The FAME Model: Conceptualizing End-of-Life Doulas’ Roles within Compassionate Communities

Compassionate Communities, Circles of Care, and Mallon’s Micro Model

In response to systemic gaps in formal healthcare systems, particularly those organized around biomedical models of care, an aging global population, and widespread fear and lack of knowledge surrounding death and dying, the compassionate communities model has emerged as a public health approach to end-of-life care (Abel, 2018; Kellehear, 1984, 2013, 2015). Compassionate communities promote a holistic understanding of health that extends beyond symptom management to include psychological, spiritual, and social well-being (Dumont et al., 2022). Central to this framework is the recognition that death, dying, and bereavement are not solely medical events, but shared social responsibilities distributed across families, neighborhoods, and civic institutions (Abel, 2018; Abel et al., 2013). The model emphasizes strengthening social capital, building community capacity, fostering mutual aid, improving death literacy, and mobilizing actors beyond the formal healthcare system, including schools, municipalities, community organizations, faith groups, and informal caregivers (Bakelants et al., 2023; Dumont et al., 2022; Kellehear, 2015).

Empirical research suggests that compassionate community initiatives can strengthen social networks, reduce isolation, enhance bereavement support, and in some cases decrease unplanned healthcare utilization by mobilizing trained volunteers and informal caregivers (Dumont et al., 2022; Horsfall, 2018; Quintiens et al., 2022; Rawlings et al., 2018). By normalizing conversations about death and promoting death literacy, these efforts reduce stigma and increase collective caregiving capacity (Kellehear, 2015; Patel et al., 2023). At the same time, scholars note that compassionate communities are often articulated at macro or meso levels—focused on public health policy, municipal frameworks, or broad community initiatives—without clearly specifying how care networks are organized and sustained within households and immediate family systems (Bakelants et al., 2023; Mallon, 2021). Implementation can also be uneven, particularly in marginalized communities where structural inequalities, limited resources, or distrust of institutions shape access to care (Dumont et al., 2022). Together, this shift toward shared responsibility for death and dying broadens who is recognized as a legitimate provider of end-of-life care and creates space for emerging roles, such as EOLDs.

Circles of care (Abel, 2018) operationalize community and family networks to provide EOL care. At the center is the person with a life limiting illness, surrounded by an inner network of close family and friends who provide direct care and emotional support. The outer network consists of less close family members, friends, and neighbors who aid with practical tasks, such as meal preparation or running errands. Though this model is beneficial, Mallon (2021) notes that it has limitations in addressing the small-scale, domestic networks that often play a critical role in EOL care. To complement and complete this larger framework, Mallon (2021) proposes a micro-level model specifically designed for home-based caregiving.

To link compassionate community care within the context of the family, Mallon (2021), drawing on qualitative interviews with death doulas, introduces a micro-model structured around three flexible caregiving roles: the intimate, the gatekeeper, and the peripheral. The intimate role involves close, personal care and emotional presence for the dying person. The gatekeeper manages access to the home and information, acting as a boundary-setter and communicator on the dying person’s behalf, a role that requires organizational skill and emotional sensitivity (Mallon, 2021). The peripheral role supports the household through logistical tasks such as meals, errands, and upkeep, allowing individuals who may be emotionally overwhelmed by direct caregiving to still contribute meaningfully to the care network. While Mallon’s model offers a valuable extension to the compassionate communities framework at the micro level, we ground the FAME model in specific role enactments rather than just relational proximity, which provides a complementary lens that illustrates how doulas shift their functions across different layers of the care network.

Emergence of Doulas in EOL Care

Alongside community-based models, EOLDs have emerged since the early 2000s as a response to persistent gaps in conventional EOL care. The International End-of-Life Doula Association (INELDA) (2025) defines an EOLD as a non-medical person who accompanies, educates, and advocates for individuals and their circles of care during terminal illness and dying. Their emergence is closely tied to the structural and regulatory limitations of hospice and the broader U.S. healthcare system. As Incorvaia (2022) notes, regulatory burdens constrain hospices’ ability to provide continuous, holistic, person-centered care, particularly round-the-clock presence for dying individuals and their families.

