Design

This study used a qualitative design conducted with in-depth individual interviews. This study is reported according to Consolidated Criteria for Reporting Qualitative Studies (COREQ) and Standards for Reporting Qualitative Research [28,29].

Setting

Members of the care team were recruited from palliative care units located in Isfahan, Tehran, Kerman, Mashhad, Qom, and Kashan Provinces.

Inclusion criteria for all participants

The inclusion criteria were the willingness to participate in the study, a minimum of two years of experience in palliative care, the ability to communicate verbally, and no confirmed psychological disorders under treatment so a total of 14 care team members with experience in providing care for patients with cancer in palliative care units located in Isfahan, Tehran, Kerman, Mashhad, Qom, and Kashan Provinces (selected for their established cancer palliative care centers) attended the interviews. Care team members were invited to attend the interviews, either online or face to face, via email or text message by a member of the research team. All eligible persons invited agreed to participate in the study.

Exclusion criteria for all paticipants

Paticipants who were unwilling or unable to continue participating in the study for any reason.

Relationship with participants

No prior relationship was established between the researchers and participants. Participants knew where the researchers worked and the purpose of the research. The three researchers had an interest in the research. NS and IB had previously worked in palliative care research.

Data collection methods

Data were collected using in-depth semi structured interviews by two researchers (NS and IB).The majority of interviews (n = 10) were completed by the lead researcher (NS) with IB completing a small proportion (n = 4) whilst the lead researcher was on “business trip. NS was experienced in conducting semi-structured interviews and has certificate in fellowship in palliative care also IB had experience in conducting qualitative studies and her research focus was in the field of palliative care.

This study did not provide a predefined interview guide. The two main questions posed were:What prerequisites may be relevant for the role of death doulas?, What challenges might arise in the implementation of death doula roles?

During the interviews, exploratory questions were also asked to elicit more information and to clarify any ambiguities in participants’ statements. At the end of the interviews, participants were invited to add further comments if they wished, and their participation in the interview session was acknowledged. Participants were also informed that if new questions emerged after transcription of the interview content, they would be invited to participate in additional interviews. In this research we tried to address communication impasses in interviews with listen actively, maintain a respectful and calm demeanor, use supportive techniques like rephrasing questions, establish strong rapport by creating a comfortable environment and adjust our interviewing style to the participant’s needs.

Data analysis

The interview texts were analyzed using qualitative content analysis as described by Graneheim and Lundman [30]. Three researchers with diverse backgrounds in data analysis participated: NS, a professor and PhD supervisor who holds a fellowship in palliative care and is a seasoned qualitative researcher with numerous publications in reputable journals; IB, a PhD supervisor and researcher in palliative care and qualitative studies; and AD, a researcher in palliative care and qualitative studies who is a doctoral student. The principal investigator (NS) prepared the interview texts after each interview. All researchers read the interview texts repeatedly to become familiar with the overall content. Two members of the research team, NS and IB, identified meaningful units, summarized them, and assigned codes to them. The third researcher (AD) read and analyzed the interview texts independently. NS and IB continuously compared codes and semantic units to identify similarities and differences, and they re-examined the raw data when ever necessary. The codes were then organized into subcategories and categories. The entire analysis process was conducted through reflection and discussion until consensus was reached between the two researchers. In case of disagreements, consultation with the third researcher (AD) occurred. The final categories were discussed among the research team. Coding and data analysis were performed using MAXQDA-2020. The results were emailed to some participants and asked to indicate their agreement with the categories and subcategories: “I fully agree with these finding.”

Transparency and trustworthiness of findings

To enhance data credibility, after conducting the interviews and completing the initial coding, the study findings were reviewed and revised by some participants based on their comments. To ensure the reliability of the findings, in addition to the researchers, several experts in qualitative research (peer review) were invited to examine the findings and assess the rigor of the data analysis process. To further ensure the trustworthiness of the findings, an external auditor reviewed the codes and extracted categories and compared them against a sample of interview excerpts, making revisions based on the feedback provided by the auditor. To improve transferability of the findings, the results were shared with several experts who did not participate in the study, who compared and aligned the findings with their own experiences. Finally, to examine confirmability, the themes and categories extracted by some external raters who did not participate in the study were reviewed and confirmed.

