“I Am a Quarterback”: A Mixed-Methods Study of Death Investigators’ Communication with Family Members of Young Sudden Cardiac Death Victims

Abstract

Background

Sudden cardiac death (SCD) is a leading global cause of mortality and is often attributable to heritable cardiac conditions in the young (aged 2-45 years). Death investigators are responsible for determining the cause of death and communicating the risk of heritable conditions with the families of victims. Families often struggle to comprehend this information. This study explores how death investigators communicate with families of young SCD victims who die from suspected heritable causes about the cause of death and their risk for SCD.

Methods

We conducted an explanatory sequential mixed-methods study, collecting 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 quantitative data, and thematic analysis to analyze qualitative data. We triangulated the data at multiple levels.

Results

Between October 2022 and July 2023, we surveyed 78 death investigators and interviewed a subset of these (n = 20). Participants (40%; n = 31) reported that SCDs due to heritable cardiac conditions were more difficult to investigate, requiring a higher frequency of communication with families. Participants (96.1%; n = 75) reported contacting family members via phone. Strategies to achieve their communication goals were influenced by family characteristics; involvement of other professionals; characteristics of the investigation, access to resources, and system-level barriers.

Conclusions

SCD investigations in the young who die due to suspected heritable cardiac conditions are challenging and require a high frequency of communication. Further research should examine how systematic changes can improve communication among death investigators and families.

Sudden cardiac death (SCD) is a devastating event that remains a leading cause of mortality globally.¹ SCD is characterized by cardiorespiratory collapse that occurs suddenly and unexpectedly, and it is presumably due to a cardiac cause.^1,2 The causes of SCD vary with age; in the young (aged < 35 years), most cases are attributable to heritable cardiac conditions, such as hypertrophic cardiomyopathy (HCM), arrhythmogenic cardiomyopathy (AC), long QT syndrome (LQTS), and Brugada syndrome (BrS).^3,4 For those over the age of 50 years, coronary artery disease can cause up to 75% of all SCDs.⁵ In many healthcare systems around the world, legislation mandates the investigation of sudden and unexpected deaths.^6,7 Coroners, medical examiners, and coordinators of investigations (henceforth referred to as death investigators), are often responsible for communicating with bereaved family members about the cause of death and their potential risk for heritable cardiac conditions, particularly in cases in which the victim is young (aged 2-45 years).

Following the SCD, family members may be informed of the death investigation process, the cause of death, and their own risk for heritable cardiac conditions. The manner in which this information is communicated is critical, as it shapes the families’ experiences during this difficult time and may influence their choice of pursuing subsequent cardiac screening and genetic testing, when recommended.⁸ Policies, procedures, and practices for death investigations vary by jurisdiction.⁶ For example, in Canada, each province and territory is responsible for conducting their own death investigations, which has resulted in differing systems and legislation to fulfill the mandate of investigating deaths that are unexpected, unexplained, or occur as a result of injuries or drugs.⁹ The Province of Ontario uses a coroner-based system to investigate deaths, under the authority of the Coroner’s Act, whereas Nova Scotia has a medical-examiner system that investigates deaths under the authority of the Fatality Investigations Act. In addition, communication-specific training is often dependent on the individual death investigator’s professional experiences in their other specialties, and their own motivations, creating variability and inconsistency in approaches within and across death investigation systems.⁸ Many families describe struggling to comprehend and remember information during the emotional and overwhelming period following the sudden death of a loved one.⁸

Despite the importance of effective communication for bereaved family members, little research has investigated what constitutes optimal communication in this context. In fact, little is known about the communication approaches within death investigation systems. This study aims to explore how death investigators communicate with families of young SCD victims—in cases with suspected heritable causes—about the cause of death and their risk for SCD, and what influences their communication approaches. The following 3 research questions guided this study:

• 1.What is the type and timing of communication strategies used by death investigators when communicating with families of young SCD victims (quantitative)?
• 2.What are the experiences of death investigators in communicating with families of young SCD victims, and what are their suggestions to improve communication (qualitative)?
• 3.How does the integration of qualitative and quantitative findings enhance our understanding of death investigators’ experiences with communication during investigations of young victims’ SCD (quantitative and qualitative)?

