The Journey Continues

Improving care
for patients
with advanced
stages of
heart failure

Aim
People living with heart failure often face complex challenges; not just physically, but emotionally and socially too. At the heart of the Palliative Heart Synthesis project is a simple but powerful aim: to help improve the care and support that people with advanced stages of heart failure receive, by bringing together the strengths of palliative care and heart failure services.

Building On Our Findings
The second stage of this project builds on the work completed in our first study, published in 2023. Led by researchers at Queen’s University Belfast, in partnership with Oxford University, the original project reviewed over 130 international studies to understand how integrated care works, for whom, and under what circumstances.

Findings from Stage 1:

What matters most
for integrating care?

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Protected Time
for Education

Clinicians at all levels, from undergraduate students to practicing professionals; need dedicated time for learning about the benefits and practice of integrating palliative care.

Flexible Learning
Opportunities

Offering training in a range of formats and at varied times makes it easier for healthcare staff to participate.

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FlexibleLearningIcon

Flexible Learning
Opportunities

Offering training in a range of formats and at varied times makes it easier for healthcare staff to participate.

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Clear Communication
of Benefits

Highlighting the value of integrating palliative care helps build understanding and buy-in among professionals.

Credible
Champions

Identifying trusted professionals and community voices to advocate for integrated palliative care can influence how services are delivered.

Credible
Champions

Identifying trusted professionals and community voices to advocate for integrated care can influence how services are delivered.

Accessible
Guidelines

National guidelines on integrated palliative and heart failure care need to be easy to access and embed in everyday clinical practice.

Next Steps:

Putting Knowledge into Practice

While Stage 1 told us what the evidence says, Stage 2 will focus on what’s happening in practice.

We will work with those who have direct experience of integrating palliative and heart failure services in the NHS. 

 

This next phase will:

Test and refine our understanding of what works, for whom, and in what circumstances.

Explore the real-world challenges of setting up and sustaining integrated care.

Help shape practical, actionable ways to embed integrated palliative care and heart failure care models across the UK.

Why it Matters

Heart failure is a complex, life-limiting condition; and the way we deliver care matters. By combining palliative and heart failure services in a thoughtful, evidence-informed way, we can improve the lives of patients, families, and the professionals who care for them.

Terminology Definitions

What do we mean by heart failure and palliative care? Both are difficult terms in that they each evoke different meanings and images among both patients and professionals.

In simple terms, heart failure means that the heart is unable to pump blood around the body properly. It usually happens because the heart has become too weak or stiff. Heart failure does not mean your heart has stopped working. It means it needs some support to help it work better. It cannot usually be cured, but the symptoms can often be controlled for many years Heart failure – NHS

The World Health Organisation also provide a clear explanation of what palliative care is.

Palliative care is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness. Palliative care provides additional support for hard to manage pain and any other needs as they arise, whether that be physical, psychosocial or spiritual. It is most effective when considered early in the course of illness.

Please also see Some Thoughts on Terminology from a patient view.

This special issue paper was written by Mr John Burden, our Patient Partner, following discussions on potential barriers to integration of palliative care in heart failure management. This is an interesting piece that includes a little bit of history, and lots of food for thought!