Background: Patients with heart failure (HF) have high 30-day hospital readmission rates. Interventions designed to prevent readmissions have had mixed success. Viewing HF home management through the lens of a patient’s experience may reframe the readmission “problem” and inform a range of alternative strategies.
Methods: We conducted open-ended, semi-structured interviews with HF patients who had a 30-day readmission or had been discharged in the past month. Data were analyzed using a grounded theory approach. The purpose of the interviews was to understand the challenges to home HF management and the perceived reasons for readmission.
Results: Face-to-face interviews with 31 patients, 16 (52%) with a 30-day readmission, revealed a combination of physical and socio-emotional influences on patients’ home management. Major themes related to readmission included symptom management, adherence vs adaptation, and emotional reactions. While patients reported symptom management as the leading reason for readmission, addressing symptoms was more complex than following recommendations. Patients identified an uncertainty regarding recommendations, caused by unclear instructions and temporal incongruence between behavior and symptom onset, as a factor that impaired their competence in making routine management decisions and resulted in a cycle of limit testing. Patients reported adapting —rather than strictly adhering to— recommendations to accommodate their emotional needs, socio-economic constraints, and comorbidities. For some, the onset of a distressing constellation of symptoms led to a cycle of despair characterized by fear and hopelessness, with the hospital being viewed as the safest place for recovery (see Figure 1).
Conclusion: Anticipatory guidance regarding challenges to adherence may reduce uncertainty, but is likely insufficient. Early palliative care referral may help mitigate distressing symptoms, and address extreme emotions, perhaps forestalling premature readmission.