Abstract
Background:
The death doula movement is expanding due to dissatisfaction with the medicalization of death and dying. Existing reviews focus on exploring and defining the death doula’s role in providing care. However, the experiences of death doulas or those performing aligned activities for the dying person, families, and healthcare professionals have not been synthesized.
Objective:
To explore the experiences of engaging with death doulas and those performing aligned activities from multiple perspectives (including the dying person, their families, health and social care professionals, and death doulas or those in activity-aligned roles themselves).
Design:
A systematically constructed integrative review.
Data sources and methods:
Medline, CINAHL, Scopus, and Lens.org (searched September 2024) for concepts related to death doula and palliative care. Inclusion criteria: discussion of death doula or aligned activities; dying persons, families, doulas, or healthcare workers’ experiences with death doulas; any study type; any year; in English. Exclusion criteria: birthing, labor, or maternal doulas/midwives. Non-human death, life-limiting illnesses in people who are not in the end-of-life phase, or healthcare professionals or social workers, reviews, protocols, and abstracts. Papers were coded iteratively and synthesized into final themes. Quality appraisal was done using Mixed Method Appraisal Tool scoring.
Results:
Papers (
Conclusion:
The limited evidence from literature, including experiential perspectives outside of reports from death doulas or those in aligned-activities roles, indicates that research should continue to explore the benefits of adding these roles to end-of-life care. Positive experiences of engaging a doula or with those performing aligned activities appear related to role flexibility, which seems to facilitate other favorable experiences. However, flexibility also seems to be a cause of role confusion and boundary issues, shedding light on the need to develop regulation that protects both death doulas or those performing similar activities and those they engage with.
Open Science registration:
Https://osf.io/jkmsd.
Plain language summary
This systematic review explores the literature about different perspectives experiences when engaging with someone fulfilling the role of a death doula. Death doulas are non-medical but are concerned with the overall wellbeing of those who are dying. They have been gaining popularity as more people are unhappy with the medical care of those who are dying. In total, the researchers found 33 articles from 6 different countries that explored the experiences of dying people, family/caregivers, healthcare workers, and those in the death doula role themselves. This literature review found that death doulas can make sure that all parties have a generally more positive experience as someone nears the end of life. Simultaneously, death doulas are less likely to experience the negatives associated with traditional end-of-life care due to their flexibility, their unique way of creating relationships, and their ability to educate themselves and others on dying. However, there are some concerns about whether this role should be regulated for the safety of death doulas and those they care for. This research adds to the growing body of literature about death doulas by clarifying the experience of engaging with a death doula from multiple different perspectives, shedding light on the advantages of adding them to the care network when someone is dying.
Introduction
The engagement of death doulas has become more common in response to increasing dissatisfaction with modern end-of-life care. 1 In contrast to today’s system of medicine, for much of history, death was confined to the home and seen as natural. As people began living longer toward the end of the 19th century, medicine evolved, and dying happened more in hospitals, 2 leading death care to become increasingly professionalized. 3 In developed countries, this shift was met with increasingly expensive professional care, caregiver burnout, and increased emergency admissions in the last few days of life. 4 With a medical system now more overwhelmed with complex end-of-life cases, providers are less able to provide individualized attention within acute care settings. 1 The lack of resources contributes to dying people experiencing increased pain, anxiety, and dehumanization as they near death.5,6
A solution would seem to be to shift end-of-life care away from hospital settings. However, the medicalization movement has led to a sharp decrease in death literacy and an increase in the fear of death among informal caregivers, such as family members, who would be responsible for the patient if they were to move out of a formal hospital setting. 3 While there is a demonstrated need for these informal caregivers, a need specifically highlighted during the Coronavirus pandemic, 7 these caregivers not only feel unprepared but can experience extreme burdens or burnout when caring for someone with complex or terminal illness. 8
As a result of displeasure with the medical system and an increase in informal caregiver burnout, people are beginning to reach for alternative methods of care.4,9,10 One such approach to death care is the concept of a death doula. The role of a death doula grew from the birthing doula movement, as both death and birth are natural human transitions that have been increasingly overmedicalized. 5 Birth and death are times when people feel the need to plan to have a more transformative and personal experience; birth doula and death doula roles are both centered on facilitating the fulfillment of said plans. 9
Defining the scope and role of death doulas can prove complicated, given their primary goal of meeting people’s needs and wishes at the end of life. Generally, those in a death doula role hold vigils, ease anxieties through meditative practices, promote death literacy to facilitate choice and uphold informed consent, organize legacy work, act as an advocate, mediate care coordination, and prepare both the dying person and their family for what is to come.9–12 They aim to provide non-medical physical, emotional, social, and spiritual support.10,11,13–16 Additionally, those acting as death doulas help to decrease caregiver burden by taking over caregiver roles. 8
Currently, three reviews address the literature on death doulas. Two of these reviews focus on further clarifying and describing the role of the death doula.17,18 These reviews provide information on the range of death doula activities, how death doulas fit into the existing end-of-life and palliative care structure, role regulation, and the advantages and disadvantages of doula services. The most recent literature review on the topic expands on previous work by summarizing who is conducting research on death doulas and the research methodology used to do so, as well as the future directions posed by the available studies. 19 In doing so, the authors draw two relevant conclusions about the genesis of this review. First, the authors conclude that the death doula role remains ambiguous and difficult to distinguish from other non-medical end-of-life roles that may not be designated under the title of death doulas (coordinators, volunteers, spiritual caregivers, etc.). Thus, the authors acknowledge the importance of future investigators taking a broad scope to gather more insights from those who may be doing this work. Second, the authors of this review, like the authors of the previous two reviews, call for an exploration of experiences from all stakeholders during death doula engagement, including dying people, family caregivers, healthcare workers, and the death doulas themselves. Therefore, this integrative review was conducted to synthesize the available literature on the experiences of engaging with death doulas or those who may be engaging in aligned activities from a broad range of perspectives. In this way, the emphasis is shifted from the naming convention, which is indeterminate and perhaps too exclusive, to an emphasis on activities being carried out regardless of what lay role the actor is in.
