Heart failure-the experience of living with end-stage heart failure and accessing care across settings

Background Heart failure is a complex clinical syndrome affecting an increasing number of the ageing population. Patients and carers require increasing input from specialist palliative care services to both manage symptoms and access support in the last year of life. An integrated clinical service between the local cardiology team at Princess Royal University Hospital and the palliative care team at St. Christopher's Hospice was piloted for patients with end-stage heart failure in Bromley in Kent, UK. This study explored views of patients and carers who participated in the integrated pilot service. Methods A qualitative study was conducted in which a convenience sample of patients and carers were invited to participate in focus groups: two bereaved carer groups (n=2, n=2); one patient group (n=4), held between 14th December 2018 and 18th January 2019. Participants were asked to describe their experiences of care received facilitated by a topic guide. Interviews were recorded, transcribed and coded using thematic analysis to identify common themes. Results Four patients (2:2 M:F) aged between 70 to 87 years and four female carers whom had cared for patients aged between 70 to 96 years who were since deceased, participated in this study. Overall, the service was positively received, and responses were mapped into four key areas; being diagnosed and living with heart failure, referral to palliative care, key helpful components of the care received and finally, unhelpful components of the new service in terms of care. Common themes emerged including understanding of heart failure and its trajectory, communication around palliative care, having a 'broker' for the system, recognition of carer's needs, service responsiveness, and feeling 'in control'. Conclusions This qualitative study highlighted important considerations when developing an integrated heart failure and palliative care service. Education about heart failure for patients and carers, but also the integrated multidisciplinary team is crucial to improving detection of deterioration and facilitating communication around Advance Care Planning. The value of the 'expert-carer' should also be promoted and supported in chronic conditions. We recommend a focus on development of integrated services that enable joined-up care or single point of contact for patients and carers.