Hospice care under the Medicare Hospice Benefit covers clinical services, medications, and grief counseling but excludes room and board, 24-hour in-home care, and curative treatments, and eligibility is limited to patients certified as terminal within six months (Centers for Medicare & Medicaid Services, 2023). As a result, families frequently face significant gaps in support when providing care at home, contributing to caregiver burnout amid longer life expectancies, dispersed families, and rising costs of institutional care (Carlson et al., 2010; Rawlings et al., 2018). Doulas step into this space and provide care that hospices, hospitals, and families cannot always manage. Because doulas work outside the formal healthcare system and are not eligible for insurance reimbursement, they are usually paid directly by families or provide services on a voluntary basis. This independence allows doulas to take on certain care tasks and provide forms of support that formal care workers cannot.

Although EOLDs are not medical providers, they complement clinical care by addressing the physical, emotional, social, and spiritual dimensions that span the entire dying process (Fersko-Weiss, 2017; Fukuzawa & Kondo, 2017). Research documents that in planning for death, they may assist with advance care planning, legacy work, and education about the dying process (Dellinger Page et al., 2022). As death nears, doulas may offer emotional support, vigil sitting, respite care, and create peaceful environments through spiritual or cultural rituals (Donley & Fannin, 2024; Garces-Foley, 2022). After death, they often support families with grief resources, funeral planning, and continued check-ins that may last months or even years (Dellinger Page et al., 2022). To meet growing interest, the International End-of-Life Doula Association (INELDA), founded in 2015, and the National End-of-Life Doula Alliance (NEDA), established in 2017, have emerged to support training, professional networking, mentorship, and broader professionalization efforts meant to further establish the field.

Conceptualizing Doulas’ Roles

Existing studies have provided essential descriptive overviews of doulas' roles. Our study seeks to extend this work by providing a systematic analysis of specific functions doulas perform within EOL care (Krawczyk & Rush, 2020; Rawlings et al., 2018; Thompson & Utz, 2024; Yoong et al., 2022). Much of this literature emphasizes doulas’ flexibility, acting as a “jack of all trades,” or as a “human Swiss army knife” (Krawczyk & Rush, 2020, p. 6) to meet a wide range of client needs and appeal to diverse types of people (Rawlings et al., 2019). Though their flexibility enables doulas to provide forms of care that other professionals cannot, families, medical professionals, and even doulas themselves struggle to define where doulas fit within care systems or how their work differs from those of hospice volunteers and other deathcare professionals (Rawlings et al., 2019).

Efforts to develop clearer taxonomies of doula work have emerged in recent years in both academic and practitioner settings. Krawczyk and Rush (2020), for example, conducted interviews with 22 doulas across the UK, U.S., Australia, and Canada to produce the first comprehensive framework for describing doulas' roles. They asked respondents to describe the role, provide characteristics of the role, and describe the services they provide, could provide, and shouldn’t provide as well as the obstacles and barriers they face. From this data, Krawczyk and Rush (2020) identified three primary descriptors—support, educate, and empower—and several secondary descriptors, including companion and presence; advocate and champion; coordinate, collaborate, and facilitate; mediate and guide; and assess and plan. While Krawczyk and Rush (2020) provide a comprehensive taxonomy of the characteristics of doulas and services they provide, our model builds on this foundation by further delineating doulas’ most common role features, where roles begin and end, how they overlap, and how they are enacted across diverse social contexts.

Beyond academic research, practitioners and EOLD organizations have also worked to define guiding principles, models of care, and core competencies. These approaches vary across organizations and reflect broader differences in how EOLD practice is conceptualized within this emerging field. For example, “The INELDA Doula Approach” centers on three principles—self-awareness in care, autonomy of the dying person, and recognition of the individualized nature of dying—which directly inform the organization’s core competencies (INELDA, 2023). In contrast, Patty Brennan’s “Doula Model of Care,” adopted by NEDA, emphasizes non-medical and non-judgmental support, holistic family-centered care, empowerment in decision-making, and collaboration with end-of-life care teams, while NEDA’s core competencies focus more explicitly on communication, professionalism, technical knowledge, and ethics (NEDA, 2026). As training organizations have expanded in recent years, so too have differences in how doulas’ roles, competencies, and models of care are conceptualized and taught. Reflecting this growth, the Global Doula Project is currently compiling an international directory of EOLD training organizations (2026).

