WHEN I searched Volumes 1 to 3b of the recently released final report of the Royal Commission into Aged Care Quality and Safety for their perspective on the role of palliative care in aged care, I found only limited use of the keywords of my trade: death/dying, palliative care, advance care planning, end-of-life etc. There was little acknowledgement of the reality that aged care is care at the end of life and that for all its recipients, regardless of the duration of their aged care, the support they receive and the quality of life that they achieve, aged care culminates in death.
Even though one might have had higher expectations of a Royal Commission, many in our community have a blind spot when it comes to discussing the realities of death as the natural end to every life, and fail to recognise the importance of advance care planning as a means by which older persons can best voice and fulfil their preferences for the remainder of their life.
I was actually more surprised by what else I did not find.
I had assumed that, seeking to generate wholesale reform of a struggling aged care system, the report would start with a clear definition of “aged care”, a demarcation of the population for whom it should be available, listing of the principles under which aged care operates, and a statement of its goals for its recipients. Following from this, the Report would clarify where aged care sits in the pantheon of government responsibilities, would assign responsibility to whatever body would be tasked with ensuring the delivery of aged care, and include a candid discussion of how aged care might most effectively be funded.
Perhaps only the failure of the report’s authors to agree on who should have overall responsibility to ensure the provision of appropriate aged care in the future can be understood on the grounds that responsibility has never been assumed or allocated in the past.
These deficiencies are emblematic of the ways that the provision of aged care in Australia has self-organised as a passive process. The edifice of aged care in Australia has emerged, like a ramshackle beach hut, in response to the challenges and ideologies of the moment, but without an overarching plan, a goal or an architect.
Over time, the delivery of aged care has become so complex that it is nigh on impossible for any one person to comprehend it in its entirety. This is not a fault on anyone’s part, because this is the way that we operate in our complex societies – we start as a less complex community with a need to adapt to new circumstances, fix bits of things without fully understanding the broader repercussions (either of the problem or its solution), and then end up increasing complexity further while trying to fix the consequences of our earlier decisions. Eventually the whole is comprised of a great complexity of enmeshed components, and becomes unmanageable and unstable.
The scope and scale of the complexity of our failings across the entirety of aged care is laid out in the Royal Commission’s report, particularly in chapter 4 of volume 2 – “Systemic problems in the aged care system” (p185).
Reflecting on the Royal Commission’s report and my personal and professional interactions with aged care over many years, I realised that, actually, we don’t have an aged care “system”, if we define a system to be:
Aged care in Australia operates as a fragmented patchwork of funding sources and service providers, all jockeying over resources that are not sufficient for the need. And while perhaps the majority of people manage to obtain care of sufficient quality, many frail and elderly people are underserviced and overwhelmed. These unfortunates drift through the turmoil, buffeted by the whims of their ailments and subject to the vagaries of bureaucracy, their outcomes determined by their degree of affluence, and the passion and engagement (or otherwise) of their relatives and their health workers. Often cognitively impaired, unable to speak or read English, and/or computer naive, they are forced to navigate without charts, and with nobody responsible to make it work for every one of them. Patients and their families, doctors, nurses and other health care workers, and even aged care managers, feel powerless and confused.
For some corporatised private equity service providers (perhaps eyeing off the example of the US where some 70% of nursing homes are owned and managed by an often-opaque web of for-profit companies), aged care offers a money making opportunity (here, here and here). Writing in the New York Times, Charles Duhigg describes the consequences of assuming that market forces can solve the problems of service delivery in aged care. At the same time, for many not-for-profit providers, aged care has become a become financial and ethical quagmire.
While the Royal Commission’s 148 recommendations are not intrinsically invalid, given that aged care is already too complex to be understood, I am concerned that they might be seen as a tick box “to-do” list to be applied to current aged care delivery. If so, the outcome will just add to the complexity of something that is already incomprehensible – further renovations of the beachside shack.
The ecosystem of Australian aged care has never been subjected to the quality control for effectiveness found in the evolution by natural selection of complex natural environments. From an alternative paradigm, aged care has suffered greatly from a lack of intelligent design.
My starting point for an alternative approach, if I may be so bold, would be to opt for a redesign that includes, as appropriate, the 148 recommendations to be understood as components of, or necessary values for, a new system built by design.
At a minimum, this means a major renovation that deliberately unravels the mind-sapping complexity of the present colossus and replaces it with a purposeful redesign of the whole of our melange of aged care activities into a simpler, comprehensible and effective aged care system for the long term.
The first steps in the design of the aged care system are to agree a definition (including the “who” of aged care), establish principles, set goals, and assign the responsibility for a redesign and subsequent governance. Almost before, and certainly as this process is underway, the community and its elected government will have to indicate how much funding they are willing and able to afford.
I did write out a definition, principles and goals of aged care, described our responsibilities as community members, and allocated the responsibilities of a national aged care service. But on reflection, I think that these tasks should be undertaken by our community as a whole to maximise buy-in. Therefore, I deleted those 849 words, but have saved them elsewhere for future comparison.
Deconstructing the deeply embedded complexity of the rambling edifice of our aged care delivery processes will be a huge task. However, that challenge is outweighed by the long term benefits of rebuilding on a “brownfield site” a simpler system managed by an organisation that holds a charter with boundaries founded on a definition, principles and goals, and with the responsibility to adapt and change in real time to the circumstances of the day.
Needless to say, and with my palliative care hat back on, we cannot avoid actively recognising in our aged care system that all of our lives eventually blend into the need for care at the end of life. Among the principles for our aged care service, we must ensure that all recipients of aged care can benefit from early engagement in advance care planning that, as much as possible, helps them to realise their achievable goals for the remainder of their life, and that when they are dying, they have access to appropriate levels of palliative care. Last week was National Advance Care Planning Week.
Dr Will Cairns OAM is Consultant Emeritus Palliative Medicine, based in Townsville.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.