Methods

Study design

We conducted a sequential mixed-methods explanatory sequential study to explore how death investigators communicate with families of young SCD victims about the cause of death and their risk for SCD.¹⁰ We collected quantitative data via a web survey, which informed the interview guide. The interview guide was used to collect qualitative data via individual interviews. The study was approved by the University of Ottawa Research Ethics Board (H-09-21-7135). We report this study using the CHERRIES¹¹ (Checklist for Reporting Results of Internet E-Surveys) and SRQR¹² (Standards for Reporting Qualitative Research) reporting guidelines.

Research characteristics and reflexivity

Members of the Office of the Chief Coroner of Ontario/Ontario Forensic Pathology Service (K.C., J.A.K., L.S.) and the Nova Scotia Medical Examiner Service (M.B., E.M., L.D.), including death investigators and the Genetic Condition Coordinator (K.S.A.; co-first author), were interested in learning about current communication approaches to inform a future evidence-informed approach to improve communication, supports, and resources offered to families. A family member partner (J.G.) with lived experience of losing a young family member to SCD was motivated to collaborate to improve the lengthy death investigation process. Our research team was comprised of early to senior career investigators (K.B.L., K.S.A., K.N.D.), including trainees (K.L.M., K.Y.), clinician-researchers in cardiology, (A.A., P.D.), emergency medicine (S.L.), family medicine (J.C., S.C.), and a genetic counsellor (J.R.). All had expertise, interest, and recognition of the need to improve family-centred communication for informed, values-based care in suspected heritable sudden cardiac death cases. Together, our team committed to an integrated knowledge translation (IKT) approach to the study, an approach that has been promoted widely and used in health research in Canada.¹³ Kothari et al. define IKT as “a model of collaborative research, where researchers work with knowledge users who identify a problem and have the authority to implement the research recommendations.”¹⁴ This research was conducted through collaborations between the research team and knowledge users, from the conceptualization of the research to the dissemination of the findings for greatest impact.

Setting

This study was conducted in 2 Canadian provinces—Ontario and Nova Scotia. These sites were selected based on their membership in the Canadian Sudden Cardiac

Arrest Network (C-SCAN),¹⁵ the number of autopsies performed yearly in young SCD victims, and their capacity to support the research project. In these provinces, the Office of the Chief Coroner of Ontario, and the Nova Scotia Medical Examiner Service, respectively, are responsible for investigating all sudden and unexpected deaths and informing families of the results. In Ontario, coroners conduct death investigations in collaboration with forensic pathologists, whereas in Nova Scotia, medical examiners and coordinators of investigation work collaboratively.

Eligibility criteria

We invited death investigators working in Ontario and Nova Scotia, who had investigated at least one young (aged 2-45 years) SCD case between 2018 and 2021, where the death was attributable to a heritable cardiac condition, or a case with no anatomic or toxicological cause that was presumably due to a heritable cardiac condition. Heritable cardiac conditions were defined according to the Canadian Cardiovascular Society Guidelines.¹⁶ Participants were required to be able to read, speak, and understand either English or French.

Recruitment

All Ontario (n = 340) and Nova Scotia (n = 19) death investigators were invited to participate in the anonymous web survey by e-mail through their institutional staff list servs. Two e-mail reminders were sent to all eligible participants approximately 1 month apart, in keeping with Dillman’s survey methods.¹⁷ Once the survey was completed, respondents could indicate their interest in participating in a subsequent telephone interview by providing their name and e-mail address. We contacted interested interview participants by e-mail with one follow-up reminder, if required.

Data collection

Quantitative data collection

We collected quantitative data via an anonymous web survey, using Hosted in Canada Surveys between October 2022 and February 2023. The secure link was included in the study invitation e-mail, and survey completion implied informed consent. The research team developed the survey based on known gaps revealed from our prior work aligned with the study aims,² and the literature on communication.⁸ The web survey was piloted by members of the research team and was revised for clarity, flow, and technical functionality. The web survey was comprised of 5 sections with both open and closed-ended questions on the following topics: (1) sociodemographic characteristics; (2) communication with SCD families (eg, type, frequency, modality); (3) recommendations for cardiac and/or genetic testing follow-up; (4) interactions with genetic counsellors; and (5) needs for investigating SCD cases (Supplemental Appendix S1). During quantitative data collection, data were stored securely within the Hosted in Canada database and are now stored within the University of Ottawa Microsoft OneDrive. E-mail addresses were checked for duplicates to prevent multiple entries from the same individual.

