A diagnosis of heart failure carries a poor prognosis. Approximately one-third of patients diagnosed with the condition will be dead after 12 months1,2 and 5-year survival rates following a first hospital admission for heart failure have been estimated at 25%.3 However, a number of recent qualitative studies have found that a substantial proportion of patients with a diagnosis of heart failure do not understand the nature and seriousness of their condition, in part due to a lack of information supplied by healthcare providers and use of the poorly understood term ‘heart failure’.4–6
In a community-based study in Scotland, Murray et al5 compared the experiences of 20 patients with inoperable lung cancer and 20 patients with advanced heart failure, along with those of their main informal and professional carers. In contrast with cancer patients, it was reported that patients with heart failure rarely recalled being given any written information and had a poor understanding of their condition and its symptoms. Prognosis was hardly ever discussed and there was little acknowledgment that end-stage cardiac failure is a terminal illness. In addition, patients and carers reported that they did not feel involved in decision making or encouraged to work in partnership with professionals.
It has been reported that patients with heart failure believed that doctors would not want to talk about the patient's likely death or give them too much information about their illness and treatment,6 and that …