How to talk about death? A cross-sectional survey on patients’, informal caregivers’ and health care professionals’ views in the setting of allogenic hematopoietic stem cell transplantation

Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a potentially curative treatment, which carries a high risk of complications and mortality, highlighting the necessity of discussions about life threat. This study explores the perspectives of patients, informal caregivers (ICs), and healthcare professionals (HCPs) regarding the timing, content, and challenges of these discussions. Multicenter cross-sectional survey in comprehensive care centers across Germany, involving patients with allo-HSCT, ICs, and HCPs. Questionnaires assessed perceived concerns about life threat, communication needs, and attitudes toward death. Statistical analyses included descriptive statistics, group comparisons, and multivariate logistic regressions. A total of 61 patients, 31 ICs and 125 HCPs participated in this study. Patients and ICs had a high need for discussion about life threat at diagnosis, which was corroborated by HCPs. At further time points in the transplant trajectory, there were more discrepancies between patients‘/ICs‘ and HCPs’ perceptions towards conversations about life threat. While 61.7% of patients preferred having their ICs present during discussions, ICs often felt overlooked, with only 50% finding conversations with HCPs helpful. HCPs’ avoidance of death was associated with a reduced likelihood of reporting a need for conversation in patients in the event of severe complications. These findings highlight a discrepancy between patients’ and ICs’ preferred timing for conversations about life threat and HCPs’ perceptions of when patients actually express such a need. To bridge this gap, earlier and ongoing conversations are essential. Training programs should address HCPs’ discomfort in discussing prognosis and improve interdisciplinary teamwork to standardize end-of-life communication. Trial registration number: DRKS00027290 (German Clinical Trials Register) on 10.01.2022.