“I was in a palliative care ward here in Sydney, and there were two nurses on a ward of 16 people who had four people actively dying, one of which was our person. Our person was really scared of being alone,” recounts Helen Callanan, professional end of life doula.
“So, we made a roster of all of the family and friends who were willing, and that person had someone with them 24/7, and as it turned out, they had a very, very difficult death. It was seven days and nights, and the staff came up and apologised and thanked us, because we made their world a bit easier by bridging that gap.”
Derived from the Greek word doulé – and loosely translated as female helper, servant women or female slave – the word doula has been used clinically since the late 1960s. Originally coined by medical anthropologists and more widely associated with a female caregiver during pregnancy and childbirth, there has been a growing number of doulas who concern themselves with the end of life process.
Like their birthing counterparts, end of life doulas aim to accompany those facing death in a way in which, perhaps, medical professionals are not able to. This practice has its origins in 1980s America but is becoming increasingly popular here in Australia.
Unlike palliative care professionals, doulas do not provide clinical care but seek to fill in any gaps that may occur, be it spiritual and/or mental support, listening to the concerns of the family, taking on bureaucratic tasks or just providing company for the patient. Importantly for the doulas, it is a mode of care that is controlled by the dying person.
However, as yet there is no formal accredited end of life doula training (unlike birth doulas) and this is a cause of concern for some. Deb Rawlings, lecturer and researcher from Flinders University, recently conducted research into the area and found the lack of certainty in the area troubling.
“In 2017, we started the process of looking to the formal literature to see what’s the evidence, only to find that there actually isn’t very much,” she said. “For example, there is education. It could be something like a half-day course on a weekend, or it could be something more rigorous: two, three, four days, and follow-up study day. But it’s not consistent. So, someone could do a half-day weekend and set themselves up as a death doula.
“There’s also no regulation, so no oversight. Some of the death doulas will work with their training organisations and have some… probably not supervision, necessarily, but some support and maybe some ongoing training. But others won’t, necessarily. They’ll be working completely independently.”
Another area Rawlings sees as contentious is the business model. “What’s the different between a death doula who doesn’t charge money and a volunteer?” she asked.
“Hospitals have big volunteer programmes. Hospices certainly do, and they have really comprehensive quality of services and training support that goes with that. How is that different from some of what we understand death doulas are offering?
“I don’t know. And if you’re charging, as a death doula, for your services, and I know some of the death doulas themselves do have some issues about that… I think they’re in a difficult space. They sit sort of betwixt and between.”
However, as patients move in and out of hospices and in and out of hospitals, or move into residential age care facilities, they lose a lot of consistency in starting new health relationships. And Rawlings believes the length of relationships that health professionals can provide are short and can lack depth, as time and staffing constraints often dictate. She believes this is as an area where some form of continued counsel is helpful for patients.
End of life doula and former palliative care enrolled nurse Kim Sommerville sees the role as an essential one, complementary to palliative care.
“For me, I just see it as another layer of support, just complementing the existing system already, but more so [the role involves] having those conversations with people about imminent death, helping them prepare for it and feel more educated and empowered if they want to have someone die at home, and being able to cope with that rather than having to access external services that can often be quite limited.
“I think it’s just educating people about their options at end of life and letting them know what is available. Just a support person. That’s how I feel about it.”
Sommerville has found that the tasks undertaken can vary from patient to patient and doula to doula, whatever the patient needs them to be. And to the question of accreditation, she sees it as when, not if.
“I feel like it will be integrated into our healthcare system eventually. I’m totally okay with seeing it as a business because it is a service that is needed. Everyone that I’ve spoken to and talk about it, the feedback has all been the same. Like, I wish we knew that this existed. I would love to have had someone for my family member.'”
Helen Callanan is the founder of Preparing the Way, a doula training scheme aligned with and delivered through the Australian Doula College, the only government accredited Cert IV in birth doula services.
A former natural therapist with a degree in Chinese medicine, Callanan regularly found herself dealing with death as many of her clients were terminally ill and dying. She found herself naturally spending time in hospitals with these clients and with the families starting to “do the work of a doula without even knowing that there was such a damn thing”.
It was caring for her parents and guiding them in the final months of their lives that cemented the idea that there needed to be an extra element of care at the end of life, and led Callanan to design the training.
“I met Renee Adair along the way. She’s the founder and director of the Australian Doula College and we had become friends and she said ‘Helen, there’s nothing really out there that’s written for the doulas. We need training for the doulas, as in the birth doulas, because they’re encountering death, unfortunately, at different times’.
“So I collaborated with a woman who used to write programs for TAFE and was part of their accreditation team. We both went and did a Cert IV in Training and Assessment so we could write the course at an accreditable level. I debriefed every death I’ve ever been a part of. We pulled those apart, and the mistakes I’ve made, and things I’d learned, and resources I’d found, and all of that. And we created the pilots back in 2015.”
Callanan hopes to use the birthing doula scheme as a blueprint for the end of life training.
“Together we are looking at accreditation in 2019, for end of life doula services. Conversations have begun about creating a proper association. So there would be a governing body and there’d be a code of conduct and ethics,” she said.
In that search for professional recognition, Callanan stresses the need for collaboration with the current palliative care professional.
“What I would really love to see underlined is the deep experience that people bring to this role, that they’re not looking to get in the way. They’re looking to work in collaboration, to bridge the gaps,” she said.
“We want to work alongside them, with them, not instead of them. I can’t do my job without good palliative care.”Do you have an idea for a story?
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