Barriers and facilitators to end-of-life communication in advanced chronic organ failure

Aim: The aim of this quantitative, cross-sectional study was to identify barriers and facilitators to end-of-life communication experienced by family caregivers of patients with advanced chronic organ failure and to examine agreement in barriers and facilitators between family caregivers and patients. Methods: Patients and family caregivers were interviewed using the barriers and facilitators questionnaire. Agreement was determined using intraclass correlation coefficients for continuous variables and Cohen's kappa for categorical variables. Results: A total of 158 patients and family caregiver dyads were included. The most important barriers for family caregivers were related to uncertainty about expected care and focus on staying alive instead of dying. The facilitators were related to trust in and competence of their physician and earlier experiences with death in their (social) environment. For most barriers and facilitators, agreement between patients and family caregivers was fair to moderate. Conclusion: Differences in barriers and facilitators between patients and family caregivers ask for an individual approach to facilitate end-of-life communication.