Latest Australian research

Ross L, McDonald J, Volkmann ER. 

Purpose of review: Respiratory disease is a major cause of morbidity and mortality for patients with systemic autoimmune diseases. Chronic exertional fatigue, breathlessness, and cough all cause significant impairment of quality of life. In this review, we summarize the major respiratory complications of systemic autoimmune diseases and consider the evidence supporting the role that palliative care can play in the management of systemic autoimmune disease.

Recent findings: The symptom burden suffered by patients with systemic autoimmune diseases is equivalent to that of patients with active malignancy. Recent studies have explored how palliative care could be integrated with rheumatology care to improve symptom control and address the high psychosocial burden associated with living with a systemic autoimmune disease. Both rheumatologists and palliative care providers are uncertain as to the role of palliative care in the management of systemic autoimmune diseases, with the optimal model of integrated palliative care yet to be defined.

Summary: Emerging evidence supports the acceptability and value of palliative care to patients living with a systemic autoimmune disease and their caregivers. However, there are both patient and physician associated barriers to the integration of palliative care with rheumatology care. Studies are required to demonstrate the efficacy of palliative care in the management of systemic autoimmune diseases.

Bryant RA, Breukelaar IA, Korgaonkar M.

Abstract: Prolonged grief disorder (PGD) is a psychiatric condition that describes individuals who experience persistent grief reactions characterized by preoccupation with the loss. This review provides an overview of the evidence on neurobiological processes associated with PGD. We propose that, although the neurobiological circuitry of PGD overlaps with that of anxiety and depression, it also involves neural responses that reflect the distinct symptom profiles of people with PGD. Specifically, while recruitment of cognitive control and salience networks is observed across common mental disorders, there is evidence that aberrant neural processes implicated in reward processes and appetitive functions are somewhat distinctive to PGD. We emphasize that methodological limitations suggest caution is needed in interpreting current evidence, and more rigorous research is required to delineate key distinct neurobiological processes of PGD.

Stevens SX, Addo IY, El-Katateny E, Rollins B, Lourenço RA, Booth CM, et al.

Background: People with advanced cancer often invest substantial amounts of time to receive palliative treatments. This has been labelled the 'time toxicity' of cancer treatment. However, stakeholder views on time toxicity are still being established. This study used mixed methods to explore Australian oncologists' perspectives on the time burdens of palliative systemic cancer treatments.

Methods: Semi-structured qualitative interviews were conducted with a convenience sample of gastrointestinal oncologists recruited from one metropolitan and one regional centre, supplemented by online advertising through the Australian Gastrointestinal Trials Group. Themes emerging from initial interviews (n = 8) informed the development of an online survey disseminated to Australian oncologists via professional groups. Qualitative data were analysed using an inductive approach. Survey data were summarised descriptively.

Results: Fifteen oncologists were interviewed, 60% of whom were primarily based in major metropolitan areas. One overarching theme: the value of time, unified four subthemes: (1) contributors to 'time 'toxicity', (2) benefits and uncertainties, (3) time as a decision-modifier, and (4) proposed solutions. Surveyed oncologists (n = 108) expressed broad agreement with the thematic framework in interviews, affirming the importance of time for patients with advanced cancer and supporting strategies to reduce time burdens. However, responses acknowledged the subjectivity of time 'toxicity' to individual patients.

Conclusions: This mixed-methods study establishes Australian oncologists' perspectives on the time toxicity of palliative systemic cancer treatments, identifying potential barriers and opportunities for including discussions of healthcare time into shared decision-making, and systems-level strategies for addressing unwanted healthcare contact time.

Ueno R, Modra L, Warrillow S.

Abstract: Death and dying are significant and impactful, for individuals, families and broader society. For clinical teams working in the intensive care unit (ICU), caring for a dying patient and supporting their family are an important part of their professional role. Australian ICU practice has evolved over several decades to optimise end of life care, so that it is patient centred and adheres to accepted ethical standards as well the established legal framework. In addition to acquiring necessary technical skills, intensivists working in Australia must complete training in advanced communication as well as clinical ethics and are required to maintain competence in these domains for the duration of their professional lives. Important considerations for Australian intensivists managing end of life care include cultural humility, avoidance of assumptions, respectful curiosity, prioritising individual patient values and preferences, and the avoidance of non-beneficial treatments that may simply prolong dying or contribute to suffering. As well as having a legislated legal framework, Australia has endorsed national guidelines developed by relevant the specialist training colleges and intensive care professional societies.

Johnson CE, Dai Y, Bryce L, Joseph N, Arthur B, Thorne K, et al.

Background: With an aging population worldwide, many countries face increasing challenges in delivering quality palliative care in long-term care facilities for older people (LTCFs). In Australia, a Royal Commission into Quality and safety of Aged Care in 2021 highlighted significant gaps in this field. In response, the Palliative Aged Care Outcomes Program (PACOP), a person-centred outcomes framework, was developed to address gaps in identification, assessment and management of palliative care needs in LTCFs.

Objective: To present the development, implementation and early process evaluation of PACOP.

Design: A cross-sectional mixed-methods study with embedded qualitative open-ended questions.

Methods: PACOP was co-designed with sector stakeholders and informed by insights from the Palliative Care Outcomes Collaboration (PCOC)-Wicking trial. Launched in 2022, it comprises two key components: the Profile and Outcomes Collections, supported by national benchmarks, improvement facilitators, training, data and IT infrastructure. A process evaluation, guided by Normalisation Process Theory (NPT), used the NoMAD instrument and open-ended questions to explore healthcare workers’ experiences of the PACOP implementation.

Results: By June 2025, 440 of 2,622 (16.8%) LTCFs in Australia participated in PACOP. Key facilitators included organizational buy-in, leadership support, the train-the-trainer model and improvement facilitators. Participants reported that PACOP improved early identification of residents’ palliative care needs, supported structured care planning and informed service improvement. However, challenges such as workforce instability, inexperienced staff and limited IT integration were identified.

Conclusion: PACOP has achieved substantial uptake and early signs of successful implementation in Australian LTCFs. Continued investment in organizational systems change, tailored training, digital integration, along with responsive benchmarking and feedback mechanisms, are essential to sustaining its implementation and enhancing palliative care quality in LTCFs.