End-of-Life Doulas: A Systematic Integrative Review and Redirection

Abstract

Background and Objectives

End-of-life (EOL) doulas (EOLD) are an emerging role providing nonmedical support and advocacy for the dying and their families. Research about EOLD is new and currently highlights a need for more clarity in role definition and application. This review aims to comprehensively analyze existing knowledge regarding EOLD and their role in EOL care.

Research Design and Methods

A systematic and comprehensive search of 9 bibliographic databases identified all published academic articles related to EOLD (as named, self-identified, and/or trained) research from inception to June 2023. This review utilized an integrative approach and textual narrative synthesis to summarize the existing body of research findings related to EOLD.

Results

25 articles were identified, representing multiple disciplines including health and medicine, public health, social/behavioral sciences, and humanities. Research on EOLD has rapidly increased in recent years and is showing signs of maturation. The review focuses specifically on summarizing the breadth and depth of identified research on EOLD and critically analyzes emergent themes from the review: Application, Perception, Identity, and Future Research Directions.

Discussion and Implications

This review provides the most comprehensive review of the research literature on EOLD to date. Thematic findings for future research directions have provided the basis of a redirected research agenda to guide the field going forward. There is still a need to clarify who EOLD are and how they are being conceptualized by multiple stakeholders. Future research must address these missing voices to fully grasp the value and unique role that EOLD contribute to EOL care.

Background and Objectives

Death and dying are experiencing a renaissance. Culturally, the “Death Positive” movement provides new ways of thinking about death, often advocating for direct, practical, and natural perspectives. Death Cafes are popping up in communities, allowing people to adopt new avenues for and ways of talking about death. New services—such as end-of-life doulas (EOLD)—are emerging and acknowledging death as a sacred transition, which should be planned for, ideally allowing for individual autonomy and resulting in a “good death.”

Academically, these contemporary cultural shifts around death and dying are raising new research questions and reinvigorating old ones. For example, there are recent research efforts to illuminate how care processes and structures interact to affect end-of-life (EOL) quality of care, resulting in calls for greater care coordination during EOL (Bhagianadh & Arora, 2023). Investigations into the disparities in EOL care have questioned how the concepts of a good death are related to privilege based on race, gender, class, and other social identities (Corpora, 2022). Furthermore, research has suggested that the widely supported perspectives of “positive aging” are noted to have a conspicuous absence of any real discussion or inclusion of death and dying (Otto et al., 2023). The emergence of EOLD, as a named and trained role that supports persons during death and dying, may provide an opportunity to contribute to each of these mentioned issues.

EOLD provide nonmedical support to individuals and families during EOL. EOLD may be similar to, or even overlap with, other roles currently preformed in EOL care, but which do not identify with the named role of EOLD. Despite some advocates and popular media promoting EOLD as a panacea for EOL care (Chang, 2021), current research has highlighted confusion in understanding who EOLD are and in defining the role that EOLD may play in medical and social care (Rawlings, Litster et al., 2019, 2021; Rawlings, Tieman et al., 2019).

Research specifically about EOLD is limited, but is emerging. Early attempts at systematic (Rawlings, Tieman et al., 2019) and scoping (Yoong et al., 2022) reviews are limited by insufficient formal academic literature, using only 5 and 13 articles, respectively. Existing reviews synthesize evidence describing the role of EOLD working in EOL care, potential implications for models of care delivery and health systems, and training/regulation of EOLD as an industry or professional role. Missing from these reviews are important questions such as who EOLD are and critical analysis of potential contradictions within the role that could impede utilization and expansion of their professional and public integration. The fast-growing production of literature on this topic highlights the need for a broader scope of investigation.

Purpose

This integrative review aims to critically evaluate, analyze, and synthesize existing academic knowledge on EOLD, comprehensively summarizing existing research and identifying critical topics for future investigation. By identifying areas of investigation, including consensus and divergence, along with areas of need, this review highlights successes and challenges in understanding the role, promise, and future applications of EOLD in delivering death care. This review provides a foundation for a redirection, allowing for a discussion of the possible implications and applications about the future of EOLD research, policy, and practice.

Research Design and Methods

A systematic literature review using an integrative approach (Toronto & Remington, 2020; Whittemore & Knafl, 2005) was performed to search the published research literature focused on EOLD. An integrative review is appropriate for addressing new or emerging topics that would benefit from a holistic conceptualization and synthesis of the literature (Torraco, 2005, 2016). This approach permitted the inclusion of empirical studies using diverse research designs and theoretical perspectives. The five-stage integrative review process includes (a) problem formulation, (b) data collection or literature search, (c) evaluation of data, (d) data analysis, and (e) interpretation and presentation of results (Toronto & Remington, 2020; Whittemore & Knafl, 2005).

Problem Formulation/Identification

The goal of this review is to summarize, critically analyze, and synthesize all available academic information on EOLDs. The following descriptive research questions guided the review:

1. Who is researching EOLDs?

2. How are EOLDs being (methodologically and thematically) researched?

3. What does the research conclude about EOLDs?

4. What are recommended future directions for EOLD study?

Answering these questions or identifying them as gaps where future research focus is needed will create an integrated perspective of EOLD as a role, concept, and social phenomenon that is currently lacking.

