Aged Care Insite Issue 92 | December 2015 - January 2016 | Page 27

clinical focus

A worsening burden
A bereaved carer’s emotional turmoil often
requires special support, but services frequently
aren’t prepared to give them what they need.
By Amie Larter

A

PhD candidate who worked as
a palliative care nurse for more
than 20 years is calling for more
support for bereaved caregivers.
Margaret Sealey, from Curtin University,
says about 1 in 10 bereaved caregivers
suffer more than most from the death of
a loved one; some are at greater risk of
suicide. They also have a higher rate of
hospitalisation, which can be a significant
cost to the healthcare system. Their
increased risk goes largely undetected, due
in part to ineffective assessment practices.
In a report published recently in BMC
Palliative Care, Sealey explores the barriers
to assessment of bereavement risk.
“I’ve moved from nursing to psychology,
so I know we do palliative care really, really
well for the dying patient,” she told Aged
Care Insite. “But for every person who dies,
there’s a whole raft of people who are
affected by grief.
“Within [the 10 per cent of caregivers
who are at greater risk], there are a lot of

factors. When the death comes along,
these people … have nothing left to go on
with. They tend to withdraw from people,
so [in some cases] nobody is checking
on them. They are not likely to go off and
decide, ‘I really need help with this.’ So,
we tend not to know what happens to [the
carers] after the death.”
Sealey says palliative care professionals –
particularly nurses – are in a unique position
to assess when further support is necessary.
“Normally, you don’t have grief until
you have death,” she explains. “[People]
working in palliative care … have got people
they know are going to be bereaved,
and they are already going through a grief
process. For that reason, I think palliative
care is well-situated to identify [those at
most risk] and make sure they are hooked
up with somebody [for further support].”
Even from their unique position,
the Curtin research team has found,
palliative care workers still face barriers to
performing effective assessments. Among

those is what Sealey describes as the
“old medical model of thinking”, in which
everything needs to be fixed.
“When it comes to emotional stuff, you
can’t observe it and then take action on
it,” she says. “We are used to that medical
thinking – ‘Oh, she’s crying, she’s grieving,
she needs support.’ I know [nurses] are
well-intentioned, but … the fact is they
aren’t looking after [these bereaved
caregivers] because they are just too
busy. They are focused on the care of
the patient, which is what they should be
doing.” She argues that management could
assist by building a strong database of
referral and support information.
Another major obstacle is the carer
is generally not a client, as they’re not
the patient.
“If the [nurses make a note about the
caregiver], for example, where are they
going to file it?” Sealey questions. “It
technically shouldn’t go into a patient’s
notes, it doesn’t belong to the patient. It’s
[the caregiver’s], but they’re not a client.”
Caregivers in the Curtin study reported
feeling as though they had slipped through
the cracks. They were accessing a wide
range of services and did not know which
one could provide them bereavement care.
One bereaved caregiver describes
the experience in the report.
“I do believe that ‘slipping through the
system’ unfortunately happens a lot,”
the caregiver says. “I wasn’t in a system
where someone phoned me. I as the carer
needed help. I didn’t know where to go.”
In determining the best way forward,
existing models were found to be
unsuitable for use within palliative care.
The report argues that a new measure is
needed. It states that nursing staff say the
most effective time to assess bereavement
risk is during the pre-death period, as
caregivers are still in contact with staff,
which is often not easy post-death.
Sealey confirms that nurses trialling this
method report that staff meetings are a lot
quicker, as they knew exactly how to offer
support to at-risk caregivers.
“It frees up nursing staff to do their patient
care and they’re not worried. [Without
assessments] there is this underlying worry
all the time, this gut feeling.
“For management to have a healthier,
happier, less-stressed workforce is a whole
lot better,” she says. “Not that I’ve looked
at that in my study, but I think it would
decrease the chances of burn out if staff
have got a bit more time … to have their
emotional focus on what they need to do,
instead of worrying about carers.” ■
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