Dying to know: prognosis communication in heart failure

ESC Heart Failure

Lindsey Rosman¹  Casey E. Cavanagh²  Richard J. Soucier³  Matthew M. Burg³  Parul U. Gandhi³  Erica S. Spatz³  Terri Fried⁴ 

[1] Department of Medicine—Cardiology University of North Carolina at Chapel Hill Chapel Hill NC USA;Department of Psychiatry and Neurobehavioral Sciences University of Virginia School of Medicine Charlottesville VA USA;Section of Cardiovascular Medicine, Department of Internal Medicine Yale School of Medicine New Haven CT USA;VA Connecticut Healthcare System West Haven CT USA;

关键词: Heart failure;    Prognosis;    Communication;    End of life;    Disease progression;   

DOI  :  10.1002/ehf2.12941

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown