Living with an Unfixable Heart: A Qualitative Study Exploring the Experience of Living with Advanced Heart Failure

Abstract

Background: Nurses working with patients with advanced heart failure need knowledge that will help us to help patients cope with their situations of chronic illness. However, our knowledge bank is deficient due to the scarcity of inquiry that takes the affected person's point of view as its central focus. Aim: The aim of this study was to describe patients' experiences of living with advanced heart failure. Methods: The study sample ( N = 9) consisted of male ( N = 6) and female ( N = 3) patients with advanced (NYHA classes III–IV) heart failure. The design was qualitative and open unstructured interviews were audio-taped and transcribed verbatim during 2006. Results: Four main themes emerged: Living in the Shadow of Fear; Running on Empty; Living a Restricted life; and Battling the System. The experience of living with advanced heart failure was described as a fearful and tired sort of living characterised by escalating impotence and dependence. Conclusions: The findings suggest that there may be an illogical but enduring ethos of ‘cure’ pervading health care worker's attitudes to advanced heart failure care. This mindset might be working to hinder the application of additional or alternative therapies, which might better palliate the physical and psychosocial distress of patients.