Qualitative data collection

We used a qualitative descriptive approach. The research team developed a semistructured interview guide informed by the literature, and our team’s prior work in this area,⁸ and refined it based on the survey results. Questions were designed to do the following: (1) explore death investigators’ experiences of communicating the cause of death and the risk of heritable cardiac condition to families; (2) understand the type and timing of communication strategies used with families; and (3) recognize the role of other professionals in the death investigation process (Supplemental Appendix S2). From March to July 2023, K.S.A, K.B.L, and K.L.M conducted telephone interviews with all death investigators who agreed to participate. We audio recorded, transcribed, and de-identified the interviews prior to analysis. Qualitative transcripts are stored in the University of Ottawa Microsoft OneDrive.

Data analysis

Quantitative data analysis

Only participants who had completed at least 1 of 5 survey sections were included in our analysis. Continuous data were reported as means and standard deviations, whereas categorical data were reported as counts and percentages.

Qualitative data analysis

We used an iterative team-based approach to analyze interview transcripts, guided by Braun and Clark’s thematic analysis approach.^18,19 We identified, analyzed, organized, and described themes that reflected death investigators’ experiences conducting SCD investigations and communicating with families of SCD victims. Each transcript was analyzed independently by at least 2 team members and was discussed by the team. Meaningful segments of data were coded and organized in a Microsoft Excel-based (Microsoft, Redmond, WA) codebook. As analysis progressed, we revised the codebook and clustered codes based on overarching themes. Perspectives were discussed and disagreements in coding were resolved at weekly team meetings. Early transcripts were reanalyzed following the finalization of the codebook to ensure that all relevant data were captured. Open-ended survey responses were read to determine if any new themes that were not captured in the codebook emerged.

Data integration

We integrated qualitative and quantitative data at multiple levels. At the level of study design, we integrated data through our sequential approach. At the level of the sampling frame, we integrated data by recruiting survey participants for telephone interviews, and we integrated data from our data collection tools by modifying our interview guide based on survey results. We also integrated data in our interpretations of the findings.

Results

Participant characteristics

Of 359 invited Ontario and Nova Scotia death investigators, 76 participants fully completed and 2 participants partially completed the Web-survey (response rate = 78 of 359; 22%). A total of 105 participants navigated past the first page of the survey (completion rate = 76 of 105; 72%). Participants were aged 55 +/- 14 years on average; 31 (42%) were female; and 31 (42%) identified as women. Twenty (25%) survey participants, 18 from Ontario and 2 from Nova Scotia, participated in telephone interviews. Of the death investigators we interviewed (n = 20), all were physicians, with the majority in family medicine (n = 14 of 20; 70%). Other medical specialties included pediatrics (n = 2 of 20; 10%), pathology (n = 2 of 20; 10%), emergency medicine (n = 1 of 20; 5%) and general surgery (n = 1 of 20; 5%). Interview participants’ characteristics were similar to those of survey participants, although with less ethnic diversity. Participants were aged 55 +/- 13 years on average, with the same proportions being female and women—40% (n = 8). Participants’ characteristics for both the survey and the interviews are detailed in Table 1.

Table 1.

Characteristics of death investigators

Characteristic	Web survey participants (n = 78)	Interview participants (n = 20)
Age, y	54.9 +/- 13.8	54.7 +/- 12.5
Sex, female	31 (41.9)	8 (40.0)
Gender, women	31 (41.9)	8 (40.0)
Ethnicity
White	56 (71.9)	18 (90.0)
East Asian	7 (9.0)	2 (10.0)
South Asian	4 (5.1)	0 (0.0)
Middle Eastern	3 (2.6)	0 (0.0)
Experience as a death investigator, years
< 1	3 (3.8)	1 (5.0)
1–4	19 (24.5)	5 (25.0)
5–10	15 (19.2)	3 (15.0)
> 10	37 (47.4)	11 (55.0)
No answer	4 (5.1)	0 (0.0)
Number of SCD cases investigated
1–5	15 (19.2)	6 (30.0)
6–10	12 (15.4)	6 (30.0)
11–15	6 (7.7)	1 (5.0)
> 15	26 (33.3)	7 (35.0)
No answer	19 (24.3)	-

Values are n (%) or mean ± standard deviation. SCD, sudden cardiac death.

