Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach

Abstract

Background

Death literacy is viewed as a resource that enables individuals and communities to navigate the end of life. The Lancet Commission on the Value of Death has recommended its society-wide development. However, to be able to increase death literacy, insight is first needed into the factors that contribute to it.

Objectives

This study aims to develop an evidence-informed conceptual model of the causal relationships between death literacy, its theorized determinants, and other contributing factors.

Design

We applied a mixed-methods design, consisting of a scoping review and expert panels.

Methods

We conducted a scoping review following Arksey and O’Malley’s framework and the PRISMA-Scr guidelines. We searched 5 databases (PubMed, Embase, Web of Science, Scopus, and PsycInfo) for articles reporting on (facets of) death literacy and making quantitative or qualitative causal inferences. Concurrently, we conducted 3 expert panels with academic and experiential experts to identify additional determinants not identified in the literature. Deductive thematic analysis was used. Finally, we built a causal model using the Evidence Synthesis for the Construction of Directed Acyclic Graphs (ESC-DAG) methodology.

Results

We identified five death literacy determinants at the individual level (lived end-of-life experience, indirect exposure, prior knowledge, end-of-life related attitudes, and social connectedness), three at the environmental level (political context & policy, organizational culture, and external resources), and three contextual variables (cultural norms and sociodemographic and personal characteristics).

Conclusion

Combining quantitative and qualitative findings, we propose a conceptual causal model visualizing the different pathways to increased death literacy. The model shows the complexity behind death literacy development, highlighting the contribution of factors outside of the individual. It provides a foundation and guidance for future confirmatory research and the development of interventions to increase death literacy.

Plain Language Summary

Death literacy is the knowledge and skills that let us navigate the end of life and it can help us play a larger role in providing care and support for people confronted with death, dying, and bereavement. However, not much is known yet about how death literacy develops. Based on the literature and input from experts, and using a method that gradually synthesises their input using causal reasoning, we integrated all the possible factors that may influence how people develop death literacy into one model. Our final model identifies 11 factors that influence how death literacy develops. At the individual level, lived experience (e.g., caring for a dying person), indirect exposure (e.g., listening to a podcast about grief), prior non-end-of-life related knowledge (e.g., health literacy), and end-of-life related attitudes (e.g., willingness to provide end-of-life care) influence whether and how death literacy. At the environmental level, policy and the political context, external resources (e.g., 24/7 nurse support), and organisational culture influence whether and how individuals develop death literacy. Lastly, sociodemographic characteristics (e.g., gender or ethnicity) and personal characteristics (e.g. confidence) and cultural norms (e.g., death as taboo) shape individuals’ pathways to higher death literacy. In addition to individual factors, our results show the importance of factors around us (our networks, environments, organisations) to the development of death literacy. The model offers a basis for further research into death literacy and for the development of programs aimed at increasing death literacy.

Introduction

Due to a growing population of frail older people and people with serious illness, ¹ the demand for palliative and end-of-life care is rising. ² To face this public health challenge, approaches such as creating Compassionate Communities ³ have emerged, which reserve a larger role for community members in the provision of care and support for people confronted with serious illness, death, dying, and loss. ⁴ To be able to provide end-of-life care and support, community members may benefit from death literacy, ⁵ the knowledge and skills that enable individuals to gain access to, understand, and act upon end-of-life and death care options. Death literacy comprises four dimensions: (1) factual knowledge about health services and policies, medical procedures and end-of-life planning; (2) practical knowledge (skills) in personal care, talking about death and dying, negotiating with health and other service providers, and care and disposal of the body; (3) experiential learning, whereby attitudes and beliefs towards death and care around the end of life are transformed by being actively involved in caring; and (4) community capacity (for social action) whereby people can share knowledge and skills from caring experiences with their networks. ⁵ The conceptualisation of death literacy as a resource suggests that by accumulating death literacy, individuals and communities may benefit from a protective effect on their well-being and self-efficacy.

In their recent report, the Lancet Commission on the Value of Death explicitly recommended the development of death literacy for all. ⁶ However, to increase death literacy, insight is needed into how individuals become death literate. Research on the topic remains limited: beyond the association with end-of-life (care) experience^7–10 little is known about how death literacy develops. It remains to be empirically shown which pathways, beyond lived experience, lead to death literacy and which factors contribute to its development. An integrated causal model may provide a foundation for further research and for interventions aimed at increasing death literacy.

The objective of this study is to develop an evidence-informed conceptual model that summarizes key domains and theorised relationships involved in death literacy development. Building on a review of the literature and expert opinions, this study aims to answer the following specific research questions: 1) What are the determinants of death literacy?; And 2) what factors influence the relationship between death literacy and its determinants?

Methodology

Design

We applied a convergent mixed methods design, consisting of three phases (Figure 1). Phase 1 identified relevant variables for the conceptual model (theorized determinants of death literacy and other contributing factors) using a scoping review and qualitative expert panels with academic experts and experts by experience. Data from these two methods were aggregated before the start of Phase 2. This entailed merging the list of variables identified in each method and performing deduplication. Phase 2 entailed a pragmatic application of the Evidence Synthesis for the Construction of Directed Acyclic Graph (ESC-DAG) methodology ¹¹ to the identified variables to construct the causal model. Data collection was designed to capture determinants and outcomes, but outcomes will be reported in a future publication. In Phase 3 we conducted a complementary parallel analysis consisting of meta-inferential integration of findings from both methodologies. Results are reported in a joint display table. ¹²

Figure 1.

Convergent mixed methods design.

Concepts

We operationalised death literacy as a type of critical health literacy applied to the end of life, borrowing from Nutbeam’s conceptualization of health literacy. ¹³ Critical health literacy reflects the capacity to analyze information critically and take decisions to exert greater control over one’s circumstances. Key to critical health literacy is its dimension of empowerment and population benefit, rather than mere individual benefit. Death literacy shares critical health literacy’s ¹⁴ emphasis on individual and community empowerment. On an individual level, death literacy enables a person to provide or organize end-of-life or death care for a loved one, gain access to end-of-life care, and make informed end-of-life decisions. ⁵ On a community level, it increases the capacity of caring, relocating palliative care from the medical sphere to the social sphere. Notably, death literacy has been proposed as an outcome of compassionate communities, as a measure of community capacity for care and support at the end of life.^10,15

This conceptualization of death literacy engenders the following scope: non-professionalized knowledge, skills or self-efficacy related to talking about end-of-life experiences with others, offering or providing care and support for others with end-of-life experiences, and accessing care and support around end-of-life experiences (including making choices regarding one’s own end-of-life care options). In accordance with the literacy approach, we adopted a broader, functional understanding of knowledge that includes competencies. The knowledge component was interpreted as the ability to seek out, comprehend, act upon, or critically analyze information related to death and dying. (For scoping review inclusion and exclusion criteria, see Table 1).

Table 1.

Inclusion and exclusion criteria.

