industry & reform
Facing up to death
Breaking the barriers between
aged and palliative care
in advanced old age.
By Michael Fine
D
eath remains the inevitable conclusion to the lives of all
of those who reach advanced old age. And despite all the
advances of modern medicine, it also continues to end
the life of those who won’t ever get to grow old.
Slowly it is dawning on the Australian community that
care is needed at the end of life. One of the most profound
developments in aged care in Australia in recent years, in
consequence, is the recognition at last that ageing and death are
closely linked.
The link between ageing and death is not mentioned in the
Aged Care Act (1997) or in any of its subsequent amendments.
Nor has there been a policy announcement about initiatives or
funding under the Act, to my knowledge. But it has been the
subject of discussion at the current aged care royal commission.
You can also read of its official recognition in Australian policy
if you go to the My Aged Care website. There, under the link
‘Planning ahead’, you’ll find a list of resources concerned with
what they term ‘end of life care’.
A range of links are available to provide more information on
such things as resources, contacts and how such matters as pain
management are incorporated into a care plan. The links cover
issues from advanced care planning to palliative care, from end of
life care at home, to end of life care in aged care homes.
Care at the end of life, apparently, is not a core responsibility
of aged care services in this country. Perhaps most chilling is
the official acknowledgement that aged care is no guarantee
of support: “A person nearing the end of their life may need to
leave if the aged care home can’t provide the care and support
that’s needed.”*
It is a matter that should, apparently, be outlined in the resident
agreement. Depending on the terms set out there, a decision
may have to be taken to receive treatment in hospital. Of course,
euthanasia also continues to remain outside the law in Australia,
although demands to consider it are likely to become increasingly
more difficult to ignore.
Could it be that our longer-term failure to accept the facts of
death are part of the problem we face?
Attempting to ensure Australia has an aged care system that is
adequately resourced to guarantee that the final years of life can
be lived in dignity and comfort seems incomprehensible while we
continue to deny the link between ageing and the end of life.
In a new book, Personhood, Identity and Care in Advanced Old
Age, two British authors, Paul Higgs and Chris Gilleard, explore
the implications for aged care of the final years, which they claim
represents ‘ageing without agency’.
They see the third age, which involves active ageing, as a new
opportunity for personal fulfilment. But humiliation, dependency,
impotence, infirmity and abjection, they argue, “seems to
surround the social position of those at the extremes of later life”,
the period they describe as the fourth age.
The picture they outline is bleak. They focus on the support of
those with advanced dementia who are unable to actively exercise
their rights but must depend on the actions of those responsible
for their care. In practice, the authors argue, personhood is
realised through the exercise of personal agency and cannot be
simply bestowed by well meaning but under-resourced staff. In
this circumstance, they are inherently vulnerable and dependent,
and providing care becomes increasingly one-sided.
Yet palliative care has been shown to be widely valued, precisely
because it does what is possible to remove pain and to provide
the dying care recipient with support, recognition and control
over their life.
Building on this approach is the Compassionate Communities
movement. This is an international approach to developing
intensive home support programs, underpinned by the work
of sociologist Allan Kellehear, originally from Victoria but now
resident in the UK.
An Australian research centre, the Caring at End of Life
Research Team at Western Sydney University, has published a
body of powerful studies documenting the value of such an
approach in this country. The international evidence is even more
impressive. Can we extend the approach from terminal illness to
all forms of late-life care?
It is time to be inspired by the possibilities of more ambitious
approaches to providing aged care. We can do much more to
keep most older people at home and to improve their quality
of life, even when residential care is necessary. More work is
surely needed, including developing closer links with medical
professionals both for in-home support as well as in residential
care. But it is clear that the time has come to learn from and
extend the palliative care approach, rather than continue to
attempt to deny the reality of impending death. ■
Michael Fine is honorary professor of sociology at Macquarie
University.
* https://www.myagedcare.gov.au/end-life-care/
end-life-care-aged-care-homes
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