Researchers’ positionality

We actively practiced reflexivity. Reflexivity included consciously examining our own beliefs, assumptions, and methods, and how these unconsciously influence the study design and the data analysis process [31]. To further support active reflexivity, we employed strategies such as awareness of our own interests and values, and our over-arching assumptions as researchers—through immersion, use of prompts, and regular reflection and review of these elements.

Ethical approval

The protocol used in this study was approved by the Ethics Committee of Shahid Sadoughi University of Medical Sciences, Yazd with the code of ethics IR.SSU.REC.1402.004. After receiving verbal consent and completing the written consent form participants, they were involved with study and to maintain anonymity, the interviews were conducted only in the presence of the participants and the researcher(s), and the confidentiality of the information and audio files was maintained. The participants were also reminded that they would be free to withdraw from the study at any time. At the end of the study, the researcher’s phone number was provided to the participants so they could be informed of the study’s results if desired.This research were conducted from 25/4/2023–29/7 2024. In this study, participation was completely voluntary and participants were not paid as a reward for their participation, and they were assured that the research findings would be made available to them for study and use if they so desired.

Theme 1: Prerequisites for establishing the death doula role

The prerequisites for establishing the death doula role theme include three categories. Categories include the drivers for shaping the death doula role,the death doula’s recruitment and training and the death doula’s recruitment and training.

1.1 The drivers for shaping the death doula role

The drivers shaping the death doula role category include 3 subcategorries: the signals received from patients, signals received from families, and signals within the death doula:

1.1.1 Signals received from patients:

The majority of participants highlighted the pressing realities such as the high cost of ineffective treatments, the inevitability of death, the importance of caring for a dying person rather than just the body, and the humanistic approach to EOL care underscore the need for the death doula role, particularly for terminally ill patients without caregivers or those facing loneliness. Observations such as nearing the end of life, denial of death, emotional and psychological distress, and enduring hardships during the final days amplify the importance of this role.

1.1.2 Signals received from families: Several participants emphasized that families also require support during EOL care. Without such support, families may experience exhaustion, loneliness, and psychological trauma, leading to familial instability and potential disintegration. This family stress can cyclically affect the patient, worsening their physical and mental state. Therefore, training death doulas to support families during these critical times is crucial.

1.1.3 Signals within the death doula: number of participants stated that a spiritually inclined doula, motivated to assist patients, who finds meaning and purpose in this role, would be more effective. Believing that the role positively impacts their personal life and integrating their beliefs into their actions could facilitate the doula’s active participation.

1.2 Death doula’s recruitment and training

Death doula’s recruitment and training category included 6 subcategories: qualifications, physical and mental readiness, necessary skills, holistic knowledge about cancer and patient needs, death literacy, and self-awareness:

1.2.1 Qualifications

Many participants stated that individuals selected for this role should have at least an academic background related to medical sciences and be a member of the healthcare team, such as nurses, nurse assistants, or clinical psychologists with experience in working with cancer patients. Some participants suggested that death doulas could also be non-professionals with the necessary capabilities, such as family members or individuals with lived experiences in this area.

1.2.2 Physical and mental readiness

The selected individuals must undergo assessments to ensure their physical and mental readiness. Doulas need sufficient physical strength to provide basic care, such as repositioning patients, and should not have severe disabilities. The participants described ideal doulas as calm, optimistic, problem-solving, and highly adaptable individuals. They should also be free from psychological disorders and possess a positive perspective on death to support patients and families effectively.

1.2.3 Necessary skills: Training is essential for individuals assuming the death doula role. Several participants stressed the importance of communication skills to establish trust with patients and families. Doulas should assess patients’ and families’ needs and provide comprehensive care across physical, psychological, social, and spiritual dimensions. They must address patients’ and families’ questions and concerns, offering appropriate counseling. In addition, having nursing skills, could help avoid improper hospitalizations.