Inclusion	Exclusion
Study design
​	Feasibility and acceptability studies, cost evaluation studies.
​	Intervention evaluations, evaluations of scales or assessment tools.
Subject
Publications concerning literacy around the end-of-life*, defined as follows: “non-professionalized knowledge, skills, or self-efficacy related to talking about end-of-life experiences with others, offering or providing care and support for others with end-of-life experiences, and accessing care and support around end-of-life experiences (including making choices regarding one’s own end-of-life care options)”, with end-of-life being defined as “dying with serious illness, informal caregiving for people who are dying with serious illness, and bereavement”.	Publications concerning serious illness without describing the end of life.
Publications discussing a causal relationship where critical literacy lies on the causal path.	Publications concerning (a lack of) knowledge without addressing its relationship to literacy or its outcomes.
​	Publications evaluating a specific type of therapy or treatment without addressing its relationship to literacy or its outcomes.
​	Publications concerning a type of loss that is not related to the end of life.
​	Publications reporting experiences specific to the Covid-19 pandemic that do not mention death literacy.
Others
Publications which have been peer-reviewed.	Publications only available in other languages than English or Dutch
​	Conference abstracts, news articles, models of care, letters, commentaries, study protocols, editorials, non-peer-reviewed articles, and book chapters.
​	Publications for which the full text is not available.

Due to the novelty of the concept, literature on death literacy is scarce. Operationalising this conceptualisation in a search string (Table 2) allowed us to widen our scope beyond studies that report on death literacy explicitly and include those that report on (an aspect) of death literacy without explicitly mentioning the concept.

Table 2.

Search strategy.

​			Terms	Rationale
1	​	​	“death literacy” [tiab]	Publications on death literacy.
OR	​	​	​	​
​	2	​	“Hospice Care” [Mesh] OR “hospice care” [tiab] OR “terminal” [tiab] OR “life limiting condition*” [tiab] OR “life limiting disease*” [tiab] OR “life limiting illness*” [tiab] OR “life threatening condition*” [tiab] OR “life threatening disease*” [tiab] OR “life threatening illness*” [tiab] OR “serious illness*” [tiab] OR “Critical Illness” [Mesh] OR “critical illness*” [tiab] OR “palliative care” [Mesh] OR “palliative care” [tiab] OR “end-of-life” [tiab] OR “grief” [tiab] OR “griev*” [tiab] OR “Bereavement” [Mesh] OR “bereave*” [tiab] OR “mourn*” [tiab] OR “Death” [Mesh:noexp] OR “dying” [tiab] OR “dead” [tiab] OR “mental disorders/mortality” [Mesh] OR “Thanatology” [Mesh] OR “Thanatology” [tiab]	Publications need to concern serious illness, death, dying, or bereavement.
​	AND	​	​	​
​	3	​	“Health Literacy” [Mesh] OR “literac*” [tiab] OR “caregivers/education” [Mesh] OR “volunteers/education” [Mesh] OR “Cultural Competency” [Mesh] OR “cultural competenc*” [tiab] OR “death competenc*” [tiab] OR “knowledge” [tiab] OR “skills” [tiab] OR “self efficacy” [Mesh] OR “self efficacy” [tiab] OR “Self-Management” [Mesh] OR “self-management” [tiab]	Publications must concern individuals’ or communities’ knowledge, skills, or self-efficacy in providing care and support around the end of life.
​	AND	​	​	​
​	​	4	“Public Health Practice” [Mesh] OR “Public Health Practice” [tiab] OR “Social Support” [Mesh] OR “Social Support” [tiab] OR “Social Capital” [Mesh] OR “Social Capital” [tiab] OR “Community networks” [Mesh] OR “Social Environment” [Mesh] OR “Social Environment” [tiab] OR “Community Participation” [Mesh] OR “community connector*” [tiab] OR “community initiative*” [tiab] OR “community-led” [tiab] OR “community group*” [tiab] OR “community organisation*” [tiab] OR “community organization*” [tiab] OR “community participation” [tiab] OR “community network*” [tiab] OR “informal” [tiab] OR “Volunteers” [Mesh] OR “volunteer*” [tiab] OR “civic engagement” [tiab] OR “civic society” [tiab] OR “civil society” [tiab] OR “self help group*” [tiab] OR “support group*” [tiab] OR “neighbor*” [tiab] OR “neighbour*” [tiab] OR “family care*” [tiab] OR “social connection” [tiab] OR “social network” [tiab]	Publications must concern care and support for others with end-of-life experiences…
​	​	OR	​	​
​	​	5	“end of life conversation*” [tiab] OR “eol conversation*” [tiab] OR “eol decision*” [tiab] OR “end of life decision*” [tiab] OR “End-of-life care perceptions” [tiab:∼0] OR “eol care perceptions” [tiab:∼0] OR “end-of-life planning” [tiab] OR “eol planning” [tiab] OR “end-of-life care planning” [tiab] OR “eol care planning” [tiab]	… or an individual’s knowledge, decisions, perceptions, and planning regarding their own end-of-life.

Note. The structure of the search string looks as follows: #1 OR (#2 AND #3 AND (#4 OR #5)).

Data collection

Scoping review

Since death literacy is a novel concept and the aim of our review is exploratory, we conducted a scoping review. Scoping reviews are suitable for knowledge synthesis of exploratory research questions, especially when a body of literature has not been comprehensively reviewed, as is the case for death literacy. The protocol for this scoping review was registered on Open Science Framework (DOI 10.17605/OSF.IO/EACMX). We followed the methodological approach proposed by Arksey and O’Malley, with further refinement based on guidance from the Joanna Briggs Institute. ¹⁶ We adhered to the PRISMA Extension for Scoping Reviews (PRISMA-Scr) guidelines in designing and reporting this study (Suppl. 1). ¹⁷

Search strategy and eligibility criteria methodology

We searched five different databases (PubMed, Web of Science, Embase, Scopus, and PsycINFO) for studies published between January 1, 2010, and July 3, 2024. This time frame is justified by the exploratory, rather than exhaustive, nature of our review. The first death literacy paper was published in 2015, therefore we selected the first round number prior to 2015. All types of international peer-reviewed publications were included, excluding conference proceedings, commentaries, letters to the editor, editorials, and book chapters. The search strategy (Table 2) was developed in collaboration with an information specialist from the university library. A list of 10 core publications on death literacy that were expected to appear in the search results was drafted in advance by AV and SV to help validate the quality of the search query (Suppl. 2). We optimized search terms through iterative trial searches until these core publications were retrieved.

Expert panels

In addition to the scoping review, we conducted three expert panels, two with academic experts (P1, P2) and one with experts by experience (P3). Expert panels were organised between November 2024 and February 2025. Academic experts were defined as international academic experts in end-of-life care, death studies, and public health palliative care. They were identified via (1) a search of the literature on death literacy and related concepts (i.e. grief literacy and end-of-life health literacy), (2) our participation in the Death Literacy Symposium (2024, London, organized by the International Death Literacies Network, led by Steven Vanderstichelen, Libby Sallnow, and Kerrie Noonan), and (3) the professional networks of the authors. The panels with academic experts were held in English and took place online using Microsoft Teams. We organized two panels with this type of experts to accommodate different time zones. The duration of each of these panels (P1, P2) was 120 minutes.

Experts by experience were defined as individuals with personal end-of-life experience and whose experiential knowledge has transformed into experiential expertise through participation in self-help groups, trainings, or other instances where they could exchange and reflect upon end-of-life experiences with others. ¹⁸ They contribute valuable collective knowledge and experience. To qualify as an expert by experience, participants’ engagement with end-of-life issues had to be ongoing, ideally through participation in a patient association or self-help group. Experts by experience were recruited in Flanders and Brussels with the help of (palliative care) organizations and the professional networks of the authors. The panel of experts by experience (P3) took place in person, was held in Dutch, and lasted 150 minutes.

