The Royal Commission into Aged Care Quality and Safety has considered palliative care as part of person-centred care within aged care with a hearing in Perth. This hearing included a case study of care which provided meaning and context for the issues being discussed and reminded us all that our systems, services and staff affect real people. The hearing concluded with a panel session addressing issues and considerations in palliative care in aged care and how to look to the future. I was part of that panel along with Dr Jane Fisher from Palliative Care Australia and Dr Liz Reymond. Our statements, and the panel transcript are now all available on the Royal Commission website.
One of the realities in preparing for such an event is that it forces you to reflect on what good care is and what individuals, families and the community wish for in navigating end of life and engaging with palliative care. In the final part of the panel session, we were invited to propose some possible directions. Dr Fisher provided an elegant 8 point plan to support policy change while Dr Reymond addressed the clinical needs on the ground. For me, the focus was community and system issues.
First, we need to look at how we can build awareness of critical issues around death, dying and palliative care. We need to normalise death as part of the life course to help us all be able to talk with our families, neighbours and work colleagues. We must build awareness of what palliative care is and how it can support those coming to the end of their life and their families. We also need to be clear that all lives and all deaths are important regardless of age or their background and preferences. Awareness raising is not easy but we should leverage a growing recognition of population ageing within the community as well as emerging public health approaches such as compassionate communities, death cafes, Dying to Know Day and MOOCs such as Dying2Learn.
Developing capability in our aged care, primary care and health care workforces is fundamental. For those working with older Australians, there are critical skills which are needed even if they vary according to role and scope of practice including: recognising change(s) which could suggest that death is forseeable; providing care responding to the person’s needs within the individual’s scope of practice; being able to communicate with the person compassionately around death and dying; and supporting planning including advance care planning and terminal care planning for the actual death. There are already good resources that can assist in this work including palliAGED (and palliAGED apps and Practice Tip Sheets) and ELDAC (and the five toolkits).
Workforce review and redesign in aged care is obviously being discussed and any changes must consider palliative care as part of core business for aged care services and providers. This means we also need to look at how the aged care sector intersects with primary care, community services and healthcare systems. Care may be provided by systems but it is experienced by a person so we need to look at how the systems integrate and how we can leverage local contexts in care provision. To do this well we also need to understand more clearly how older people are dying as they age across the various care and community systems. We also need to understand how our diversity influences access to and equity in our systems if we are to develop meaningful supports, services and interventions. Our thinking and planning must also recognise that care is not just the remit of health and aged care services but of the family and the community. We need to ensure that this caring network can participate meaningfully in our formal care systems and processes.
Given an anticipated increase in dying, we need to ensure that bereavement is considered so that families and communities are supported in their grief and loss both through their communities and the health system when needed. We must also address self-care for direct care providers who will be increasingly exposed to loss and grief if we are to have a healthy and sustainable workforce.
Technology and digital solutions have a role to play. Working across systems and services means that digital communication must be enabled. But there are also applications that could support palliative care provision such as prompts for action; community based monitoring; self-care plans; enhanced ACP processes, and mechanisms for community and consumer feedback.
Finally, we need to acknowledge that multisystem change is needed that incorporates primary care, aged care and health systems. We must also ensure that changes are future proofed and reflect projected population figures, societal changes and diversity, and impacts of current policy reforms including an increasing emphasis on homecare. Consumer and community partners should inform this work to ensure that person-centered care remains at the heart of policy changes, service redesign, and evaluation processes. While a complex set of issues, many elements are already available and could be better utilised in building a future that meets the needs of our citizens and supports our healthcare, aged care and primary care workforces.
Prof Jennifer Tieman Director, Matthew Flinders Fellow, Research Centre in Palliative Care, Death and Dying