Beyond articulating EOLD roles, there is a growing body of research connecting EOLD roles to compassionate communities and circles of care frameworks in the death and dying literature (Mallon, 2021; Rawlings, Davies, & Tieman, 2021). Mallon (2021) did this by taking a more micro approach to Abel’s circles of care model by introducing the Mallon model, which incorporates the intimate, gatekeeper, and peripheral roles. While Mallon (2021) successfully connects EOLD roles with the compassionate communities and circles of care literature, there remains an opportunity to further specify the concrete roles and practices doulas engage in at the micro level. Her analysis also provides a useful starting point for linking these roles to the macro-level social change efforts supported by compassionate communities, which our research further extends.

While interest in EOLDs is increasing, it is not entirely clear how these roles might be incorporated into end-of-life care systems. Professionalization literature suggests that the process of becoming a recognized field involves developing clearer boundaries and role definitions—particularly when distinguishing doulas from adjacent professions such as hospice workers or social workers (Francis, 2022; Keshet et al., 2023; Young, 2019). In Australia, this shift is reflected in the introduction of nationally accredited pathways such as the Certificate IV in End-of-Life Doula Services, which signals growing formal recognition of the role even in the absence of full regulation. Similarly, in the United States, the National End-of-Life Doula Alliance (NEDA), in collaboration with the Hospice and Palliative Credentialing Center (HPCC), is exploring the creation of a voluntary, nationally recognized certification program for EOLDs, expanding on its existing Proficiency Assessment (Hospice and Palliative Credentialing Center, 2025). However, within the doula community, this standardization is a subject of ongoing debate, as some fear it may reproduce the very medical hierarchies doulas seek to resist (Francis, 2022).

Our study builds on and extends Mallon’s (2021) and Krawczyk and Rush’s (2020) work by analyzing how doulas themselves conceptualize their labor within EOL care. Drawing from in-depth interviews with 23 practicing doulas, we identify the FAME model and the four interrelated roles—facilitator, advocate, mediator, and educator—that connect micro-level caregiving with meso-level community advocacy and extend to macro-level social change. We believe the FAME model provides a more comprehensive framework for understanding doulas’ roles by situating them within compassionate communities frameworks and clarifying how role articulation contributes to doulas’ ongoing professionalization efforts.

Data Collection

Respondents were recruited through a combination of snowball and purposive sampling. Through a colleague of the first author, we were able to connect with and recruit several doulas for this study. The remainder of the respondents were recruited through EOLD professional organizations in the United States, INELDA and NEDA. Leadership at both organizations shared a recruitment flyer on their social media pages and membership email listserv. Interested participants then directly contacted the first author. Data were collected through semi-structured qualitative interviews over Zoom, allowing for in-depth exploration of participants’ experiences with death and dying (Kallio et al., 2016). Interviews were conducted between the Spring of 2023 and the Spring of 2024 and on average lasted between 1 to 2 hours. An interview schedule was utilized for each interview that asked a standard set of questions about respondents’ work background, roles and services during the dying process, interactions with clients and families, day to day work experiences, changes in EOL care, personal perceptions of death, and demographic characteristics. The interview schedule was adapted from a study on women moving into funeral directing (Donley & Baird, 2017) as well as other studies involving qualitative interviews with EOLDs (e.g., Tumber, 2020). Interviews were recorded with permission, transcribed using Otter.ai, and checked for accuracy by the authors. Informed consent was obtained prior to interviews, participants were informed of the study purpose and their right to withdraw, and all data were deidentified with pseudonyms assigned to protect confidentiality. This project was approved by the authors’ university Institutional Review Board (03142024-02) and maintained ethical standards of human subjects research.