All expert panels were moderated by SV with AV as an observer. Collective mind mapping was used as a prompt to elicit causal associations with death literacy (see Suppl. 3 for topic guides). The panels were audio-recorded, transcribed and pseudonymized for analysis.

Data analysis

Phase 1: Identifying relevant variables

Rayyan – an online platform that facilitates cooperation between multiple reviewers in large scale reviews – was used for the article screening process of the scoping review. ¹⁹ We did not use its AI tool. Adhering to recent guidelines, ²⁰ AV and SV did a calibration exercise of 50 articles to test the screening tool. Once the screening tool and criteria were finalized, SD, FV, and DD completed a new piloting exercise. AV, SV, SD, FV, and DD then independently screened a selection of the titles and abstracts. 20% of the articles were double screened, aiming at an agreement rate of min. 90%. ²¹ Full text screening was done exclusively by AV and SV, once again with 20% double screening. An agreement rate of min. 90% was immediately obtained for both screening rounds. Through the screening process, the two main reviewers met weekly. Articles marked as “Maybe” by either author or conflicts in inclusion decision were discussed by AV and SV. Conflict was resolved through discussion.

AV used an extraction sheet in Excel to capture the following data from each publication: metadata, whether death literacy was conceptualized as a determinant or an outcome in the study, the construct(s) studied, the aspect(s) or outcome(s) of death literacy addressed, pertinent theories, and relevant variables (categorized as determinant, outcome, mediator, or moderator).

The transcripts of the expert panels were analyzed using deductive thematic analysis. ²² Major themes were derived from the data, categorized as determinants, outcomes, mediators, or moderator, and added to the list of variables created during the scoping review, resulting in an integrated data set that served as input for the ESC-DAGs methodology.

Phase 2: Building the causal model

Combining systematic evidence synthesis and causal thinking, ESC-DAGs provides a structured approach for using background knowledge to determine which variables and connections between variables should be included in a causal model. ¹¹ The methodology, developed by Ferguson et al., has gained popularity in public health research ²³ and has previously been applied in the study of death literacy. ⁷ Directed Acyclic Graphs (DAGs) are graphical models that represent causal relationships between variables and are highly suited for integrating scientific evidence into causal diagrams. ¹⁹ Theory and background knowledge play a central role in DAG construction. ²⁴ The main goal of the ESC-DAGs method is not to evaluate the literature (i.e., which variables have the strongest effect), but to synthesize all potential variables identified in research into an integrated DAG. This makes the methodology highly appropriate to inform a causal conceptual model of how death literacy develops and what factors contribute to it.

The list of variables identified in the scoping review and expert panels was used to build a Directed Acyclic Graph (DAG). Our model was constructed using an adaptation of the 4 core steps of the ESC-DAGs protocol ¹¹ : (1) synthesis, (2) mapping, (3) translation, (4) recombination (see Figure 2 for visualization). Traditionally, the ESC-DAGs methodology entails building a DAG for each study, before synthesizing them into an integrated DAG. Due to the large quantity and heterogeneity of our data, this was not feasible. Instead, we synthesized the variables before proceeding to the mapping stage, changing ‘synthesis’ from the third into the first step.

Figure 2.

Visual representation of the pragmatic application of the ESC-DAGs methodology.

This pragmatic adjustment of the ESC-DAG protocol is justified by the objective of this study: the creation of a preliminary, conceptual causal model informed by academic literature and expert input rather than an operationalized, statistical model. Every part of the process was recorded using a decision log based on Ferguson’s example. ¹¹ DAGs were built using the R package dagitty, designed for creating, editing, and analyzing causal diagrams. ²⁵ The application of the ESC-DAGs methodology to large scoping reviews goes as follows:

• 1. Synthesis. The variables extracted from the data are grouped thematically into clusters. This iterative process is repeated until variables can no longer be meaningfully combined.

• 2. Mapping. An ‘implied graph’ (IG) is created by assuming a causal relationship between every unique pair of variables and listing these relationships in an IG index in Excel.

• 3. Translation. During this phase, each relationship (edge in ESC-DAGs terminology) in the IG index is assessed. This means evaluating whether the relationships recorded during the mapping stage are truly causal or not. The translation process determines this based on two causal criteria: (a) temporality and (b) face-validity. Temporality assesses whether the proposed cause precedes the effect. Face-validity questions whether the posited causal relationship is plausible at face value. (The non-binding, third criterion ‘recourse to theory’ was omitted due to the low level of empirical evidence.) If at least one criterion (temporality or face validity) is not fulfilled, the relationship is deleted. If the relationship is retained, a counterfactual thought experiment is then conducted to make our assumptions explicit. ²⁶ This entails mentally changing one variable’s value and imaging the hypothetical ripple effects to explore how this variable affects the outcome (e.g. “If all participants were female, would this affect the amount of end-of-life care experience observed in the sample?”).

• 4. Recombination. This entails combining variables and can serve different purposes (i.e. reducing complexity or establishing consistency). It is executed in case of theoretical support for the recombination or if the variables have similar inputs and outputs.

Phase 3: Mixed-methods analysis

In a joint display table, ¹² we summarised the data content and volume per method (i.e. scoping review or expert panels) for each variable. We then assigned one of the following meta-inferential labels: discordance (findings from the two methods contradict each other), confirmation (same findings from both methods), expansion (same findings from both methods, but one method provides additional information), or gaps (only one method reported on this variable). Quotes from the panels were added to illustrate the patterns identified in the data.

Results

Scoping review

The scoping review search retrieved 10.054 papers. After duplicate removal, 5.409 papers were uploaded to Rayyan for title and abstract screening. Of the 276 articles included for full text screening, 17 were removed because no full text could be accessed. 140 articles were included for analysis (see Figure 3 for the screening flowchart; see Suppl. 4 for a detailed list of the included papers). From these articles, we extracted 1.538 variables that lie on the causal path to death literacy.

Figure 3.

Literature screening flowchart.

Expert panels

In our expert panels, we consulted 17 international academic experts (P1: n=8; 63% female; P2: n=9; 89% female) and 10 experts by experience (P3: n=10; 70% female). One expert by experience (female) was unable to participate during the panel and was interviewed individually on a later date (semi-structured interview, duration 60 minutes). We analyzed the data from the expert panels using thematic analysis and extracted 165 variables (See Table 3 for participant demographics).

Table 3.

Participant characteristics.

Academic experts		Panel 1 (N=8)	Panel 2 (N=9)
Gender	female	5	8
	male	3	1
Experience	Early career	4	3
	Established	4	6
Origin	Asia	0	3
	Europe	5	0
	North America	1	3
	South America	2	0
	Oceania	0	3
Expertise	Death literacy	2	4
	Public health palliative care	3	1
	Community-based palliative care research	1	1
	Health literacy	1	0
	End-of-life health literacy	1	0
	Grief literacy	0	2
	Equity in palliative care	0	1

*Including the expert interviewed individually.

