Clear communication can facilitate family member screenings after sudden cardiac death
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Key takeaways:
- Communication after a relative’s sudden cardiac death can shape families’ decision to undergo genetic screenings.
- Life stressors after a sudden cardiac death can affect the decision to pursue screening.
Health care provider interactions with family members after a relative’s sudden cardiac death vary in type, format and timing, and stress surrounding the event can affect relatives’ decisions to pursue genetic screenings, data show.
"Surviving family members of a person who died from sudden cardiac death rely heavily on information communicated from death investigators and health care professionals to process their relative’s death and understand their own risk of inherited heart conditions,” Katherine S. Allan, PhD, MASc, a researcher in the division of cardiology at Unity Health Toronto – St. Michael’s Hospital in Toronto, told Healio. “This information will need to be repeated more than once and provided in different formats; verbally is not enough, as family members won’t retain or process the information received, particularly in the acute stages of grief.”
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Assessing interactions after sudden cardiac death
Allan and colleagues conducted a qualitative descriptive study by interviewing 19 family members of children and young adults, aged 12 to 45 years, who died of sudden cardiac arrest between 2014 and 2018 (10 men; mean age, 46.2 years). Those who died had a heritable cardiac condition and their cases were investigated by the Office of the Chief Coroner for Ontario, Canada.
“When the death is attributable to a heritable cardiac condition, investigating coroners are to recommend, by telephone and letter, that first-degree relatives should be referred for cascade screening at a specialized clinic,” the researchers wrote. “Once the death investigation is completed, [about] 6 to 12 months following the death, depending on timelines of external tests, a letter detailing the results of the death investigation and the recommendation for cascade screening is sent the designated family contact.”
Researchers designed questions to explore participants’ experiences learning about their relative’s cause of death, understand more about what kinds of information they received, if they understood this information and how they perceived their own risk for heritable cardiac conditions. Researchers used thematic analysis to analyze interview transcripts.
The findings were published in Circulation: Cardiovascular Quality and Outcomes.
The researchers highlighted four main themes, each representing a distinct time period that families experience along a trajectory:
- interactions between bereaved family and others, in particular coroners, shaped their search for answers about their relative’s cause of death, with the types, formats, and timing of communication varying by case;
- searching for answers and processing the cause of death;
- incidental implications of the sudden cardiac death event, such as financial strain and lifestyle changes, contributed to cumulative stress; and
- receiving answers (or not) and moving forward.
“For some participants, the tone of the death investigation was set from their first interaction with health care providers, often emergency medical services personnel,” the researchers wrote. “The clarity of communication from emergency medical services impacted families’ ability to understand the situation from the beginning and make informed decisions during an incredibly stressful event.”
Additionally, some participants indicated the value of having a primary point of contact to oversee the families’ questions and referrals, such as a primary care provider.
During the death investigation, many families learned for the first time about their potential personal risk for heritable cardiac conditions, according to the researchers. When adequately explained and appropriately timed within the grief cycle, most participants accepted this risk.
The researchers noted that all families volunteered to participate in this study and that the investigation began 3 to 5 years after a sudden cardiac death, which could lead to potential recall bias in participants’ responses. Additionally, no families of sudden death fatalities younger than 12 years were included in the study.
“In this study, most families pursed cascade screening after they had received a recommendation from their investigating coroner,” Allan told Healio. “However, there are no provincial or national standards about if and how families are notified about their potential risk for heritable cardiac conditions. Using the results from this study and other ongoing projects, we will make recommendations to the chief coroner and family physicians about how to draft practice guidelines on the best communication strategies for sudden cardiac death families after the death of their relative, ensuring standardized care for these families within Ontario. By providing standards of care around how and when these families are contacted, we hypothesize that this approach will address any outstanding informational needs and increase family cascade screening rates.”
Communicating through ‘fog of grief’
In a related editorial, Kimberly Dukes, PhD, anthropologist in the department of general internal medicine at the University of Iowa Carver College of Medicine, and Saket Girotra, MD, SM, associate professor of internal medicine at UT Southwestern Medical Center, wrote that scientific understanding of genetic causes of sudden cardiac death has advanced rapidly; however, knowledge of how to communicate this information to help families understand the cause of their loved ones’ death and navigate their own personal risk has lagged.
“Despite the ‘fog of grief’ or ‘whirlwind’ brought on by the loss, families yearned for definitive information and often turned to informal venues such as the internet or their social networks,” Dukes and Girotra wrote. “While some families never received a definitive answer about the cause of their loved one’s death, most families pursued cascade screening when they received a clear recommendation from providers.”
The authors note that providing important insights regarding the families’ pursuit of information and their experience of communication after a sudden death is vital for preparing health care providers and death investigation systems to better support families at a profoundly difficult time.
References:
- Communication may guide family members’ decisions after sudden cardiac death. https://newsroom.heart.org/news/communication-may-guide-family-members-decisions-after-sudden-cardiac-death. Published on April 4, 2023. Accessed on April 4, 2023.
- Dukes KC, et al. Circ Cardiovasc Qual Outcomes. 2023;doi:10.1161/CIRCOUTCOMES.123.009841.
For more information:
Katherine S. Allan, PhD, MASc, can be reached at katherine.allan@unityhealth.to; Twitter: @katie_s_allan.
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