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
Authors: Mason Katherine L. , Allan Katherine S. , Huyer Dirk , Carroll June , Adler Arnon , Rutberg Julie , Cheskes Sheldon , Lin Steve , Mont Erik , Denis Lindsay , Kirsh Joel A. , Cunningham Kris , Garner Jodi , Siydock Liz , Dainty Katie N. , Bowes Matthew , Yee Karolyn , Dorian Paul , Lewis Krystina B. 
Published: September 2024

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.

What is Known?

Sudden cardiac death (SCD) is a devastating and unexpected event that can be caused by heritable cardiac conditions, putting the decedents family at risk of SCD.

Communication with death investigators and other health care professionals influences families’ experiences learning about the cause of death and about their risk for heritable cardiac condition.

What this Study Adds

According to death investigators, SCD cases due to suspected heritable cardiac conditions are more difficult to investigate, require a higher frequency of communication with family members than other types of cases, and benefit from using different communication modalities.

Despite their best intentions, death investigators are contending with many factors beyond their control that influence how communication with family members is carried out.

Provincial death investigation systems alone do not currently provide families of SCD victims with sufficient communication, as families often seek external resources.