Constructing the causal model

We integrated the variables extracted from the scoping review and the expert panels, manually removing any duplicates. Using the remaining 1.318 variables, we applied the four steps of the ESC-DAGs methodology to build the conceptual causal model. Synthesis. Using deductive thematic synthesis, the 1.318 variables were progressively merged into larger clusters by AV, until 70 variables remained, 55 of which were predictors of death literacy. The remaining 16 variables were outcomes of death literacy and will be addressed in a future paper. Mapping. 2.415 potential causal relationships between variables were recorded in the IG index. Translation. Of these 2.415, 1.305 relationships were retained. Another 328 relationships were removed as they concerned outcomes of death literacy (to be reported in a future paper). This resulted in 977 causal relationships in the final dataset. Recombination. The 55 variables (hereafter termed subvariables) were recombined into 11 overarching clusters (variables) to reduce complexity (See Table 4, ‘Subvariables’, and Suppl. 5 for subvariable definitions). The final list of variables and subvariables was approved by the author group. Using dagitty, we plotted a DAG with those 11 clusters as variables (See Figure 4). This DAG was used as the basis for the conceptual model, which was built in a group meeting with all the authors and subsequently refined by AV (See Figure 5).

Table 4.

Variables and subvariables.

Variable	Definition	Subvariables
Lived end-of-life experience	Direct embodied experience with the end of life (e.g., losing a loved one, being an informal caregiver, working as cemetery staff, volunteering in the palliative care ward,…)	Personal experience with the end of life
		Professional experience with the end of life
		Experience as a volunteer in an end-of-life setting
		Interaction with healthcare services
Indirect end-of-life exposure	Any exposure, either active or passive, to the end of life that is not direct and embodied (e.g., listening to a podcast about a bereaved person or seeing informational posters about palliative care)	Indirect exposure to the topic of end of life (in different media or testimonials)
		Exposure to death education
Prior non-end-of-life knowledge	Health literacy, general literacy, and other types of literacy that are not directly related to the end of life.	Health literacy
		General literacy
		Digital literacy
		Legal literacy
End-of-life related attitudes	Attitudes related to or relevant in an end-of-life context.	Mortality awareness
		Death acceptance
		Fear of discussing the end of life
		Fears related to end-of-life caregiving
		Trust in institutions
		Information seeking engagement
		Willingness to discuss the end of life
		Willingness to provide end-of-life care
		Willingness to access end-of-life care
		Willingness to ask for and accept support
		Beliefs regarding end-of-life care
		Beliefs regarding end-of-life caregiving
		Self-efficacy engaging in end-of-life conversations
		Self-efficacy interacting with healthcare providers or services
		Self-efficacy providing end-of-life care or support
Social connectedness	Quality, quantity and perception of received social support, as well as various attitudes related to the end of life occurring/present in a person’s social network.	Social support
		Human capital
		Social capital
		Trust in personal network
		Social network’s distributed familiarity with end-of-life or healthcare
		Social network’s distributed mortality awareness
		Social network’s distributed knowledge related to (the) end-of-life (care) or health care
		Social network’s distributed fears related to the end of life
		Social network’s distributed trust in the death and/or healthcare system
		Social network’s distributed willingness to interact with or provide support related to the end of life
		Social network’s distributed beliefs regarding death and end-of-life caregiving
		Social network’s distributed self efficacy related to the end of life
Political context & Policy	The broader ideological and institutional priorities around death and dying. Policies in different settings (e.g., company, hospital, or government agency) directly related to the end of life or impacting people’s ability to navigate the end of life.	Political context
		Policy
Organizational culture	The shared system of values, beliefs, norms, and behavioural expectations that shape how people within an organization perceive, think, and act.	N/A
External resources	Any type of external resources that aid individuals in navigating the end of life (e.g., informational or practical resources, services, community support)	Availability of cultural resources regarding the end of life
		Availability of resources and services corresponding to your needs
		Quality of available resources
Sociodemographic characteristics	Attributes that describe an individual’s social and demographic background	Gender/sex
		Age
		Place of residence
		Socio-economic status
		Ethnicity
		Health status
		Religious/spiritual beliefs
		Migration background
		Member of a minority group in society
Personal characteristics	Enduring qualities, traits, and attributes not directly related to the end of life.	N/A
Cultural norms	The shared expectations, rules, and standards of behaviour related to the end of life and health care.	Cultural norms related to health care
		Cultural norms related to the end of life

Figure 4.

Confounded Directed Acyclic Graph (DAG) (colour code based on Figure 5).

Figure 5.

Conceptual death literacy model.

The conceptual model

The resulting model represents individual death literacy development. It contains variables on an individual and environmental level, as well as overarching contextual variables (orange and dark green). Within this contextual structure, we identified five individual-level variables (lived experience, indirect exposure, prior knowledge, attitudes, and social connectedness) and three environmental-level variables (political context & policy, organizational culture, and external resources). Cultural norms represent the macro-context, while sociodemographic and personal characteristics define a micro-context that together shape pathways to death literacy. Below, we will discuss the role of each variable in the development of death literacy, as described by the literature and experts. First, we will detail their suggested impact on death literacy, followed by their potential influence on other variables in the model.

Individual level

These variables are situated on the level of the individual and directly impact death literacy development. They concern (in)direct end-of-life experience, social connectedness, and end-of-life related attitudes and knowledge, which may or may not stem from previous experiences.

Lived end-of-life experience

The literature and the expert panels suggest that many types of experience may build death literacy, including various types of personal experience (e.g., providing end-of-life care, experiencing a loss, completing end-of-life planning documents, or involvement in end-of-life discussions), professional experience, and experience as a volunteer.

Leonard et al. ¹⁰ and Graham-Wisener et al. ⁸ found that those with lived experience scored higher on the Death Literacy index (DLI). Che et al. ⁹ linked professional experience with a higher DLI score. Johansson et al. ⁷ found a correlation between widowhood and working in healthcare and death literacy. In a study by Tilse et al. ²⁷ participants with informal caregiving experience, completing later life planning documents and/or professional experience reported higher levels of perceived knowledge of law on end-of-life decision-making. Wu et al. ²⁸ found that volunteers at the end of life reported increased ability to talk to family members. Involvement in end-of-life discussions was linked to increased comfort discussing death and dying ²⁹ as well as increased knowledge. ³⁰ Additionally, personal experience can inform someone’s end-of-life preferences, ³¹ teach them how to rely on others, ³² and serve as a motivator to volunteer in an end-of-life setting.^33–35 Studies reported that informal caregivers learned knowledge and skills via trial and error.^36,37 Experts by experience termed this “bumping into things” (S9P3, S10P3). However, experts noted that individuals with extensive personal experience may overgeneralize from their own situations and assume that others’ experiences mirror their own (Q2, see Table 5), which may reduce empathy and sensitivity to the diversity of dying and grieving processes.

Table 5.

Joint display table.

