Aim. This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers.
Background. Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers.
Methods. Focused interviews were conducted with 10 older people with advanced heart failure and their nominated informal carer identified from one district general hospital in the United Kingdom (UK). Joint interviews were conducted with patients and carers in their own home. Thematic analysis was used to identify themes and subthemes.
Findings. Heart failure affected all aspects of the lives of patients and carers and, in particular, curtailed everyday activities. Patients were very concerned about the ‘burden’ their illness placed on their carer, who in all cases was their partner, although carers did not conceptualize the situation in this way. The socially isolating influence of the condition on both patients and carers was compounded by lack of professional input, and confusion about diagnosis was evident. Concerns about the future were common and, although few participants reported having been explicitly told about their prognosis, many made realistic statements about their limited life expectancy.
Conclusions. This older cohort of people suffering from heart failure appears to have needs not unlike those of patients with ‘terminal diseases’. When people are diagnosed with more familiar terminal illnesses, in particular cancer, they are given ongoing explanations, reassurance and support. Similar professional input is needed for patients with advanced heart failure and their carers.