Caregivers’ Perceptions of Illness Severity in Advanced Heart Failure

Abstract

Aims: Heart failure impacts over 5 million Americans, with this number doubling by 2030. The future global impact of heart failure has been called an “emerging pandemic”. Further complicating the high incidence of HF, is a five-year mortality rate that approaches 50% and an unpredictable heart failure trajectory. End-of-life (EOL) treatments for HF, including EOL discussions and referral to appropriate services, such as palliative care and hospice, have been recommended to meet the needs of heart failure patients and their family caregivers, but are not widely used by this population. To help determine why EOL services may not be utilized, when offered, this study investigated the perceptions of illness severity in family caregivers of patients with advanced heart failure. Methods: As part of a longitudinal study investigating the EOL trajectory of patients with heart failure and their caregivers, 63 adult family caregivers of heart failure patients with a predicted survival of !1-year (n526) versus !2-year (n537) were interviewed. During the initial interview, caregivers were asked to describe their understanding of the patient’s illness progression and where they envisioned the patient in one year. Qualitative content analysis of the interviews was done individually followed by a research team group comparative analysis. Results: The majority of caregivers (75%) did not understand the severity of the patient’s heart failure. There were no differences between the predicted survival of !1 year and !2 year groups in the caregivers’ perceptions of the patients’ illness severity. There were no significant differences in gender, age, or caregiver relationship between caregivers who did and those who did not perceive the severity of the patient’s illness. A small percentage of the caregivers focused on illness severity but attributed the life-limiting nature to another chronic disease process such as diabetes or advanced renal failure. Out of the 29 patients who have died during study enrollment, only 8 of the caregivers perceived HF as a terminal disease. The main theme identified in the caregivers who did not perceive the severity of the illness was hopefulness for the patient’s return to baseline or improvement of symptoms. For those caregivers who did perceive the severity of the patient’s illness, the main theme identified was uncertainty regarding the patient’s future. Conclusions: The majority of caregivers did not view the patient’s heart failure as a terminal disease even with a limited predicted survival. Lack of perception of the severity of advanced heart failure may impact caregivers’ acceptance of EOL discussions, EOL planning and EOL services.