Search and Study Selection Strategy

The goal of the literature search was to identify all potentially relevant academic research articles on EOLD. Aiming for comprehensive searching of current academic literature, nine bibliographic databases were used: PubMed (NLM), AgeLine, APA PsycINFO, CINAHL Complete, MEDLINE Complete, Social Work Abstracts (EBSCOhost), the Web of Science, SCOPUS, and ProQuest. Searches were conducted in June 2022 and again in June 2023. No date parameters were used for the search, allowing for the identification of all published academic literature on the topic. The rationale for focusing on all available literature—that is, since inception—was to review the literature as comprehensively as possible.

Inconsistency in the language used to describe EOLD (e.g., death doulas also being referred to as “death midwives,” “celebrants,” “guides,” and “facilitators”), required a broad, yet direct, search (see Supplementary Appendix 1). Key search terms included death doula(s), death guide(s), death midwife(wives), death celebrant(s), end of life doula(s), end of life midwife(wives), end of life guide(s), end of life celebrant(s). By focusing on these terms, this review does not include research about other types of EOL supports provided in different cultures and countries that are not associated with the term “EOLD” specifically. The current review, therefore, focuses specifically on those studies related to the EOLD role as it is evolving and named.

To ensure an exhaustive search, keyword database searches were complemented with backward reference searching and forward citation screening using Google Scholar. This process allowed us to include all the cited references in a single article identified through initial keyword searching (backward reference search), as well as any articles that cite to a specific article identified through initial keyword searching (forward-citation screen).

Publications were included if (a) the topic addressed at least one of the research questions, (b) participants in the studies were EOLD or had received care by EOLD, and (c) the purpose of the article was “research,” meaning that the design was either qualitative or quantitative, including empirical studies, narrative reports, and unpublished theses and dissertations. Most of the research utilized qualitative methods (76%) with a wide range of approaches including thematic analysis, content analysis, discourse analysis, phenomenology, and autoethnographies. The quantitative research was limited to descriptive statistical analysis. Publications were excluded from this review if (a) the research participants were from other health disciplines but did not identify as EOLD, (b) the article’s focus was on birthing or midwifery‐related doulas (e.g., birth doula, abortion doula, stillbirth doula) and (c) if the article was not scholarly or research-focused (e.g., personal account of being a doula with no critical or reflective content, newspaper articles, magazine articles, books), or (d) was a review (to prevent “double counting”). All identified articles were in English language; no non-English literature was found using these criteria.

Search Outcome

The staged screening process included the removal of duplicate references, screening of identified titles and abstracts, and subsequent full-paper reviews. From the original 566 publications resulting from database keyword searches, 59 papers were retrieved for full review, and from these, 22 papers were included in the analysis. Backward reference searching and forward citation screening identified three additional articles that met the inclusion criteria (see Figure 1). This review focuses on the 25 academic articles identified through search and study selection methods.

Data Evaluation

The purpose of the data evaluation stage is to assess the quality of the identified primary sources. A methodological approach, which includes the use of quality criteria appraisal tools, was used to systematically conduct quality appraisal of all 25 identified articles (Whittemore & Knalf, 2005). First, an extensive reading of each publication was done to ensure that the content focused on EOLD. Next, the 25 articles were evaluated for quality, including methodological strengths and weaknesses. Given that both qualitative and quantitative papers were included in this integrative review, a research critique framework produced by Caldwell et al. (2011), consisting of 11 criteria suitable for assessing quality in both qualitative and quantitative papers, was chosen to evaluate the included articles. In total, 19 of the 25 identified papers scored 10/11 or 11/11 on the quality criteria (see Table 1). Quality appraisal is used to provide insights into the strengths and limitations of the individual-identified studies rather than to eliminate any identified publications from this integrative review (Voss & Rehfuess, 2013).

Data Abstraction and Synthesis

During this stage of analysis, primary sources were organized, categorized, and summarized so that common threads or themes could be identified (Whittemore & Knalf, 2005). This data-reduction stage identifies specific data or excerpts from each of the 25 articles, creating individual evidence tables detailing key features of each publication, including author/s, year of publication, country, discipline, study design, purpose/aim, setting and sample, data collection methods/measures, and thematic findings related to the four research questions. This approach enabled the succinct organization of data for each article, while also allowing for ease of comparison between papers. The evidence tables were then used to facilitate constant comparative analysis to identify patterns, commonalities, and differences within and between the summarized publications. The process enables evidence and findings coming from diverse methodologies to be synthesized in a standardized narrative form (Whittemore & Knalf, 2005).

Presentation Stage

The final stage of an integrated review is the presentation of the findings found in the results section of this article. Articles were first organized by discipline, date, place, method, and research focus (see Table 2) and EOLD background and demographic characteristics (see Table 3). Next, studies were synthesized under the themes of application, identity, and perception, which emerged inductively through comparative analysis of research focus or objectives (see Tables 4–6). Although much of the research had some degree of overlap, especially in providing background and discussions, these themes represent the central focus or objective of the included articles. Synthesizing the information from each article provided a final narrative summarization of the findings about what is known about EOLD.

Results

Table 2 summarizes the current breadth of research on EOLD, including dates of publication, discipline, and location of the first author, participant location, methods, and research focus (i.e., research question or objective). Most of the included studies were published in the past 3 years, with six in both 2021 and 2022 and five in the first half of 2023. The research is coming from the following disciplines: health and medicine, public health, social and behavioral sciences, and humanities. A single team (Rawlings and colleagues from Australia) is responsible for almost a quarter (24%) of the included articles.