Methods
Literature review question
What are the experiences of dying individuals, family members/caregivers, healthcare workers, and death doulas (or those in activity-aligned roles) during engagement with such care and support?
Design
This study had an explorative design, performed as an integrative review based on Whittemore and Knafl’s standards. 20 This design was selected for this review as it allowed for the inclusion of both experimental and non-experimental data, 20 making it amenable to a systematically conducted review concerning experience. Additionally, an integrative review was chosen as it extends beyond description, such as in a scoping review, instead exploring and interpreting the found evidence to produce findings as a synthesis. The steps of this review were based on Whittemore and Knafl’s suggestions for integrative reviews and included problem identification, literature search, data evaluation, data analysis, and presentation. 20
Literature search
In the problem identification stage, an adapted population, intervention, comparison, outcome (PICO) model was used to determine the population, phenomenon of interest, and context of the literature review, which were later integrated into the inclusion and exclusion criteria (Table 1). The inclusion criteria for the population of interest were broader than in previous reviews on death doulas. In the most recent literature review on death doulas, Thompson and Utz highlight the overlap between those who identify as death doulas and other non-medical supports at the end of life, such as care coordinators or navigators, volunteers, chaplains, etc.:
Inclusion and exclusion criteria.
Defining EOLD [end-of-life doula] broadly as providing specific kinds of non-medical support during EOL [end of life] (e.g., care coordinators) might allow future research to include broader insights from other non-medical support persons who do similar types of tasks, but who may not identify with the EOLD title. (Thompson and Utz,
19
p. 12)
Thus, to include a breadth of insights not readily identified in previous literature reviews, the population was determined based on alignment with the general care activities provided by non-medical or lay personnel highlighted in previous reviews in studies such as: holding vigils, promoting death literacy to facilitate choice and uphold informed consent, organizing legacy work, acting as an advocate, mediating care coordination, and preparing both the dying person and their family for what is to come and otherwise providing non-clinical support. Since even those who identify as a death doula remain flexible in their chosen activities, those completing at least one of the pre-defined ‘death doula activities’ were included in this review to ensure complete capture of death doulas or those performing aligned activities. Additionally, inclusion criteria accounted for sources beyond empirical or scientific studies, such as narrative articles or stories, which increases the breadth of experiences captured in this review and responds to previous calls in other literature reviews for the inclusion of “gray literature” to increase experiential evidence. 19
In the literature search stage, a comprehensive search of MedLine, CINAHL, and SCOPUS databases was conducted in September 2024. Databases were chosen at the suggestion of a specialist librarian for their inclusion of medical and anthropological sources, addressing the interdisciplinary nature of the death doula topic. An additional hand search of Lens.org was also recommended and utilized for an open-access, decolonized search of gray literature in addition to empirical studies. A search term strategy was developed in partnership with the specialist librarian from adapting the search terms of previous reviews on death doulas,17,18 as well as utilizing the Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) framework. 21 Additionally, the specialist librarian was consulted throughout the search strategy to ensure the search was capturing the highest yield possible while maintaining validity and accuracy.
Search terms were incorporated into a comprehensive search with the help of the specialist librarian. These searches differed slightly as EBSCO hosts (MedLine and CINAHL) employed controlled vocabulary such as MeSH headings, whereas SCOPUS and Lens.org did not (Appendix 1). Search terms that encompassed end-of-life and palliative care included hospice, terminal + illness or disease or cancer, and more (Appendix 1). Doula was searched for using terms like patient navigator, sitter, and companion, while a separate death doula-specific search was also performed, including other words for death doula, like thanadoula or amicus mortis (Appendix 1). The list of terms included in Appendix 1 is meant to be exhaustive and inclusive of roles that may carry out the activities of death doulas but that do not self-identify under the title of death doulas as referenced in previous literature reviews. 19
Rayyan 22 was used as a screening platform to ensure blind screens were completed by both authors. Fifty percent of the papers were double-screened during the initial title and abstract screening, while 20% of papers were double-screened during the full-text review. Both abstracts in the initial screening and full text in the subsequent screening were evaluated for inclusion based on the alignment with death doula activities, as determined in previous reviews, rather than solely based on the title of the role being described. After each review, results were unblinded in Rayyan so that discrepancies in screening could be seen. Discrepancies largely included whether experience was being described; one author may have opted to include an article that had a single reference to experience, while another may have excluded it for lack of experiential description. These disagreements were discussed until a consensus was reached between both authors. For included papers, reference lists and citations were scanned to identify potential papers.
