Time to re-think the terminology of heart failure?

What does the term ‘heart failure’ commonly mean to patients? Do they think of a heart attack? Or imminent cardiac death? Does the term evoke fear, panic or disappointment? Or do patients know that you can live with heart failure every day? Confusion and misconceptions around the meaning of this term and the specificity of diagnosis can have huge implications for people living with heart failure, their families and friends, and public perceptions of this complex clinical syndrome. Through this editorial, we pose the question – Is it time we consider more patient-centric, appropriate terminology for ‘heart failure’, or critically address health literacy needs of the public in relation to heart failure? Approximately 1–2% of the population in developed countries around the world are living with heart failure, with the prevalence increasing to 10% or greater in people over 70 years. The European Society of Cardiology (ESC) defines heart failure as: A clinical syndrome characterised by typical symptoms (e.g. breathlessness, ankle swelling and fatigue) that may be accompanied by signs (e.g. elevated jugular venous pressure, pulmonary crackles and peripheral oedema) caused by a structural and/or functional cardiac abnormality, resulting in a reduced cardiac output and/or elevated intracardiac pressures at rest or during stress.1 Only since the 1990s has heart failure been recognised as a syndrome rather than a disease, more accurately reflecting its effects on the neuroendocrine and neurohormonal systems, peripheral muscles, kidneys and the gut.2 The term ‘heart failure’ is likely to have come from an early definition provided by the pioneer cardiologist Sir Thomas Lewis in 1933: ‘A condition in which the heart fails to discharge its contents adequately’.3 At this point, heart failure was still considered a disease that started and ended with the heart. Currently, the term ‘heart failure’ is used to describe what is recognised as a complex clinical syndrome.4 This means that it is not a single, well-defined disease, but rather a group of signs and symptoms (caused by the neuroendocrine, neurohormonal, peripheral muscle and kidney effects) that collectively indicate the presence of heart failure. This is perhaps why a range of terms is frequently used to describe heart failure, often reflecting different aetiologies and characteristics, but also used synonymously with the term ‘heart failure’. Other common labels include congestive heart failure, cardiac failure, decompensated heart failure, worsening heart failure, advanced heart failure, dilated cardiomyopathy, idiopathic cardiomyopathy, congestive cardiomyopathy, right heart circulatory failure, left ventricular dysfunction, acute heart failure and hospitalised heart failure – all of which are loosely defined, yet fall under the umbrella term of ‘heart failure’. In addition to the various medical terms used to describe heart failure, people living with heart failure often use plain English terms to describe their condition; for example, bad heart, weak heart, heart trouble or heart working at 40%. This is probably as a result of how heart failure diagnosis is explained, and perhaps is even due to providers’ fear of using the term ‘heart failure’. The abundance of terms used to describe this complex clinical syndrome, the lack of consistent terminology and conceptualisation of the term ‘heart failure’ itself has implications for how people living with heart failure understand their condition, and how they self-manage. Even Web MD recognises heart failure as a confusing name, as they explain: ‘The name of this condition can be a little confusing. When you have heart failure, it doesn’t mean your ticker stopped beating. What’s really going on is that your heart can’t pump blood as well as a healthy one.’5 The optimal management of heart failure largely relies on how effectively people living with heart failure are able to self-care. Heart failure is often described as the end stage of cardiovascular disease, occurring as a result of long-term hypertension, coronary artery disease and/or previous myocardial infarction. It is an irreversible and chronic condition that people must live with for life, but how well does the term ‘heart failure’ accurately reflect this? What does the term mean to people diagnosed with heart failure? How does the general public think of heart failure, and importantly, what are the implications for self-care and patient outcomes? The term ‘heart failure’ can cause patients to feel scared and anxious about diagnosis.6 Parallels can be drawn to the term ‘cancer’, which has historically been avoided in patient–provider communications, and in some countries remains a taboo.7 While much progress has been made around cancer disclosure over the past 30 years, less consideration is focused on the way we communicate in heart failure. It is the technical term for this syndrome; however, it holds a dual meaning in ordinary language. The heart is commonly recognised as our most precious organ, symbolising the very essence of our existence in almost every culture of the world.8 Followed by the word ‘failure’, the term suggests that the organ which supports our life can no longer maintain its function.9 The fear