Almost all the existing EOLD research comes from the United States and Australia and uses U.S. or multinational participants or populations. Nineteen of the included articles use qualitative methods and seven articles use, or include through mixed methods, descriptive statistical analysis. A notable attempt at determining EOLD effects and causation is underway in at least one study (see Borgstrom et al., 2023), and theoretical perspectives are presented in five (Francis, 2022; Garces-Foley, 2022; Incorvaia, 2023; Krawczyk & Rush, 2020; Tumber, 2020).

There is an almost exclusive use of EOLD participants versus other stakeholders (e.g., patients, family, healthcare professionals) (exceptions of Borgstrom et al., 2023; Lentz, 2014; Trzeciak-Kerr, 2016), yet there were no consistent inclusion criteria of who or what is defined as a “doula.” The included articles’ operationalization of EOLD, and therefore their recruitment of EOLD as research participants, was skewed to “trained” EOLDs who were recruited through formal training organizations (e.g., INELDA and NEDA), with only four of the included studies allowing for self-identification as an EOLD (DeDiego et al., 2023; Rawlings, Litster et al., 2019, 2021; Tumber, 2020). These recruitment strategies resulted in a lack of inclusion of deathcare support persons who do not formally or informally self-identify as EOLD. Defining EOLD as “professionals” was common, but was also explicitly contested (Borgstrom et al., 2023) or nuanced with descriptors such as “quasi-professionals” (Krawczyk & Rush, 2020), or was left unclear (Garces-Foley, 2022).

Table 3 summarizes the background and demographic characteristics of the populations studied. Of the 25 included articles, 4 were theoretical or narrative and did not have EOLD participants (Flaherty & Meurer, 2021; Fukuzawa & Kondo, 2017; Lentz, 2014; Rawlings, Davies et al., 2021), 5 had non-EOLD or outlier samples (e.g., EOLD early pioneers; Francis, 2022; Gaspard et al., 2021; Krawczyk & Rush, 2020; Rawlings, Miller-Lewis, & Tieman, 2022, Rawlings et al., 2023), and 5 did not report demographics or background characteristics of their research participants (Borgstrom et al., 2023; Garces-Foley, 2022; Incorvaia, 2023; Rawlings, Miller-Lewis, Tieman et al., 2022; Schnacke Sasse, 2018). The remaining 11 articles focused specifically on EOLDs as research participants; this resulted in 8 separate EOLD samples due to multiple articles using the same study sample to address separate empirical analyses/questions (e.g., Hahn & Ogle, 2022; Hahn et al., 2023).

The research focus of the included articles is highlighted in Tables 4–6 and are summarized in terms of three themes identified in Table 2. Application represents inquiries into the practical application of the emerging role, including skills, training, experience, services provided, regulation, and how to incorporate this role into existing models of care. Identity represents inquiries into what being an EOLD means in terms of identities (e.g., professional or informal), values (i.e., motivations and drivers), and experiences (personal and professional). Perception represents inquiries into “outsider” perspectives, including cultural considerations and attempts to manage outside perceptions of EOLD.

Application

Thirteen of the 25 reviewed articles focused on “Application,” as summarized in Table 4. These studies focus on describing the roles and services of EOLD, including considerations such as the skills, training, experience, services provided, regulation, boundaries, and how to incorporate this role into existing models of care. There is consensus across these articles: EOLD provide a variety of supports and services, including physical, emotional, social, and advocacy. While some claim that there is clarity of the EOLD role as nonmedical (Mallon, 2021), others have noted that roles may blur because many EOLD are working as, or have worked as, healthcare professionals (Rawlings, Litster et al., 2019). Diversity in services delivered is attributed to personalization in services being chosen by patient and family in collaboration with healthcare teams (Schnacke Sasse, 2018), or because the timing of referrals may limit the services offered/available (Borgstrom et al., 2023; Dellinger Page et al., 2022), or because services differ based on to whom the EOLD is providing support (i.e., emotional and physical comfort for dying persons and education or respite for families) (Dellinger Page & Husain, 2021). Borgstrom et al. (2023) acknowledge the benefits of EOLD diversity and flexibility but add a structural perspective by highlighting that the flexibility is a product of client needs, system supports that are available or not, and the range of skills of the doula, concluding that client needs do not solely drive the inevitable variation.

Beyond tangible services and tasks, the EOLD support role frequently focuses on emotional labor (Borgstrom et al., 2023), such as “being there” (Fukuzawa & Kondo, 2017), described as being present and meeting the needs/wishes of the dying person (Dellinger Page & Husain, 2021), or on a more metaphysical level described as “staying, holding, connecting, and keeping” (Schnacke Sasse, 2018). Two features of doula work highlighted as benefits include more time for the dying person and families (relative to what healthcare professionals can afford) and continuity throughout the EOL phases (Borgstrom et al., 2023; Rawlings, Litster et al., 2019, 2021). This perspective is caveated with the reality that the amount of time spent with dying persons and their loved ones varies widely and often depends on when the EOLD is contacted regarding services (Dellinger Page et al., 2022) or because someone did not want the type of support the doula was able to support (and conversely, doula could not provide support needed, especially if culturally specific in terms of language) (Borgstrom et al., 2023).

