Australia’s population is ageing and with this trend comes the burden and complexity of increasing physical illness and disability. This burden escalates as a person nears death and as a consequence, the cost of care becomes disproportionately high in the last year of life. Currently, end-of-life (EOL) care is relatively siloed and people are often cared for by multiple health professionals according to their diagnoses or the bodily system that is most affected.
Specialist palliative care has evolved to care for people with more acute clinical needs, predominantly in people with a cancer diagnosis. However, most people at EOL require a different form of care. The majority of EOL care is provided in the community by general practitioners (GPs) and other primary care services (e.g. community nurses), whether they recognise EOL or not. GPs have a unique role to manage, coordinate and integrate care and are a critical part of the network of care for people with advanced chronic diseases. With sufficient support and training, GPs and other primary care services, when available, are able to provide appropriate EOL care for the majority of people.
We have information about where people are cared for and health outcomes in the context of specialist palliative services, but there is a striking lack of populationbased and nationwide data on the scale and quality of primary EOL care in Australia. We do not have a clear picture of the scope of such care or how GPs interact with specialists and hospital-based interventions. More comprehensive information is needed to understand how effectively this care is delivered at the EOL and to inform how primary practitioners can be supported to provide optimal care.
Systematic data collection can be used to inform and promote improvements in the quality of EOL care. However, processes which facilitate the capture, collection and analysis of comprehensive case-based EOL care data are currently not available in general practice. There are also no clear mechanisms for feedback on the quality of care. Routinely collected data on healthcare resource utilisation in community / primary care is vital.
This Issues Brief makes a number of key recommendations which will be essential to addressing the gaps in our knowledge of EOL care in general practice. These include:
• developing an integrated information network to address the knowledge gap in the primary care management of people in the final 12 months of life;
• identifying key benchmarks for EOL care in general practice and developing pathways for feedback to the profession;
• collecting and collating individual case information in general practice relating to EOL care; and
• developing and sharing a Key Information Statement about patients identified as being at risk of dying, to guide decision making and patient management.