‘I’m very interested in learning more’: What health care professionals in the Dying2Learn Massive Open Online Course think of the death doula role

Figures & data

Table 1 Respondent demographics

Demographic characteristics of respondents (n = 317)
		n	%
Gender	Female	296	93.38%
	Male	16	5.05%
	Prefer not to say	4	1.26%
	Other	1	0.31%
Geographic location	Australia	298	94.02%
	New Zealand	17	5.36%
	Canada	1	0.31%
	Scotland	1	0.31%
Education	Some high school	10	3.15%
	Completed high school	25	7.89%
	Trade school or equivalent	45	14.20%
	University	237	74.76%
Carer personally	Yes	201	63.41%
	No	107	33.75%
	Unsure	9	2.84%
Carer professionally	Yes	293	92.43%
	No	17	5.36%
	Unsure	7	2.21%
Are/were a HCP	Yes	317	100%
	No (excluded from analysis)	0
HCP role	Nurse	166	52.36%
	Aged Care	62	19.56%
	Allied health professional (AHP)	60	18.93%
	Doctor	4	1.26%
	Other	25	7.89%
Workplace setting	Hospice/specialist palliative care (H/SPC)	44	13.88%
	Hospital	73	23.03%
	Primary care/community (PC/Comm)	69	21.77%
	Residential aged care (RAC)	95	29.97%
	Other setting	35	11.04%
	N/A	1	0.31%