Variable	Scoping review		Expert panels			Mixed-methods meta-inferences
	n	Main insights	n	Main insights	Example quotes
Lived experience with the end of life	80	Articles mentioned types of lived experience beyond experience as an informal caregiver, volunteer, or professional experience, that can contribute to knowledge and skills related to the end of life. Lived experience often featured as a type of catalyst that fostered openness to the end of life.	3	Experts by experience considered lived experience as something that makes you more attuned to the topic. They emphasised the importance of moving beyond one’s own experience in order to help others.	Q1: As long as you aren’t confronted with it in your own environment, you always think it’s something that won’t reach you. (Speaker 12, Panel 3)	Expansion
					Q2: Because if we already had that [the knowledge that everyone grieves in their own way] in our society, then an employer would not look at it from the perspective of, yes, but I also lost my sister and I hardly had any contact with her. And I started working right away because working helps me. (S7P3)
Indirect exposure to the end of life	20	This received less attention in the literature. The emphasis was on its impact on attitudes.	3	Experts in both panels raised the potential impact of podcasts, literature, and anything that encourages reflection on the end of life. Experts by experience particularly emphasised the potential of indirect exposure as ‘planting seeds’.	Q3: Hearing about other people’s experiences through media, through books, podcasts is also a way to reflect on experiences you’ve had yourself or even just reflecting on what is important to you and values in life and death, and the end of life. And I think that could also be, like a facilitating factor. (S1P1)	Gaps
					Q4: S1P3: And those are small things that can also help, right? You know we asked schoolchildren to walk through the cemetery to the swimming pool and asked them questions like, is that a gravestone and so on. And that way you get…
					S10P3: (Interrupts S1P3) Planting seeds.
					S1P3: (Nods in agreement) Planting seeds.
Prior knowledge	37	Due to the great number of papers on end-of-life care decision-making, many articles mentioned the impact of health literacy. Studies on the experience of minority groups also mentioned the influence of general literacy.	1	This was briefly mentioned in an academic expert panel’s mindmap exercise as a factor impacting the development of death literacy.	Q5: S2P3: Literacy is going to be a big factor when other people are able to become death literate as well.	Gaps
					Researcher: And then we mean, functional or basic literacy?
					S2P3: Yeah, even health literacy, maybe.
End-of-life related attitudes	88	In many papers, attitudes featured as a mediator. For instance, they determine whether an individual can connect to new information.	3	The same insight emerged, although experts by experience in particular granted more attention to personal characteristics than end-of-life related attitudes.	Q6: I guess I’m thinking more to the, like, openness. Like, some people are drawn to talking about death and dying. (S3P2)	Expansion
Social connectedness	47	Social connectedness is an important factor influencing an individual’s outlook on and possibilities at the end of life.	3	The same insight emerged.	Q7: I believe the support network with families, friends, people you care about, they would be very important with death literacy. (S7P1)	Confirmation
Political context & Policy	5	Political context was not mentioned in the scoping review, and policy was featured less often in the scoping review than in the panels. When it was mentioned, it was often as a barrier and/or as a recommendation for improvement in the discussion section.	3	Experts by experience highlighted this especially, which is unsurprising considering how strongly their activities are affected by (the absence of) governmental support. Policy was mentioned in every panel, often as a barrier.	Q8: My alderman is now in the Flemish Parliament. She’s taking that [the importance of end of life] with her. That’s fantastic, isn’t it? (S1P3)	Gaps
					Q9: Policy is so slow and ponderous. It even hinders us sometimes. (S4P3)
Organizational culture	50	Most studies concerned a health care setting and focused on creating a safe, supportive environment for patients and their family to facilitate navigating the end of life.	3	Experts mentioned the potential of non-health care related institutions, such as schools or workplaces.	Q10: A female colleague lost her husband last year. She has been working only in the mornings for several months now. The company has made this possible. This way, we don’t lose an experienced employee, and she is happy that she can continue working and is allowed to stay. And that rubs off on your customers. It rubs off on colleagues. (S5P3)	Expansion
External resources	80	A great variety of resources was mentioned, but most often articles discussed informational resources. There was an emphasis on the availability, useability and appropriateness of resources.	2	Experts by experience emphasized the importance of time and money, which are necessary to be able to help others.	Q11: Now we’ve circled back to time and space because that’s what you need to be able to be a community for each. (S3P3)	Expansion
Sociodemographic characteristics	42	The scoping review contained a great variety of information concerning the impact of sociodemographic characteristics. They have a large impact on other determinants that varies in nature, depending on the subvariable in question.	3	Some experts cautioned against assumptions about death literacy levels based on sociodemographic characteristics. While these impact how we deal with the end of life, the nature of this impact depends on a variety of factors.	Q12: I would question the effect of economic disparities and social inequalities because I think some of the most death literate situations that I’ve seen were, for example, among gay men in the eighties around AIDS related deaths, where you had communities that were very marginalized, suffered from a lot of social inequalities, but had developed very clear ways of dealing with deaths and were very death literate around them. (S5P1)	Expansion
					Q13: You know, in indigenous communities we have really high rates of suicide. So that experience that many of our young people are having with their early experiences of death are around suicide. (S2P2)
					Q14: Someone who is involved with faith and the Coran on a daily basis, they will be reminded that there will be a day [when you will die]. (S11P3)
					Q15: I think from an Indigenous lens, a lot of that was forcibly removed from our experience. How we viewed death, how we were educated in our dying processes, how we practiced our caregiving protocols, how we talked to our children, how we educated our community, all those things were forcibly removed from my community. (S2P2)
Personal characteristics	1	This was only mentioned in one study, specifically in relation to willingness to discuss the end of life.	3	Experts by experience especially accorded great importance to personal characteristics as something that influences whether individuals are open to the subject and how they interact with their peers.	Q16: Interviewer: What are factors that, according to you, make someone become death literate?	Gaps
					S2P3: Empathy. (Other experts agree).
					Q17: If you have a warm heart, and you want to help someone, then you can really, on a feelings-basis, even if it is just giving them a little push, help them. (S11P3)
					Q18: With my podcast I have the same thing. There are two types of people who listen. The people who experienced something and who are looking for comfort and recognition and the people who feel, ‘I haven’t experienced it and what I am actually looking for is tools on how I can, you know, or to know more about it. So that’s the same type of curiosity. (S3P3)
Cultural norms	34	Cultural norms that were mentioned most often are ‘death as taboo’, ‘caregiving as an expectation/duty’, and ‘medical staff as figures of authority that should not be questioned’.	3	Experts emphasised the paralysing effect of cultural norms, which can discourage individuals from taking up palliative or deathcare related tasks.	Q19: I think the medicalization is, a hinder, a barrier for the literacy because it takes this knowledge into a professional field, for example, palliative care. And to impede that people feel encouraged, feel able to deal with that, which is a thing that they have done or we have done for a long time. (S3P1)	Expansion

Santerre-Theil et al. ³⁸ found that professional experience influences attitudes (i.e., confidence navigating the healthcare system), social connectedness (i.e., professional networks), and prior knowledge (i.e., medical knowledge). Other review studies suggested that positive caregiving experiences can increase caregiver confidence^39,40 and that the experiences can lead people to becoming advocates within the health system or deciding to support others.^41,42 Anandarajah et al. ⁴³ found that experience can mitigate prior attitudes (e.g., fear of stigma). Additionally, lived experience seems to mediate the relationship between indirect end-of-life exposure and death literacy. Black et al. ⁴⁴ suggest that a person will not engage with health promoting initiatives unless the topic seems relevant to them. This sentiment was echoed in our experts by experience panel (Q1).

Indirect end-of-life exposure

This encompasses all variables that denote interactions with the topic of end-of-life, but which do not constitute lived experience. This exposure can be passive (e.g., public awareness campaigns) ⁴⁵ or active (e.g., selecting a podcast episode about grief) (Q3).