Sampling

In total, 23 death doulas were interviewed, at which point data saturation was reached and no new themes were observed (Fusch & Ness, 2015). The sample consisted entirely of white women, except one respondent who identified as Hispanic. Additionally, all participants except one were trained and worked in the United States; one respondent worked in Ecuador. Doulas primarily worked in urban and suburban settings and less frequently in rural areas, although many indicated they would travel varying distances depending on client needs and availability. Client demographics reported by respondents reflect those of the doulas themselves, primarily white and affluent, though participants did describe working with clients from a range of ethnic, religious, racial, and political backgrounds, albeit less frequently. The average age of respondents was 51, with a range from 34 to 74. All had attended at least some college, while 14 had bachelor’s degrees, and 7 had master’s degrees. Our sample included a combination of individuals who worked in deathcare (palliative social worker, clinical social worker, palliative nurse, hospice massage therapist, hospice volunteer coordinator) and sought out doula training to complement their current jobs. The remainder of our sample were either fully transitioned or in the process of transitioning into full-time doulaing. Those not already employed in EOL care learned about doulaing through volunteering at hospices. On average, the respondents worked in EOL care for 10.5 years with a range of 3-20 years. All were considered “certified” in that they had completed the initial training through organizations such as INELDA, Doulagivers, or the doula program at the University of Vermont. Some were still in the process of completing the 5 trainer-supervised vigils required for INELDA certification. Thus, years working as a certified doula were much fewer. On average, respondents reported working nearly 3 years as a doula with a range of 1 year to 7 years. In terms of services offered, participants described specializing in areas of deathcare (e.g., spiritual care, advance planning, legacy work, vigil support, and community education), which map onto the roles described in this paper. Table 1 provides the demographic characteristics of the respondents for this study.

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Table 1.

Participant Demographic Information

Name	Age	Race/Ethnicity	Location	Professional background	Education	Doula work (yrs)	Death work (yrs)
Abbey	42	White	KS	College advisor	Master’s	3	5
Alexa	60	White	KS	Website designer	Bachelor’s	4	8
Amelia	56	White	KS	Hospice volunteer, editor & content manager	Bachelor’s	2	15
Ana	45	White	NC	Hospice volunteer	Some college	4	5
Bekah	47	White	PA	Nurse	BSN	3	20
Clarice	34	White	Ecuador	Non-profit	Bachelor’s	2	2.5
Jasmine	74	White	PA	Hospice/Designer/Stylist	Bachelor’s	2	12
Josephine	38	White	WI	Hospice massage therapist	Bachelor’s	-	2.5
Julia	35	White	FL	Correctional officer	Bachelor’s	3	17
Kathryn	63	White	GA	Lab assistant	Some college	1.4	8
Kristin	38	White	VA	Hospice volunteer coordinator	Bachelor’s	2	8
Lisa	53	White	PA	Management, internet branding	Bachelor’s	1	3
Lucy	45	Hispanic	CA	Palliative nurse	MSN	0.16	8
Maeve	69	White	CA	Artist	Bachelor’s	7	14
Nora	40	White	KS	End of life doula	Bachelor’s	3	3
Riley	45	White	KS	Hospice volunteer coordinator	Bachelor’s	1	22
Sally	40	White	MO	Clinical SW	Master’s	2	20
Scarlet	57	White	PA/NJ	Pharmaceutical executive	Master’s	2.5	2.5
Stella	71	White	OH	Teacher	Master’s	7	12
Tabitha	52	White	KS	Language pathologist	Master’s	0.5	3
Tanya	52	White	GA	Geriatric care nurse	Bachelor’s	5	10
Tessa	53	White	SC	Hospice nurse	Bachelor’s	4	25
Veronica	67	White	NM	Palliative social worker	MSW	2	16

Data Analysis

We used deductive thematic analysis which involves developing a coding frame prior to analyzing the data (Fereday & Muir-Cochrane, 2006). Our coding process was guided by the following research question: How do respondents conceptualize their role as an end-of-life doula? When we asked doulas, “How would you define an end-of-life doula?” or “What are the primary roles and responsibilities of an end-of-life doula?” many participants initially responded with some version of “we do everything,” similar to Krawczyk and Rush (2020). However, as they elaborated on their experiences of working as doulas, we began to see patterns in the verbiage used to describe their work. Thus, our data analysis began with coding how doulas described their role enactments in their day-to-day work across different social contexts, rather than relying on how they broadly characterized themselves as “advocates” or “facilitators.” In short, we coded their transcripts for when they described actually performing the role. In practice, this meant prioritizing narrative accounts of specific interactions, decisions, and situations over abstract role descriptors or aspirational statements about what doulas should do.