Quantitative Web survey results

Most death investigators reported that SCD cases due to suspected heritable cardiac conditions are more (n = 31; 40%) or slightly more (n = 27; 35%) difficult to investigate than other cases. They also reported that they require more (n = 31; 40%) or slightly more (n = 31; 40%) communication with family members than other types of cases Tables 2 and 3). To communicate with families, death investigators described using different modalities, either alone or in combination. Their choice of modality depended on their personal preferences, the circumstances of the investigation, and/or the preferences of the family. On the survey, death investigators could choose multiple options to describe their communication process. They most often used the phone (n = 75; 96%), followed by in-person communication (n = 35; 45%) and e-mail (n=32; 41%); text messages (n = 8; 10%) and written letters were used less often (n = 8; 10%).

Table 2.

Difficulty of communication with family members of sudden cardiac death victims

Level of difficulty	n (%)	Supporting quotations from survey respondents
More difficult	31 (39.7)	“They are more emotionally charged by families as they are less expected.”
Slightly more difficult	27 (34.6)	“[The investigation is] often less straightforward and [there are] often more questions to address”
About the same	18 (23.1)	“Every coroner case is a puzzle that needs to be solved, and every family wants answers.”
Slightly less difficult	1 (1.3)	“Traumatic deaths, suicides and unexplained death circumstances are much more difficult.”
A lot less difficult	-	None provided.
No answer	1 (1.3)

Table 3.

Frequency of communication with family members of sudden cardiac death victims compared to other cases. Frequency of communication n (%) Supporting quotations from survey respondents

Greater frequency of communication	31 (39.7)	“[There are] more questions to answer and often more people to call.”
Slightly greater frequency of communication	31 (39.7)	“At least one or more extra conversations are needed after the genetics come back in order to disclose [risk] and ensure [the family] understands the implications.”
About the same	15 (19.2)	“Spending time on the phone with families is more so based [sic] on their unique requirements.”
Slightly lower frequency of communication	0 (0.0)	None provided.
A lot lower frequency of communication	0 (0.0)
No answer	1 (1.3)

During their investigations, death investigators reported communicating with a variety of experts, including their supervising death investigator, the Genetic Condition Coordinator and/or family liaison support personnel, family physicians, and first responders. They also frequently consulted genetic specialists (n = 51; 68%), forensic pathologists (n = 44; 59%), cardiac arrhythmia specialists (n = 44; 59%) and more-experienced death investigators (n = 13; 17%). Other experts’ involvement depended on the death investigator’s perceived scope of their own role, their prior experience, the family’s needs, and the characteristics of the case.

Nearly half of surveyed death investigators (n = 35; 47%) were aware of recommendations from their institution for investigating SCD cases. Most death investigators who were aware of them described them as very or extremely helpful (n = 24; 65%).

Qualitative telephone interviews

In our thematic analysis of interview transcripts, we revealed that participants were intrinsically driven by 3 primary communication goals, which ultimately drove the selection of the strategies used to achieve them (theme 1). Yet, a variety of factors influenced their ability to communicate as they hoped to, limiting their ability to communicate effectively (theme 2), including characteristics of the family, the involvement of other professionals, characteristics of the investigation, access to resources, and system-level barriers, all of which are presented as subthemes.

Theme 1

What are death investigators aiming to communicate—and how? Death investigators reported that their primary goals were as follows: (1) to inform the family about the cause of death; (2) to protect the living by informing family members about their risk for heritable cardiac conditions; and (3) to recommend the referral of family members for cardiac follow-up and screening.

Death investigators described strategies to achieve their communication goals, often drawing on their training and experiences as healthcare professionals to establish rapport with families that worked best for them. Many aimed to communicate with empathy and compassion, expressing their willingness to be open and available to answer family members’ questions, encouraging families to reach out if they needed additional information, and offering reassurance. A death investigator described their desire as follows: “To listen. Show compassion and empathy. To tell them that I am there for them.” and that “it’s just overwhelming grief [for the families] and sometimes they have guilt and so I need to reassure them there isn’t anything they could have done differently.” (Participant 5).

