Tens of thousands of people dying of heart failure miss out on palliative care

May 05, 2017

More than 60,000 people die of heart failure each year in the UK, but they form only around four per cent of people supported by specialist palliative care and hospice teams, according to a new report launched today.

The report by Hospice UK and the British Heart Foundation, in collaboration with the new Wolfson Palliative Care Research Centre at the University of Hull, highlights how people living with advanced heart failure can benefit from personalised palliative care to help manage their symptoms, plan for the future and vastly improve wellbeing in their final months.

The report entitled Heart failure and hospice care: How to make a difference focuses on the significant palliative needs experienced by people with heart failure and their families. However, few are being referred by GPs and hospital teams for specialist care provided by hospices and hospital palliative care teams. This results in people with heart failure accessing palliative care too little, too late.

Professor Miriam Johnson, Professor of Palliative Medicine at Hull York Medical School and Director of the Wolfson Palliative Care Research Centre, at the University of Hull, who led the project believes it will make a huge difference to those individuals and their families who are living with heart failure.

She said: “Palliative care for cancer patients is well established – but the situation for those suffering from heart failure is very different. What this report highlights is that this does not have to be the case. 

“Clinicians are often reluctant to initiate conversations about limitations in treatment or future concerns, despite recognisable signs that the disease is getting worse for fear of taking away hope when further deterioration is uncertain.

“Through this report we aim to encourage communication and collaboration between GPs, palliative care providers and hospices to ensure that heart failure patients and their families can access the care and support they want, need and deserve. “

The report calls on hospices to lead a more integrated approach and proactively forge local relationships with healthcare professionals in cardiology, primary care and those involved in the care of older people to help support earlier referrals.

Some hospices are already leading successful multi-agency partnerships with local NHS trusts and other carer providers to improve care for people with advanced heart failure. This helps to identify people who may benefit from palliative care at a much earlier stage, and has led to better advance care planning and less time spent in hospital.  

Dr Ros Taylor, MBE, Clinical Director at Hospice UK said:

“Heart failure causes really challenging physical symptoms and profound emotional distress. People become breathless and tired and unable to do the things that matter most to them. Palliative care can make a huge difference to patients and their families, but sadly too few people are getting this support and are not being referred early enough and often only in their final days.

“This report highlights inspiring examples of how hospices and palliative care teams are working successfully in partnership with local cardiology colleagues to have a real impact on people with heart failure. We need greater collaboration across different care settings to ensure more people get the right care at the right time.”

Dr Mike Knapton, Associate Medical Director at the British Heart Foundation, said:

“There are over half a million people across the UK living with heart failure - a debilitating condition which, in severe cases, can have a worse life expectancy than many cancers.  Up to a third of patients admitted to hospital with heart failure will die within twelve months.

“Specialist hospice services provide an integrated community-based approach to help people and families though the process of dying, death and bereavement.

“Research has provided a much better understanding of heart failure and its treatment, and providing optimal evidence based treatments with compassion and kindness is the what all patients should expect”

Notes to editors

  • A copy of the report Heart failure and hospice care: How to make a difference can be found in the Publications section of Hospice UK’s website
  • The four per cent figure is based on the most recent Minimum Data Set (MDS) report 2014/15 which states the number of people with heart failure supported by hospices and palliative care teams , both in the community and in inpatient beds. The MDS report is based on a representative sample of specialist  palliative care services. Sources for the key statistics provided can be found on P.40-41 of the report.
  • The hospice care sector supports approximately 200,000 people with terminal and life-limiting conditions in the UK each year according to the Hospice Care in the UK 2016 report
  • The report contains several examples of hospices such as Saint Catherine’s in Scarborough which has an integrated heart failure palliative care service. It enables people with heart failure to have access to any part of the palliative care service they need including day hospice, hospital inpatient or home visit medical review and hospice at home. It also runs a 24 hour helpline for advice for patients in the community.  
  • Thanks to the generosity of St. James’s Place Foundation, Hospice UK is managing a £500,000 grant programme to support a hospice-enabled approach to heart failure care.
  • The National Garden Scheme (NGS) generously supports many of Hospice UK’s key clinical projects including this publication.

About Hospice UK

  • Hospice UK is the national charity for hospice care and the only membership body for organisations providing hospice care. We support and champion the work of more than 200 of these organisations across the UK.
  • Hospices, and other organisations which provide hospice care, offer vital care for people with terminal or life-limiting conditions and also support their families and carers.
  • For further information about hospice care visit our website www.hospiceuk.org or follow us on Twitter @hospiceukPA.
  • Get all the latest news from the hospice and palliative care sector, as well as patient stories, on ehospice UK at: www.ehospice.com/uk This service is managed by Hospice UK. You can also follow ehospice news on Twitter at @ehospicenews

About the British Heart Foundation

For over 50 years we’ve pioneered research that’s transformed the lives of people living with heart and circulatory conditions. Our work has been central to the discoveries of vital treatments that are changing the fight against heart disease. But so many people still need our help. From babies born with life-threatening heart problems to the many Mums, Dads and Grandparents who survive a stroke or heart attack. Every pound raised, minute of your time and donation to our shops will help make a difference to people’s lives.

Find out more at bhf.org.uk

About the Hull York Medical School and the Wolfson Palliative Care Research Centre

Hull York Medical School (HYMS) is a partnership between the two well-established Universities of Hull and York. Since opening in 2003, HYMS has become known as one of the UK’s most welcoming and inclusive medical schools with a reputation for innovative, inspiring, exciting and rigorous medical education. We are committed to ensuring that our students graduate from Hull York Medical School as excellent thinkers, evidence based practitioners and patient-centred communicators who are thoroughly prepared for clinical practice.

The Wolfson Palliative Care Research Centre is at the heart of the University of Hull’s £28 million health campus. Made possible by a £2.4 million investment by the Wolfson Foundation, the Centre aims to improve the quality of people’s lives and reduce inequality in palliative care. Professor Miriam Johnson is Director of the Centre and Professor of Palliative Medicine at Hull York Medical School. She has, together with her fellow researchers, been at the forefront of internationally recognised work on palliative care research for a number of years. The Centre will build on this work and help to establish the University of Hull and Hull York Medical School as world leaders in this field.

For Hull York Medical School media enquiries contact Sarah Fewster, Marketing and Communications Manager, T: 01482 463341 M: 07484 904154

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