Brain stem death diagnosis: a systematic review of families’ experience

Abstract

Abstract Aim Receiving a diagnosis of brain stem death poses significant challenges for families. While much research focuses on organ donation in the context of brain stem death, there is a notable dearth of studies examining the experiences of families themselves. The aim of this review is to explore the experiences of families facing brain stem death. Design Systematic review. Method A narrative synthesis was conducted, drawing on 11 studies that employed both qualitative and quantitative methodologies. The search encompassed four electronic databases: AHMED (Allied and Complementary Medicine), Emcare (1995-present), MEDLINE (Ovid), and APA PsycInfo (Ovid). Due to the limited research on this topic, no restrictions were placed on the publication dates. Results The synthesis revealed five main themes: The Unexpected Prognosis, Coming to Terms with Brain Stem Death—Grieving Process, Observing Brain Stem Death Testing, The Impact of Staff on Families’ Experience, and The Lasting Impact. Conclusion The review underscores the pervasive lack of understanding among families regarding the diagnosis and process of brain stem death, as well as the short- and long-term distress it can engender. There is a clear imperative to establish national or international protocols for brain stem death, ensuring more effective and consistent support for affected families.