Time to prioritise research on palliative care, death and dying

A blog post written by Professor Jennifer Tieman, CareSearch Director, College of Nursing and Health Sciences, Flinders University

How we care for people coming to the end of their life is being impacted by Australia’s ageing population and by changing patterns of disease and co-morbidities, health and social resources, and our cultural attitudes. Heart disease and dementia have overtaken cancer as the major causes of death in Australia. [1] In 2016 there were 158,504 deaths and this will double to a projected annual death rate of 320,600 by 2056. We are also dying older with most deaths now occurring between the ages of 65 and 95 years. [2] Demand for care is increasing with data showing that palliative care hospitalisations are increasing at double the rate of all reason hospitalisations. [3] We need to recognise and respond to this demand and this need.

There is a growing awareness of the impacts of ageing and dying on the health system and aged care industry as well as on individuals, communities and society. In 2014, the World Health Assembly passed a resolution calling for member states to strengthen palliative care as a component of comprehensive care across the life course. [4] This resolution highlights the importance of palliative care being available across the whole of the health system including primary and community care. However, care across the system and the community is variable and influenced by geography, eligibility and accessibility, and funding arrangements and incentives. The recent Productivity Commission’s Report on Human Services noted that many Australians in the last phase of their life are not dying in a place of their choice nor are they receiving care that fully reflects their preferences and needs. The report argues that reforms are needed to significantly expand community-based palliative care services and to improve the standard of end-of-life care in residential aged care facilities. [5] The Royal Commission into Aged Care Quality and Safety is also highlighting community and consumer needs, care issues and reform requirements associated with our ageing population including their care needs at the end of life. [6]

As a result of the changing clinical and policy environment and the increasing demand within the system, all health professionals and most social care staff will be involved in providing care to people at the end of life as some part of their work or at some stage in their career. This means there is an urgent need to ensure that there are systems, processes and supports for health professionals, the aged care workforce and the people affected by the need for palliative care. These approaches must are underpinned by evidence for practice, decision-making, and service and system implementation. We therefore need research that looks at critical issues such as normalising planning and preparedness for end of life, assessing the most effective models for care across settings and population groups, and how to provide meaningful support for those dying and providing care at home. But we also must recognise that dying is not just a health issue but a personal, social and community experience. So research and translation efforts need to support the increasing rate of dying within the society while maintaining a genuine focus on the individual and their family. 

Flinders University has recognised that we need to be part of this research agenda. We have a long and proud history in palliative care, however, until today there has been no formal university based palliative care research infrastructure. The new Research Centre in Palliative Care, Death and Dying launched this morning consolidates our research activities and provides a base for integration with academic processes and expansion into new research avenues. It provides a mechanism to integrate research between Flinders University and our partner health services supporting diversified research applications that can address “wicked” health and social problems with rigour, breadth and depth. It will enable us to undertake more complex multi-methods and multidisciplinary research that can investigate death and dying across all sites where care is provided including hospitals, community and home care, residential aged care and specialist health and social services. The Centre also recognises that grants and projects over the last ten years have enabled us to create significant resources for palliative care that have demonstrated their reach and impact across the sector. This will remain a vital part of our work.

I am excited to be taking on the role of the Centre Director. The researchers in the Centre are looking forward to building on our existing networks and partnerships to facilitate new collaborations that can actively engage in the research and change processes to address the needs of the Australian community around ageing, caring, dying and grieving. The Flinders Research Centre for Palliative Care, Death and Dying will actively engage with individuals, organisations and communities to understand the human, health system and social impacts of palliative care, death and dying across our diverse population. We invite you to learn more about us and to join us in this new research endeavour.