Award-winning project expands access to end-of-life care

Last month the Supportive Care team won the Sir Mansel Aylward Person-Centred Care Award at the NHS Wales Awards 2024. 

This innovative service has broadened access to end-of-life care for patients with kidney, liver, and interstitial lung disease, redressing barriers to palliative care for those without a cancer diagnosis. The team were recognised for their work putting patients at the centre of decisions, services, and their own care.

The service is led by Clea Atkinson, Lead Consultant in Palliative and Supportive Care who joined Cardiff and Vale UHB in 2015 after a decade as a Hospice Consultant. The project began when Clea met Consultant Cardiologist Professor Zaheer Yousef. He was concerned that the end-of-life care he was able to provide for patients with advanced heart failure fell short of the quality of care that he’d been able to offer up to that point. They worked together to determine how to extend Palliative Care more effectively to heart failure patients.

Clea explains: “Palliative Care arose as a speciality around the needs of cancer patients, and we are very good at delivering Palliative Care to patients who have a cancer diagnosis. But we are not so good at fitting our model of care to those who don’t have cancer.

“Palliative Care is often offered to a patient with cancer once all other treatment options are exhausted. But this is not the case for heart patients whose quality of life can still benefit from interventions and treatment. So, the Palliative Care team has to meet these patients much earlier upstream.”

By working closely together, Clea and her colleagues built trust with the Heart Failure clinicians. Together they were able to balance treatment and medication to improve quality of life, whilst also gradually working towards end of life care.

“We changed the name from Palliative Care to Supportive Care, because it was distinctly different. It’s a blend of active ongoing management alongside Palliative Care, all wrapped up in a person-centred approach because there’s no one size fits all.”

The National Institute for Health and Care Research invited the team to participate in a research project to establish what the best approach for end-of-life care is in advanced heart failure. Clea said: “They concluded that a Supportive Care model would be considered the gold standard, and we were cited as exemplar service.”

The Supportive Care team is a small but growing multi-disciplinary team with Clinical Nurse Specialists, Doctors and Allied Health Professionals. In 2022, building on their work with heart patients, they received funding from Welsh Government to replicate the approach for three other life-limiting conditions – advanced kidney disease, interstitial lung disease and advanced liver disease.

Clea explains: “The majority of liver disease patients present in the last year. Mortality is so high that it makes so much sense for Supportive Care to be involved from the outset. And with renal patients, it makes huge sense, because basically the only treatment for advanced renal disease is dialysis and that just is not the right treatment for lots of people who are, say, over 70, because it's a very burdensome treatment. So being able to give a different choice is really important.

“This is all about giving choices. Nobody is ever prevented from coming into hospital and being assessed for acute interventions, same as they were when they were 30. But it's about informing people, helping them understand their situation and offering them something else.”

By engaging with patients earlier, Clea and her team are able to sit down and discuss options. This can spare patients and their families from being suddenly confronted by difficult decisions at a more advanced stage, and gives the option of home-based end of life care rather than being reliant on emergency medicine.

Over an 18-month period, 205 patients were referred to the service. During the last year of life, these patients spent 1,211 fewer days in hospital despite their condition progressing, compared to a control group. 100% of those surveyed said the service was delivered with compassion and they would recommend it.

“It's about listening to what really matters. Once people fully understand the situation that they're in, they sometimes make different choices. I say to a lot of people, you know, you only actually die one day. So, this service is about helping you live the best you can.”