AIM: Being diagnosed as Brain Stem Dead is a very challenging experience for families. Most research regarding brain stem death focuses on Organ Donation and there is currently little research into families’ experience of brain stem death. The aim is to review the family’s experience of brain stem death. DESIGN: Systematic review  METHOD: A narrative synthesis was conducted for 9 studies including qualitative and quantitative study designs. Four electronic databases: AHMED (Allied and Complimentary Medicine), Emcare (1995-present), Medline (Ovid) and APA Psych Info (Ovid) were searched. No limit was placed on date of publishing due to this being a relatively under researched topic. The original search was conducted on 4th November 2021 and rerun on 6th December 2022 to ensure the inclusion of any new published studies. RESULTS: Six main themes were identified, including: The Unexpected Prognosis; Coming to terms with brain stem death- grieving process; Request for organ donation; Observing brain stem death testing; The impact of staff on families’ experience; and the lasting impact. CONCLUSION: Families of patients with brain stem death are often left with a lack of understanding surrounding the diagnosis, the process, and the short and long term distress it can cause. There is need for research into family’s experiences and brain stem death testing specifically so that more reliable data can be produced. There is a need to establish national, or international practice surrounding family care in intensive care in cases of brain stem death. This review highlights the importance of establishing specific brain stem death protocols, enabling more effective and consistent support for families.

The authors have declared no competing interest.

The authors received no specific funding for this work.

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