Symptoms and fear in heart failure patients approaching end of life: a mixed methods study.

AIMS AND OBJECTIVES: The purpose of this study was to consider how fear and symptom experience are perceived in patients with heart failure at the end of life.

BACKGROUND: Heart failure is a burdensome condition and mortality rates are high globally. There is substantive literature describing suffering and unmet needs but description of the experience of fear and the relationship with symptom burden is limited.

DESIGN: A convergent mixed methods design was used.

METHODS: Data from the McGill Quality of Life Questionnaire (n = 55) were compared to data from in-depth interviews (n = 5).

RESULTS: Patients denied fear when asked directly, but frequently referred to moments of being afraid when they were experiencing symptoms. In addition, patients reported few troublesome symptoms on the survey, but mentioned many more symptoms during interviews.

CONCLUSIONS: These data not only identify the relationship between psychological issues and symptom experience but also elucidate the benefit of a mixed method approach in describing such experiences from the perspective of the patient. Future research should examine relationships between and among symptom experience, fear and other psychological constructs across the illness trajectory.

RELEVANCE TO CLINICAL PRACTICE: Conversations about the interaction of symptom burden and fear can lead to both a more robust assessment of symptoms and lead to patient centred interventions.