Quality appraisal
In the data evaluation stage, the Mixed Method Appraisal Tool (MMAT) was chosen as it allows for the evaluation of varying types of empirical data, inclusive of qualitative, quantitative, and mixed-method studies (Appendix 2). 23 However, given that reports on experience, especially within a less-researched area such as this, tend to be anecdotal and fall under a gray literature category, this study was not limited to empirical research. Thus, it was decided early in the review process that, because experiences were being investigated, all literature from the final round of screening would be included regardless of quality score. Scores would instead correspond to the weight of each paper, which would correlate to the order they were analyzed and therefore a study’s contribution to theme creation and conclusions. The MMAT was therefore used despite not appraising gray literature, as all literature would be included with varying degrees of weight given to each journal’s overall contribution to findings and discussion. One author appraised all the papers, while a second author was given a random sampling.
Data analysis
Due to the decision to include a wider range of literature as well as papers with mentions of experience in the context of death doula-aligned activities generally, it was recognized that all papers could not be given the same weight in the conclusions drawn. Thus, included papers were ordered, after full-text review, based on MMAT quality scores and evidence yield. High-yield papers referred directly to experiences as opposed to lower-yield papers, which detailed studies containing sporadic mentions of experience but did not have elucidating experience as their main purpose. In this manner, high-yield, high-quality papers were coded first and therefore given more weight as they qualified coding categories. Lower-quality, lower-yield paper was used as support for already identified codes and later for overarching themes rather than being determinative of theme in isolation.
Data extraction was first performed generally for author, year, country, aims, design, study population, and key findings relevant to experiences. Afterward, evidence was extracted using iterative coding, with unique codes being added as they were identified, and evidence being sorted into encompassing codes. Ultimately, each code was examined holistically for synthesis into descriptive and summative themes. Codes were verified by both authors, with one author coding all papers and another verifying using a random sampling. Themes were discussed collaboratively by both authors for total agreement.
Findings
Thirty-three papers encompassing 25 individual studies were included and reported using PRISMA guidelines (Figure 1; Table 2).
24
Papers came from six countries including the United States (
PRISMA diagram of studies. 23
Characteristics and summary of findings of included articles.
PCM, palliative care ministry; UK, United Kingdom; USA, United States.
Six themes resulted from careful analysis and synthesis: emotions before and after engagement, transforming fear through knowledge and literacy, objective companionship, the death doula as a mediator, the death doula cycle, and the tension between flexibility and regulation.
Emotions before and after engagement
A range of emotions was experienced by death doulas or those performing aligned activities. Positive emotions included peace and joy at being able to fulfill the wishes of families and dying people,25–29 as well as feelings of pride and honor at being present during such a vulnerable time.28,30–32 They also experienced negative emotions like stress, sadness, role anxiety, or more existential emotions about death. These emotions required them to utilize self-care practices to decrease burnout.26,28,33,34 Negative emotions also came from processing grief over the loss of the dying person and the future loss of the connection they had cultivated with the family.35–37 The acute intensity of these negative emotions is emphasized as one of the largest challenges of being a death doula or performing aligned activities and highlights the importance of coping mechanisms and emotional control.27,31 However, positive emotions associated with performing death doula-aligned activities facilitate extreme role fulfillment, which decreases emotional burnout.27,31,37
For families and dying people (doulees), engaging a death doula or someone performing aligned activities led to a transformation of negative to positive emotions. Before engagement, doulees felt fear and anxiety, due to uncertainty about the healthcare system and death.38,39 Being on the receiving end of the death doula-aligned activities transformed negative emotions into peace and happiness, or general positivity.38–40 Engagement in these activities alleviated the burden often associated with being a family caregiver.41,42 One family doulee described her and her dying husband’s experience: First of all, she gave me time and it helped relieve me of the anxiety of being with him. . . It gave him a peace of mind. . .I think that was very important, and, to me as well. I think it was great for him because whatever they discussed, whatever transpired, was helpful for him and for me as well. (Trzeciak-Kerr,
42
p. 104)
As a whole, death doulas and those performing similar activities perceived that the respite that they provided helped to facilitate more feelings of closeness and love between loved ones and dying people. 43 Dying people themselves reported that their distress primarily comes from fear of loneliness, 44 but, based on reports from death doulas or those in activity-aligned roles, they later felt more seen and heard, generating positive emotions. 34 These positive emotions contributed to feeling more empowered and autonomous in their dying process. 36
Transforming fear through knowledge and death literacy
Doulees emphasized that it was the death doula or those in activity-aligned roles’ knowledge of the medical system, the dying process, and what happens after that alleviated negative emotions.35,36,39,43,45–47 Family members felt more purpose when death doulas or those performing similar activities translated their knowledge about death into actionable items that made a hard-to-navigate system easier.48,49 In the words of a family caregiver: It was a very confusing time for myself and my mother. The comprehensiveness of the information and the sympathetic way that (the end-of-life doula) provided it was hugely refreshing for all of us involved and gave us a lot more clarity. (Murphy,
43
p. 337)
Anxiety also stemmed from the “unknowns” of death and the taboo of discussing dying more openly; feelings of peace were facilitated through open conversation based on the knowledge and experiences of death doulas or those in activity-aligned roles.27,36,43
Similarly, death doulas or those performing similar activities felt that relying on facts relieved concerns about effectiveness in their roles. 33 Training that emphasized knowledge and death literacy enabled those performing death doula-aligned activities to feel more comfortable discussing death. 31 Often, their previous experiences in healthcare or with personal losses fueled a search for more knowledge, allowing them to eventually step into the role of death doula or a role carrying out similar activities.33,34,50