Table 2 Themes by workplace and profession

Theme		Counts	Exemplar comment
1	Not heard of the DD role before	Of all professionals in all settings n = 133 (42.00%) had not heard of the role. The majority were aged care workers (n = 29/46.8%) and work in RAC (n = 51 / 53.7%).	‘I have never heard of a death doula. They would be a great support though if there was no family or friends’ (Aged care worker, RAC)
2	No experience/have not worked with a DD	Of all professionals in all settings n = 97 (30.6%) had not worked with a DD. Of these, the majority were aged care workers (n = 23 / 37.1%) and work in PC/Comm (39.1% / n = 27).	‘I have not experienced death doulas before, although I love the concept. You are guided into this world, why not have support t (sic) be guided out’ (Nurse, hospital) ‘I haven't dealt with a death doula but love the idea that one is available’ (Aged care worker, PC/Comm)
3	Wants the DD role to grow/be more well-known as it is beneficial/important	Of all professionals in all settings n = 99 (31.3%) viewed the DD role as beneficial, important, and a good support. Of these, the majority were Doctors (3 out of 4 / 75.0%) followed by ‘other’ health professionals (n = 9 / 36.0%) and work in H/SPC (n = 12, 47.8%).	[…] ‘I see it as such a unique role and one I hope grows and becomes utilised over time’ (Nurse, H/SPC) ‘I have worked in aged care & disabilty for the past 15 years and never heard of one or even come across a provider of. Would love to see more awareness about doula and where participants can access’ (Aged care worker, PC/Comm) ‘I had never heard of a death Doula before this course. I do believe and hope that the service they provide will become more well known heading into the future’ (Nurse, H/SPC)
4	Has practiced as a DD, or has personal interest in pursuing the DD role	Of all professionals in all settings n = 19 (6.0%) practiced as a DD or have interest in pursuing the role. Of these, the majority were ‘other’ health professionals (n = 4 / 16.0%) and work in ‘other setting’ (n = 6 / 17.1%).	‘In my own experience as an End Of Life Doula, I have acted both professionally and personally in this role […]’ (Nurse, hospital) ‘I would love to work as a death doula in the future – combining my nursing experience and knowledge with the support role’ (Nurse, PC/Comm)
5	Had previously heard of DD role	Of all professionals in all settings n = 60 (18.9%) explicitly mentioned that they had heard of a DD. Of these, the majority were ‘other’ health professionals (n = 6 / 24.0%) and work in H/SPC (27.3% / n = 12)	‘Had heard of a death doula but have never heard of anyone who has used one’ (Nurse, H/SPC) ‘I have heard of the term Death Doula but I have no personal experience’ (Nurse, RAC)
6	Has had personal or professional experience with a DD	Of all professionals in all settings n = 17 (5.4%) had experiences. Of these, the majority were doctors (1 out of 4 / 25%) followed by AHPs (n = 6 / 10.0%) The majority work in ‘other setting’ (n = 4 / 11.4%)	‘We have used them in my health care setting, with good effect’ (Nurse, hospital) […] ‘I have however had professional involvement with death doulas and their involvement through end of life care journey is enriching not only for the individual but for the entire family and health care team’ (Nurse, other setting) ‘I have volunteered and worked professionally alongside some wonderful death doulas and really value their skills. However, with some (not all!) courses being very expensive and hard to access, it runs the risk of making another level of ‘expertosis’ – like the health professionals have done – which can disempower families who are doing really well and then feel they need to call I am ‘expert’. But I have to stress that the vast majority of lovely doulas that I have met come from a loved experience background and are about supporting the families and staying in the background’ (Doctor, PC/Comm) ‘The death doula was no good. She went home for dinner and never came back. Said it was too much for her’ (Nurse, RAC)
7	Interested to learn more about the DD role	Of all professionals in all settings n = 31 (9.8%) wanted to learn more. Of these, the majority were aged care workers (n = 7 / 11.3%) and work in PC/Comm (n = 10, 14.5%)	‘I had never heard of a Death Doula before tonight. I plan on investigating further’ (Nurse, hospice specialist palliative care)
			‘I have only heard about their roles but am very interested in learning more’ (Nurse, PC/Comm)
8	DD role overlaps with/is similar to those of other health/community roles. Their own role incorporates DD practices	Of all professionals in all settings n = 22 (6.9%) described similarities. Of these, the majority were aged care workers (n = 5 / 8.1%) and work in PC/Comm (n = 8, 11.6%)	[..] ‘ I'd be interested to understand more about death doulas and how their support may be different to the psychosocial support delivered by social workers at end of life. I appreciate there must be differences but it sounds like advocacy is a common element with the two’ (AH, PC/Comm)
			‘this is the first time i have heard of a death doula. i feel like in a way nurses are able to incorporate this into their pratice (sic) though’ (Nurse, hospital)
			‘Not used the name doula but feel it overlaps and encompasses counsellors, bereavement services and palliative care workers’ (Nurse, PC/Comm)
			‘I haven't come across the term. In the faith communities I've been involved with, a similar function has been performed by clergy, fellowship elders, compassionate friends and different permutations of these’ (Other, RAC)
			‘Because I work in palliative care I am interested in how the roles of death doula compliment or double up in caring for the dying? Is there a place for death doulas in the palliative care service sector?’ (AH, H/SPC)
9	Unsure or has concerns about the DD role/practice	Of all professionals in all settings n = 10 (3.2%) were unsure about the role. Of these, the majority were doctors (2 out of 4 / 50.0%) followed by nurses (n = 6 / 3.6%) and work in hospital (n = 4, 5.5%)	‘am unsure if I would personally use a death Doula until I had more information and feedback. However would be open to talking about this service to others who express a need for support’ (Nurse, hospital)
			‘undecided … .on one hand I love the idea and see so many ways it could be of benefit to the dying person and support circle. However, on the other hand, the reason they are needed or have evolved is due to a failure within the public health system … .unacceptable in itself for those who are desperate for help and guidance’ (Nurse, hospital)
			‘I think it is a wonderful role – I wonder what the charges are??? a one off fee or paid by the hour etc etc??? and if only those with financial means would be able to to engage with/employ a death doula?’ (Nurse, H/SPC)
			‘I have heard of a death doulas, but I have to say that I feel uncomfortable with the concept – it confuses me that I feel this way as I would like everyone to be supported at time of death. I think that the role makes me feel a little like I may have failed at my job. As a palliative care nurse I want people, (patients and families), to be as well supported and educated as they possibly can be. My initial feeling is that I have spent a lifetime getting qualifications and experience in death and dying, and if a person who is compassionate but untrained, is required to additionally care for these patients, then what am I doing wrong, and what is my organisation doing wrong? I would be interested to understand the training and remuneration that death doulas receive and how they fit into our very complex and regulated care system’ (Nurse/hospital)

Data availability statement

The data that support the findings of this study are available from the corresponding author, [DR], upon reasonable request.