Background: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning.
Objective: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future.
Design: This was a cross-sectional study using qualitative methods.
Participants: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses.
Approach: Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change.
Key results: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition.
Conclusions: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.