Objective companionship
One of the commonly reported challenges that death doulas or those in activity-aligned roles experienced was how to establish a relationship built on intimacy and impartiality simultaneously.26–29,33–36,40,42,47,51,52 We came to refer to this theme as objective companionship – a relationship that is intimate but not “personal,” because death doulas or those performing similar activities felt most effective when their own emotions were removed and they could create bonds through empathy and listening.26,52 A death doula says: I’m sitting next to you, and you’re in your quicksand. But I’m not going to get in your quicksand. And it’s that thin veil that you put between you and your patient . . . I am not turning away like I am in this with you. But my emotions aren’t in there. (Hahn and Ogle,
28
p. 1620)
Establishing an objective companionship successfully allowed doulees to experience a sense of openness and comfort unencumbered by the worry of being a burden.27,40,42 If death doulas or those in activity-aligned roles over-expressed their opinions, families reported feeling overwhelmed and disenfranchised from their experiences of the dying and bereavement process.33,34,51 Overall, there was agreement in the literature concerning the need for objectivity, with some variance on whether maintaining relationships with family members after a doulee’s death was appropriate.35,36
Some death doulas and those performing similar activities found that adding a transactional layer, like payment, helps to ensure objective companionship. 52 Others experienced a visceral distaste for payment as they believed that it would make their services inaccessible and detract from the intimacy of the role.27,45,47,53,54 Generally, death doulas or those in activity-aligned roles seemed to be searching for an in-between where a “moral economy” can be established, such that they resolve the turmoil over the need to make a living and the altruism that is at the heart of the role.47,54
Death doula as a mediator
Death doulas or those performing similar activities used the term mediator to describe their experiences of working within different areas of the end-of-life care network.35,43,47,54,55 In the relationship between healthcare professionals and families, death doulas and those in activity-aligned roles provided an extra layer of care, which sometimes alleviated professionals’ feelings of failure when they lacked time to be with the family.30,31,38,53,54,56 Families also reported that having a death doula or someone performing similar activities to assist in navigating the medical system and resolving tense relationships with healthcare professionals provided relief.39,41,49
In their position as mediators within the healthcare system, death doulas or those performing similar activities felt some healthcare professionals did not take their work seriously and undermined their goals of care.50,54–56 This may stem from healthcare professionals feeling inadequate when observing a death doula or those in activity-aligned roles’ successes. 56 Conversely, if death doulas or those performing aligned activities stepped out of the role as a mediator into a clinical area, healthcare professionals lost trust, and the scope of activities of those in lay roles at the end of life became unclear.34,47,54
As a mediator between family members and the dying person, a death doula and those performing similar activities described a neutral stance if there is infighting. 38 They experienced success when facilitating the sharing of “experiences of love” rather than tackling complex dynamics.27,44 They have also experienced that acting as a third party to create compassionate community networks can help address doulees’ needs on a larger level by connecting families and dying people with assistance in their communities. 48
Death doula and those in activity-aligned roles also had the experience of being a mediator between life and death.29,51 One death doula described this phenomenon: Death is like a colleague with another company. . .But we sort of work together. I don’t know what she does, and she doesn’t necessarily get involved with what I do. But my job is to help people have a good transition. (Donley and Fannin,
29
p. 12)
Activities such as facilitating legacy work, providing spiritual guidance, hearing stories before death, and retelling stories after death allowed death doulas and those performing similar activities to occupy a space between life and death.30,42,44,51
The death doula cycle
Death doulas or those in activity-aligned roles described engagement as cyclical in that families wanted to share what they gained from their experience with others who were struggling, effectively passing on the role of a death doula or someone performing similar activities. 36 This is evidenced by the death doula or those in aligned activities across the included studies who cited their own experiences being a part of someone’s dying process as a reason for seeking out the role.26,28,33,37,50,53,57 Performing these activities “provided [doulas or those in activity-aligned roles]. . .a revised and broader context to explore their personal experiences of bereavement and loss, allowing them to gain new understanding and develop new meaning” (p. 6). 26 This continued reflection also revealed the need for continued education as death doulas and those performing similar activities identified holes in their capabilities based on their experiences of previous engagements.29,32
Tension between flexibility and regulation
Death doulas or those in activity-aligned roles found that being completely open and malleable to the wants and needs of everyone they engage with not only separates them from the other roles in the death care network but also accounts for their success.34,42,48,50,52,55 One death doula described this flexibility: So, in terms of . . . slipping in and out of various roles . . . it’s really patient-driven, and I’d much rather it be that way in the first place . . . it’s really about the care that they [clients] need at that moment. (Mallon,
48
p. 8)
Since the work they do is with a vulnerable population, some death doulas and those performing similar activities believe that the role should be regulated and governed. 45 This regulation, however, is believed to decrease the degree to which those performing death doula-aligned activities can be flexible and thereby hinder both the experience of those performing these activities and the experience of the families involved.54,55
Discussion
Summary of main findings
In summary, the aim of this review was to explore the experiences of all stakeholders during the engagement of death doulas and those in activity-aligned roles. Ultimately, the analysis of included papers yielded six themes that encapsulate the experiential evidence of the included studies: emotions before and after engagement, transforming fear through knowledge and literacy, objective companionship, the death doula as a mediator, the death doula cycle, and the tension between flexibility and regulation. It should be noted that the following discussion and conclusions are suggested on the basis of limited perspectives from dying persons, families, and health and social care workers, with the majority of the included papers being from the perspective of death doulas or those in an activity-aligned role.
