https://orcid.org/0000-0002-8998-9403
Abstract
The role of the death doula became apparent during the first Dying2Learn Massive Open Online Course in 2016. A death doula is a non-medical guide and advocate, who provides information and support for the dying and their family. The aim of this study was to understand Dying2Learn health care professionals’ perceptions of the death doula role. In week one of Dying2Learn, we asked whether the participants had an experience with a death doula and to share that experience. Of the n = 671 participants who responded to this activity, n = 317 identified as having a health care professional background, with these data extracted, analysed, and reported on. Nine themes were derived from the qualitative analysis: (1) not heard of the death doula role; (2) no experience with a death doula; (3) the role is beneficial; (4) has practiced as a death doula or has an interest in pursuing the role; (5) has heard of a death doula; (6) has had personal or professional experience with a death doula; (7) interested to learn more about the role; (8) the role overlaps with/is similar to those of other health/community roles and their own role incorporates death doula practices; (9) unsure about the role. Almost half of the respondents had not heard of the death doula role. Of those who had, those who work in hospice or specialist palliative care are more likely to have heard of the role and to want the role to be more well-known and to grow, acknowledging the potential in extra support for families when someone is dying. Some respondents had concerns, including the potential costs to the family of engaging a death doula and the fact that there was potential role overlap between death doulas and some health care professions.
Introduction
The Dying2Learn Massive Open Online Course (MOOC) was offered four times,Citation1 aimed at the general public as a way of having conversations around death and dying, encouraging a more death literate society, and promoting death as a normal part of life.Citation1 The Dying2Learn MOOCs provided unique opportunities in engaging over 5000 participants in important conversations, in providing information, and in undertaking evaluation and both formal and incidental research.Citation2 Within the initial 2016 Dying2Learn MOOC, we learnt of the death doula (DD), someone, usually a woman, who works as a non-medical guide and advocate for the dying and their family.Citation3–5 DDs are usually autonomous, working at the direction of families, describing their work in terms of companionship, being a compassionate presence, enacting pre- and post-death rituals, and helping with end-of-life planning.Citation4,Citation6–9 Since the initial Dying2Learn MOOC, the authors/researchers have been engaged extensively in research on the DD role.
In each Dying2Learn MOOC, voluntary activities were provided for participants, and in 2020 we invited comments on the DD role. From the data we initially completed a study looking at the views of the role from the perspective of the general public. Overall results were that participants felt value in such a supportive role, finding it important for individuals and society.Citation9 However, in each MOOC, despite promoting the course as not including information on palliative care or care of the dying, the numbers of those with a health professional background dominated. Therefore, the aim of this study was to understand the perceptions of Health Care Professionals (HCP)s about the role of DD, valuable in that they may interact with DDs during the provision of care to clients.
Methods
In the introductory week of the 2020 Dying2Learn MOOC, we described the role of a DD, including a video of a DD talking about the role. Following this, in a week 1 activity, we asked the following question: Have you had an experience with a DD? Please share your experience/knowledge on DDs in the comments below. A total of 1400 participants were enrolled in the 2020 MOOC with n = 671 participating in this activity. Of the n = 671, n = 317 were identified as having an HCP background and results from this sub-sample were included in this current study. As perceptions may vary based on the setting in which the HCP works (such as specialist palliative care or hospital) we analysed data based on this.
Ethical considerations
Ethical approval was obtained from the Flinders University Research Ethics Committee (Project: 7933). Approval specifically included the analysis of de-identified comments made in the MOOC. Participation was voluntary.
Data handling and analysis
Data handling and analysis were the same for this cohort as for the non-HCP cohort of participants.Citation9 A research assistant was provided with cleaned and de-identified data and was responsible for data analysis. The NVivo software package was used and each statement (anything from a short sentence to a paragraph in length) was considered an open-ended response and potentially assigned multiple coding labels when deconstructed.Citation9 Thirteen themes were derived via thematic analysis followed by discussions between the Research Assistant (RA) and the lead researcher (DR with four themes then merged. The nine remaining themes were then reviewed and confirmed by researchers LML and JT.
