“I was told that I would not die from heart failure”: Patient perceptions of prognosis communication

Lisa Hjelmfors, Anna Sandgren, Anna Strömberg, Jan Mårtensson, Tiny Jaarsma, Maria Friedrichsen

To describe patients' experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.