Palliative care for cancer patients in the UK is well established – but the situation is starkly different for those suffering from heart failure. A recent service evaluation led by the University of Hull and Hull York Medical School (HYMS) shows this doesn't have to be the case – particularly if clinicians have the courage to talk about death with their patients.
The study – published today (May 17) in the British Journal of Cardiology – describes data from two areas in Yorkshire where palliative care and heart failure services are fully integrated – Bradford & Airedale and Scarborough. The results show that integrated team work can reduce unwanted hospital deaths for heart failure patients, enabling many to die where they prefer.
The study was led by Dr Miriam Johnson, Reader in Palliative Medicine at the University of Hull and HYMS and Honorary consultant at St. Catherine's Hospice, Scarborough: "There's long been a perception that you can't talk to heart failure patients about death mainly because it's seen as difficult to predict when patients are close to end of life. However, our work shows that many heart failure patients are able to have honest discussions with their clinicians about their prognosis and appreciate the opportunity it provides for them to make plans and set their affairs in order."
The team found that heart failure specialist nurses were able to recognise when patients were nearing end of life in the vast majority of cases and discuss the issues with them. Over two thirds of patients put plans in place for end of life and stated where they wished to die – most choosing to be at home – and their preferred place of death was achieved in 61% of cases.
Over half of all patients accessed specialist care services compared to the 2011 National Audit Office figures of just 4% overall in the UK, but Dr Johnson stresses that the national figures are not completely reliable.
"Unfortunately the systems in hospitals for registering where patients access palliative care aren't well-established, so we need to take these figures with a pinch of salt," she said. "However, the lack of good reporting mechanisms itself may indicate that many hospitals do not perceive palliative care provision for their heart failure patients as a priority."
In the services assessed for the study, much of what would be called palliative or end of life care was actually delivered by the specialist cardiology nurses and Dr Johnson says this aspect is very important when managers are looking at designing and developing similar services.
"The specialist nurses hold a pivotal position within the integrated services," she says. "They have an ongoing relationship with patients both in hospital settings and in the community and so are best able to judge when patients are nearing end stage disease, are best placed to have those difficult conversations with patients, bring in specialist palliative care clinicians where necessary, and are on hand to help ensure patients' preferences are taken into account.
"However, although this means that it is often within the skills of cardiology teams to deliver palliative care to their patients, the extra time nurses need to spend with patients to work through these difficult decisions must be taken into account when managing workload."