There is a wide range of potential purposes attributed to EOLD, including filling in gaps for health and social care (Rawlings, Litster et al., 2019), such as advocating for unrepresented populations or dying persons who are socially isolated (Flaherty & Meurer, 2021), with evidence that healthcare provider referrals often result in this type of client population (Borgstrom et al., 2023). Navigating family dynamics (Dellinger Page et al., 2022) and managing relationships with healthcare providers (Borgstrom et al., 2023) have also been recognized as key aspects of the EOLD role. Helping to achieve a “good death,” as a purpose, is not explicitly stated but is represented with study inquiries into differing factors EOLD believe can impede or lead to death acceptance for dying persons and family members (Dellinger Page et al., 2022) and aspects of the “good death” (e.g., preferred place of death, advanced directive complete) being formalized intervention outcomes (Borgstrom et al., 2023).

Though EOLD training organizations are critical in defining the EOLD role, they have diverse views across all operational aspects (Rawlings et al., 2023). Implementation debates currently center around the question of whether EOLD should operate on a volunteer or business model, with tension existing between “doing good” (i.e., volunteering) and charging vulnerable populations (Rawlings, Litster et al., 2019). The main concern is that volunteer work devalues EOLD as a “trained” profession worthy of payment (Rawlings et al., 2023). Fukuzawa and Kondo (2017) draw the most explicit distinction by differentiating EOLD types as self-employed (utilized by the affluent), welfare (utilized by underserved populations), and hospital-based (trained and employed independently by hospitals). Other hybrid models have connected to current health and social services, with EOLD serving as quasi-independent specialized members of healthcare teams (Flaherty & Meurer, 2021) or as members of compassionate communities (Mallon, 2021; Rawlings, Davies et al., 2021)—networks of individuals, separate from official health and social care, who provide assistance to those in need of care.

Challenges for EOLD work and implementation center on the newness of the role and the recent opening of training organizations. The length of time EOLD have been practicing (Dellinger Page & Husain, 2021) and EOLD training organizations have been operating (Rawlings et al., 2023) average less than 5 years, with a large portion being in practice or providing training for less than 3 years. This recent expansion is happening in an unregulated sphere, with regulation as another area of contention within the field (Rawlings, Litster et al., 2019). Noted challenges include an inability to provide a rigorous and documented process to provide certain assurances to the public that professionals are trained and prepared to do the requisite work or to provide a structure to handle potential concerns and grievances by those who employ EOLD supports (Dellinger Page & Husain, 2021).

EOLD report interpersonal challenges of frustration associated with others’ lack of awareness of the EOLD role (Borgstrom et al., 2023; Hahn et al., 2023; Rawlings, Litster et al., 2019) and being seen as “outsiders” in a regimented structure (Dellinger Page & Husain, 2021) that espouses a medicalized view of death and dying (Hahn et al., 2023). Another interpersonal challenge centers on dealing with delicate matters with their client’s family (Hahn et al., 2023), such as when they disagree with the dying individual’s wishes or cannot accept their death (Dellinger Page et al., 2022). There is only an anecdotal representation of client/family voices within the articles reviewed (see Lentz, 2014, and Trzeciak-Kerr, 2016, for limited evaluation). However, this may not be due to a lack of attempts but rather gatekeeping by doulas, family members not wishing to participate in EOLD research studies, or the lack of close family/friends who would be eligible to fill in the survey (Borgstrom et al., 2023).

EOLD identify professional work-life challenges that are familiar to most caring professions, including balancing connecting emotionally with their clients but also having boundaries (Hahn et al., 2023) and feeling like they do not personally have closure after a client’s death (Borgstrom et al., 2023). In contrast to other caring professions, findings from a Professional Quality of Life scale indicate that, on average, doulas have a high level of compassion satisfaction and a low level of burnout or secondary trauma (DeDiego et al., 2023). However, while EOLD welcome the role flexibility in terms of application, it can be daunting due to a lack of clarity about what is expected of them and the need to manage client and system expectations (Borgstrom et al., 2023).

Identity

The research theme of “Identity,” summarized in Table 5, includes 9 of the 25 reviewed articles. The identity theme captures what being an EOLD means in terms of identities (e.g., qualities and professionalization), values (i.e., motivations and drivers), and experiences. As stated by Borgstrom et al. (2023), “the identity of a doula then is tied up in ways of being and not just about holding the ‘role of doula’ (emphasis added)” (p. 20). Whether the qualities of the EOLD role were intrinsic or teachable is mixed: some argue that the EOLD identity was intrinsic (Hahn & Ogle, 2022) or that EOLD possessed innate or natural gendered knowledge and skills that suited them for the role (Tumber, 2020). Others concede that the identities and qualities of the EOLD can be both intrinsic and learned (Incorvaia, 2023; Rozeboom, 2021; Trzeciak-Kerr, 2016).

Personal qualities or characteristics—conceptualized as the “doula heart”—needed for this work include having a broad range of life experiences, specifically with the end of life, as well as significant insight about oneself and one’s past experiences (Krawczyk & Rush, 2020). Others indicated that EOLD must be open to exploration and change (Rozeboom, 2021) and must be comfortable with death, others as well as their own (Incorvaia, 2023), which requires intimate and honest awareness of their own biases and abilities (Hahn & Ogle, 2022). Finally, while one study defined the identity of the EOLD as someone with a “strong religious foundation” (Lentz, 2014, p. 244), others explicitly defined religiosity and spirituality as a quality of the role. Descriptors such as being “drawn” to serve and feeling a “divine” call to aid the dying and their families (Rozeboom, 2021) or using the phrase “sacred” to discuss the EOLD role (Hahn & Ogle, 2022) indicate at least some reverent quality attributed to the role and identity.