In the first round of coding, we categorized all responses in which death doulas described their roles utilizing various verbs as shown in Table 2. While “support” is a central descriptor in existing taxonomies (Krawczyk & Rush, 2020), we omitted it because the term was too broad and overlapping, making it difficult to distinguish the core ways doulas enact their roles at the micro level. The authors independently coded the transcripts and met to reach consensus on divergences, ensuring intercoder consistency (Fusch & Ness, 2015; Thomas & Harden, 2008). As coding progressed, we noticed that certain conceptualizations described similar roles, and thus we decided to merge these initial coding categories into a singular coding category. While we present educator, advocate, facilitator, and mediator as analytically distinct categories, in practice doulas sometimes moved fluidly between roles or occupied them simultaneously, which we elaborate more on in the findings section.

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Table 2.

End-of-Life Doula Roles with Codes, Exemplar Quotes, and Definitions

Role	Codes	Exemplars	Definitions
Advocate	Advocate, empower, protect, uphold, (giving) voice	“For some reason for her, I was the one advocating when no one else would.” (Maeve)	Acting on behalf of the dying person or family to secure, protect, or advance expressed wishes and needs within end-of-life care.
		“It’s giving, advocating and giving that voice for the family.” (Nora)
		“For the medical staff, I’m there as an advocate for the patient.” (Tabitha)
Educator	Educator, teacher, inform, explain, prepare, clarify	“I just think education is the key and I educate in every way I can.” (Riley)	Providing knowledge or information where it is lacking, including education about the dying process and the role of end-of-life doulas.
		“So for me, the definition is a companion… but I’ve been putting myself out on social media to educate on all of these things.” (Lisa)
		“People wait until very, very late… the hardest part is the lack of knowledge and education that people have.” (Lisa)
Mediator	Mediator, liaison, manage, navigate, communicate, bridge, translate, align	“That can often be harder… because you’re mediating not just death, but family conflict.” (Amelia)	Managing communication and conflict within families or between families and institutions during the end-of-life process.
		“The other big one is they have a mediator role—helping family members who don’t agree.” (Jasmine)
		“You also have to be a mediator, because not everyone is on the same page.” (Riley)
Facilitator	Coordinate, organize, arrange, structure, coach, guide, connector, facilitator	“I feel like there’s a lot of coaching… I look at all of this as helping the family move through the process.” (Lucy)	Guiding and supporting end-of-life planning and the dying process by helping individuals and families move through practical, spiritual, emotional, and relational aspects of care.
		“I try to guide families when people start getting really nervous.” (Riley)
		“Helping the family is a big part of it, navigating what this looks like for them.” (Lisa)

Although the four roles of the FAME model were derived through a deductive coding process, the interpretation of our findings suggests strong theoretical alignment with the compassionate communities frameworks. Many respondents mentioned characteristics of compassionate communities throughout their interviews, such as improving death literacy, strengthening circles of care, connecting families across healthcare and community networks, and advocating around EOL care. Consequently, throughout the remainder of this paper, we situate the FAME model as a framework for understanding how doulas' roles bridge healthcare institutions, families, and community networks.

As qualitative sociologists, we approached this study as outsiders to end-of-life doula practice, as we do not have formal training or professional experience as doulas. This often prompted the first author to ask additional probing questions to clarify participants’ day-to-day work experiences. During analysis, this outsider perspective likely influenced how broadly we coded for roles to ensure we captured the full range of activities respondents described. By prioritizing verb-based descriptors of how doulas articulated their day-to-day functions, we developed a coding framework grounded in participants’ accounts.

