title: Barriers and facilitators to end-of-life communication in advanced chronic organ failure.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  Differences in barriers and facilitators between patients and family caregivers ask for an individual approach to facilitate end-of-life communication.
authors.affiliation: Registered Nurse, Faculty of Health Medicine and Life Sciences/CAPHRI, Maastricht University, Netherlands.
authors.forename: Liza Amc
authors.initials: LA
authors.lastname: Van den Heuvel
authors.affiliation: Scientific Advisor, Department of Research and Education, CIRO, Horn, Netherlands.
authors.forename: Martijn A
authors.initials: MA
authors.lastname: Spruit
authors.affiliation: Professor of Old Age Medicine at Faculty of Health Medicine and Life Sciences/CAPHRI, Maastricht University.
authors.forename: Jos Mga
authors.initials: JM
authors.lastname: Schols
authors.affiliation: Assistant Professor at Faculty of Health Medicine and Life Sciences/CAPHRI, Maastricht University.
authors.forename: Ciska
authors.initials: C
authors.lastname: Hoving
authors.affiliation: Professor of Respiratory Medicine at the Centre of Expertise for Palliative Care, Maastricht University.
authors.forename: Emiel Fm
authors.initials: EF
authors.lastname: Wouters
authors.affiliation: Elderly Care Physician at the Centre of Expertise for Palliative Care, Maastricht University.
authors.forename: Daisy Ja
authors.initials: DJ
authors.lastname: Janssen
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology; D003142:Communication; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D006333:Heart Failure; D006801:Humans; D007676:Kidney Failure, Chronic; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010166:Palliative Care; D029424:Pulmonary Disease, Chronic Obstructive
keywords: Advance care planning; Chronic disease; Decision-making; Palliative care; Terminal care