The lived experience of end-stage cardiac failure

BACKGROUND: Clinical trials rarely explore the patient's lived experience. Qualitative research bridges the gap between evidence-based medicine and the patient's journey. OBJECTIVE: The aim of this article is to explore key aspects of the lived experience of patients with end-stage heart failure (ESHF). This will allow clinicians to better engage with patients and carers faced with this condition. DISCUSSION: Psychological and spiritual distress are common in ESHF. Patients with ESHF often feel socially isolated. Inadequate communication from clinical staff is a common negative experience for patients to which they frequently resign themselves. The ambiguous illness trajectory in advanced heart failure makes both general practitioners and cardiologists uncomfortable initiating advance care planning and less sure of their roles in these discussions. Patients have spiritual concerns that they reportedly feel awkward raising during consultation. Attention to these concerns will help build rapport and provide more personalised care for patients with ESHF.