Results
Respondent demographics
Respondents to this activity (n = 317) ranged in age from 18 to 75 years with an average age of 47.81 years (4 invalid responses) (). They were mostly female (93.38%), from Australia (94.02%), and university educated (74.76%). Of the n = 317 respondents, n = 201 had cared for someone with a terminal illness in their personal life (63.41%), and unsurprisingly an overwhelming majority (n = 293) said that they had cared for someone with a terminal illness in their professional life (92.43%). Interestingly n = 7 were unsure (2.21%). All 100% reported that they were currently working as an HCP. The overall demographic characteristics were similar to those of previous Dying2Learn MOOC offerings.Citation1
Table 1 Respondent demographics
Just over half of the sample identified themselves as nurses (52.36%), followed by similar proportions of aged care workers and allied health professionals (AHPs) (19.56 and 18.93%, respectively). The HCP respondents worked in four main care settings, with residential aged care (RAC) being the most common (29.97%), followed by hospitals (23.03%), primary care/community (PC/Comm) (21.77%), and hospice/specialist palliative care (H/SPC) (13.88%).
‘Other’ category
There were n = 25 participants who declared their profession as ‘other’. We did not ask for more information on their profession if they said ‘other’ but we did ask about their workplace with some working in PC/Comm (n = 6), some in RAC (n = 4) some in H/SPC (n = 3). Of these, a further group (n = 12) were working in ‘other’ settings. Of those in the latter group, two had undertaken DD training whereas the others in this ‘other profession’ group had not heard of the role nor had any experience with it. This did not provide much clarity as while we can say that these two participants had undertaken DD training, we cannot say whether they are working as DDs (part-time or full-time). In fact, we are unable to say whether any other participant works part-time as a DD.
There was n = 35 participants who declared their workplace as ‘other setting’. Here we could see their profession which included RAC workers (n = 4), AHPs (n = 13), doctors (n = 1), nurses (n = 5), and ‘other’ (n = 12). Of these declaring an ‘other’ profession, only n = 2 identified as having undertaken DD training (the same two as above). However, it is interesting to note that those HCPs in the ‘other’ category were more likely to have practiced as a DD (or have a personal interest in pursuing it), to want to know more, to want the DD role to grow and be more well-known and to view the role as beneficial (important, helpful, supportive).
Themes
Overall, nine themes were derived from the qualitative analysis. Some participant quotes included all, or parts of a theme and others did not (so numbers will not tally).
Theme 1: Not heard of the DD role before. Of all professionals in all settings n = 133 (42.00%) had not heard of the role. DDs may also be working exclusively (in a non-medical role) in social arenas and not come across the radar of many HCPs. Unsurprisingly there was also a lower level of knowledge about the DD role in the non-HCP sample.
Theme 2: No experience/have not worked with a DD. One-third of all participants specifically mentioned that they had no experience of a DD, nor worked with a DD whereas the other two-thirds did not address this particular issue of working with a DD. This may have been in addition to saying that they had not heard of a DD.
Theme 3: The DD role is beneficial (important/helpful/offering good support) or wants the DD role/service to grow (be more well-known). Again, one-third of participants thought that the role was beneficial and saw a place for it in future health care arenas.
Theme 4: Has practiced as a DD or has a personal interest in pursuing a DD role. This theme captured those comments where the HCP was specifically interested in pursuing the DD role/training. A few HCPs had either undergone DD training or had practiced as DDs.