Studies in the review featured examples of indirect exposure impacting attitudes.^45–47 Abba et al. ⁴⁶ reported on a study where an increased number of people considered a home death possible after attending a lecture on the subject. Selman et al. ⁴⁷ found that people reported increased confidence discussing grief after attending the UK-based Good Grief festival. Additionally, studies called for efforts to increase public awareness ⁴⁸ and reduce stigma. ⁴⁹ Chan et al. ⁵⁰ suggest that efforts at the policy and educational level may increase indirect exposure at an individual level and improve death literacy (see also Political context and policy.)

Prior non-end-of-life knowledge

Prior knowledge groups variables pertaining to an individual’s general literacy, health literacy, and other types of knowledge not directly related to the end of life. Health literacy was linked to different aspects of death literacy (e.g., ability to engage in end-of-life planning,^30,51–53 ability to access resources or services ⁵⁴ or ability to make end-of-life decisions).^55–58 Health literacy may also impact attitudes (e.g., trust in institutions^43,57–59 or confidence in the caregiver role). ⁶⁰

General literacy (and mastery of the dominant language) was linked to the ability to partake in end-of-life care discussions^43,61 and planning, ³¹ to express one’s needs, ⁶² to access appropriate resources,^62,63 and to navigate the healthcare system.

Other types of knowledge that may impact an individual’s death literacy included computer literacy ⁶⁴ (ability to access information), legal literacy^52,65 (ability to plan for end of life), organizational skills (ability to provide end-of-life care), ⁶⁶ and soft skills (ability to support a bereaved person). ³³

End-of-life related attitudes

Personal beliefs about end-of-life care (e.g., end-of-life care as giving up on an ill loved one^67,68 or unaffordable ⁶⁹ ) or fears of discussing death could form a barrier to engaging with end-of-life topics or situations.^43,51,68 Cartwright et al. ⁷⁰ mentioned low levels of trust in institutions as a motivator for end-of-life planning. Catalan et al. ⁷¹ linked heightened awareness of mortality with willingness to have open conversations about end-of-life planning. Several studies mentioned that people need to be in a place of acceptance (of death) before they can connect to information and prepare for the end of life.^72–75 This coming-to-terms could be facilitated by witnessing the process of decline. ⁷²

Attitudes may also impact our lived experience. A person’s willingness to accept help may impact received support. ⁷⁶ The unwillingness to accept help can also lead to a lost opportunity for others to gain experiential knowledge. ⁷⁷ Fears related to end-of-life caregiving, such as the fear of over- or undermedicating, may lead to challenges as a caregiver or reluctance to take up caregiving responsibility in the first place.^66,78,79 Lack of self-confidence in caregiving abilities may lead informal carers to believe their loved ones are better off in formal care. ⁸⁰ Lau et al. ⁸¹ noted that individuals with higher self-confidence in their caregiving abilities are more inclined to partake in active learning and medication management. Other studies mentioned that willingness to provide end-of-life care can motivate carers to seek caregiving competence.^66,82,83

Social connectedness

Social networks can be an important source of support (Q7). They may include friends, ⁸⁴ family, ³⁶ and community members, but also peers encountered in settings such as waiting rooms or online forums.^85,86 Support received ranges from informational^{27,36,55,56,84,85,87} and emotional^86,88 to practical.^41,62,89 Social networks can also connect individuals to resources ⁴¹ and increase healthcare utilisation. ⁵⁸

Inversely, analysis suggests that having a limited social network or a social network with low death literacy may limit an individual’s end-of-life options^50,80 (e.g., feasibility of a home death). ⁸⁰ Several studies mentioned loved ones’ reluctance to discuss the end of life as a barrier to end-of-life care discussions.^55,90 Moberley et al. identified a social network with low death literacy as a barrier to realizing end-of-life care wishes, as they found that family members sometimes overturn patients’ end-of-life care wishes. ⁹¹

Additionally, studies in the review suggested that a social network may change attitudes regarding death and dying ⁹² and support from an individual’s social network may increase their faith in their caregiving abilities.^39,88

Environmental level

The environmental-level variables are structural conditions that shape individual’s opportunities to develop and use death literacy. These include the political context, which defines the broader ideological and institutional priorities around death and dying, with policy translating these into formal regulations and procedures across multiple levels; organizational culture, which reflects how these formal structures and values are enacted in everyday institutional practice; and external resources, which represent the relationship supports—such as services, volunteers, information, and time—that enable individuals to apply death literacy in real-life situations.

Political context & policy

Political context was exclusively mentioned in the expert panels. Participants stressed the importance of politicians invested in end-of-life care issues (Q8). While policies have the potential to protect individuals (e.g., exam exemptions due to bereavement), ⁴⁸ they were mostly raised as a barrier to navigating the end of life.^31,89,93 For instance, complex procedures to gain access to external resources limit their utilization. Additionally, by including or omitting death and dying, ⁴⁴ policies can shape cultural norms and the visibility of the end of life in society. ⁹⁴

Organizational culture

Organizational culture comprises norms and values shared and enacted by people within individual organizations. Although organizations do not always consider end-of-life related issues as part of their remit, ⁴⁸ participants in all three panels were adamant that they provide opportunities to build death literacy (Q10).

While the experts discussed the importance of organizations in general, studies in the scoping review mostly focused on healthcare institutions. Institutional values around openness, empathy, and inclusivity impact professionals’ attitudes and actions, impacting individuals’ ability to build or use their death literacy in end-of-life-related situations. Examples of good practice by healthcare providers that aided individuals in their end-of-life trajectory include building a relationship with the patient and/or their family,^69,95 as this promotes trust ⁹⁶ and facilitates a gradual exchange of information,^65,83,96 introducing end-of-life care early on in a disease trajectory, ⁸³ and providing clear, honest, and complete information.^53,97,98 Healthcare providers’ reluctance to acknowledge the end of life may impede awareness of approaching death and limit an individual’s possibility to prepare for it.^{27,36,55,56,84,87} Studies also mentioned the benefits of healthcare providers who encourage, trust, respect, validate, and include informal caregivers in their caregiving practices.^65,72,83,99 This may positively impact individuals’ attitudes and provide them with opportunities to gain experience and grow comfortable with the end of life. Xafis et al. ¹⁰⁰ found that organizational culture trumps the quantity of information provided; participants who received only basic information but had a sense of trust in their healthcare providers still felt empowered to make important end-of-life decisions. Lastly, organizations that do not value cultural competence^62,101–104 and cultural humility^59,105 may create distrust and alienate certain populations from the healthcare system.^50,78 This could limit their range of possibilities when navigating the end of life.

External resources

External resources are resources that exist outside the individual, are outside of their direct control, and facilitate or constrain an individual’s access to and options for end-of-life care or support. Various types of external resources occurred in the data, including services^{36,65,83,89,106} (e.g., 24h nurse support^79,92 or interpreters), ¹⁰³ volunteers/peers^107–111 (e.g., support groups^{74,83,112,113} or online forums),^82,86 informational resources,^50,101 and practical resources (e.g., public transport).^50,69 Many studies stressed the importance of informational support.^{49,65,75,78,80,83,99–101,111,114–116} It seems crucial that the available resources correspond to an individual’s needs^103,104 (e.g., information tailored to their healthcare level).^56,88 Healthcare providers can play an important role in connecting individuals to resources.^{33,51,83,92,117,118}

Experts remarked that lack of resources can affect social connectedness (Q11). Additionally, access to external resources may impact attitudes. ⁵³ Fink et al. noted that patient navigators helped participants feel more comfortable in asking questions and seeking info. ¹¹¹

Contextual variables

Lastly, the model contains three variables that create a broader context in which the pathways to death literacy take place.

