“My Family Wants Something Different”: Discordance in Perceived Personal and Family Treatment Preference and Its Association With Do-Not-Resuscitate Order Placement

Abstract

PURPOSE: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement. METHODS: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families’ preference. DNR placement was reported by patients and verified using medical records. RESULTS: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families’ preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates (χ2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62). CONCLUSION: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.