Facilitating the End of Life (Care)

Doulas often described their role as facilitators—helping people prepare for death and then assisting in the dying process itself. Doulas described helping with everything from practical tasks to emotional prep and advance care planning. Much of this practical support depends on the client and family’s personal preferences. Lisa explained, “Helping the family is a big part of it,” and talked about gathering care options, organizing appointments, and just making sure people have what they need. Kristin shared how she pulled together a team to clean a client’s house. According to Kristin, this kind of preparation isn’t just about logistics and practical domestic support, it’s about helping people understand what’s coming and making sure the person dying has what they need. Other doulas talked about the importance of demystifying the legal and planning side. Nora said, “It doesn’t have to be expensive [...] you can get your advanced care directives, a legal document, for $5,” and focused on helping people feel less overwhelmed. Clarice described helping expats navigate systems across countries and how the end-of-life laws differ between countries. These forms of facilitation often overlapped with education and advocacy, as planning conversations became opportunities to clarify options, reduce fear, and reinforce client preferences. Respondents offered services on a sliding scale or on a purely volunteer basis primarily for close friends or family in the absence of being covered by health insurance.

Doulas also facilitate the actual dying process and this is perhaps the part people don’t always see, but sitting vigil is essential to doulas' work. They help families stay grounded, talk through what’s happening, and make the experience as close as possible to what the dying person wanted. Abbey said, “Do you need your dog on your lap? [...] Who do you want there, and who don’t you?” Tabitha put it simply: “I make it as peaceful and beautiful as I possibly can.” Lisa talked about walking families through what death will look like—how the body changes, how to keep someone comfortable, and how to create a space that actually reflects what the person wants: “How do we keep out the ones you don’t want here? [...] What do you want? It’s your day,” she said. Riley talked about how getting families to talk and share memories as someone is actively dying is “the best soundtrack you could have at the end of life.” Alexa described helping families create small rituals and intentional spaces during the dying process, explaining that “there’s little human things you can do” to help families “start to kind of set a stage for what’s actually happening.” Rather than focusing solely on medical decline—“the heart rate’s going down”—she encouraged families to share stories, write reflections, listen to music, use comforting objects such as blankets to create more peaceful and personalized experiences. These examples show how facilitation extends beyond logistical coordination (who is/isn’t in the room) to include emotional, spiritual, and ritualizing support, making the dying process more intentional and meaningful. By bringing together families, friends, and care providers, doulas facilitate care across formal and informal care networks.

Advocating for Voice and Autonomy

EOLDs recognize that at the end of life, many people lose autonomy and a sense of control over what happens to them. While both advocacy and mediation involve communication across the care network, advocacy is about acting on behalf of the client or family while mediation is about managing communication within the care network. Doulas intervened on behalf of clients while also building families’ capacity to advocate for themselves. Tessa explained, “I just want them to always know that they are in control still, because they’ve lost, typically they’ve lost a lot of independence, and a lot of decision making.” Amelia said it’s about “keeping the patient’s wishes and desires forefront [...] being the patient’s advocate when they’re unable to [speak], just to make sure that stays part of a conversation.” The role of advocate is thus twofold: advocating for client autonomy while clients maintain some level of control but it can eventually shift to a proximal form of advocacy. Here, the doula’s labor becomes a safeguard for the client’s wishes, ensuring ‘good care’ is maintained even when the individual can no longer make decisions for themselves. What made doulas especially effective in this role is that they occupy an outsider role compared to family members. Ana explained, “You’re in such a high emotional state that your thinking and logic brain aren’t able to process all of that [...] it’s so important to have somebody [...] kind of like the outside observer just taking notes.” That distance gives doulas a more objective approach to make sure clients’ wishes do not get overlooked in the process.

Doulas also advocated for families, especially when navigating medical systems that were confusing, dismissive, or too fast-paced to explain things clearly. Doulas described themselves as translating information, asking questions, or helping families communicate concerns when they did not feel able to do so themselves. Tabitha described being that go-between: “You push that button [for a nurse] and you might wait 20 minutes [...] whereas I can walk down to the nurse’s station and talk and ask a question and bring it back to the family.” Tabitha’s role as a 'go-between' is defined by her ability to act as a proxy for the family, taking on the practical responsibility of retrieving information from medical staff. At times, this advocacy meant empowering families and clients to speak up for themselves and ask medical staff questions. Respondents often described families feeling uncertain about their role in end-of-life decision-making and hesitant to ask questions. Nora framed advocacy as helping families recognize that they still “have a voice.” In her interview, she discussed the “humongous train of end of life” and the assumption that this is simply “how it’s always been done,” even though not everyone “wants it that way.” For Nora, doula advocacy involves “advocating and giving that [decision making] back to the people.” Reflecting on a situation in which a family expressed concern that repeated administration of morphine caused a dying grandmother to sleep during periods when she was otherwise “alert and engaged in conversations,” Nora explained that many relatives assume “if hospice and these doctors and nurses are telling me that this is what has to be,” then they have little choice in the matter. In response, Nora encouraged the family to share their concerns with medical staff, reminding them that “nobody is gonna know what their [grandmother's] needs are and what they want and what they like more than you.” Part of doulas' work involves supporting families in recognizing that they have a voice and that their understanding of their loved ones’ needs is important. For doulas, advocacy is both protective action (ensuring wishes are respected) and empowerment (teaching families to speak up for themselves). These examples illustrate how doulas engage in direct advocacy while also supporting clients’ and families’ capacity to advocate for themselves.