There is a lack of consensus, even contention, about what to call this work. The diversity of titles includes death doula, EOLD, EOL midwife, and death celebrant. EOLD is increasingly used more than any other title; however, reasons for not using the EOLD title include beliefs that EOLD does not match their identity, philosophy of care, and specific practices or that EOLD threatened the identity they were trying to convey (Krawczyk & Rush, 2020). Relatedly, positionality informs what it means to be an EOLD. Krawczyk and Rush (2020) acknowledge socioeconomic similarities between the countries where EOLD are most active (Australia, Canada, the United Kingdom, and the United States), noting critical structural differences between the social, legal, and medical systems internationally. Despite these differences, EOLD are developing in a westernized and privileged position rooted in Eurocentric traditions (Tumber, 2020).

Training organizations are largely seen as driving the identity of EOLD. Increasingly, professional training organizations are where EOLD receive their education, work philosophy, and approach; these organizations potentially provide ongoing support and advocacy for those they have trained (Rawlings, Miller-Lewis, Tieman et al., 2022). Training entities are seeking to professionalize the EOLD role by developing functionalist/trait-oriented documents, such as Codes of Ethics and Scopes of Practice (Incorvaia, 2023), even though course development may have initially been born from individual passion rather than being motivated by goals to professionalize the role (Rawlings, Miller-Lewis, Tieman et al., 2022). Furthermore, the proliferation of newly formed training organizations may provide differing views, experiences, and knowledge—and, therefore, some element of identity confusion.

Tumber’s (2020) thesis explores how EOLD resist or reinforce the commodification of care work, finding that training (needed for professionalization) does not inherently lead to commodification. That is, not all who train as EOLD intend to become EOLD, and most EOLD do not work full-time in the role. However, the training itself is commodification, which has led to concerns about market saturation and trendiness of EOLD (Tumber, 2020) and about creating new potentially unnecessary forms of expertise and dependence on the natural processes associated with death and dying (Krawczyk & Rush, 2020). Regardless of the difference between training courses in terms of content, context, and price, EOLD training organizations frame their education in terms that are hallmarks of the Positive Death Movement (Incorvaia, 2023), defined by the belief that honest conversations about death and dying are a cornerstone of a healthy society. Training reportedly focuses on a trainee’s inner framework (inner self) and philosophical perspectives (i.e., related to their lifespan, mortality, relationships, compassion, grief, meaning of life, and benevolence; Rozeboom, 2021).

Finally, the EOLD identity is associated with the fact that many EOLD are simultaneously or previously a healthcare professional. In the current environment where death and dying are medicalized and occur within medical settings, the motivation for becoming EOL doulas, described as the “aha” moment, is not a linear process, and many EOLD initially started volunteering with hospice or palliative care teams prior to becoming an EOLD (Hahn & Ogle, 2022). EOLD are still in the process of exploring their identity or what the role means to them (Borgstrom et al., 2023), especially because the EOLD identity borrows from, yet differentiates itself from, other existing EOL care identities (e.g., nursing, home health, hospice, clergy; Krawczyk & Rush, 2020).

Perception

The “Perception” theme, summarized in Table 6, includes 5 of the 25 reviewed articles, representing inquiries about “outsider” perspectives and perceptions of EOLD. A common thread is a perception by non-EOLD that the EOLD role may be unnecessary because the community (Gaspard et al., 2021) or family and friends already do and should play this role (Rawlings, Miller-Lewis, & Tieman, 2022). Relatedly, it is argued that outside of family and friends, volunteers provide the vast majority of nonmedical EOL care and support for the dying (Garces-Foley, 2022). In general, non-EOLD perceive current social and medical supports as being able to provide holistic EOL care, even if not all do, and that EOLD are an alternative to existing services (Rawlings, Miller-Lewis, & Tieman, 2022).

Non-EOLD, much like EOLD themselves, are divided on how they perceive the title of EOLD and whether the role should be a paid position. Gaspard et al. (2021) found that within the Indigenous culture, the title EOLD is already linked to for-profit models and rejected due to a lack of identification with commodification values. Similar findings were present in a more generalized population, with the title EOLD eliciting mixed reactions and polarized views surrounding whether this should be a paid position—especially without regulation and guidelines to define who EOLD are and what they do (Rawlings, Miller-Lewis, & Tieman, 2022).

There is some hesitation and potential lack of trust from established social and medical care organizations concerning EOLD, and EOLD do not know how to assess their impact and others’ perceptions (Borgstrom et al., 2023). Rawlings, Miller-Lewis, and Tieman (2022) found that a majority of their sample of non-EOLD had not heard of EOLD, but many wanted to learn more, saw value in their role, or wanted to explore how to become an EOLD. While education about EOLD is likely the primary pathway to increasing awareness and, therefore, demand for EOLD services (Hahn & Ogle, 2022), there may also be a public interest in learning EOLD skills and knowledge (for personal or professional uses) rather than employing EOLD to support one’s own or familial experience of death and dying (Garces-Foley, 2022).

