Dying to know: prognosis communication in heart failure

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.

A process-based approach to health-related quality of life as a “way of living”

“…kidney disease [ 49 ] or cancer [ 50 ]), the sudden or gradual deterioration in health status arises from a complex network of bio-behavioral interactions where change cannot be readily attributed to a simple (linear) association with a causal factor. Moreover, efforts by health professionals to treat and support an individual with CHF are constrained by the unpredictable disease trajectory and poor discrimination of many prognostic models [ 51 ].…”

Association of filial attitude, filial behavior and death literacy: implications for development of death system in Guangdong-Hong Kong-Macao Greater Bay Area of China

“…Not only do they hesitate to inform their parents, they often object to others’ opinions including opinions from healthcare professionals, conveying them such bad news [ 38 ]. However, relevant studies in China have indicated that desiring others to tell the truth were higher in patients than in family members and medical staff [ 39 , 40 ]. Patients’ willingness to be informed may be underestimated, and withholding the truth may prevent patients from knowing what they want to know during their final days of life.…”

Patients’ and carers’ perspective of the impact of heart failure on quality of life: a qualitative study

“…A study found that patients welcomed discussions about their prognosis (Rogers et al, 2012) and 20% of the 60 patients in a separate study reported wanting an improvement in communication from HCPs (Buetow & Coster, 2001). Furthermore, a recent review found that a large percentage of patients and carers wanted to discuss what to expect in the future with their HF, with more wanting information on their disease prognosis (Cavanagh et al, 2020). Conversely, HCPs report difficultly in providing HF patients with their disease prognosis due to the complex and sometimes unpredictable nature of the condition (Lehman et al, 2005).…”