September 24, 2020Open Access
Dying to Know: Prognosis Communication in Heart Failure
Key Result
Prognosis communication in heart failure occurs infrequently and late in the disease trajectory, highlighting a need for iterative discussions to better engage patients in their care.
Structured PICO
P
Population
Patients with heart failure, their caregivers, and clinicians
I
Intervention
Prognosis communication (discussions about disease trajectory, life expectancy, and goals of care)
Prognosis communication in heart failure is infrequent and often delayed, highlighting a need for improved, early, and iterative discussions about disease trajectory and patient goals.
Limitations
- The great majority of reviewed studies were small and qualitative in nature or used mixed methods.
- There is a lack of randomized controlled trials testing prognosis communication interventions.
- Generalization of findings is limited by the focus on early to mid-stage heart failure in some studies.
Abstract
Prognosis communication in heart failure is often narrowly defined as a discussion of life expectancy, but as clinical guidelines and research suggest, these discussions should provide a broader understanding of the disease, including information about disease trajectory, the experiences of living with heart failure, potential burden on patients and families, and mortality. Furthermore, despite clinical guidelines recommending early discussions, evidence suggests that these discussions occur infrequently or late in the disease trajectory. We review the literature concerning patient, caregiver, and clinician perspectives on discussions of this type, including the frequency, timing, desire for, effects of, and barriers to their occurrence. We propose an alternate view of prognosis communication, in which the patient and family/caregiver are educated about the nature of the disease at the time of diagnosis, and a process of engagement is undertaken so that the patient's full participation in their care is marshalled, and the care team engages the patient in the informed decision making that will guide care throughout the disease trajectory. We also identify and discuss evidence gaps concerning (i) patient preferences and readiness for prognosis information along the trajectory; (ii) best practices for communicating prognosis information; and (iii) effects of prognosis communication on patient's quality of life, mental health, engagement in critical self-care, and clinical outcomes. Research is needed to determine best practices for engaging patients in prognosis communication and for evaluating the effects of this communication on patient engagement and clinical outcomes.