1.2.4 Holistic knowledge about cancer and patient needs: The majority of participants emphasized that training should encompass holistic knowledge about cancer and its impact on patients. Doulas need to understand common physical issues, such as underlying causes of symptoms, hidden pain indicators, and factors influencing pain expression (e.g., cultural background, emotional state, and cognitive function). They should recognize signs of anxiety and somatization and provide effective emotional care. Furthermore, doulas must understand patients’ spiritual needs and the distinction between religion and spirituality in patients to offer better spiritual care. Considering the humanistic approach adopted by death doulas, cultural and social factors of patients and their families should also be taken into account.

1.2.5 Death literacy: An essential component of training death doulas is enhancing their death literacy, which included understanding the process of dying, patient anxiety and fear of death, the stages of coping with death as per Kübler-Ross’s framework, and effective coping mechanisms. Doulas should also be familiar with the rituals and customs of dying individuals, mourning ceremonies, and the preparation of wills following religious guidelines.

1.2.6 Helping develop self-awareness: Death doula training should include opportunities to help doulas develop self-awareness regarding their worldview. The participants emphasized that doulas need a positive outlook on life and the afterlife, clarity about their values, beliefs, and religious perspectives on life and death, and an understanding of their philosophy of life. They should also analyze and reflect on their attitudes toward death and dying.

1.3 Infrastructural preparation

Infrastructural preparation category included 3 subcategories: defining financial, legal, and ethical support, determining service delivery mechanisms and monitoring doula performance.

1.3.1 Defining financial, legal, and ethical support: Many participants emphasized the importance of establishing ethical, legal, and compensation frameworks before introducing death doulas into patient care. Sustaining this role requires the support of physicians, administrators, insurance providers, and NGOs.

1.3.2 Service delivery mechanisms: After training, plans should be developed for how death doulas will provide services. The participants suggested these services could be offered voluntarily, on a short-term or sessional basis, rather than as continuous involvement. Services could be provided in various settings (home, hospice, or hospital). In hospitals, doulas could begin as auxiliary staff during shifts and later, with prior coordination with the patient and family, continue care at home after patient discharge.

1.3.3 Performance monitoring

Before commencing work, death doulas should be assessed for competency, certified, and subsequently supervised. Regular evaluations should be conducted to identify areas for further training and improvement. Moreover, the outcomes of their services should be systematically monitored.

Theme 2: Challenges ahead

The challenges for implementing the doula role theme include 2 categories: unawareness of patients and families and lack of formal recognition.

2.1. Unawareness of patients and families

Unawareness of patients and families category include 2 subcategories: unfamiliar with the term death doulas and their role and negative perceptions of death doulas.

2.1.1. Unfamiliarity with the term death doulas and their role:

The majority of participants highlighted that the term “doula” is unfamiliar to the Iranian public, as it lacks cultural and linguistic roots in the country. unfamiliarity with the concept of doulas represents a key gap in comprehending their purpose. The participants also pointed out that The juxtaposition of “death” and “doula” may evoke confusion, as the word “death” carries heavy connotations that might not align with the supportive nature of the role. the presence of “death” in the term often leads to a cascade of questions: “Isn’t death the end of life? Who is a death doula? What does a death doula do?” and Ultimately, the unfamiliarity with the term “doula”, limited understanding of the role and responsibilities of death doulas, the absence of this concept in the Iranian cultural context, and insufficient awareness of the importance of such a role may all contribute to public misconceptions.

2.1.2 Negative attitudes toward death doulas

Several participants acknowledged that the focus on death doulas intervening only during the final stages of life and engaging with patients and families before and after death could create the impression that doulas exploit others’ grief to secure a livelihood. Essentially, the death of an individual might be seen as an opportunity for income generation or for death doulas to showcase their role and attract clients. The participants also pointed out that part of the negative perception surrounding death doulas comes from the healthcare team, especially physicians, who view doulas as intruders in the treatment process. They perceive the presence of doulas in the final stages of life as unwelcome, believing that doulas hinder doctors from continuing their treatment efforts. Another issue highlighted by the participants was the belief that the emergence of the doula role is merely a way to make money. It was suggested that the role is designed to capitalize on the final moments of life and serves as a minimal-effort job for those lacking any other form of employment or business, allowing them to generate income relatively easily.

