End-of-life care in patients with glioblastoma after early advance care planning

Background We aimed to evaluate the preferred and received end-of-life (EoL) care in glioblastoma patients who participated in a local nurse-led advance care planning (ACP) program, as well as the perceived quality of care.Methods Twelve proxies of patients with glioblastoma who participated in an ACP program completed a study-specific questionnaire after the patient deceased, comprising the following topics: organization of EoL care, patient's preferences and wishes, received care during the last 3 months, and proxies' experiences with EoL care. The outcomes were compared with those from a historical cohort of Dutch patients with glioblastoma (n = 71) who did not receive ACP.Results Nine out of 12 patients lived at home 3 months before death and most (8/12) died at home. In 11/12 cases, the general practitioner was responsible for EoL care in the last week before death. Proxies indicated that most patients rated their quality of received EoL care as very good to excellent in the last 3 months and last week before death (67% and 75%, respectively), that 8/12 patients died with dignity and that all proxies were involved as much as they wanted in decision-making. One-third of the patients in the ACP cohort were relocated at least once in the last 3 months versus 48% of the patients in the historical cohort.Conclusions Despite the limited number of participants, this study suggests that a nurse-led ACP program has a positive impact on several aspects of EoL care for patients with glioblastoma.