Quality of cancer end-of-life care: Discordance between bereaved relatives and professional proxies

Background: Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives. Aim: This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients' death. Design: In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin's concordance correlation coefficient, Cohen's kappa, overall concordance correlation coefficient and Fleiss' kappa. Setting/participants: We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy. Results: We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; -0.04 to 0.44), between relatives and nurses (+0.05; -0.39 to +0.47), and between relatives and physicians (+0.25; -0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales. Conclusions: The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.