2.2 Lack of formal recognition

Lack of formal recognition category include 2 subcategories: Resistance from the Care Team and Role ambiguity

2.2.1 Resistance from the Care Team:

The acceptance of doulas as a member of the treatment team was another issue highlighted by participants. They suggested that the treatment team typically consists of individuals with diverse specializations who collectively form a unified circle aimed at advancing the treatment process and caring for the patient. For death doulas to play a role within this framework, the circle must expand to include a new member—a death doula—who can begin their role in the EOL stages. However, this integration cannot occur until the treatment team becomes open to the presence of doulas.

A lack of acceptance would mean no opportunity to define or fulfill the doula’s role. Another problem was the reluctance of medical staff to refer the patient to death doulas even at the final stages of life or when treatments are deemed ineffective. In such situations, medical staff are often reluctant to allow doulas to provide support to dying patients and their families. This lack of acknowledgment in the care environment hinders doulas from performing their role effectively, as it disrupts their interaction with patients and families.

The presence of doulas could challenge the continuation of futile treatments and emphasize care that ensures peace and comfort in a patient’s final days. This shift may position doulas as individuals who redirect patients and families away from traditional treatment approaches. The philosophy and type of services offered by doulas differ from conventional medical practices, and if these services gain acceptance, it might foster a sense of rivalry among other care team members.

2.2.2 Role ambiguity:

The ambiguous position of death doulas within the healthcare system can be considered a fundamental challenge to their ability to perform their role. If the position of doulas and the scope of their work within the healthcare system remain undefined, their role will lack clarity, hindering their integration. Similarly, if the specific settings where doulas are to operate are not established, and, most importantly, if the process of integrating this role into the system is not adequately clarified, death doulas will not be able to function effectively or gain practical applicability.

Prerequisites for establishing the doula role

Prerequisites for establishing the doula role arise from recognizing signals arising from the patient, the family, and the dual-role itself. These three elements are interconnected, like the three sides of a triangle, in which the emergence of one side stimulates the emergence of the others. In line with this finding, Silva and colleagues highlighted indicators such as worsening health conditions, rapid decline in function, frequent and unplanned hospitalizations, reduced responsiveness to treatments, and a higher burden of complex symptoms as signs signaling approaching end of life. They emphasized that early prediction of caregiving needs leads to better planning and improved end-of-life care [32].

According to participants statements, as patients enter the terminal stages of life, their dependence on family members increases so their family feel a heavy caregiving burden and they need the presence of an individual to support them in the EOL stages. In support of this finding, Rawlings and colleagues state that the presence of ‘dual-role’ can be associated with a reduction in death-related fear and anxiety, empowerment of families, and the provision of psychological, emotional, and spiritual support [16].

The findings also showed that the internal signals of the doula were part of the “drivers for shaping the doula role”. Intrinsic motivators such as a desire to help others, spirituality, interest in EOL care, and a search for the meaning of life drive individuals toward the doula role. Aligning with this finding, Claxton highlighted the “aha moment” experienced by doulas, where becoming a doula is not a linear process but often stems from prior work in palliative care or hospices. During this moment, they realize their purpose—to help others, educate them, and promote the acceptance of death as a natural part of life despite its sadness [33]. The pursuit of emotional and spiritual fulfillment as motivators for becoming a doula is similarly noted in studies by Guirguis (2008) and Claxton (2011) [33,34]. Krawczyk and Rush (2020) also explored doula’s perspectives, finding that some chose the role after caring for a dying individual and recognizing the need for better support and education for other patients and families during this process [15].

Another prerequisite for establishing the doula’s role is recruitment and training. this category require assessing several factors: the applicant’s educational background, whether they are part of a healthcare team, a volunteer interested in the doula role, a family member of the patient, or someone with caregiving experience for dying individuals, as well as their physical and mental readiness for the role.

The literature provides limited information on these criteria. For instance, Lentz’s study suggested that doulas can be experienced palliative care nurses who are active, retired, or semi-retired [35].

Elliott (2011) highlighted that doulas are trained mentors or volunteers who provide non-medical services [36]. Rawlings et al. (2020) stated that doulas with a nursing background can conduct comprehensive assessments and collaborate with care teams to manage the dying individual’s symptoms. However, this dual role of being both a doula and a healthcare team member may create role overlap, leading to confusion. For example, families might expect medical care from doulas with healthcare experience [16].