Evidence from the review suggests that during engagement with a death doula or someone performing similar roles, dying people and their families experienced a shift from negative to positive emotions, formed a unique bond with those performing death doula-aligned activities based on trust, and gained knowledge relating to the dying process that often encouraged others to perform similar activities in the future. In witnessing this relationship between their patients and a doula or someone in an activity-aligned role, some healthcare workers felt relieved and more able to perform their medical duties, knowing that a doula is taking care of the patient’s psychosocial well-being. Other times, healthcare workers felt their position was being encroached upon, likely due to the ill-defined regulation of death doulas and those performing similar roles. Those performing these activities themselves experienced a range of emotions from anxiety at performing their role and caring for themselves to extreme fulfillment and honor at being present for a dying person and their family. Death doula and those in activity-aligned roles also echoed the unique experience of creating a relationship with those they engage; however, they emphasized the importance of finding objectivity in their work. While death doula or those in activity-aligned roles in several studies reported the experience of being called to this role through their own experiences with death or health, others struggled with establishing it as a “job” rather than just a calling, leading to concerns about payment and regulation.
Comparison to wider literature
The shift between negative to positive emotions described by both dying people and families seems to center around an alleviation of guilt and burden. Research on caregiver burden has described negative emotions related to an inability to meet the needs of a seriously ill person and difficulty navigating the medical care system, which mirrors the negative emotions reported by families who are informally caring for the dying before engaging a death doula or someone performing similar activities.58,59 However, the addition of a death doula or someone in an activity-aligned role to the care network of a dying person not only relieves these emotions but also allows for positive emotions, such as closeness and love, to replace them. Death doulas and those in activity-aligned roles may provide an answer to the resounding call for inclusion of caregiver burden and burnout in the holistic treatment plan of a dying person,58,60 not only because they facilitate this transformation of emotions but because they do not seem to be affected by the same burnout despite the burden of care being passed to them. 37 A possible reason for this separate experience may be how death doulas or those performing similar activities experience extreme role fulfillment. Literature on care burnout in healthcare workers indicates that a lack of fulfillment, usually resulting from poor organizational structure and support, increases burnout significantly. 61 Oppositely, the fulfillment described by death doulas and those in activity-aligned roles, which seems to relate to the flexibility of these roles, may work to combat burnout typically experienced by formal and informal caregivers.
Another explanation for the absence of burnout experienced by death doulas and those performing similar activities seems to rely on the concept of objective companionship as established by this review. Establishing a space of closeness while remaining impartial is a unique hallmark of those who practice these death doula-aligned activities. Literature reviews on the nurse–patient relationship indicate that conditions such as time constraints, environmental factors, communication barriers, and stress of the system contribute to a lack of trust within the healthcare worker and patient relationship. 62 The flexibility provided by the role allows for death doulas and those performing similar activities to be present for any need of the patient, thus facilitating trust more readily than a traditional healthcare role. However, the cultivation of such a relationship may risk a violation of boundaries. Ethical research into therapeutic relationships similar to that between families or a dying person and a death doula or those performing similar activities reveals that a violation of boundaries, such as the therapist oversharing or imbuing too many personal emotions, can invalidate the client’s experience. 63 To avoid boundary-crossing, therapeutic research reveals that communication of boundaries is necessary to remain open and empathetic within such a relationship. 63 While this research affirms the need for objective companionship, it also emphasizes the existing argument for regulation for death doulas or those in activity-aligned roles so that boundaries can be less subjective and both doula and doulee are more protected.
Strengths and limitations
This review is the first to explore the experience of engaging with a death doula or those performing similar roles. As such, a choice was made to keep the population of this review specifically broad while the phenomenon of interest, experience, was narrow. In doing so, experience could be investigated from a breadth of perspectives, painting a more complete picture of engagement with someone performing death doula-aligned activities. By elucidating experience from all perspectives, inclusive of death doulas or those in activity-aligned roles themselves, more was revealed about the roles of those performing these types of activities and their place within the end-of-life care network. Another strength of this review is the use of broader inclusion criteria concerning search terms for “death doula” to account for previously excluded voices of those whose activities are similar to death doulas but who do not use the title of death doula. 19 As previously acknowledged by existing literature reviews on this topic, the role of a death doula is still being clarified, and conversations are presently ongoing about whether to develop a unifying certification for death doulas such that there is a single definition. Instead of potentially excluding voices due to the lack of consensus on a single “death doula” definition, this review includes all those who work on activities that are aligned with the activities carried out by death doulas, as determined by the previous literature review.