In each MOOC offering, there has been a lot of interest in the DD role by those who are familiar with the role, by those who have heard of it but no little more than that, and by those who have heared of it for the first time. There have been DDs participating in each MOOC, some of whom have worked in the role and spoken of aspects of their work, while others have undergone training but never practiced. This MOOC was no different. Of those who responded to this activity, on further analysis there were: n = 19 (6.0%) who were a DD or who were investigating the role and n = 22 (6.9%) who said that they would be interested in finding out more about the role (Themes 4 & 7). These participants worked across all professions and all settings, representing 12.9% (n = 41) of the cohort and demonstrated how the role (or the idea of the role) really speaks to HCPs across the board. Interestingly very few participants (3.2% overall) were unsure about the role or had concerns (theme 9)
Theme 5: Had previously heard of the DD role. Only 19% had heard previously of a DD. Again this speaks to the lack of knowledge of the role even in cohorts where they care for dying people, although arguably not all HCPS are aware that they are caring for the dying if working in care settings outside of palliative care.Citation10
Theme 6: Has had personal or professional experience with a DD. This accounted for only 5% of participants.
Theme 7: Interested to learn more about the DD role (see also theme 4). This theme captured a general interest in learning more about the DD role. Often these comments were made by HCPs who had never heard of the DD role before.
Theme 8: DD role overlaps with/is similar to those of other health/community roles and their own role incorporates DD practices. In comparison with the themes described from the non-HCP respondents there were similarities in that respondents in that cohort also felt that there were similarities in DD work to HCP roles.Citation9
Theme 9: Unsure or has concerns about the DD role/practice. Only 10 participants had some concerns about the role. These views were being unsure whether they would personally use a DD; having a negative experience with a DD; being uncomfortable with the concept (as an SPC nurse); being uncomfortable with non-medical roles advocating for clients; and with (n = 6) mentioning the potential costs to the family of engaging a DD. One participant spoke of the emergence of the DD role in terms of a failure of palliative care to provide for the needs of the dying. Themes by workplace and profession are shown in with exemplar quotes.
Table 2 Themes by workplace and profession
Discussion
Over two-thirds of participants in each of the four MOOCs declared an HCP background. This was perhaps due to the popularity in Australia at least, of the project that hosted each MOOC – CareSearch, an evidence-based palliative care website (www.caresearch.com.au). There was an initial perception by the MOOC authors/researchers that these HCPs were likely seeking palliative care courses or information on care of the dying. However, very few withdrew, and in fact went on to participate as themselves, with comments relevant to their own life rather than their perspective as a doctor or nurse, speaking to the need of HCPs to engage in these types of conversations.Citation1
Of this HCP cohort, almost half had not heard of the DD role, and one-third had no experience of working with a DD. The number of DDs working in Australia (the participants were almost exclusively Australian) is largely unknown with only a handful of DD training organisations in the country potentially training only a few hundred DDs annually, although recognising that other countries offer online training.Citation11 The number of practicing DDs may be less than anticipated with many only working part-time in that role. It is also unknown in what capacity they are working, which is likely to be acting in a private capacity for a family in a role similar to that of ‘eldest daughter’.Citation3
In the previous MOOCs, there have been those who are working as a DD, those interested in becoming a DD, and those training to be a DD, and the 2020 Dying2Learn MOOC was no different. It is unsurprising then that one-third of participants felt that there was value in having such a role (mirrored by the non-HCP cohort) or want it to grow and be well-known. The unrelenting pressure on those caring for the dying will be known to these HCPs so they will likely see the potential for extra support for families at this time.Citation12 Some participants had concerns about the role. Of these perspectives, the potential costs to the family of engaging a DD were most cited. The financial implications of dying cannot be overestimated,Citation13 so the added cost of a DD for days, weeks, or months would only be available to some families raising issues of equity. Also to note was theme eight whereby concerns regarding role overlap were raised.
In considering the setting in which participants worked there were conclusions to be drawn. Respondents who worked in RAC were more likely never to have heard of the DD role and those who work in a hospital setting were more likely to have concerns about the role. For those respondents who work in PC/Comm they were more likely never to have worked with a DD, to feel that their own role incorporates DD work, to view the DD role as beneficial, important, and supportive and to want to learn more about the role. Those who work in H/SPC settings are more likely to have previously heard of the role, to want the role to be more well-known and to grow, and also felt that the DD role overlaps with HCP roles. Those participants who work in other settings are more likely to have practiced as a DD (although arguably these numbers are low), or have a personal interest in pursuing the role, as well as having a personal or professional experience with a DD.
