Discordance among patient preferences, caregiver preferences, and caregiver predictions of patient preferences regarding disclosure of terminal status and end-of-life choices

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.