Sociodemographic characteristics

Johansson et al. found a positive association between death literacy and older age, widowhood, and identifying as spiritual or religious. ⁷ Leonard et al. found a positive association between death literacy and older age, having children, widowhood, having religious or spiritual beliefs or practice, and having an English cultural or linguistic background. ¹⁰ Graham-Wisener et al. found a non-linear association between death literacy and age, and a positive association with living in a rural area, having children, having a chronic physical health condition, and religious background. ⁸ Neither of these studies found a significant association with gender or education. However, Meier et al. found that participants who were female, highly educated, reported no financial difficulties, had good health, were below 75 and lived in an urban area showed higher levels of end-of-life health literacy, a concept related to death literacy. ¹¹⁹

We identified five important relationships with other determinants. First, sociodemographic characteristics may influence lived experience. For instance, migration ⁶³ may limit opportunities to witness the death of older family members and differences in referral rates based on ethnicity^60,109 may lead to less familiarity with palliative care.^60,109 Cultural norms can mediate the relationship between sociodemographic characteristics and lived experience (e.g., norms related to age (children are often shielded), ¹²⁰ gender (care roles), or ethnicity (experiences gained through cultural practices)). ⁹ Additionally, sociodemographic characteristics can influence the type of end-of-life experiences you are likely to encounter (Q13).

Next, studies reported lower socioeconomic status, ethnicity,^111,121 being a minority,^103,105,110 and having a migration background^29,62 being associated with different or lower levels of health literacy (prior non-end-of-life knowledge).

Third, sociodemographic characteristics may impact attitudes. Minority status can affect one’s trust in (health care) institutions.^109,110,122 Age^9,123 and religiosity ¹²³ were linked to end-of-life related fears and education level with comfort discussing the end of life. Age was associated with willingness to discuss death, ⁶⁴ and ethnicity and religion with willingness to provide end-of-life care. ¹⁰⁴ Religiosity,^39,104 ethnicity, ¹¹¹ education level, ²⁹ age,^29,76 and gender may influence attitudes towards end-of-life care ³⁹ and religiosity may impact mortality awareness (Q14).

Next, sociodemographic characteristics may shape an individual’s social connectedness. For instance, being unhoused or LGBTQIA+ might result in a social network that deviates from the norm (e.g., consisting mostly of chosen rather than biological family). ⁷⁰ Sociodemographic variables might influence how we activate our social network. ⁶⁴ Lavalley et al. found that older people providing care for their spouse are less likely to draw on their network for support than adult children providing care for their parents. ⁷⁶

As for the relationship between organizational culture and sociodemographic characteristics, the data includes examples of (fear of) discrimination based on ethnicity, religion, sexuality, precarious housing, mental illness, and addiction.^31,70,122

Lastly, sociodemographic characteristics predict whether external resources are available to an individual (e.g., rural areas^50,64,69,103 or underserved neighbourhoods). ¹¹⁸ The type of information people (can) access is influenced by age (and mediated by digital literacy),^44,64 with older people experiencing more difficulties accessing exclusively digital information. Ethnicity, ⁶⁷ having a migration background,^50,62 or being part of a minority ¹⁰⁴ (e.g., being Deaf)^103,110 can also impact access to information on the end-of-life, due to unavailability of appropriate information.

Personal characteristics

Personal characteristics were only raised during the expert panels. Experts by experience felt that people with empathy, vulnerability, curiosity, and an intrinsic motivation to learn have a higher capacity to build death literacy (Q16, Q17, Q18).

Cultural norms

Cultural norms around healthcare and the end of life may facilitate or hinder death literacy development by shaping what death and dying can look like.

Several studies mentioned taboos, often as barriers to end-of-life discussions or decision-making and affecting the dying person, their relatives, but also professionals surrounding them.^{9,53,63,64,124–127} Paul ¹²⁰ and Bollig et al. ¹²⁸ found that while children are open to discussing death, silence around the subject limits their opportunities to receive support. ¹²⁰ The taboo regarding death may be exacerbated in stigmatized situations, such as cases of suicide or certain life-limiting illnesses. ⁹⁹ This can impact an individual’s social connectedness, although this may be mitigated by support groups or internet forums.^86,108

Experts suggested that cultural norms that consider death, dying, and bereavement a medical issue can undermine people’s self-efficacy by placing care and support solely under the remit of professionals (Q19). Cultural norms can make individuals reluctant to question their healthcare providers and broach the topic of the end-of-life themselves, limiting opportunities to build death literacy.^30,31,59,63 Inversely, cultural norms may encourage people to interact with the end of life (e.g., seeing caregiving as an expectation or duty.)^{52,73,93,104,111,124} In some cases, this had a protective effect, since it gave individuals faith in their own capabilities. However, this could also lead to a reluctance to accept (in)formal support. ¹²⁹

Mixed-methods analysis

Variables most often mentioned in the scoping review were attitudes, resources, and prior experience. Most variables were discussed in nearly every expert panel. Policy and political context and personal characteristics were almost exclusively mentioned by the experts (See Table 5).

Discussion

Using a mixed-methods study, integrating findings from a scoping review and expert interviews through a pragmatic ESC-DAGs approach, we developed (1) a DAG representing the theorized causal relationships and (2) an evidence-informed conceptual causal model that synthesizes key individual, environmental, and contextual factors involved in death literacy development. It indicates how cultural norms and sociodemographic and personal characteristics shape the context in which death literacy development takes place. Within this context, environmental factors (i.e. political context and policy, organizational culture, and external resources) influence an individual’s capacity to build death literacy through their lived experience, indirect exposure, prior knowledge, attitudes, and social connectedness. The conceptual model is a simplified, schematic representation of the most important relationships, but the DAG shows that there is enormous complexity behind the development of death literacy, with many variables taking up multiple roles (i.e. determinant, mediator, or moderator).

Mediating, interactive, and feedback processes in the model

Several causal mechanisms operate inside the model. Firstly, there is serial mediation within the model. For instance, indirect exposure to the end of life may influence end-of-life related attitudes (e.g., fears of discussing the end of life). ¹³⁰ In turn, these attitudes may influence lived experience with the end of life: they may influence whether people expose themselves to (potentially educational) end-of-life related situations, how they experience them and what they take away from them. Lived experience, then, can influence prior knowledge: providing end-of-life care support to relatives is associated with higher levels of end-of-life health literacy. ¹¹⁹

Next, there are interaction effects (or moderators) in the model. For instance, the influence of indirect exposure to end-of-life situations on end-of-life attitudes may depend on the individual’s prior comfort discussing death. Or high levels of discomfort can impede an individual from fully engaging with instances of indirect exposure, weakening its impact on death literacy development.

Lastly, some variables may be both determinants and outcomes of death literacy, creating feedback loops inside the causal model. For instance, we may expect high levels of death literacy to lead to an increased willingness to interact with the end of life, which could in turn affect indirect exposure and lived experience. In this way, death literacy functions as a positive spiral, with increased death literacy leading to new opportunities to build more death literacy. Future research should explore and test the outcomes of death literacy and these possible feedback loops.

