Heart failure patients’ and care givers’ experiences and expectations of end-of-life conversations and palliative care provision, and community heart failure nurses’ perspectives on implementation into clinical practice.

Heart failure is a long-term condition, and is often terminal. The researcher’s clinical experience has highlighted a reluctance from clinicians to have discussions about dying with these patients. To obtain heart failure patients’ and carer givers’ experiences and expectations of end-of-life conversations and palliative care provision. It further aimed to explore from the perspective of community heart failure nurses how these preferences can be implemented into clinical practice to improve patient care. This co-produced study used qualitative interviews and focus groups from a nationally sourced sample. The study recruited 19 cases consisting of 8 heart failure patients, 2 carer givers and 9 community heart failure nurses all of whom had taken part in end-of-life conversations relating specifically to heart failure. Patients and carer givers described a need to be informed regarding their disease and prognosis. A lack of such information impacted on their abilities to rationalise the illness, or prepare for the deterioration in their condition. Those participants that were provided with ongoing conversations described the formation of a patient-healthcare professional relationship, which gave them confidence to take control of their illness and care. These themes were presented to community heart failure nurses, to establish how these findings can be implemented into clinical practice to improve patients experiences of heart failure communication. They identified barriers preventing end-of-life conversations, including active avoidance, lack of role definition, and apprehension to initiate these discussions. They supported the need for a working partnership with their patients and carers to provide reassurance and confidence in providing this care. There is a pressing need to formulate specific end-of-life and palliative care guidance and policy specific to the unstable heart failure disease trajectory to reduce the variation in practice and confidence to talk about terminal illness.