Professor Miriam Johnson leads palliative care research project with British Heart Foundation and Hospice UK

Professor of Palliative Medicine Miriam Johnson

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.”