Australia’s “death doulas” are taking the first steps towards becoming an incorporated national body and hope to gain accreditation over the next year, as they seek an established role in the palliative care process.
A recent Australian report in the current issue of the journal Health and Social Care in the Community found that the death doula is emerging as a new role in the end-of-life care space.
The death doula has been described as an “eldest daughter”, or a “paraprofessional” who can fill a gap in the often highly medicalised palliative process as a guide, support, companion and advocate for the dying person and their carers.
Current health and social care systems don’t always meet the needs of the dying in their communities, the researchers found, and as a result “patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care”.
However the research team, led by Deborah Rawlings of the College of Nursing and Health Services Flinders University, found a lack of information when it came to issues like specific services provided by doulas, funding, training, licensing and where they fit in with health services.
Rawlings says at present death doulas may represent a new direction for personalised care, an adjunct to existing services or an unregulated form of care provision that’s able to operate without oversight.
“I think it’s a great role but I think there’s still a lot of inquiry to be made,” she told Community Care Review. “There’s still so much more work to be done to see how this fits into end of life care.”
‘Bridging a gap’
Helen Callanan leads the death doula course for the Australia Doula College, one of a handful organisations and individuals that provide training and advocacy.
However she prefers to refer to herself as an “end-of-life doula”, saying death is a moment, but end-of life-is a journey with many stages from diagnosis, to death and bereavement.
The college offers two courses. A one day course covers topics including preparing for death and planning for what happens afterwards, care of the living, the role of a doula and general “death literacy”.
Participants can choose to follow up with a three day course which drills down deeper and considers issues like pain and suffering as well as how to build a business as a doula. The course is non-medical and no prior experience is required.
Callanan says demand for the courses is huge, with “several hundred people a year” doing the one-day workshop and about half continuing on to the longer course. Some of these may be hoping to establish a career as a doula while others may simply want to care for someone in their family.
Once training is completed participants can apply to become members of the Australian Doula College, which offers an agency to help them find work and a fee structure.
Seeking a unified voice
Callanan says while the end-of-life doula role is well established in the UK, US and Canada it is continuing to emerge in Australia and “we’re starting to have conversations with aged care facilities and hospitals”.
“Doulas bridge a gap in care provision and provide continuity of care because they can be there through diagnosis all the way through, right up to and after bereavement,” she told Community Care Review.
“We need the medical people along the way, they have to be part of the journey. But when treatment stops they drop off.
“You need to have someone as a companion, as a doula you can say ‘I’ve got your back, I’m not going to lead or direct or advise. I’m going to look at options with you and support you with the fulfilment of yours’.”
Callanan says unlike birth doulas there is currently no certified training for death doulas, but they hope to gain accreditation from the Australian Skills Quality Agency in 2019.
A meeting of Australian doula organisations and other stakeholders will also be held over the next month to discuss forming an incorporated national association.
“Doulas really need to have a unified voice,” Callanan says. “We have developed and are delivering professional training and that’s why we’re looking to get accredited – so we get taken seriously and get a seat at the table along with palliative care, because we’re all on the one team and together we can do a better job”.
Palliative care peak not convinced
A spokesperson Palliative Care Australia, the nation’s peak palliative care organisation, wasn’t immediately available to comment.
However, CEO of Palliative Care South East in Victoria Molly Carlisle has previously expressed concern about the emergence of death doulas.
In a 2016 article posted on the professional social networking site LinkedIn.com Ms Carlisle questioned “this influx of people, charging a fee to care for people at the end of their life, who have no qualifications (apart from weekend workshops conducted by other people who have no qualifications)”, saying they could pose a risk to themselves and others.
“People who have undertaken a two or three day workshop can not provide “care and guidance” for dying people and their families,” she wrote.
“It takes years of academic training, clinical practice underpinned by mentoring and supervision to holistically accompany a dying person and their family through the challenges of confronting the end of their life.”
Rawlings described the move towards accreditation as a positive step.
She is currently following up her research with a survey of 90 Australian death doulas, including 20 interviews, and the data will be analysed and hopefully published next year.