Heart failure and hospice care: how to make a difference

People with heart failure, and those family members and friends who care for them, have a high burden of unmet palliative care needs but have poor access to hospice services. 

Although there are examples of hospices providing care for people with heart failure, the vast majority of people cared for by hospices are still those with cancer. This is despite emerging evidence that people with heart failure benefit from specialist palliative care. By opening hospice services up to this group of people, we hope that the quality of life and death will be improved for them and a current serious inequity in care addressed. 

We hope this guide will encourage hospices to review their provision of care for people with heart failure and to take new steps to work collaboratively with their colleagues in cardiology, care of older people, primary care and others. There are several practice examples and numerous perspectives from patients, carers and commissioners. 

Key points for change 

• Incremental steps are often needed, starting with a behavioural shift to allow the formation of new relationships between clinical services. 
• Hospices should be involved in service design and delivery for patients with heart failure. 
• Mutual training and education should enable:
  »heart failure, care of older people and primary care teams to provide a generalist palliative care assessment and management
  »hospice staff to be competent in basic cardiac care supported by their cardiac teams. 
• Hospices should be accountable to commissioners, providing audit data regarding provision for people with heart failure, agreeing realistic service improvement targets. 
• Understand the strengths of hospice care and where it can make a significant difference throughout the heart failure trajectory.

Acknowledgements

We would like to thank everyone who contributed to this publication and to the British Heart Foundation and the National Garden Scheme for supporting its production.

Project leads

• Professor Miriam Johnson – Professor of Palliative Medicine, Centre for Health and Population Sciences, Director, Wolfson Palliative Care Research Centre, University of Hull
• Dr Trish Green – Senior Research Fellow, Centre for Health and Population Sciences, Hull York Medical School, University of Hull
• Dr Ros Taylor – Clinical Director, Hospice UK

Contributing authors

• Mary Brice, Senior Researcher Heart Failure, St Christopher’s Hospice, London
• Dr Sharon Chadwick – Medical Director, Hospice of St Francis, Berkhamsted, Macmillan Consultant in Palliative Medicine, West Hertfordshire Hospitals NHS Trust
• Dr Karen J Hogg – Consultant Cardiologist Glasgow Royal Infirmary & Honorary Senior Lecturer The University of Glasgow
• Professor Miriam Johnson – Professor of Palliative Medicine, Centre for Health and Population Sciences, Director Wolfson Palliative Care Research Centre, University of Hull
• Yvonne Millerick – Heart Failure Palliative Care Nurse Consultant, Lecturer Glasgow Caledonian University and NHS Greater Glasgow and Clyde

Expert review group

• Dr John Baxter – Consultant Geriatrician, Sunderland Royal Hospital
• Dr James Beattie – Consultant Cardiologist and Heart Failure Lead, Heart of England NHS Foundation Trust
• Lynda Blue – Heart Failure Nurse Advisor, Guy’s and St Thomas’ NHS Foundation Trust London
• Dr Charles Daniels – Medical Director, St Luke’s Hospice, Harrow, Macmillan Lead Consultant in Palliative Medicine, London Northwest Healthcare NHS Trust
• Dr Mike Knapton – Associate Medical Director, British Heart Foundation
• Annie MacCallum – Head of Specialist Services, Gloucestershire Care Services NHS Trust
• Professor Bill Noble – Executive Medical Director, Marie Curie

Published by Hospice UK in May 2017.