Recognising the “Other Half” of the Heart Failure Equation: Are we Doing Enough for Family Caregivers?

When we describe the burden imposed by heart failure, we often focus on the -big picture” numbers that capture the imagination and give us some sense of the enormous challenge we face in dealing with this modern epidemic. For example, knowing that there are at least 15 million cases of heart failure per annum in Europe, Japan, and the USA combined 1, and that the direct cost of providing health care to such individuals most probably doubled in the 1990s 2 with little relief in sight, provides a powerful stimulus, from the clinician to health policymakers and fund managers, to tackle the problem as a matter of urgency. In recent years, we have become more adept at not only quantifying the individual burden imposed by heart failure in terms of its adverse impact on every day quality of life relative to other chronic disease states 3 and, perhaps more importantly, at the end of life 4, but also designing strategies (so-called heart failure management programs) that provide individualised care in a remarkably cost-effective manner5. It is within this context of our war on heart failure, that it would appear that we have been guilty of largely ignoring the “collateral damage” imposed by this deadly syndrome on informal carers and, indeed, imposing “friendly fire” on those closest to the person with heart failure in our attempts to improve health outcomes. In support of a study presented by Luttick et al. 6 at the 2003 Scientific Congress of the European Society of Cardiology, this thought provoking hypothesis is proposed by Molloy et al. 7 in this issue. Examining the literature describing the value of supportive management for individuals with heart failure, the authors found that from the perspective of the informal care giver, there is a dearth of consideration of the significant burden imposed by caring for someone with this syndrome. In many cases, these demands result in a worse quality of life for the carer as compared to the affected individual 6. To add insult to injury, in our attempts to increase self-sufficiency, we have a strong propensity to increase the demands on the time and energies of informal carers to ensure treatment adherence and application of nonpharmacologic strategies (e.g., weight monitoring). A brief return to the “big picture” provides a compelling reason why we should be concerned by the collateral damage imposed by heart failure on informal carers. In studies of heart failure management programs 5, patients are typically aged >65 years (average age, 75 years) and, in approximately 75% of cases, live with an equally old and fragile partner. This equates to at least 10 million individuals aged >65 years who typically live with, and care for, someone with heart failure in Europe, Japan, and the USA. At the individual level, this means that those who are least able to care for someone with heart failure are forced to cope with managing complex therapeutic regimens and assisting in activities of daily living during the day and experiencing disturbed sleeping patterns at night. While we are quick to report activating social services and provide additional support to the significant number of heart failure patients who live alone, the current literature suggests that we are far less likely to articulate a strategy that supports the informal carer. As noted by Molloy et al. 7, we are more likely to report applying strategies that not only increase the complexity of prescribed therapeutics (e.g., a flexible diuretic regimen) and apply self-care strategies built around increased monitoring and adherence that increase the burden on informal carers and have the clear potential to adversely affect their own health. This may, in turn, lead to suboptimal management of the individual with heart failure and increase the probability of an admission to hospital. Although most clinicians who apply heart failure management programs would argue that they do, if not explicitly, consider the needs of the informal carer, it is clearly time for us to fully recognise and articulate the critical role of carers in dealing with the heart failure epidemic. Further studies and services that specifically address carer needs in this regard are urgently required. Considering that it is estimated that, even in a relatively small country such as Scotland (population, 5 million), informal carers save the National Health Service £3.5 billion per annum in the every day management of chronic disease states 8, it is clear that we cannot ignore the “other half” of heart failure!