Another criterion identified in the present study was having experience in caring for a patient during the dying process. Consistent with this finding, Rawlings et al. (2020) noted that some doulas attributed their decision to become death doulas to their prior professional experiences. They had witnessed individuals who did not experience a “good death” and, as a result, were motivated to provide knowledge and support for others going through the dying process [16].

The participants acknowledged that doulas must receive some training on communication skills, basic nursing skills, death literacy, and worldview development. Tzeciak-Kerr’s (2016) study identified the topics covered in an intensive doula training course, including preparing for the doula role, self-care, the dying process, cultural influences, finding meaning, spirituality, religion, and active listening skills [37].

The final “prerequisite for establishing the doula role” was infrastructural preparation. Accordingly, for death doulas to function effectively, foundational elements must be established, such as determining how doulas will be supported, how services will be provided, and how their performance will be. Krawczyk et al (2020), in line with this finding, stated that regarding licensure, standardization, and professionalization of the dual-role across various domains, there are diverse perspectives, and inconsistency within legal frameworks sometimes leads to inadequate training programs. Therefore, quality control and oversight of performance were emphasized as essential to ensure the competence of the dual-roles and the issuance of appropriate licenses [20].

Another issue that must be clarified in any setting where the role of a doula is being implemented is compensation methods. During an informal survey at a 2022 symposium, doulas attended from seven countries, predominantly from Australia, Canada, the United States and the United Kingdom, various perspectives on this topic were discussed, including the use of sliding scale criteria, payment through donations or contributions, payment via private health insurance systems, payment through subsidies defined in the care system, and finally, the possibility of fulfilling the doula role voluntarily and without financial compensation [20]. Rawlings et al. (2023) surveyed 12 doula training organizations and reported that six organizations opposed the idea of doulas working for free. They argued that if doulas work on a volunteer basis, it could devalue the role of doulas as trained professionals. They emphasized that compensation should be established to value the services provided by doulas. Four organizations stated that whether or not to charge for services should depend on an agreement between the doula and the client (the patient and their family) [38].

Another aspect that needs to be clarified within the framework of service provision is the method of service delivery by death doulas. In a review of the literature, the only study addressing this issue was conducted by Lentz (2014), which suggested that meetings between death doulas, patients, and families could be scheduled regularly based on changing circumstances, establishing a consistent pattern of interaction (daily, weekly, monthly, or via phone calls) [35].

Challenges ahead

The data in the present study showed that the challenges for implementing the doula role are unawareness of patients and families (unawareness of doulas and their roles and negative attitudes toward death doulas) and lack of formal recognition (resistance from the healthcare team and unknown position).

Since the role of death doulas has been established and recognized in European countries but is still emerging in Iran, its acceptance might be influenced by Iranian cultural norms and many other factors. The unfamiliarity of the term “doula” within Iranian culture, combined with the negative connotations associated with the word “death”, can create an adverse impression for listeners. Besides, the ambiguity surrounding this concept hinders its rapid and easy acceptance. Those attempting to introduce this role within the care system may find themselves entangled in a web of unanswered questions from service recipients.

In this context, Krawczyk et al. (2020) have argued that while there is widespread agreement on the importance of naming the role, there is also a wide range of perspectives on standardizing the terminology. Many doulas do not find the term “end-of-life doula” to be ideal. This is not solely due to cultural issues but also because of the general public’s limited understanding of the word “doula” and the power dynamics that standardizing names and practices entails. Among these terms, “end-of-life doula” and “death doula” are becoming the most common. They broadly encompass a specific range of supportive, emotional, and spiritual services provided before and after death, which can vary significantly across regions and countries. In a study by Rawlings, doulas mentioned that they act as additional support for dying patients and emphasized the need for public awareness of their role. They stressed that as a unified community, they must educate the public to enable informed decision-making [15].

