Patients’ Perceptions of Illness Severity in Advanced Heart Failure

Heart failure impacts almost 6 million Americans. Complicating the high prevalence of heart failure is a 5-year mortality rate approaching 50%. Patients with advanced heart failure face greater risk of death and rehospitalization. However, little progress has been made in use of palliative or end-of-life services. To help determine why patients may not be receiving services, this study describes the perceptions of illness severity and terminality of advanced heart failure patients during the terminal course of the disease. One hundred individuals were interviewed and asked to describe their disease and where they see themselves in 1 year. For participants who died during the study, services utilized at end of life were documented. Qualitative thematic analysis was completed. The majority of participants did not understand the severity or the terminality of heart failure. Of the 51 participants who died, only 14% perceived heart failure as terminal. Regardless of predicted survival, few patients were offered palliative care services. By virtue of their education, nurses are perfectly situated to provide basic palliative care. Envisioning palliative care as a philosophy of care, delivered by all health care providers, would lead to incorporating supportive interventions from diagnosis to end of life even without acceptance of disease terminality.