Given that death doulas and those performing similar activities are a recent development within end-of-life care, the research specifically exploring experience was limited, and much of it was informal and anecdotal. Thus, the decision was made to include gray literature from a limited hand search to better encompass available information on the experience of engaging with a death doula or those in activity-aligned roles. While our interpretation of data gave more weight to empirical studies, our findings should be considered in the context of including low-quality literature. However, given our choice to order literature based on experiential evidence yield and MMAT quality scores, only empirical and relevant studies had the highest weight in theme creation. While it is possible that there was some bias involved in deciding the order the studies would be analyzed, author consensus on the order of analysis was achieved to address this possible limitation. Additionally, given our effort to diminish the risk of alienating key perspectives, it is possible that we were too broad in our inclusion of who could be considered to be acting in activity-aligned roles. This limitation, however, highlights again the pressing need for an agreed-upon definition such that research isn’t confounded or diminished by the inclusion or exclusion of certain non-medical end-of-life care roles. Lastly, while our search terms encompassed “death doula” to the best of our knowledge, it is acknowledged that death doula-like roles are likely performed in non-Western societies under different names, which limited the geographical reach of this study to mostly Western regions. It is possible that the use of comprehensive databases—MedLine, CINAHL, and SCOPUS—missed literature that could be found in other smaller and specific databases. However, an open-access, decolonized hand search of Lens.org, at the recommendation of a specialist librarian, was conducted to mitigate the effects of limitation.
Recommendations for policy, practice, and research
Recommendations for policy, practice, and research are based on the evidence presented in this review. Based on this body of literature, policy surrounding death doulas and those in activity-aligned roles must be approached cautiously. While ethical boundary setting within the doula–doulee relationship seems necessary, there is a call against regulation within the community itself for fear of limiting the flexibility that makes the role unique and successful. It may be helpful to consider registration or certification under a united body for organizational and data purposes before implementing a policy concerned with regulation. Furthermore, as discovered during the construction of this review, there is a need for continued clarification of who can be considered a death doula and whether the activities attributed to death doulas by previous reviews can be applied to other non-medical supports at the end of life, regardless of self-identification. This action is increasingly important in terms of conducting rigorous research in this field that does not exclude necessary voices or include too wide a range.
In terms of practice, this review highlights the numerous ways that death doulas and those performing similar activities add to the team of professionals who work within end-of-life care. The flexibility, both in terms of time and role, allows death doulas and those in activity-aligned roles to close gaps in end-of-life care that have been cited by patients, families, and healthcare workers. However, there is still resistance to the role in some healthcare spaces, mostly because of misunderstandings of role boundaries. This is another way certification under a registered organization could aid this work; by legitimizing the role, healthcare workers may feel their jobs are less threatened and be more inclined to work with death doulas or those performing similar activities.
The objective of this paper was to explore the experiences of engaging with death doulas or those performing aligned activities from multiple perspectives, including the dying person, their families, health and social care professionals, and death doulas or those in activity-aligned roles themselves. While this objective was met, when examining the body of included literature in this review, only 4 out of 33 included the perspective of the dying person, 5 included the perspective of the family, and 5 included the perspective of health or social care professionals. Thus, these voices begin to add to the larger discussion on death doulas and other activity-aligned roles, but future research must be directed toward the experience of people who are actively utilizing death doulas or those performing similar activities. The precarious nature of this population, in that they are all at the end of life, has led to a dearth in this perspective. It is important to understand how this type of engagement facilitates or creates boundaries to the end-of-life process for those who are dying instead of through family proxies.
Conclusion
Engaging with a death doula or someone in an activity-aligned role at the end of life has been demonstrated to be one way that dying people, family caregivers, and healthcare workers can address the issues facing end-of-life care currently. Due to limited literature from perspectives outside of the death doula or those performing similar activities, it is suggested that engaging with those in a death doula or activity-aligned role provides a unique and positive experience for all those involved, providing strengthened evidence to continue exploring the inclusion of those engaging in death doula or activity-aligned roles within the end-of-life care network.We propose, based on the evidence in this review, that death doulas and those performing similar activities’ have a degree of flexibility that allows them to facilitate a more positive experience for the patient, family caregiver, and healthcare workers. This flexibility seemingly allows them to work on many levels, including increasing death literacy, reducing negative emotions, and acting as a mediator. However, it is this same flexibility that seems to cause the role confusion that makes engagement with a death doula or those in an activity-aligned role mystifying for healthcare workers, and previous research on the subject. Thus, a future challenge to be tackled by stakeholders in this field is to regulate the role in a manner that doesn’t decrease the positive experience of engagement but that clarifies the role to ensure clarification and protection for all involved. Additionally, future research must continue to investigate the experience of engaging with a death doula or those performing similar activities, specifically from the perspective of the dying person, to continue to show the need to include death doula and those in activity-aligned roles more readily within end-of-life care systems and to educate a wider audience about a resource they could reach in an end-of-life care setting.
