Public Understandings of the Definition and Determination of Death: A Scoping Review

Abstract

Background. Advances in medicine and technology that have made it possible to support, repair, or replace failing organs challenge commonly held notions of life and death. The objective of this review is to develop a comprehensive description of the current understandings of the public regarding the meaning/definition and determination of death. Methods. This scoping review was conducted in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. Online databases were used to identify articles published from 2003 to 2021. Two reviewers (S.S. and K.Z.) screened the articles using predefined inclusion and exclusion criteria, extracted data for specific content variables, and performed descriptive examination. Complementary searches of reference lists complemented the final study selection. A search strategy using vocabulary of the respective databases was created, and criteria for the inclusion and exclusion of the articles were established. Results. Seven thousand four hundred twenty-eight references were identified. Sixty were retained for analysis, with 4 additional references added from complementary searches. A data extraction instrument was developed to iteratively chart the results. A qualitative approach was conducted to thematically analyze the data. Themes included public understanding/attitudes toward death and determination of death (neurological determination and cardiocirculatory determination of death), death and organ donation, public trust and legal variability, and media impacts. Conclusions. This review provides a current and comprehensive overview of the literature related to the general public's understanding and attitudes toward death and death determination and serves to highlight the gaps in this topic.

Death determination by neurologic criteria—what do families understand?

“…Our data, as others’, 8 , 9 , 11 – 15 , 19 reveal that many FMs struggle with the difference between brain death and coma, and some continue to struggle with this differentiation years after the death of their loved one. Despite several decades of research on this topic, many FMs, and the public continue to be confused about the differences between brain death and other neurologic disorders such as comas or persistent vegetative state.…”

“…Despite several decades of research on this topic, many FMs, and the public continue to be confused about the differences between brain death and other neurologic disorders such as comas or persistent vegetative state. 8 , 11 , 19 , 29 – 32 We have found that the timing and frequency of conversations with families are important for their comprehension. Families need to be informed early in the death determination process, and need to have information repeated several times to understand.…”

Knowledge gaps in the definition and determination of death

“… 17 A scoping review has evaluated the general public’s understanding of the definition and determination of death globally. 18 Nevertheless, multiple knowledge gaps persist regarding families’ perspectives about their relative’s death. Qualitative studies about families’ experiences and perceptions of WLSM, DCC, and DNC processes are key elements of knowledge to gather concerning end-of-life and organ donation.…”

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“…Then consider the work about the public’s understanding of the definition and determination of death. There is a 2022 scoping review (11), a 2023 national survey of public opinion in Canada (12), and a 2023 report of interviews in family members with relatives dying after determination of DNC (13). Despite these detailed articles on families at the time of death, we have heard little about physicians and their decision-making when families refuse testing for the determination of DNC (14).…”