title: Discordance among patient preferences, caregiver preferences, and caregiver predictions of patient preferences regarding disclosure of terminal status and end-of-life choices.
abstract: BACKGROUND
  The complexity of end-of-life (EOL) communication in cancer care is often increased by family caregivers, who frequently affect the information and decision-making process. We assessed cancer patient preferences (PP), family caregiver preferences (FCP), and family caregiver predictions of patient preferences (FCPPP) regarding the disclosure of terminal status, family involvement in the disclosure process, and EOL choices, and we evaluated the concordances among them.
  
  
  METHODS
  A national, multicenter, cross-sectional survey of 990 patient-caregiver dyads (participation rate = 76.2%) was performed. A set of paired questionnaires was independently administered to patients and their caregivers.
  
  
  RESULTS
  While patients and family caregivers had wide spectra of preferences, patients significantly preferred disclosure, direct disclosure by a physician, and palliative care options (all P < 0.001). Family caregiver predictions were similar to PP with regard to terminal disclosure (P = 0.35) but significantly different with regard to family involvement in the disclosure process and EOL choices (P < 0.001). The concordances of PP and FCP (κ = 0.08-0.13), and those of PP and FCPPP (κ = 0.09-0.17), were poor. The concordances of FCP and FCPPP were fair to moderate (κ = 0.35-0.67). Discrepancies between PP and FCP and between PP and FCPPP were associated with dysfunctional family communication.
  
  
  CONCLUSIONS
  Family caregivers do not generally concur with patients in their preferences, nor do they reliably predict PP. Open dialogue between patient and family caregivers would reduce the discrepancy. More emphasis on incorporating family caregivers in EOL communication is needed from clinical, research, and training perspectives.
authors.affiliation: Department of Family Medicine and Health Promotion Center, Seoul National University Hospital, Seoul, Republic of Korea; Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Republic of Korea.
authors.forename: Dong Wook
authors.initials: DW
authors.lastname: Shin
authors.forename: Juhee
authors.initials: J
authors.lastname: Cho
authors.forename: So Young
authors.initials: SY
authors.lastname: Kim
authors.forename: Ik Joo
authors.initials: IJ
authors.lastname: Chung
authors.forename: Sam Soo
authors.initials: SS
authors.lastname: Kim
authors.forename: Hyung Kook
authors.initials: HK
authors.lastname: Yang
authors.forename: Eunmi
authors.initials: E
authors.lastname: Ahn
authors.forename: Bo Ram
authors.initials: BR
authors.lastname: Park
authors.forename: Hongwan
authors.initials: H
authors.lastname: Seo
authors.forename: Jong-Hyock
authors.initials: JH
authors.lastname: Park
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003258:Consumer Behavior; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D057240:Patient Preference / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*; D014342:Truth Disclosure
keywords: cancer; caregiver; communication; concordance; disclosure; family; oncology; palliative care