Even though findings related to public perceptions and public awareness are scant, attempts to manage the perception of EOLD by occupational pioneers, EOLD trainers, and aspiring EOLD is occurring. Francis (2022) found that most pioneers are engaged in professionalization at some level, even when they insist they are against it. Most aspiring EOLD complete a doula training course with a first-generation pioneer as a way to establish and signal legitimacy to peer doulas and potential clients (Garces-Foley, 2022). However, in their effort to mitigate tensions stemming from the professionalization of feminized work, pioneers have strategically embraced a feminine occupational identity in ways that code their labor as White and middle class, thereby implicitly distancing themselves from the caring work identity often associated with working-class women and women of color (Francis, 2022).

Future Research Directions

The final research question of this review asks what the recommended future directions for EOLD investigation are. One of the most frequent calls for future research (11 of 25 articles reviewed) includes studies of those who have been in contact with EOLD or investigations into the experiences of those who have worked with or hired EOLD (e.g., the dying and their families, the general population, and a variety of EOL care professionals likely to interact with EOLD). Another call for research focuses on system-level issues. This thread includes calls for juxtapositions of EOLD with other EOL care roles (Borgstrom et al., 2023; Garces-Foley, 2022; Hahn & Ogle, 2022; Rawlings, Litster et al., 2019), investigations into why EOLD are emerging in the environment of hospice and palliative care (Krawczyk & Rush, 2020), and attempts at defining a role for EOLD in healthcare settings (Flaherty & Meurer, 2021; Rawlings, Litster et al., 2021).

The third call for future research concerns evaluating EOLD services by linking service-use with specific outcomes. Such studies might include identifying and measuring outcomes for dying individuals and their families (Flaherty & Meurer, 2021; Rawlings, Litster et al., 2019), cost-benefit analyses (Rawlings, Litster et al., 2021), quality assessments of care provided (Rawlings, Davies et al., 2021), including whether EOLD are causing any unintentional harms (e.g., overstepping emotional boundaries) or whether EOLD are democratizing a “good death” (Incorvaia, 2023). Questions concerning implementation abound, such as the impact of different approaches and services (Rawlings, Miller-Lewis, Tieman et al., 2022), including referral timing (Borgstrom et al., 2023; Rawlings, Litster et al., 2019) and modes of delivery other than in-person (Borgstrom et al., 2023).

EOLD training organizations are also becoming a research focus—for example, with calls for future research to address the implications associated with a lack of regulation and standardization (Rawlings, Litster et al., 2019; Trzeciak-Kerr, 2016) associated with differences in education, training certifications, and qualifications (Fukuzawa & Kondo, 2017; Hahn et al., 2023; Rawlings, Davies et al., 2021; Rozeboom, 2021; Tumber, 2020), and whether training organizations offer EOLD post-training support and advocacy to EOLD (Hahn et al., 2023; Hahn & Ogle, 2022). Basic descriptive information is needed about EOLD training organizations, including the reach or scope of the EOLD industry (e.g., number of programs, doulas, clients) (Trzeciak-Kerr, 2016), views of trainers (Rawlings, Miller-Lewis, & Tieman, 2022), and their motivation (Rozeboom, 2021), along with information about recruitment of trainees and materials used in training (Hahn & Ogle, 2022).

Five of the included articles identify cultural issues as a future research need. In terms of the culture of death, especially regarding EOLD as a component of the positive death reform movement, little is known and might help provide clarity on the EOLD role (Tumber, 2020). More importantly, questions surrounding cultural barriers and challenges of introducing EOLD in non-Western countries (Fukuzawa & Kondo, 2017) have yet to surface. Calls for culturally diverse research include how EOLDs are transforming the way people die in diverse cultural and ethnic communities (Rozeboom, 2021); currently, research in this area is nonexistent, especially as it relates to racism and allyship, which could perpetuate inequalities (Incorvaia, 2023). Related calls for future research include potential cultural appropriation by EOLD (Tumber, 2020) and exploration of EOLD legitimacy in light of findings around identity and inequality (Francis, 2022). Hahn and Ogle (2022) call for focusing on demographic and experiential factors, along with different sampling techniques, which could alter perceptions of who EOLD are and what they do.

Discussion and Implications

With an aging population, there is an increasing need for more care to support death and dying, yet the professions supporting EOL are often inadequately staffed, insufficiently funded, and have excessive caseloads that cannot be effectively fulfilled (Brant et al., 2019). In response, EOLD have emerged. This review provides the most comprehensive summary of existing research concerning EOLD, to date, and identifies critical topics for future investigation. Overall, research on EOLD is increasing and showing signs of maturation; however, issues of confused identity and application, along with missing essential stakeholder voices impede efforts to understand the promise and potential of EOLD as a role and concept. The findings of this review point to a need for redirecting research on EOLD, which would provide an empirical foundation from which to inform policy, practice, and healthcare systems-level implementation and public perceptions regarding the use of EOLD as part of deathcare. In agreement with Rawlings et al. (2023), this review highlights the importance of role definition and clarity, which would enhance research efficacy and potentially support the promotion and implementation of EOLD into the current deathcare systems.

