Heart failure and hospice care

Over 900,000 people in the UK live with heart failure [1]. The need for hospice care support has never been greater.

There is extensive evidence that people living and dying with advanced heart failure face similar levels of distress to those dying of cancer. For some, it is more severe. Yet very few patients are referred for palliative or hospice support by their primary care or hospital cardiology teams.

- review their provision of care for people with heart failure 

- take new steps to work collaboratively with their colleagues in cardiology, care of older people, primary care and others. 

Included in this publication are practice examples from innovative services and perspectives from patients, carers and commissioners.

The guide was developed in collaboration with Professor Miriam Johnson, Director of the Wolfson Palliative Care Research Centre, and supported by the British Heart Foundation and the National Garden Scheme.

Heart failure is a clinical syndrome characterised by typical symptoms such as breathlessness and fatigue.

These may be accompanied by physical signs, for example raised jugular venous pressure, pulmonary crackles and peripheral oedema such as ankle swelling.

They may be caused by a structural and/or functional cardiac abnormality, resulting in a reduced cardiac output and/or elevated intracardiac pressures at rest or during stress.

Essentially, the heart pump is no longer working efficiently. There is often no single cause, although the underlying cause for the pump failure influences the disease course.

For many people, particularly older people, heart failure is not always the primary or main problem. Despite an increasing range of sophisticated medical treatments, the symptom burden for people with heart failure remains high and is often unaddressed. The quality of life for many is poor and places a strain on their family caregivers.

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

Although there are examples of hospices providing care for people with heart failure, the majority of people cared for by hospices are still those with cancer. Emerging evidence suggests that people with heart failure benefit from specialist palliative care.

By opening hospice services up to people with heart failure, we hope that the quality of life and death will be improved for them and a current serious inequity in care addressed.

The economic and personal cost of heart failure is significant, largely driven by hospital admissions which are frequent and prolonged. 

There may be many years of cardiac ill-health with no definitive moment where ‘end stage heart failure’ is diagnosed. Thus from the beginning of the condition, communication may be unclear.

Many people would prefer to be cared for at home, but admissions may occur because of a ‘revolving door’ pattern. This is often associated with an uncertain disease trajectory coupled with multi-morbid conditions in the absence of coordinated alternative, supported care options.

Heart failure has a serious impact on family and friends providing informal care, over a prolonged period of time, with little support or training.

Conversations about treatment options are complicated. Patients and carers can feel overwhelmed by a professional’s agenda driven by best practice guidelines.

Most people and families living with advanced heart failure do not get the opportunity for advance care planning which could help address their needs and support preferences for care. A fundamental barrier to access is a poor understanding of heart failure as a life-shortening illness.

There are several incremental steps that commissioners can take to help improve hospice services for people affected by heart failure.

1. British Heart Foundation. Facts and Figures [Internet]. 2023 [cited 2023 Mar 09].