The Lived Experience of Heart Failure at the End of Life: A Systematic Literature Review (Disease/Disorder Overview‪)‬

Matters of the heart, literally and figuratively, have long been the subject of social work practice and research. Heart failure (HF) describes a condition in which the heart is not adequately pumping blood through the body because of its inability to fill with enough blood or its inadequate pumping force (National Heart, Lung, and Blood Institute, 2008). HF has been described as epidemic, due to increasing incidence, hospitalizations, health care costs, and mortality related to this condition (Redfield, 2002). A continuation of these trends is likely because of the higher incidence of HF among older, compared with younger, adults (American Heart Association [AHA], 2006) and the expected dramatic increase in the age-65-and-over population in the coming decades (U.S. Census Bureau, 2006). Despite numerous advances in medical and surgical care in the past three decades, mortality is high among those with advanced HE with rates similar to those for breast and colon cancers. Among people afflicted with the most advanced stage of HF (New York Heart Association Class IV), two-year mortality is as high as 90 percent (Stewart, 2003). Mortality rates from HF also increased by 20.5 percent from 1993 to 2003 (AHA, 2006), suggesting the need for greater attention to end-of-life issues. Social work researchers and practitioners have established key research priorities for their work in end-of-life care (Kramer, Christ, Bern-Klug, & Franceur, 2005), including the identification of gaps and fragmentation in service delivery and the need to obtain more information on barriers and challenges to health care among diverse populations. To address these challenges, more information is needed from the perspective of people with HF, who face many distressing and complex issues at the end of life. However, despite the obvious importance of first-person accounts in informing social work practice, the emerging literature on the lived experience of HF has not been examined systematically. To discern the most important issues that will be relevant for social workers in meeting the needs of the growing number of people with HF, such a review is greatly needed.