Mediating Conflict and Communication

Doulas often described themselves as mediators—especially when families do not agree about end-of-life decisions or are emotionally scattered. Mediation, according to our respondents in this study, means acting as a neutral bridge, centering the client while navigating family conflict, cultural differences or misunderstandings with medical staff. Riley said, “You have to be a mediator with family [...] Sometimes you have to be that equalizer to calm things down.” Julia noted that conflict can get more intense when there are cultural or religious differences, especially if the client and their family don’t share the same beliefs: “The family thinks that they know what’s best [...] but that’s not exactly the case. [...] Whatever the client says, that’s the law.” Doulas talked about holding firm on that point—centering the client—while also helping families adjust to what that means in practice. Kristin talked about taking the time to understand family dynamics and “bridge the gap” between them and hospice or medical staff. Jasmine’s example shows how sometimes roles intersect, explaining, “We’re the liaison, we’re advocating for the families, getting information from the medical team; we’re part of the team but not medical.” Riley, also enacting multiple roles at once, described a strategy of redirecting when things start to escalate, saying, “Sometimes you need to kind of split people up [...] educate, and then reconvene.” For doulas, managing conflict is not about resolving disputes but about creating conditions that allow families to remain focused on the dying person.

Moreover, doulas describe navigating these situations as akin to walking a tightrope. Nora put it bluntly: “A tightrope walker is my number one. Families and end of life are all over the map.” She explained how some family members try to pull her into their side of the story or unload their frustrations about others. Her job, she said, is “being that neutral party [...] just walking that tightrope.” Other doulas used similar metaphors. Tessa described it as “tiptoeing” through conversations that require both honesty and sensitivity, especially when trying to help families catch up to where the client already is in the dying process. She elaborates: “It's just everybody else catching up…the hardest part about bringing people to the same page of where the dying person typically is…if I were to say a challenge, it would be tiptoeing and gently delivering the, the urgency, the timeline, we're talking days or weeks.” Veronica added that most families come in with “unresolved issues [...] hurts or fears” that can get in the way of communication and planning. And while doulas don’t try to resolve conflict, they act as steady guides—neutral, calm, and focused on the client. Amelia elaborates on how her role as a mediator means she must act as an information gatekeeper at times: “If you’re in the patient’s confidence, you do have to be careful about getting their permission to share anything they share with their family.” Doulas in their role as mediators make it clear to the family that their loyalty is to the person who’s dying—not to managing everyone else’s expectations. These examples illustrate how doulas manage conflict and communication in ways that help maintain focus on the needs of the dying person and the overall experience of dying.

Educating for Death Literacy

Doulas consistently described themselves as educators. Their role as educators took three forms: informing the public about their role as EOLDs, providing community death education, and demystifying the death process. The role is still unfamiliar to most people and that makes it harder for doulas to justify why their work is needed. Nora put it plainly: “We’re so new, we’re trying to first of all, educate; educate people on who we are, what we can do.” Riley described being dismissed by medical staff who didn’t understand the doula role, saying, “You’re gonna think that a doula is a nobody, they’re just in the way.” These reflections highlight a central challenge: not simply invisibility, but questions of professional legitimacy. Educating others on their role and how they are different and necessary for EOL care is an important strategy for countering this perception and legitimizing their expertise (Francis, 2022).

Community death education represents a central component of how doulas describe their work, extending beyond individual clients to broader public and professional audiences. This work takes many forms. Most notably, doulas discussed developing curricula or classes for a range of audiences. For example, Riley explained that she offers a three-session “Death Doula 101” course covering preparation, the active dying phase, and what happens after death. Abbey, Alexa, and Kristin described designing continuing education courses for nurses and social workers. Ana discussed organizing workshops for younger adults on “getting your affairs in order,” while others developed sessions for palliative care teams and oncologists on how to discuss final wishes with patients. Some hosted local Death Cafés. Doulas further described giving guest lectures in social work college classes and offering public talks to community organizations and groups (such as libraries, churches, retirement communities, funeral homes and adult education programs), contributing to broader death literacy efforts.

Finally, doulas described how they demystified the death process for families. Many doulas describe how families contact them very late, and are unfamiliar with EOL options, hospice policies, how to plan for death, and what a good death entails. Lisa explains this in more detail, “People wait until very, very late [...] The hardest part is the lack of knowledge and education that people have.” Maeve added that families often don’t even know how to interact with the person who’s dying: “Most family members have never been into death. And they’re freaked out by it.” Maeve then goes on to explain how she teaches families how to communicate with dying loved ones—another example of the intersection of doulas’ roles. Tabitha also noted that families often want guidance in real time: “Sometimes they’re like, yes, tell us everything.” This lack of preparation can be a detriment to families. Veronica shared a story about a woman whose husband died without help because she didn’t know she had a choice in providers. “She tried doing it all on her own,” Veronica said. “It was very traumatic.” Respondents described these situations as particularly difficult and emphasized how earlier involvement might have changed the experience for families.

Implications, Limitations, and Future Research

This study has several practical implications, along with limitations that point to areas for future research. Although multiple major U.S.-based professional doula networks offer training for EOLDs, core competencies vary, ranging from process-oriented, relational frameworks to more task-based and skills-driven models. As a result, there is no standardized framework defining the core competencies and skills required for practice. More systematic role categories could help structure certification content and promote greater consistency across this emerging profession. For healthcare systems, clarifying these roles may help identify where doulas can be integrated into existing models of care. For doulas themselves, having clearer language to describe their work could help families, medical professionals, and the general public better understand where they fit in end-of-life care.

Situating the FAME roles within Mallon’s micro model, Abel’s circles of care, and the broader compassionate communities framework highlights how doulas enact community-based end-of-life care in practice. Rather than centering support solely within medical institutions, the FAME model shows how doulas help organize, stabilize, and extend care by linking families, hospice services, and broader community networks. However, a full evaluation of how these roles operate within and across compassionate community systems remains an important direction for future research.

At the same time, this work is not without limitations. The sample consisted primarily of white women in the U.S., which reflects broader demographics in doula work. Because compassionate communities emphasize shared caregiving and collective responsibility rather than a professionalized role alone, the FAME model could also inform doula-like care enacted by individuals who do not fit the “typical” demographic or professional profile reflected in existing samples. This shifts the focus to community embedded care practices rather than professional roles. Future research should therefore examine how diverse caregivers—including doulas of color, queer doulas, and culturally specific community death workers—engage in forms of care that align with compassionate community frameworks. Because existing research relies on doulas’ own accounts of the care they provide, more research is needed to examine how clients and families experience and interpret doulas' roles.

Our findings are highly contextualized by the structural conditions of the U.S. end-of-life care system, which shaped how participants described their roles—particularly the emphasis on advocacy, mediation, and providing continuous support where formal services fall short. Because international hospice and healthcare systems are often structured differently across nations, doulas' roles may shift subtly in response to those specific institutional environments. Beyond structural variations, the FAME model is also influenced by U.S. cultural perspectives on death. In other places, where death is more communal or less medicalized, the necessity for roles like the “advocate” or “mediator” may be less pronounced than in the individualistic and death-avoidant U.S. context. Moreover, EOLD movements are taking distinct shapes in the UK, Canada, and Australia. Compassionate communities as a public health approach is more salient in the UK and Europe compared to the U.S., so other roles might be more relevant in those contexts. Thus, while the FAME model offers a systematic framework, it may require adaptation, and future research should examine how doulas’ roles are enacted across diverse healthcare and cultural contexts.