Patient-family concordance in end-of-life decision-making preferences among terminally ill older adults: a cross-sectional study

Family members frequently participate in end-of-life (EOL) decision-making for terminally ill older adults; however, family-member preferences for the patient may not align with the patient’s own preferences. Such discordance can complicate treatment planning and efforts to provide care that is consistent with patients’ stated goals. The study aimed to examine concordance and directional discordance between patient-reported EOL preferences and family-member preferences for the patient’s EOL care. A cross-sectional survey was conducted between October 2022 and November 2023 at a large tertiary comprehensive teaching hospital in Sichuan Province, China. The present dyadic analysis included 505 matched patient-family pairs with valid paired questionnaires. Preferences were assessed for seven life-sustaining treatments, preferred place of death, and the preferred final EOL decision-maker. Percentage agreement and Cohen’s kappa were used to quantify concordance. Concordance for life-sustaining treatment preferences ranged from poor to moderate (κ = 0.308–0.566). Across all seven treatments, family members more frequently chose treatment for the patient than patients chose for themselves. Patients most often preferred home as the place of death (50.9%), whereas family members most often preferred hospital for the patient (64.6%); concordance for place of death was moderate (κ = 0.504). Concordance regarding the preferred final EOL decision-maker was also moderate (κ = 0.468). Patient-family discordance was observed across multiple EOL decision domains, with family members consistently showing greater preference for life-sustaining treatment for the patient than patients themselves. Eliciting patient and family-member preferences separately and using proactive communication may help identify clinically important differences before urgent EOL decisions arise.