The most significant contribution of this review is perhaps the identification of specific future research directions. As discussed earlier, scholars have identified several specific research questions and topics to explore. These findings have provided the basis of a research agenda to guide the field, and is invaluable in and of itself. Among the most impactful redirection needed for EOLD research would be to develop consensus on the distinction of EOLD as a component of the broader category of nonmedical EOL support and a narrower specific role within this category. This distinction would help highlight new areas of investigation. By situating EOLD in the broad category of nonmedical support, it would be possible to begin investigating how the trained and named EOLD, which are the focus of this review, differ from other already available nonmedical supports that fulfill many of the same purposes as EOLD.

Based on our review, the most common benefits provided by EOLD included: (a) increased time for and with the dying person and families and continuity throughout the EOL phases (Borgstrom et al., 2023; Rawlings, Litster et al., 2019, 2021), (b) navigating family dynamics (Dellinger Page et al., 2022), and (c) managing relationships with healthcare providers (Borgstrom et al., 2023). As EOLD provide advocacy, relationship support, and navigation for the dying, their value can be differentiated from other nonmedical supports. This is especially true if EOLD, as individual providers and/or as an industry, can emphasize care coordination, which has been found to significantly influence care quality regardless of other factors such as site of death or hospice use (Bhagianadh & Arora, 2023). Clarifying the overarching role or primary function of EOLD—as care coordinators, for example—would help provide clarity for both those self-identifying as EOLD and for those they potentially serve. At the system-level, there is also a need for this clarification of roles, as it would help better understand how EOLD overlap with and differ from other nonmedical EOL care roles and whether they fill in gaps in care or are a duplication of care.

Moreover, understanding the role and duties of EOLD and/or defining EOLD broadly as providing specific kinds of nonmedical support during EOL (e.g., care coordinators) might allow future research to include broader insights from other nonmedical support persons who do similar types of tasks, but who may not identify with the EOLD title. For example, in the Canadian Indigenous culture, the title EOLD is associated with for-profit models and has been rejected due to a lack of identification with the commodification of death and dying (Gaspard et al., 2021). In some cultures, community health workers, including the Promotoras in the Hispanic communities or spiritual leaders in indigenous communities, may be providing nonmedical EOL support, yet not identify with the EOLD title. In Hispanic communities, promotoras provide culturally appropriate services and fulfill the role of patient advocate, educator, mentor, outreach worker, and translator without being professional healthcare workers (Rural Health Information Hub, 2024b). Similarly, a congressional mandate has elevated the role of community health workers in the health and healthcare of American Indians/Alaska Natives (Rural Health Information Hub, 2024a). These types of culturally specific community health workers may indeed be providing many of the functions that EOLD provide at EOL, but not identify as EOLD. Furthermore, outside of family and friends, volunteers provide the vast majority of nonmedical EOL care and support for the dying (Garces-Foley, 2022). These volunteers may be trained or untrained, and often come from within faith-based or other community affinity groups. Volunteers, like the community health workers, likely would not identify with the EOLD title, nor would the nonmedical support staff working within the hospice and palliative care settings, such as social workers and chaplains.

Our review focused specifically on EOLD (as named, self-identified, and/or trained) to better understand how EOLD is evolving and emerging as a professional role and possible expansion of formal services and supports provided to persons at EOL; this narrow focus on EOLD is a noted strength of this review, as it has allowed us to provide the most comprehensive review of the research literature on EOLD to date, yet it limits insight of those nonmedical support persons such as community health workers and volunteers who may also be fulfilling the deathcare support role, but not identify with the EOLD label. Future research should consider comparing EOLD and other nonmedical support persons who are working in or adjacent to deathcare. This type of research could bring greater awareness and understanding to the myriad professional and nonprofessional roles that support death and dying. This would be particularly important in uncovering the unique roles that EOLD and others may play in delivering deathcare across cultures and in other settings. Five of the included 25 articles identified cultural issues as future research needs, corroborating this area as high-priority for future research, while the lack of mention of cultural factors from the other 20 articles underscores how challenging it is for EOLD to distinguish themselves from other already existing nonmedical death supports, or how they might standardize their practice for broader implementation and public support across cultures and settings.

Self-identifying EOLD largely identified and aligned their role with care work (Rawlings, Miller-Lewis, Tieman et al., 2022) and the personal service industry, yet EOLD also desired to be accepted by healthcare professionals, for example by seeking qualifications and legitimacy (Francis, 2022). These dual identities or goals may indicate critical differences within the “professional” or self-identifying EOLD population, rather than due to the lack of inclusion of those who do not self-identify as EOLD into existing research. It speaks to the fact that there is little standardization among the current self-identifying or professional EOLD. The lack of shared identity and consensus within current named EOLD roles will be a barrier to implementing and fully utilizing EOLD within the U.S. healthcare system, but would not preclude EOLD from functioning as a personal service industry. Although training programs for EOLD are well established, long before the creation of a clear consensus of role definition (Rawlings, Litster et al., 2019), “there is a danger that each new player in the field will attempt to assert their brand by re-inventing and re-designing the role of the doula” (Brennan, 2019, p. 217). Thus, incorporation of EOLD into current systems will likely remain on a supplemental, contract, or out-of-pocket basis, with the scope and types of support differing across providers (Rawling et al., 2023).

