Death doulas are becoming increasingly popular in Australia – so what exactly do they do?
Because theirs is only an emerging field, roles and what we can expect from people who define themselves as ‘death doulas’ can vary.
But what is becoming increasingly clear is that more and more people are turning to them at the end of life of their family members. And the official world of medicine and palliative care is starting to take notice.
“Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of “an eldest daughter” or to a role that has similarities to specialist palliative care nurses,” Deb Rawlings of End of Life Essentials explained in What role do Death Doulas play in end‐of‐life care? A systematic review, a paper which she and her team published in 2018.
This was one of the “Top Downloaded Papers for 2018-2019 in Health & Social Care in the Community,” Deb noted on her LinkedIn site recently.
But something exciting from the point of view of empowering ordinary everyday people like you and me, the authors said: “Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.”
Yes, this suggests the field needs to be regulated and might only at best complement existing services but it also signals the idea of giving more control to the dying person.
After that paper was published, the same team surveyed death doulas themselves about their role, for a paper called The Voices of Death Doulas About Their Role in End-Of-Life Care, published in 2020. https://pubmed.ncbi.nlm.nih.gov/31448464/
In that paper they said: “Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life.
“They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don’t have responsibility for.”
In other words, this new person at the bedside of the dying is fulfilling roles that others can’t for a range of reasons, including time pressures.
They note in this paper that: “the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.”
But this is something we are sure will improve and fix itself as the area of skill develops.
Dying2Learn recently highlighted the work of death doulas, re-promoting a story produced by the ABC in 2019. It can be found at:
Death doula Helen Callanan was interviewed three years ago for Dying to Know Day, an annual event held to try to improve ‘death literacy’ in our culture.
“We plan our births, we plan our weddings, we plan our retirement, but we don’t plan our end of life,” says Helen Callanan in the video.
She says it as a question, as in: “why not?”
Her interview and the terrific, common sense discussion around it can be found at: