I am a quarterback: A mixed methods study of death investigators' communication with family members of young sudden cardiac death victims from suspected heritable causes

Abstract

Background: Sudden cardiac death (SCD) is a devastating event and a leading cause of mortality, globally. In the young (2-45 years), SCD is often attributable to a heritable cardiac condition. Death investigators are often responsible for investigating the cause of death and communicating their results and risk of heritable cardiac conditions with family members of SCD victims. Family often struggles to comprehend the information that is communicated to them. Purpose: To understand the delivery, reach and impact of communication strategies informing family members of SCD victims about their relative?s cause of death and their own risk for heritable cardiac conditions. Methods: We conducted an explanatory sequential mixed methods study. We collected quantitative data via a web-based survey and qualitative data via telephone interviews to investigate how death investigators in Ontario and Nova Scotia, Canada, communicate with family members of SCD victims. We used descriptive statistics to analyze the survey data and thematic analysis to analyze the qualitative data. We triangulated data at multiple levels. Results: Between October 2022 and July 2023, we surveyed 78 death investigators and interviewed a subset (n=20). Death investigators reported that SCDs due to suspected heritable cardiac conditions were more difficult (40%, n=31) or slightly more difficult (35%, n = 27) to investigate, often requiring a higher frequency of communication with families. Death investigators reported contacting family members via phone (n=75, 96.1%) and used various strategies to achieve their communication goals. Strategies were influenced by family characteristics; involvement of other professionals; characteristics of the investigation, access to resources, and system-level barriers. Conclusion: SCD investigations in the young due to suspected heritable cardiac conditions were more challenging and required a higher frequency of communication. Death investigators used various strategies to achieve their communication goals. Further research should examine how systematic changes can improve communication with family members.