Living with Advanced Heart Failure: The Patient Experience

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Background: Prior to the past two decades of heart failure (HF) treatment advances, most patients did not survive long enough to experience a protracted end of life. However, a growing number of patients now live with the significant symptom burden of advanced HF. National guidelines recommend comfort for end-stage HF, but no definition of HF comfort care exists. In addition, prognostic uncertainty and provider unfamiliarity have limited hospice referrals. Existing research is largely retrospective, and little is known about this final HF phase. Conceptual Framework: The Corbin and Strauss Chronic Illness Trajectory Model provided the conceptual context, as the downward phase is salient to the exploration of the life-world of persons with advanced HF. Purpose/Aims: The purpose of this study was to explore the experiences of outpatients with advanced HF. Specific aims were to describe the daily life of advanced HF patients, discover patient-identified comfort sources and elicit patients' understanding of their disease and prognosis. Method: Ten outpatients (9 male, 1 female; mean age 83.3 years) with advanced HF were interviewed individually, using researcher-developed questions and probes. Interviews were audio-taped and pertinent observations recorded. Analysis used an interpretive phenomenological approach. Results: Patients living the decline of advanced HF described significant challenges in adapting to the increasing limitations of a progressive illness. Data analysis revealed the following themes: “But NOW” - the marked contrasts in function, experience and opportunity between “then” and “now;” negotiations on the downward trajectory; living with technology; finding comfort; losses in the decline; and “coming in for a landing” - facing mortality. Observations documented widely varied residential situations and levels of social support. Implications: Negotiating the downward trajectory phase includes significant contrasts in a life bounded by the growing impact of illness. Provider assessment should include patient situatedness (residence, support network) early in the downward trajectory to address declining function with appropriate interventions. Providers should also remain alert to expressions of loss, recognize opportunities to maximize comfort, and consider that patients may be more comfortable addressing mortality than might be assumed. Palliative care should include attention to a broad range of individual concerns in addition to careful HF symptom managment, in order that end of life might include a good quality of life.