Professor Jennifer Tieman
Director - ARIIA Knowledge and Implementation Hub (KIH)
There were 190,939 registered deaths in 2022, an increase of 19,470 since 2021. The number of people dying each year is increasing, and we are dying older, with 68% of deaths in 2022 among people aged 75 or over [ABS data, 2023]. For people aged 65 and over, the most common place of death was hospital (50%), followed by residential aged care (36%). For people aged 85 and over, residential aged care was the most common place of death (50%), followed by hospital (40%) [AIHW, 2021]. Aged care not only cares for older people but also for those nearing the end of life. The 2024 ARIIA Conference was brave enough to highlight this issue and challenge us to rethink the end-of-life care system. More importantly, conference delegates actively chose to participate in the discussion.
A distinguished and articulate set of speakers addressed the factors shaping the palliative care ecosystem, with particular reference to aged care. Dr. Helena Williams illustrated the complexity of need and decision-making through two case studies. She noted that the ability to provide care is hampered by 31% of GPs reporting a lack of confidence in providing appropriate palliative care to their patients due to patient complexity and inadequate or insufficient training and resources. Low uptake of ACDs further compounds care planning and delivery. Issues around legal matters at the end of life were explored by Dr. Katrine Del Villar. Concerns about ACDs being overridden, the role and practice of substitute decision-makers, futile or non-beneficial care, pain and symptom relief, and Voluntary Assisted Dying were all issues that clinicians and aged care workers had raised.
The possibilities and perils of technology in end-of-life systems were introduced by Anne Livingstone. Big data, sensors, home monitoring, virtual reality, and artificial intelligence are all poised to enter aged care and come into play in care at the end of life. While the possibilities are easy to see, concerns about governance, human-centered design, the commercial marketplace, expense, privacy, and interoperability all challenge integration into practice. Understanding the complexity of the state and national governance environment further complicates how change can be implemented into the system. While we think that evidence drives rational decision-making, Kate Swetenham reminded us that policy is often informed by consumer feedback, adverse events, reviews and commissions, funding instruments, and jurisdictional meetings.
Questions from the floor to the panel sought to understand why, as a community, we are not more willing to talk about death and dying and why there is such a fractured understanding of what palliative care is. The need to acknowledge the role that home care will play in care delivery was raised by those on the frontline of providing home care packages. Session attendees also reminded us of the diversity of those needing care at the end of life, as well as the diverse backgrounds, experiences, and beliefs of those providing care in aged care settings. Funding tensions, such as GP reimbursements and ANACC Class 1, State and Commonwealth responsibilities and interfaces, and the availability and capacity of family carers, were concerns expressed by the audience. The lack of willingness of philanthropy to engage with the sector was also seen as problematic.
Such a rich discussion needs to find a pathway forward. Suggested directions included developing clinical leadership for palliative care in aged care that can drive policy and practice awareness. The business case for quality care needs to be developed not just for governments but for all funders. Encouraging family and community discussions and promoting the completion of advance care planning documents was seen as critical. However, respecting diversity in views across individuals, communities, and choices is essential. We need to advocate for models of integrated care that recognise changing needs over time and transitions in care. Finally, there was a consensus that we need to be proactive in recognising those who are in the last months or years of life. This provides time for planning, for family, and for good care right up to death.
*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.