Death investigators discussed the importance of setting expectations for the death investigation and providing frequent updates throughout, to help families prepare for the timelines and logistics. One death investigator described informing the primary contact of the SCD victim that “we haven’t found a cause of death, it’s going to take longer, we’re going to be doing genetic testing and other toxicology. I’ll call you again, but please be prepared, it’s going to be maybe three months, maybe longer before you hear from me again.” (Participant 4). Many participants described following up with families, repeating information, using plain and clear language, and reading reports alongside family members to enhance family members’ recall and understanding. One death investigator described the value in following up by phone, saying “that’s where the follow-up phone call comes in. Quite often [families] have a few more questions and I have some more questions too, so it’s a much longer conversation usually.” (Participant 14).

Theme 2

What influences death investigators’ communication? Death investigators reported that numerous factors impacted their selection and perceived usefulness of communication strategies, which prevented some death investigators from communicating as desired. Influencing factors included the following: (1) the characteristics of the family; (2) the involvement of other professionals; (3) characteristics of the investigation; (4) access to resources; and (5) system-level barriers.

• 1Characteristics of the family. Family-related characteristics included differences in the ability of family members to retain and understand information, primarily because of their grief. One death investigator noted that “we know that people only retain around 10% of what they’re told” (Participant 8) during the period immediately following the death. Some death investigators reported tailoring their language to families’ level of education and understanding of medical terminology. One death investigator described the challenge of “explain[ing] some of the details to the family. And [being] technical enough without overwhelming families.” (Participant 7). Some death investigators had the perception that families’ prioritization of the death investigation and seeking screening varied, as one described that “people have a lot going on in their lives. Is it because they’re too busy trying to buy groceries and keep a roof over their head and keep their kids in school and this is just number 20 on their list of priorities?” (Participant 16). Additional family-related characteristics included emotionally heightened circumstances following the death of a loved one, and complicated family dynamics.
• 2Involvement of other professionals. Death investigators spoke of their responsibility in managing communication among family members and other experts throughout the investigation. One death investigator described themselves as a “quarterback,” who was “there to make sure that the various members of the team talk to each other [and] do their appropriate tasks” and said that it’s their “role to really help coordinate things to ensure families are aware of the resources and to ensure that nothing falls between the cracks.” (Participant 17). When cases did involve multiple other professionals, questions arose about “who has ownership and responsibility” of communicating results to families, and the importance of determining “what’s considered the scope of [their] work and what isn’t.” (Participant 12).

For others, determining who to engage in each case was challenging. For example, one death investigator described the complexity of this process, saying “who needs genetic testing and who should they see for that? Do they see a cardiologist? Because I don’t know that the cardiologist in my town would necessarily be able to refer them. I can’t refer them to a geneticist; they need to see their family doctor and have their family doctor refer them to a geneticist.” (Participant 7). Some death investigators in Ontario reported directing family members of SCD victims to the Genetic Condition Coordinator to facilitate cascade screening (genetic testing of family members of an individual found to have an SCD due to a genetic cause), cardiac care, and genetic testing. Others reported directing family members to their family physician, who may assume responsibility for organizing further testing of surviving family members, connecting them with specialists, and discussing the death investigation results.

• 3Characteristics of the investigation. Death investigators explained the heightened challenge of managing suspected heritable cardiac condition SCD cases, as compared to other cases, because the cause of death can be difficult or impossible to determine. This results in greater responsibility for death investigators, who may help families navigate unknown circumstances. For example, one death investigator described such a situation as follows: “the idea that even at the end of all the testing there’s not a satisfying answer that [they] can give to the families. Their disappointment is probably the hardest thing to deal with.” (Participant 3). The lack of answers can lengthen the process, sometimes to an extent “upward of a year,” (Participant 1) ultimately leaving families without a determined cause of death. One death investigator described phoning families to say “we still don’t really know. We’re going to do extra tests and that’s going to take months” and said “that’s really hard on these families.” (Participant 7).
• 4Access to resources. Death investigators described how their access to resources, their medical background, and their professional and skills development shaped their communication with families of SCD victims. For example, one death investigator said: “I’m a family medicine doctor by training, so we do a lot of interviewing and finding out the expectations of families. I think that kind of training of how to communicate has been probably what I draw on the most.” (Participant 3). Others described having to independently seek resources and professional development opportunities to ensure that they were best prepared to communicate detailed and accurate information to families.

