Death 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.
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