Current research, focusing primarily on the perspective of EOLD themselves, has made progress in understanding the role of EOLD. Nevertheless, research to date has yet to fully grasp EOLD as a concept, in part because the voices of stakeholders, particularly the individuals and families who utilize the services and support of an EOLD, have yet to be meaningfully included in research. This is the next suggested redirection of EOLD research. Including the voices of these stakeholders (in addition to the burgeoning data collected on and from EOLD themselves) is critical to understanding how EOLD can be integrated into policy and practice settings. The choices one makes for EOL care are complex and often fraught with ambiguity; while making these choices provides a sense of control to the dying individual, they also come with practical limitations because they are so inherently situational, contextual, and relational (Antonides & van Wijngaarden, 2024), and require the input of all those involved in the care of the dying individual. For example, surrogate accuracy in EOL decisions varies widely (i.e., care recipients and care partners may not understand a care recipient’s EOL values and preferences) (Clayton et al., 2024), so it is imperative to include the perspective of the family caregivers and to better understand how family caregivers work with the dying person and the EOLD. Another priority redirection for future research should be to include greater participation from individuals receiving EOLD care directly. These perspectives could provide invaluable insight for implementation and practice, based on whether the clients (dying person and their families) see EOLD as effective at increasing the quality of care, especially through care coordination with traditional healthcare systems. Cost-benefit analyses and comparative-effectiveness trials, where deathcare outcomes and trajectories for those who use an EOLD versus those who do not, would provide answers about the potential and promise of EOLD as a complement to existing healthcare and social supports for death and dying.

EOLD research is very new, with the rate of peer-review publications increasing rapidly during and after 2020. This increase aligns with popular media claims that the pandemic brought with it a renewed focus and interest in the experiences of death and dying (Chan, 2022; Ellin, 2021; Wittmeyer, 2023). This renewed interest in death and dying—and the specific questions about whether EOLD may be a part of the movement to achieve a good death—appear to be concentrated within the high socioeconomic Western countries (United States, Canada, and Australia). The majority of the research is with either U.S. populations or multinational samples and applied generally. The healthcare system in the United States is distinctly different from the healthcare systems of Canada, Australia, and the United Kingdom, not to mention non-Western countries and systems. Applying findings from the U.S. population or failing to consider national healthcare contexts or cultural perspectives could hinder our ability to understand the role and potential benefits of EOLD, in relation to different systems and communities.

EOLD, as a concept, may represent a Westernized notion of EOL care; it may have emerged in response to an unmet need for more care coordination and supportive, wholistic support during EOL, in an otherwise credentialed and capitalized healthcare system. The EOLD role has emerged primarily in countries that have robust hospice and palliative care systems (e.g., US, UK, and Australian; Krawczyk & Rush, 2020), consistent with the conceptual development of a good death that is also culturally embraced within these countries. However, even within these national and cultural contexts, the use of traditional EOL care, such as hospice and palliative care, is not necessarily widespread or used equally by all subgroups within the population (Nelson et al., 2021). These patterns and disparities raise questions about whether EOLD will increase EOL disparities based on privileged positions (Corpora, 2022). Understanding who would like to use versus who can afford to use nonmedical supports during EOL such as EOLD is another important future research priority to consider.

This review has limitations. First, this review focused on published research about EOLD, as a specific newly emerged and named nonmedical role supporting dying persons and their families. As such, the majority of the research identified came from the United States and Australia, which may affect the generalizability of the findings to different cultures and healthcare settings. No literature was found from outside of English-speaking countries, resulting in passive rather than active exclusion of the international or cross-cultural perspectives. This review was exhaustive, which made it possible to review a broad range of empirical studies, yet because of the rapid pace of publication on the topic in recent years, it is not certain that all relevant articles were included. Relatedly, this review focused on academic research. Thus, media and gray literature, including news articles, books, and personal accounts, were not included and could add to this scholarship by providing instructional or experiential descriptions of EOLD. Lastly, there is a certain degree of homogeneity within the included articles, leading toward a largely Western view of death and dying, which may impact the findings regarding innovation and viewpoints. As research in this area grows, new voices and perspectives should be sought and included to increase the quality and variety of research coming from diverse viewpoints. Additionally, while the mostly qualitative and descriptive methodologies of the included articles are appropriate for this field’s early stage of investigation, the skew of methodologies likely affects the interpretations of review. Despite the limitations, the systematic methodology used to conduct this integrative review is a strength, resulting in an increased number of academic research articles included in the review, compared with previous reviews on EOLD, and has provided the most comprehensive and critical analysis of EOLD to date.

Funding

This work was supported by the University of Utah Graduate Research Fellowship.

Conflict of Interest

None.

Data Availability

Data, analytic methods, and materials are available to other researchers for replication purposes. Included in the supplementary materials are the search and study selection details, including code and filters, and the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) extension for scoping reviews checklist (Tricco et al., 2018). This review was not appropriate for registration with the International Prospective Register of Systematic Reviews (PROSPERO).

Acknowledgments

The authors thank Kara Dassel for the review of, and comments on the article. Thank you to Tallie Casucci, Associate Librarian, for consultation and guidance regarding database search and selection strategies.

Author Contributions

Amber D. Thompson (Conceptualization [Equal], Data curation [Lead], Formal analysis [Lead], Funding acquisition [Lead], Investigation [Lead], Methodology [Lead], Validation [Equal], Visualization [Equal], Writing—original draft [Lead]); Rebecca L. Utz (Conceptualization [Equal], Investigation [Supporting], Methodology [Supporting], Supervision [Lead], Validation [Equal], Visualization [Equal], Writing—review & editing [Lead])

References