Many death investigators were aware of recommendations from their institution for investigating SCD cases including standardized approaches based on best practices. Recommendations were delivered via investigation of manuals, courses, and consultations with experts. Many death investigators expressed the value of additional training in dealing with specific types of cardiac conditions, counselling of families, and the intricacies of referral processes. This training includes understanding when and how to contact other experts, such as geneticists, genetic counsellors, and medical specialists. Death investigators also suggested implanting resources, such as educational documents on SCD, providing training on how to use the institutional database, and supplying lists of experts to contact if needed.

• 5System-level barriers. Some participants noted several system-level barriers that interfered with the frequency and timing of providing useful and ethical communication. Identified barriers included gaps of several months between the initial contact with families to the delivery of postmortem reports results. This barrier was deemed to be critical, as such delays impacted family member’s referrals for cascade screening to determine their risk for SCD due to a heritable cardiac condition. One death investigator described that they “had one case in particular that took 11 months, and every single week [the family was] emailing [them] questions.” (Participant 3). One death investigator described the challenge of long wait times in cases in which SCDs are attributable to heritable cardiac conditions, as follows: “if I know that this family carries Brugada Syndrome, and I’m not going to get back to them for a year and a half, but I know the results, I think ethically there’s a bridge there…Like a huge error on our part, to not tell them as soon as we have that information.” (Participant 1).

Another challenge brought forth by a death investigator in Ontario was the necessity for families to request in writing the final death investigation reports from each regional office within the Office of the Chief Coroner of Ontario. The participant went on to explain that the reports cannot be released by the death investigators themselves, and considered this to be a critical barrier for families who may not be aware that requesting the final report is their responsibility.

Theme 3

How can communication improve? Death investigators offered recommendations that may improve their communication with families, while improving the efficiency of the system. One participant suggested sending a letter to families of SCD victims to help them to both remember information and relay the potential risk to other family members: “when they’re getting this information, it may be all a buzz to them, they could be in the grocery store when I call. They could be anywhere or not understand. And then have to pass the information onto their partner or their children and they don’t really know what to tell them.” (Participant 1). Others spoke about the importance of involving the family physician in the communication process, as the physician can explain the information in the death investigation reports and initiate any referrals: “Sometimes the family doctor will initiate [the referral] and sometimes the family does and sometimes they want to sit down with the family doctor and have them read and explain it to them.” (Participant 16).

To improve the timeliness of communicating the potential risk for heritable cardiac conditions, one suggestion was the automation of current systems, such as ensuring cases get “flagged for follow-up with genetics” (Participant 3) or adding a “centralized reminder system” (Participant 12) to ensure cases are not delayed or forgotten. Another death investigator suggested their institution should create new processes or fund new roles to support their investigations: “I think that if the office feels that it’s really important for us to be doing genetic follow-up with cases like this, there should be someone like [the Genetic Condition Coordinator], who is actively engaging with us…so that we do things properly and we don’t miss things.” (Participant 9).

Data integration

The quantitative survey results allowed us to appreciate the various communication strategies that are used (eg, phone, in-person, text), whether alone or in combination. Through the interviews, we gained an appreciation of why these various strategies are used and for what purposes (eg, to inform the family about the cause of death; to protect the living by adequately informing family members about their risk for heritable cardiac conditions; and to recommend the referral of family members for cardiac follow-up and screening). The survey revealed that suspected heritable cardiac cases pose extra challenges, compared to other cases (eg, a higher frequency of communication, lengthier investigations). The qualitative data revealed the numerous barriers that make these cases more difficult, including characteristics of the family, involvement of other professionals, characteristics of the investigation, access to resources, and system-level barriers. Further training or guidelines may improve the readiness of death investigators to engage in challenging investigations and discussions and allow for improved communication between death investigators and family members of SCD victims.

Discussion

Investigations into young SCD cases of suspected heritable cardiac conditions are often complex and lengthy, leading to unique communication dynamics among death investigators and family members of SCD victims. The strategies death investigators use to achieve their communication goals with family members may be supported or hindered by numerous factors. Characteristics of the family, involvement of other professionals, characteristics of the death investigation, death investigators’ access to resources, and system-level barriers all shaped their communication. Many of the factors influencing the communication are outside of the control of the death investigator. Death investigators often are required to adapt to the needs of the family, including adjustments for family dynamics, grief, and family members’ ability to retain information. Moreover, the uncertainty involved with SCD cases, which often last months, may result in less clear communication, compared to that in other cases.