Death literacy as an individual competence

This study produced three interesting findings regarding death literacy on an individual level. First, the inclusion of personal characteristics (such as empathy, vulnerability, curiosity, and intrinsic motivation), alongside sociodemographic characteristics, creates a new and broader micro-context affecting the direct predictors and pathways to death literacy.^131,132 This addition, suggested in the expert panels, introduces individual variability in the analysis of death literacy development. For instance, two members of the same family may experience the same loss very differently, taking up varying tasks and levels of responsibility. Thus, the same loss would not necessarily lead to the same level of death literacy development.

Another interesting finding concerns lived experience. While studies confirm associations between personal experience and death literacy,^7–10 our analysis suggests that types of lived experience beyond professional, volunteering, and personal experience, such as having a living will or discussing death and dying, may also increase death literacy. The impact of the experience – depending on factors like the nature of the relationship, social proximity, or relationship intensity – may be a more decisive factor in death literacy development than the type of experience. Further research is needed into the types of experience that have an impact on death literacy, the extent of this impact, and the mechanisms behind this relationship.

Lastly, our analysis suggests that active or passive exposure to the topic of death, dying, and bereavement could play a role in death literacy development, indicating the potential of proactive death education. These past years, we have seen the development of trainings aimed at increasing death literacy (e.g., Last Aid ¹³⁰ and End-of-Life Aid Skills for Everyone). ¹³³ In-depth research is needed into the (sustained influence of the) effectiveness of trainings designed to increase death literacy and the way they impact death literacy, as well as the impact of other types of indirect exposure (e.g., awareness raising campaigns or end-of-life related literature). While indirect exposure may not suffice as support to people in terms of end-of-life preparation, it may be useful to think of these initiatives as ‘planting seeds’. Rather than teaching individuals everything they need to know to successfully navigate the end of life, they may facilitate future learning and perhaps even coping with the end of life.

Death literacy as embedded in one’s environment

As stated in the report of the Lancet Commission on the Value of Death, the discussion on death literacy must move beyond the individual level. ⁶ By highlighting the role played by the environment, the model raises the question whether we should be thinking beyond death literate individuals and communities, in terms of death literate settings. These settings could (a) encourage and enable people to seize opportunities to build death literacy and (b) allow people to use their death literacy.

One way in which an individual’s death literacy can be enhanced by their environment is via distributed death literacy. Edwards et al. ¹³⁴ conceptualized health literacy as being distributed through social networks. Our model suggests that the same may be true for death literacy, with individuals drawing on the death literacy of others to navigate the end of life. Such distributed death literacy may be how individual death literacy impacts the community, raising community capacity for palliative care. Further research is needed into this concept and its impact on individuals’ ability to navigate the end of life.

Next, our findings suggest a potential for organizations (e.g., schools, workplaces, or healthcare institutions) to aid individuals in navigating the end of life. Similar to organizational health literacy,^135,136 organizational death literacy could help people understand, access, and act upon end-of-life care options. For example, a university with clear, accessible information on bereavement-related exam exemptions and staff awareness on this policy would reduce the burden on students of navigating complex bureaucracy. In this way, organizational death literacy could compensate for limited individual death literacy. ¹³⁷ Ideally, a death literate organization would be able to anticipate the occurrence of end-of-life situations and support its members accordingly. Research into Compassionate Workplaces is currently underway ¹³⁸ and may provide first important insights into how organizational death literacy can support employees experiencing serious illness, loss, or grief.

Implications for policy, program development, and research

The conceptual death literacy model opens several avenues for future practice and research. It can be used to inform the development of interventions aimed at increasing death literacy, as a guide to map out a specific case (e.g., an individual, social network, community, or organization), or as a roadmap to further explore the causal mechanisms related to death literacy. Some variables, such as indirect exposure or external resources, may be more directly targeted by interventions. Others, such as sociodemographic characteristics or cultural norms, may function primarily as contextual or structural conditions that shape how interventions are designed, targeted, and evaluated. Further research is needed into between-cluster causality, within-cluster causality, the nature and strength of the identified causal relationships, the outcomes of death literacy, and causal feedback loops between outcomes and determinants. To facilitate this, we have created a free webtool containing all causal relationships identified using the ESC-DAGs methodology (https://death-literacy-tool.vercel.app). Users can select their subvariables of interest to generate a causal diagram based on the literature in this scoping review and input from the expert panels. The tool is intended as an exploratory tool to help researcher shape their research questions and hypothesis and reflect on potential confounders.

Strengths and limitations

This study has several strengths and limitations. A key strength lies in its broad scope, which enabled the development of a causal model that situates death literacy firmly within the wider evidence base on end-of-life literacy and related domains. This approach allowed for the identification of a wide range of variables contributing to the development of death literacy, moving beyond an exclusively individual-level perspective. At the same time, this broadness constitutes a limitation, as it precluded an in-depth examination and description of each (sub)variable and of the inter-variable relationships. Further research is needed to explore this in depth. Additionally, due to the large number of variables and the complexity of the causal relationships, it is not possible to visualize all possible pathways leading to death literacy in a single model. Another strength of this study is the development of a pragmatic application of the ESC-DAGs methodology for large scoping reviews. However, in part due to the broad scope and limited evidence, this approach did not allow for the construction of a fully integrated DAG ready for statistical testing. Nevertheless, the study resulted in a comprehensive conceptual causal model and the development of an interactive web-based tool that can be used extensively by researchers. The use of mixed methods represents an additional strength, as it enabled the incorporation of current and as of yet unpublished discussions on death literacy and transcend biases associated with scientific publication. the panel of experts by experience consisted solely of Flemish participants, which may limit the transferability of the findings to other cultural or geographical contexts. Secondly, the majority of the experts in our panels were female. While experts were asked to draw on their expertise rather than personal experience, it is possible that this gender imbalance may have impacted the data.

Conclusion

Using a mixed-methods approach, we developed a conceptual causal model that provides a simplified synthesis of key individual, environmental, and contextual factors involved in death literacy development. The model shows that beyond lived end-of-life experiences, indirect exposure to the end of life, social connectedness, prior non-end-of-life knowledge, and end-of-life related attitudes are important determinants of death literacy. Environmental factors appear to influence individuals’ capacity to develop death literacy, and death literacy development is shaped by a broader macro and micro-context. Further research is needed to explore the outcomes of death literacy and to empirically test the proposed causal relationships in practice.

ORCID iDs

Astrid Verhue https://orcid.org/0009-0000-3137-9576

Filip Van Droogenbroeck https://orcid.org/0000-0003-1133-3495

Sarah Dury https://orcid.org/0000-0003-0743-0364

Sara De Gieter https://orcid.org/0000-0002-5596-9076

Steven Vanderstichelen https://orcid.org/0000-0002-7214-704X

Ethical considerations

The study received ethics approval from VUB (approval number: ECHW_538). Participants provided written consent for the usage of their information in analysis and publication by signing an Informed Consent Form (ICF) prior to their participation in the panel.

Consent to participate

Participants provided written consent for the usage of their information in analysis and publication by signing an Informed Consent Form (ICF) prior to their participation in the panel.

Consent for publication

Not applicable.

Data Availability Statement

The data of this study is kept by the first author and is available upon reasonable request.*