The second challenge identified in this study was the lack of formal recognition of the doula role caused by “resistance from the care team” and “role ambiguity”. The unclear status of doulas in society can pose challenges to their role. Determining whether doulas are part of the public healthcare system or operate within private hospitals, palliative care centers, or hospices is crucial, as the designated status affects how services are delivered and how doula practices integrate into the country’s care system. The ambiguity regarding the status of doulas also impedes effective collaboration between care teams and doulas. For instance, physicians might be reluctant to refer patients to doulas, resulting in the lack of acceptance of doulas in healthcare teams and the continuation of futile treatments.

Consistent with these findings, a study conducted by Torki Harchegani et al. (2024), which aimed to identify the challenges associated with employing birth doulas in Iran, revealed significant psychological barriers. Midwives reported feeling that Birth Doulas were overstepping their boundaries and attempting to usurp the responsibilities of the midwifery staff. Specifically, delivery room midwives often perceived Birth Doulas as inefficient individuals incapable of assisting the treatment team [39]. Furthermore, the research by Azimi Lolaty and Rezaie Abhari documented role ambiguity concerning the duties of Birth Doulas as a major impediment cited by stakeholders. This lack of attention to their defined roles, coupled with their unspecified legal status, acted as a significant barrier to the effective performance of the birth doula role [40].

In line with this finding, Yoong et al. (2022) stated that the role of doulas remains unclear to both the general public and professionals, which may stem from the variations in doula roles across countries and settings. The failure to understand the role of death doulas can hinder their integration into palliative and EOL care services. Confusion about their role makes collaboration between clients and care team members with doulas challenging. Some doulas might even encounter hostility from medical teams during their service, due to concerns over overlapping roles, perceived threats, or the absence of official regulations governing doula practices. In some cases, doulas might face disregard [19]. In Rawlings’ study, many doulas expressed their desire to ensure that medical professionals did not perceive them as competitors or threats [16].

Krawczyk et al. also identified the integration of death doula’s activities within palliative care or hospice centers as a concern. They raised the challenge of aligning the services provided by doulas with those of these centers [38]. In a similar vein, Rawlings et al. noted that many movements related to EOL doulas today are focused on achieving public recognition and integration into healthcare [25].

Strengths and limitations of the study

The present study provided valuable new knowledge about healthcare team members’ perceptions of death doulas in Iran. As the first study of its kind, it explored the prerequisites and challenges associated with the role played by death doulas from the perspective of healthcare professionals. The findings from this study can contribute to the development of new attitudes and improvements in care practices within this field. However, the findings should be considered within the context of the existing limitations. While the data collected are significant, their generalizability is not assured. This limitation stems from our limited access to palliative care centers nationwide. Given that these centers have only been established for about a decade, the number of active professionals and staff remains insufficient. These limitations could lead to selection bias in participant recruitment for the study. Additionally, due to similarities in attitudes and policies related to palliative care, the diversity of viewpoints gathered may not be sufficiently broad. This issue may affect the interpretation and analysis of results and indicates the need for more extensive research in the future. Future studies should employ diverse approaches and a broader geographical range to gather data to achieve a more comprehensive and accurate understanding of the issue and contribute to the improvement of care policies and practices. Future research should extend this study to include additional participants, such as patients, family members of patients, and oncologists, in order to capture diverse perspectives across different contexts. This broader understanding can inform the development of practical efforts to support the implementation of death doula’s roles. Summarized based on the opinion of the second referee.

Implications for practice/research/education

Practice: Findings from this study could be used to initiate the role of death doulas as guides. Policymakers and planners, relying on identified needs and established infrastructures, can develop operational programs to implement this role. Taking into account the potential challenges identified in this study, they can formulate preventive strategies through collaborative deliberation among end-of-life care specialists.

Research: Based on the results of this study, subsequent complementary research can be designed qualitatively. By conducting interviews with death doulas, the perspectives of these practitioners regarding their most pressing needs for fulfilling their roles can be understood. Through a comparative study between the views of experts and those of death doulas, differences and similarities can be identified, and the findings from these studies can be applied in practice to improve the quality of role performance.

Education: Another application of the current study’s results lies in education. Educational planners can use the identified educational gaps from this study to develop the content of a death doula’s curriculum, thereby designing a comprehensive and practical program that supports death doulas in performing their roles effectively.