Objective: Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis which is often highly influenced by family caregivers. The objective of this paper was to understand patients’ experience with and preferences for family involvement in treatment decisions, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled.

Methods: 151 elderly (aged ≥ 65) patients with chronic kidney disease and their caregivers were surveyed about treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented vignettes which asked respondents to choose between two hypothetical treatment profiles. Patients and caregivers were first interviewed separately, and then were brought together to choose a treatment jointly for vignettes where there was discordance within the dyad. We used logistic regressions to investigate the predictors of discordance and reconciliation.

Results: Most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the vignettes, caregivers chose dialysis more than patients did (26% vs 19%; p value < 0.01). Overall, 44% of the dyads had discordance in at least 3 vignettes, and the odds of discordance within dyads was higher when caregivers choose dialysis (p < 0.01). In only 50% of the cases, discordance resolved in the patients’ favor. Discordance was more likely to reconcile in patient’s favor if the patient had financial independence (p = 0.03).

Conclusions: Our results highlight the important role of caregivers in decision-making but also the potential for them to overstep. Clinicians should be aware of this challenge and identify strategies that minimize the chances that patients may receive treatments not consistent with their preferences.