clinical focus
Bridging the gap
The presence of end-of-life
doulas is on the rise, but what do
they do and are they accredited?
By Conor Burke
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, a
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 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 doule – loosely
translated as female helper or slave – the
word ‘doula’ has been used clinically since
the late 1960s. It was originally coined
by medical anthropologists and is more
widely associated with a female caregiver
during pregnancy and childbirth, but
there is a growing number of doulas who
concern themselves with the end-of-life
process. This practice has its origins in
1980s America but is becoming popular
in Australia.
Like their birthing counterparts,
end-of-life doulas aim to accompany
their patients in a way in which medical
professionals perhaps are not able to.
Unlike palliative care professionals, doulas
do not provide clinical care. Instead, they
30 agedcareinsite.com.au
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 training for end-of-life doulas
(unlike birth doulas), and this is concerning
for some. Deb Rawlings, a 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
the evidence was, only to find that there
actually isn’t very much,” she says.
“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 a
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 asks.
“Hospitals have big volunteer programs.
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 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 an area in
which 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,” she says.
“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.”