Footnotes
Appendix
| Author(s), year, country | Study design | Aims | Key findings relevant to death doula engagement experience | Mixed Methods Appraisal Tool (MMAT) V2018 |
|---|---|---|---|---|
| Corporon, 2011, USA | Narrative article | - To describe the goals of Baylor’s death doula program |
- Death doulas describe interactions with patients as peaceful and happy, especially when facilitating spiritual requests | – |
| Germain et al., 2016, UK | Qualitative—phenomenology | To explore the experiences, perceptions, and motivations of volunteer end-of-life companions by phenomenologically analyzing reflective diary entries that were required of all volunteers in the pilot program | - Volunteers found themselves leaning on empathy and humility to move past their own emotions |
1. Is the qualitative approach appropriate to answer the research question? |
| Goddard, 2016, USA | Qualitative—phenomenology | To explore the role of “transitional objects” in the dying process, specifically in dying processes in which an end-of-life doula or hospice care worker has been engaged | - Objects have helped end-of-life doulas carry out their role as objective companions in that it becomes a physical |
1. Is the qualitative approach appropriate to answer the research question? |
| Kaldy, 2016, USA | Newsletter reporting on end-of-life doulas | To describe the role and experiences of end-of-life doulas who are a part of INELDA | - Families report a balance of fear/sadness with happiness/peace when working with an end-of-life doula |
– |
| Trzeciak-Kerr, 2016, USA | Qualitative—phenomenology | - To understand the perception of end-of-life doulas and doulee family members’ lived experience while participating in an end-of-life doula program |
- End-of-life doulas’ experience of “being there” for a patient means coming with no expectations or preconceived notions of what you “should” be doing |
1. Is the qualitative approach appropriate to answer the research question? |
| Lentz, 2018, USA | Qualitative article | To describe the role of a PCM team led by a palliative care doula | - PCM team cites dying people finding peace through achieving their personal goals of care at the end of life |
– |
| Mitchell, 2019, Canada | Qualitative—phenomenology | To explore the role, services, and skills of death doulas operating in Saskatchewan | - Objectivity is required because death doulas have experienced families feeling disempowered if a death doula comes on “too strong” |
1. Is the qualitative approach appropriate to answer the research question? |
| Bekelman et al., 2020, USA | Mixed-methods approach—sequential explanatory design | To test the feasibility of a palliative care patient navigator program for Latino/a patients with advanced cancer | - Patients’ experience with the navigators was overwhelmingly positive |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Fink et al., 2020, USA | Qualitative description | - To understand the content of patient navigator meetings with intervention arm families |
- Patients felt like they were more able to handle conversations with healthcare professionals with the support of the navigator |
1. Is the qualitative approach appropriate to answer the research question? |
| Krawczyk and Rush, 2020, UK | Qualitative description | To understand the development and practices of end-of-life doulas across four countries | - Many end-of-life doulas reported that having a healthcare or alternative medicine background or a personal experience with death (or both) drove them to this role |
1. Is the qualitative approach appropriate to answer the research question? |
| Rawlings et al., 2020, Australia | Mixed methods | To clarify the ambiguity about the roles, experiences, skills, and education of death doulas | - In death doulas’ opinions, economizing and registering death doulas would defeat the mission of accessibility inherent to the role |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Tumber, 2020, Canada | Qualitative—phenomenology | - To understand how death doulas fit into the larger framework of death care and death reform |
- In some death doulas’ experiences, starting to work with a family as soon as possible is important for building a relationship where death education can occur before death |
1. Is the qualitative approach appropriate to answer the research question? |
| Francis, 2021, USA | Qualitative description | To explore the identities of end-of-life doulas through the lenses of gender, class, race, and occupational legitimacy | - Death doula often use intimacy to describe their experiences because it distinguishes it from being “personal” and therefore involving themselves |
1. Is the qualitative approach appropriate to answer the research question? |
| Mallon, 2021, Australia | Qualitative description | - To develop a model for a compassionate community network that expands the current model set forth by Abel et al. |
- Some death doulas report that while relationships between themselves and the dying person or family are important, often it’s more about facilitating the creation or support of relationships within he dying person’s network and community |
1. Is the qualitative approach appropriate to answer the research question? |
| Murphy, 2021, UK | Qualitative description | - To describe the roles of end-of-life doulas, including training |
- End-of-life doulas center the dying person and their family and then operate as a mediator for all go-betweens during the end-of-life experience |
1. Is the qualitative approach appropriate to answer the research question? |
| Rawlings et al., 2021, Australia | Qualitative description | To gain the perspective of death doulas on their role within both health and social care environments | - Death doula’s experience of advocating for the patient often feels more like translating between multiple parties |
1. Is the qualitative approach appropriate to answer the research question? |
| Dellinger Page et al., 2022, USA | Mixed-methods approach—sequential explanatory design | - To record what the time an end-of-life doula spent with a dying person/family looked like |
- End-of-life doulas feel as though the ability to provide peace and support is the greatest reward of engaging with dying people and their families |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Ellison, 2022, USA | Narrative piece about the experience of a death doula | - To share the experiences of an end-of-life doula who has worked with dying people who have intellectual disabilities |
- With the end-of-life doula as facilitator, family members’ “active” role in the dying process allows existing relationships with their loved ones to become more meaningful through and after death |
