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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 patients believed some healthcare providers were unwilling or unable to give them the information and guidance they required.4 In addition, a study based in a Barcelona hospital suggested that doctors caring for patients with heart failure rarely discussed end-of-life issues.7
There is evidence that many patients with heart failure do want more information. In a UK-based qualitative study of 27 patients with heart failure in secondary care, Rogers et al6 found that patients with heart failure would welcome timely and frank discussions about their prognosis and have questions about their condition that they feel unable to ask their doctors. These findings are consistent with a study of 62 primary care patients with heart failure in New Zealand, which found that 20% of patients wanted improved information and that 60% lacked a basic understanding of their condition.4
In the first of these studies, confusion about the nature of heart failure and prognosis was encapsulated by one patient as follows:
‘I mean if your heart is damaged, its not working as well as it should be working. But if your heart's damaged, does it deteriorate more over the years or does it remain at that level? Do you know what I mean? Is it terminal?’6
Another patient described a feeling of being kept in the dark by their doctors:
‘I think they like to keep things away from the patient. Like if I were to say to them, “will I see the millennium in?” they won't answer that sort of question.’ 6
Current guidance produced by the European Society of Cardiology on the management of heart failure indicates that patients and their close relatives should be given general advice about the condition, including an explanation of what heart failure is, why the symptoms occur, what causes it and the prognosis, as well as counselling about the effects of medication and advice on health behaviour.8
A number of reasons have been put forward to explain why this guidance may not always be implemented in practice. Informing patients about their diagnosis and the likely progression of their illness, as well as providing general information about heart failure, is complicated by the complex and loosely defined nature of the disease, which can encompass conditions ranging from asymptomatic cardiac dysfunction to end-stage heart failure.9 There are also difficulties associated with reliably diagnosing heart failure in primary care,10,11 a lack of good prognostic indicators8 and problems in accurately identifying the terminal phase of the condition.12
With regards to diagnostic uncertainty, echocardiography is required to make a definitive diagnosis of heart failure8 and a lack of access to echocardiographic services has been identified as a barrier to the effective management of heart failure in general practice.11 However, rapid access echocardiography services are now becoming more widely available.
Healthcare professionals have expressed reservations about using the term ‘heart failure’, which is considered too emotive.4,6,9 A study based in a UK general practice suggests that this belief is well founded. Tayler and Ogden13 reported that patients whose doctors used the term ‘heart failure’ in discussing their diagnosis, rather than a euphemism, believed that the illness would have more serious consequences, a longer duration and be more variable. These patients were also more likely to report feeling anxious and depressed. Doctors in the study were therefore presented with a dilemma as to whether they should seek to protect their patients by using euphemisms or ensure openness by employing the more direct term ‘heart failure’.
Patient factors are also important. A lack of understanding may be partially explained by evidence that patients with chronic heart failure have difficulty retaining and appreciating the relevance of information provided to them and report confusion and short-term memory loss as ‘symptoms or side-effects’ of their illness.14 It has also been reported that patients with heart failure are sometimes unwilling to openly acknowledge their diagnosis and its implications.6
Ensuring effective communication with patients who have heart failure is a major challenge and the lack of openness that some patients perceive may be related to the difficulties faced by doctors in sharing information about prognosis and the nature and course of the condition that may be vague or misleading. Nevertheless, the literature suggests that there could be room for improvement in discussing prognosis, educating patients with heart failure about their condition and addressing end-of-life issues.4–7
Good communication is implicit in the model of chronic disease management increasingly being applied to the management of cardiorespiratory conditions in primary care, which aims to educate patients about their condition, including how and when to seek help.15 In general, there is evidence that open communication increases patient compliance, reduces morbidity and improves patient outcome, while a lack of openness can impair trust between patient and doctor and hence reduce quality of care.16
Openness and patient education are essential in ensuring that patients can make informed decisions. This is only possible when patients possess some knowledge about their condition and its likely progression, enabling them to weigh the benefits of available treatment options with the potential risks. Discussion of prognosis is important in allowing patients and their families to plan for the future, which, in advanced heart failure, may include end-of-life care planning.
Patient demand, management guidelines, ethical considerations, and current models of chronic disease management all suggest that healthcare professionals need to improve communication with patients who have a diagnosis of heart failure. The availability of new tools to diagnose and predict accurately the progression of heart failure will assist clinicians to this end, as could replacing the emotive and misleading expression ‘heart failure’ with a more appropriate term. Meeting the challenge of discussing heart failure with patients is vital to improving management of this distressing and increasingly prevalent condition.