Patients living with heart failure are set to benefit from a new charity funded study in Leeds that aims to help them receive better care and support earlier as they approach the end of life.

Heart failure affects more than one in ten people over the age of 70 and around a third of patients admitted to hospital with the condition die within a year. Despite this, many people miss out on palliative care support, often because their needs are identified too late.

Dr Sam Straw, Honorary Cardiology Registrar at Leeds Teaching Hospitals NHS Trust, has been awarded funding to lead the project as part of a joint research programme supported by Marie Curie, Leeds Hospitals Charity and Royal Brompton & Harefield Hospitals Charity.

The study will investigate how healthcare professionals can better identify people with heart failure who may be nearing the end of life, helping ensure they receive the care, support and planning they need sooner.

Researchers will focus on the use of a simple assessment tool known as the 'Surprise Question', which asks clinicians whether they would be surprised if a patient were to die within the next year. It is hoped that this approach may help healthcare teams recognise patients who could benefit from additional support and conversations about their future care.

Dr Sam Straw, NIHR Academic Clinical Lecturer in Cardiology at University of Leeds and Honorary Cardiology Registrar at Leeds Teaching Hospitals NHS Trust said:

“As clinicians, we know that people living with heart failure often experience symptoms as severe as those seen in many cancers, yet far too few are offered the supportive and palliative care that could really improve their quality of life.  One of the key challenges is that heart failure can follow an unpredictable course, making it harder to identify when patients would benefit from additional support.

“This research will help us address this by giving clinical teams a simple, practical way to recognise needs earlier and start important conversations sooner.  By embedding this approach into the specialist treatment and care that is provided in hospitals, we hope to ensure that more patients and their families receive the right support, at the right time, throughout their illness.”

The project will review existing evidence and will be a collaborative project working with clinicians, researchers, and people with lived experience to develop practical ways of improving care. This could include linking the Surprise Question to a structured assessment of a patients physical, emotional and practical support needs.

One patient from Yorkshire reveals how it’s important for patients to be offered the option of palliative care at the right time.

Ian Thompson, 79, from Pontefract had experienced cardiac health issues for a number of years and was receiving care at Leeds Teaching Hospitals.  In 2020, his condition deteriorated and he was advised by clinicians that he had just three months to live unless an alternative treatment option was found.  While Ian remained optimistic despite the uncertainty, his family found the potential prognosis extremely worrying.

He said:  “I had a history of cardiac health issues and was under the care of specialists at Leeds General Infirmary for a number of years.  Sadly, in 2020, my condition worsened and open heart surgery was no longer suitable for me.  My consultants delivered the news that unless alternative treatment was found, I had just three months to live.”

Ian’s wife, Christine Thompson, commented: “While Ian remained optimistic during this time, I feared the worst.  Ian is a husband, father and grandfather and the thought of losing him was horrendous.  Receiving specialist palliative support and guidance during that time would have helped my children and I navigate an incredibly difficult emotional time.”  

Ian was referred to specialists and successfully received treatment.  Six years later, he continues to have regular monitoring for his condition and now helps to support clinical research trials.  Ian and Christine are now active members of NIHR Clinical Research Facility: Leeds’ Cardiovascular Patient and Public Involvement and Engagement (PPIE) group which involves using their own experiences to help shape clinical research and ensure studies focus on the needs and priorities of patients and the public.

The research forms part of a wider programme announced by Marie Curie, which has funded six new projects focused on improving palliative and end-of-life care in hospitals and when patients are discharged into the community.

Rebecca Baldaro-Booth, Director of Grants and Impact at Leeds Hospitals Charity, said:

"Too many people are still missing out on the care and support they need at the end of life, and often individual needs are identified too late. Through this joint funding call, we're investing in research that can help spot needs earlier, improve coordination between hospital and community care, and tackle persistent inequalities in access.

"By working alongside clinicians, researchers and people with lived experience, evidence can be turned into practical solutions that ensure everyone can receive high-quality, compassionate care when and where it matters most."

Dr Sabine Best, Associate Director, Research Management and Impact at Marie Curie, said:

“Too many people with conditions like heart failure miss out on the support they need at the end of life. This research will help build the evidence base on how we can identify people earlier and make sure everyone with palliative care needs receives high quality, coordinated care when it matters most - regardless of their illness, where they are or who- they are.

“While only 6% of people in England and Wales say they would prefer to die in hospital, more than 40% of deaths still occur there. All our newly funded projects aim to address important evidence gaps for palliative and end of life care in, and upon discharge from, hospital that have been highlighted by people with lived and professional experience. Our aim is for palliative and end of life care to reach more people, and to close the gap in end of life care.”

This study is supported by NIHR Clinical Research Facility:  Leeds and NIHR Biomedical Research Centre: Leeds.  It will commence in Summer 2026 involving patients and clinicians at Leeds Teaching Hospitals.