Although death investigators described many strategies to achieve their communication goals, still no formal guidelines or training are yet available to support this aspect of their role in practice.⁶ They seem to draw on their training and experiences as physicians to develop a way to communicate with families that works for them. Although not the case in this study, some jurisdictions rely on non-clinically trained death investigators who may not have received any prior training or clinical experiences in healthcare communication. Providing guidance and formal standardized training is especially critical in these circumstances, to ensure compassionate and effective interactions with bereaved families. Our team’s prior work in Ontario has found that families of SCD victims struggle to comprehend crucial information during the stressful period following the death of a family member.⁸ This finding indicates that the current communication strategies employed by death investigators may be insufficient to adequately inform family members of the cause of death and of their own potential risk for heritable cardiac conditions. Additionally, death investigators often independently seek outside resources, extra training, or other experts to inform their communication practices with families. All-encompassing, standardized training or guidelines may improve the preparedness of death investigators to communicate with families and achieve their communication goals.

Like others,20, 21, 22 our team’s prior research that interviewed family members of SCD victims supports many of the perspectives provided by the death investigators.⁸ We found that both family members and death investigators understand the immense role that grief and shock play following an unexpected death, which may require adjustments to communication strategies. Additionally, family members and death investigators both reported that SCD investigations can be lengthier and more complex, particularly when the cause of death is unknown.

Implications for clinical practice

Death investigators provided a wealth of suggestions on how the communication processes between them and SCD families could be more effective. Some suggested that multiple modes of communication, including a written letter in addition to verbal exchanges, should be used to help families understand and share the cause of death and risk to other family members. These findings are similar to our previous work in which SCD families were interviewed about their experiences.⁸ In that study, family members expressed that they valued receiving communication in a variety of formats, to ensure they could review details later and make sense of important information on their own terms. Other suggestions from death investigators included the importance of involving the family physician to explain the reports and to initiate referrals. This aspect is important, as little is known about the role of the family physician and how they contribute to the communication of SCD risk to families and facilitate cascade screening. Future research should explore the communication processes among family physicians, SCD families, and death investigators, to help streamline and facilitate referral processes.

Strengths and limitations

A strength of our study was the integration of quantitative and qualitative data at several levels. We used the quantitative survey results to inform the interview guide, acquiring complementary and deeper explanations related to the survey responses. This process allowed us to probe some of the survey results and permitted a more targeted interview process, offering deeper insights into the results of the web survey. A limitation of our study was the low number of participants from Nova Scotia, in comparison to the number from Ontario. This difference is to be expected, because Nova Scotia has a much smaller death investigation system, serving a smaller population than Ontario. Our overall sample represents a very large province and death investigation system, so our results may not be applicable to smaller regions and systems.

Another limitation of this study was the lack of ethnic diversity of participating death investigators. The results from this study may not accurately reflect the more ethnically diverse Canadian population. Whether the ethnic distribution of participants in this study is representative of the ethnic distribution in death investigation systems is unknown. Further, the perspectives represented in this study represent only those of death investigators who volunteered to share their experiences. Death investigators who declined to participate could have distinct communication goals and strategies that are not captured. Regardless of this limitation, the perspectives captured provide insight into the network of strategies that death investigators use when communicating with family members of SCD victims. Finally, we did not collect demographic information on the deceased individuals, nor on the family members who were in communication with death investigators. We acknowledge that the sociodemographic characteristics of the victims and their family members, such as age, gender, educational level, and others, potentially could influence communication experiences and outcomes. This area is one for further inquiry.

Conclusion

Death investigators use a variety of strategies to achieve their communication goals when informing family members of SCD victims about the cause of death and their own risk for heritable cardiac conditions. The strategies used may be influenced by the following: (1) characteristics of the family; (2) involvement of other professionals; (3) characteristics of the investigation, (4) access to resources, and (5) system-level barriers. Further training or guidelines may allow for improved communication among death investigators and family members of SCD victims, by improving the preparedness of death investigators to engage in challenging investigations and discussions.