In considering the influence of profession, nurses were more likely to feel that their role incorporates DD practices and to have concerns about the DD role (although both have low numbers). Aged care workers were more likely never to have heard of DD nor worked with a DD although responses showed that some of these workers see a role for DDs in aged care. AHPs were more likely to have a personal or professional experience with a DD, but to also feel that the DD role overlaps with other health or community roles, akin to a theme from the non-HCP respondents.Citation9
Role overlap has been a recurring theme in our research,Citation3,Citation14,Citation15 with no solution yet offered. DDs enact various roles at the direction of clients and as one participant said:
I learn that there is no set ‘template’ or ‘model’ for how to ‘be’ a Doula. Rather, it seems that, in the Doula role, it is incumbent upon us to adapt and roll along with the very individual nature of the person and his/her circumstances; to companion; to share; to guide; to educate; to support however the individual person deems it to be so.
While very few participants raised concerns about the role, some did comment that a DD was something that not all could afford. This also resonated with the non-HCP cohort, with conflicting views on whether DDs should be paid. DDs themselves struggle with this, with some DDs providing their services voluntarily, some charging for some aspects of their work (i.e. visits not phone calls) and many offering sliding scale fees for those who cannot afford it.Citation16 Many DDs would like to work in the role full-time but struggle to come to terms with a fee-for-service model or how to transition from their existing role to full-time DD (perhaps because of the piecemeal nature of DD work). Others are very sure that people pay for counselling or massage services so charging money for DD work is morally just.
A concept that has been noted previously,Citation3,Citation16 was raised by three respondents who thought that the role would be ideal for those without a family. This has connotations of the ‘No one dies alone’ project implemented globally in consideration of those without family or support networks.Citation17 Certainly, one respondent in aged care noted that a DD would be great if there was no family or friends or arguably any social network. In tandem is the concept of advocacy, noting that navigating health care systems and services (including aged care) at the end of life is really complicated. Outside of specialist palliative care, there has been an evolving interest in the compassionate communities’ movement,Citation18,Citation19 and in navigator roles,Citation20 all of which help to make health care more accessible.
Strengths and limitations
The strength of this paper lies in the fact that an opportunity was provided to elicit the view of HCPs on the DD role – something not studied before. However, there are limitations to this study. It is important to note that two-thirds of the participants had cared for someone who was dying personally, and nearly all had cared for someone professionally. This indicated great familiarity with the care and support required by those who are caring for the dying, which may account for many of the positive comments about the DD role. To note is that the Dying2Learn participants were a very specific cohort, overrepresented with educated women, mostly nurses, and their views may not represent those of all HCPs. To also consider is that the conversations held in the MOOC were viewed and contributed to by all participants so views from the previous non-HCP cohort may have influenced HCP views and vice versa, possibly accounting for similar themes in both studies. It is possible that some HCPs may also practice as a DD which would also provide a positive lens on the role. Also note is that those who did not respond may have views that differ from those who did.
Conclusion
The DD role captured the attention of Dying2Learn MOOC participants with great interest shown in the DD role by this HCP cohort. Many were interested in finding out more about the role and felt that it should grow and be more well-known. As the majority of HCPs had worked with someone who is dying, they were aware of how a support person in the form of a DD would be helpful in navigating services, the dying process, and events after a death.
Disclaimer statements
Contributors None.
Funding CareSearch (and the Dying2Learn MOOC) is funded by the Australian Government Department of Health.
Conflicts of interest None.
Ethics approval None.
Acknowledgements
We would like to thank the Dying2Learn 2020 MOOC participants, as well as Mrs Megan Winsall for assistance with data analysis.
Data availability statement
The data that support the findings of this study are available from the corresponding author, [DR], upon reasonable request.
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