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Patient and Family Preferences in End-of-Life Care: An Umbrella Review

These findings are a crucial starting point to address gaps and enhance strategies to align care with patient and family preferences.


The place where Children and Young People (CYP) are cared for towards the end of their lives, and where they eventually die, is a complex phenomenon. Honoring their preferences and involving them in decisions is vital for quality care. Recently, the EOLinPLACE team (a project funded by the European Research Council) published an umbrella review on Patient and Family Preferences about Place of End-of-Life Care and Death. Despite growing research, a significant gap exists in understanding CYP's preferences, as nearly all studies interviewed parents instead of the patients themselves. The reasons were not described, but international studies emphasize complex limitations to the conduct of research with pediatric patients at the end of life, mainly due to ethical concerns, insufficient funding, and, most significantly, gatekeeping by clinicians and parents. The greatest need for future research falls clearly on CYP, since the evidence is scarce, of low quality, and focused on parental perspectives.

EOLinPLACE is a five-year (2022-2026) Starting Grant funded by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No. 948609).

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EOLinPLACE project


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