and panic associated with the term can lead to maladaptive coping,9,10 causing patients to feel hopeless about their condition, and may contribute to non-acceptance and poor adjustment which can interfere with a patient’s ability to perform vital self-care practices. Ineffective self-care, such as poor adherence to pharmacotherapy, daily weighing practices, symptom monitoring and timely symptom management, is accountable for approximately half of heart failure-related hospitalisations. Effective self-care is crucial in the sustained management of heart failure, and is key in the reduction of these preventable and often frequent heart failure hospitalisations.11 The emotional response to the term ‘heart failure’ influences the choice of coping strategy of many patients living with the condition, which underpins self-management approaches. The term ‘heart failure’ also creates confusion about its chronicity and associated symptoms. The word ‘failure’ suggests acuity or a sudden event involving the heart alone, with people often drawing connections to more familiar concepts such as sudden cardiac death or heart attack. The complex clinical syndrome is reduced to the simplicity of the afflicted organ, the chronicity of heart failure is not recognised, and the difference between these cardiac conditions is unclear, particularly for those with poorer health literacy. This is evidenced by how people living with heart failure respond to symptoms. It is common for patients only to perceive chest pain as related to their condition, whereas symptoms such as breathlessness, fatigue or weight gain (reflecting peripheral oedema) are perceived as less threatening. Patients may not recognise that symptoms not directly ‘felt’ by the heart are indicative of deteriorating heart function, which has major implications for patient outcomes. Heart failure symptoms are often overlooked as something more benign, patients may push through seemingly non-threatening symptoms and delay seeking professional care until they require emergency hospitalisation involving more complex treatment, which requires a longer length of stay to resolve. Furthermore, the association with more well-known cardiac conditions such as heart attack contributes to patients’ conceptions of heart failure being an acute problem rather than a chronic condition. Ongoing self-management may not be perceived as important or relevant due to perceptions of an acute model of illness which can lead to poor self-care and outcomes. Evidence suggests that the progressive nature of heart failure and its prognosis is not well understood, and in some cases is conceptualised as an illness that could be overcome.12–14 (My heart) doesn’t bother me. But a lot people, they didn’t get completely over it like I did. . . it really was tough for a while, but I got over it.12 Confusion around the term heart failure has not gone unrecognised, with the European guidelines for heart failure management advocating the importance of understanding the difference between heart attack and heart failure, its seriousness and chronicity. The heart failure matters website addresses the pressing need for a publicly available patient-friendly definition that, in reality, encompasses what we all need to be saying to patients. Although it’s called heart ‘failure’, it doesn’t mean that your heart is about to stop working. However, it does mean that your heart is having difficulty working to meet the needs of your body (especially during activity).15 To avoid downplaying the seriousness of heart failure and to provide enough distinction from other heart-related conditions, language should not be oversimplified either. As Young and colleagues (2008) highlight – ‘medical terms are more likely to be perceived as serious, be identified as a disease, and perceived as a rare conditions’.16 Think twice before using the term ‘bad heart’ without further explanation. Consistent information is critical – heart failure pathogenesis and self-management is difficult enough to understand, especially in a population who is likely to be older, cognitively impaired and have poor health literacy. Inconsistent terminology only adds to the confusion. It was ‘left ventricular systolic dysfunction’ then I got a letter saying ‘dilated cardiomyopathy, ischaemic heart disease’ so I’m a bit confused.17 Information should be clear, without being over-simplified and, above all, consistent. While the term ‘heart failure’ may not adequately reflect the complexity of this condition, changing the terminology may lead to further confusion. Consistency is key. Clearer communication with patients in health literate easy to understand terminology promoting shared decision-making is needed. Patients need to hear the term ‘heart failure’, understand what it doesn’t mean, how it is different to the other heart conditions, recognise their role in managing it, and understand that they can live with it for many years. Consistent use of terminology is crucial. There is a need to clarify what heart failure does not mean. Heart failure should not be seen as a taboo. The authors declare that there is no conflict of interest. Dr Caleb Fergusen is supported by a 2018 Postdoctoral Research Fellowship (Ref:102168) from the National Heart Foundation of Australia.