– |
| Garces-Foley, 2022, USA | Qualitative description | To understand the development of the non-medical end-of-life movement from end-of-life volunteers to professional end-of-life doulas | - End-of-life volunteers speak about “life review” or the concept of experiencing and eliciting the dying person’s story so that they can feel as though it won’t be lost |
1. Is the qualitative approach appropriate to answer the research question? |
| Hahn and Ogle, 2022, USA | Qualitative description | To further elucidate the roles and motivations for end-of-life doulas | - End-of-life doulas speak to experiencing death in their personal life and feeling like their experiences as end-of-life doulas have given them a sense of grounding or control |
1. Is the qualitative approach appropriate to answer the research question? |
| Chen and Yang, 2023, China | Narrative article | - To describe the experience of introducing hospice narrative doulas to a clinical hospice environment |
- Before the utilization of hospice narrative doulas, patients felt more distressed by loneliness and isolation than fear of death itself |
– |
| DeDiego et al., 2023, USA | Mixed-methods approach—triangulation | To understand the roles and experiences of death doulas operating in the USA | - Many death doulas felt called to the role after their own positive experiences with death doulas in their own time of need |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Dellinger Page and Husain, 2023, USA | Mixed-methods approach—sequential explanatory design | To explore the different characteristics of end-of-life doulas certified by INELDA | - End-of-life doulas describe their experiences working within hospices as being a “bridge” between non-medical and medical parties |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Hahn et al., 2023, USA | Qualitative description | To illuminate the challenges that face end-of-life doulas during end-of-life doula engagement | - End-of-life doulas can find it difficult to create a boundary between being present and getting emotionally involved |
1. Is the qualitative approach appropriate to answer the research question? |
| Incorvaia, 2023, USA | Qualitative description | - To describe the scope of practices, trainings, and functions of end-of-life doulas | - With so many doulas hailing from medical backgrounds, there is sometimes an expressed challenge in drawing a clear role boundary |
1. Is the qualitative approach appropriate to answer the research question? |
| Krawczyk et al., 2023, UK | Qualitative description | To summarize the findings, specifically relating to the experience of being a doula, from the first International End of Life Doula Symposium | - Agreement in experience that death literacy increases calm during end-of-life experiences |
1. Is the qualitative approach appropriate to answer the research question? |
| Rawlings et al., 2023, Australia | Qualitative—phenomenology | - To understand the experiences of family members and patients who used a death doula for a dying loved one from the perspective of bereaved family members |
- Death doula engagement allowed family members to feel prepared to deal with their loved one’s death from both an emotional, practical, and spiritual standpoint |
1. Is the qualitative approach appropriate to answer the research question? |
| De Campos et al., 2024, USA | Quantitative descriptive study—survey | To determine the experience of hospice staff, patients, and end-of-life doula volunteers who participated in the implementation of a volunteer end-of-life doula pilot program within a hospice setting | - Caregivers felt that engaging with an end-of-life doula gave them more information about what to expect when their loved one was dying |
1. Is the sampling strategy relevant to address the research question? |
| Donley and Fannin, 2024, USA | Qualitative description | - To explore death doulas’ understanding of spiritual needs at end-of-life and understand how they provide those needs- To understand the experience of death doulas who navigate working with those who have different spiritual or religious beliefs from them | - Many death doulas, after beginning their practice, decide to seek out additional training in diverse alternative care to personalize their engagement |
1. Is the qualitative approach appropriate to answer the research question? |
| Rawlings et al., 2024, Australia | Mixed methods | To understand health care practitioners’ perceptions of what a death doula is and does | - Healthcare professionals who identified as having worked alongside a death doula hold the work of the death doula in either positive regard due to “good effect,” or feel that they were entirely ineffective |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
| Tay Ying, 2024, Singapore | Autobiographical narrative story | To describe the experiences of one death doula working in Singapore | - Death doula describes coming to end-of-life doula work as a “calling” |
– |
| Yoong et al., 2024, Singapore | Qualitative description | To elucidate nursing students’ experience of a death “service-learning program” during a 6-month palliative care service rotation | - Death doula student trainees felt unexpected gratitude at being witnesses during the end of life and felt that death doula training eased some of their fears and misconceptions surrounding death and dying |
1. Is the qualitative approach appropriate to answer the research question? |
| Yoong et al., 2024, Singapore | Mixed-methods approach—sequential explanatory design | - To evaluate the impact of a death doula service-learning experience for nursing students on students’ competencies in palliative care |
- Student death doulas showed improved attitudes toward death after completion of training |
1. Is there an adequate rationale for using a mixed-methods design to address the research question? |
PCM, palliative care ministry; UK, United Kingdom; USA, United States.
Acknowledgements
A specialist librarian at Lancaster University assisted in designing the search strategy for this review.
Ethical considerations
This article does not include any studies with human or animal participants.
Author contributions
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Author S.G.W. received funding for an exploratory fellowship, which included travel to and participation within the International Observatory on End-of-Life Care at Lancaster University, through the Watson Foundation as a Thomas J. Watson Fellow.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
All data used are displayed in the included tables, references, and Appendices. Excluded articles are housed in Rayyan and can be accessed by contacting either author.