 21, 2019

Pain relief and end of life care is not being provided equally to people with advanced progressive diseases who were at home during their last three months of life, according to a study of 43,000 people who died across England.

The data for the study was drawn from responses to the National Bereavement Survey (VOICES) in England between 2011 and 2015, which asks families or close relatives to reflect on the quality of care provided to a person who has died.

Just 10% of patients who died of a non-cancerous disease received palliative care at home, compared to 66% of cancer patients.

Led by the University of Leeds, the findings revealed that people who did access palliative care at home were 2.7 times more likely to have experienced good pain relief compared to those who did not receive palliative care.

The association between good pain relief and palliative care at home occurred regardless of the type of disease that patients had, but access to palliative care was not provided equally.

Lead author Dr Yousuf Elmokhallalati, from the University of Leeds, said: "This research shows that palliative care is associated with significant benefits to people with every kind of progressive disease, but this is not reflected in the spread of people that are being offered palliative care.

"We need to ensure that all people, whether they have cancer, heart or lung diseases, or any other life-limiting condition, are being offered appropriate support towards the end of their lives."

Published in the journal BMC Medicine, the study is the first to suggest there are significant reductions in pain for those receiving palliative care at home. It was conducted by researchers from the St Gemma's Academic Unit of Palliative Care led by Mike Bennett, Professor of Palliative Medicine at the University of Leeds, which works in partnership with St Gemma's Hospice in Leeds.

A British Medical Association report in 2016 showed that pain is the most important concern of both the public and of doctors when considering a patient who is facing a terminal illness.

The new study also suggests that patients who had planned where they wanted to die are nearly twice as likely to experience good pain relief compared to those who had not, showing the value of planning ahead and co-ordinating the support of healthcare professionals.

Only a quarter of patients were found to have recorded a preferred place of death, and cancer patients were nearly three times more likely to have a preference recorded compared to non-cancer patients (36.6% of cancer patients vs. 13.1% of non-cancer patients).

Funded by the National Institute for Health Research (NIHR), it also found that the pain relief experienced by patients accessing palliative care in the home was approaching the levels experienced by those receiving care in a hospice.

Within the full VOICES survey, 87% of patients who died in a hospice experienced good pain relief, compared with 66% of those who received palliative care support in their home, and 37.5% of those who did not receive support in their home.

Previous research by the same group in 2018 revealed inequalities in the duration of palliative care being provided to patients across England, with cancer patients referred for care around 53 days prior to death, compared with around 27 days prior for non-cancer patients.

Professor Bennett said: "It's already been established that the home is the place where pain is least well controlled, so our findings clearly illustrate the importance of access to end of life care.

"These results, combined with our previous research, suggest that pain relief and access to palliative care is particularly poor for older patients, those with non-cancer diseases and those who live in the North of England. These inequalities must be challenged."

The study was observational and found an association between access to palliative care and pain relief, so it was unable to determine cause and effect.
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Notes to editors

For interview requests please contact Simon Moore, Press Officer at the University of Leeds, on 0113 34 38059 or s.i.moore@leeds.ac.uk.

You can access an embargoed copy of the paper on Google Drive here: https://drive.google.com/open?id=1oKcCUEqvVYsNGlmpFoE7Y2-Qr0BdbRNl

The paper is titled 'Specialist palliative care support is associated with improved pain relief at home during the last 3 months of life in patients with advanced disease: analysis of 5-year data from the national survey of bereaved people (VOICES)' and will be available online here: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-019-1287-8

University of Leeds

The University of Leeds is one of the largest higher education institutions in the UK, with more than 38,000 students from more than 150 different countries, and a member of the Russell Group of research-intensive universities. The University plays a significant role in the Turing, Rosalind Franklin and Royce Institutes.

We are a top ten university for research and impact power in the UK, according to the 2014 Research Excellence Framework, and are in the top 100 of the QS World University Rankings 2019.

The University was awarded a Gold rating by the Government's Teaching Excellence Framework in 2017, recognising its 'consistently outstanding' teaching and learning provision. Twenty-six of our academics have been awarded National Teaching Fellowships - more than any other institution in England, Northern Ireland and Wales - reflecting the excellence of our teaching. http://www.leeds.ac.uk

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National Institute for Health Research

The National Institute for Health Research (NIHR) is the nation's largest funder of health and care research. The NIHR:
  • Funds, supports and delivers high quality research that benefits the NHS, public health and social care
  • Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
  • Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
  • Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
  • Partners with other public funders, charities and industry to maximise the value of research to patients and the economy
The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR commissions applied health research to benefit the poorest people in low- and middle-income countries, using Official Development Assistance funding.

This work uses data provided by patients and collected by the NHS as part of their care and support and would not have been possible without access to this data. The NIHR recognises and values the role of patient data, securely accessed and stored, both in underpinning and leading to improvements in research and care. http://www.nihr.ac.uk/patientdata

University of Leeds

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