Living with advanced heart failure: a prospective, community based study of patients and their carers

BACKGROUND: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. AIM: To describes how patients and carers view health and social care in the last year of life. METHODS: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. RESULTS: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. CONCLUSIONS: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.