The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Archer M, Willmott L, Chambaere K, Deliens L, White BP.
Abstract: Belgium has over 20 years of experience regulating assisted dying (AD). While much research considers this end-of-life practice, no studies have comprehensively analysed the various sources of regulation that govern it, including law, professional standards, and ethics. A scoping review identified all sources of regulation that guide AD practice, and their regulatory functions. Databases and reference lists were searched for records which met inclusion criteria between 11/2/22 and 25/3/22. Existing scholarship was used to identify sources of regulation, and thematically analyse their functions. Of the initial sample of 1364 records, 107 were included. Six sources of regulation were identified: law, policies, professional standards, training, advisory documents, and system design. Three regulatory functions were identified: prescribing conduct, scaffolding to support practice, and monitoring the system. The Belgian AD regulatory framework is multifaceted, complex, and fragmented. Providers must navigate and reconcile numerous sources of guidance providing this form of end-of-life care.
Bindley K, Ivynian S, Rawlings-Way O, Parker D.
Background: A growing proportion of older adults are living longer and dying with life-limiting illnesses. While the majority express a preference for end-of-life care at home, there is often a disparity between this preference and settings in which care and death continue to occur. Alongside other determinants, the nature of available care at home at the end of life shapes the realisation of preferences. Yet there is limited understanding of the experience and effectiveness of programs of in-home aged care in supporting end-of-life care at home.
Objectives: The study aimed to explore the experiences of informal carers of older adults with a life-limiting illness in the last year of life who received forms of in-home aged care.
Design and methods: A qualitative design utilised semi-structured interviews to elicit experiences of current or former (bereaved) carers of an older adult (n = 14), who currently or previously received support through programs of Australian government-funded in-home aged care. Analysis of interview data employed reflexive thematic analysis.
Results: Findings highlight features of in-home care that shape and constrain effective and equitable end-of-life care provision over the arc of experience, from the point of accessing this care. Themes pertained to the centrality of navigational support, the need for responsivity and flexibility to meet needs and preferences, the function of specific knowledge and skills and the importance of a relational orientation in facilitating continuity. Carer positionality, associated with individual capacity and resources, influenced the potential to mitigate gaps in care.
Conclusion: Approaches that support system navigation and the tailoring of features of in-home aged care to meet complex end-of-life needs are indicated, alongside further attention to education and support of the in-home aged care workforce. Implications are timely and possess relevance across sectors of aged and health care seeking to enable end-of-life care for older adults at home.
Chandra Y, Ta'eed A, Li K, Jesudason S, Brown M.
Abstract: Dialysis and kidney transplantation are life-extending treatments but are not universally accessible or appropriate; and many patients with advanced chronic kidney disease (CKD) experience distressing symptoms and diminished quality of life. Kidney supportive care (KSC), strongly supported by the ISN, addresses these concerns by focusing on symptom relief, psychosocial support, and aligning care with patient values and goals. It is a key element of kidney failure management and is now a fundamental part of nephrology practice.
Gebresillassie BM, Attia J, Cavenagh D, Harris ML.
Background: Prognostic uncertainty in older women with heart failure often delays end-of-life discussions and leads to unnecessary interventions. This study aimed to develop, internally validate, and evaluate the clinical utility of prognostic models for identifying patients nearing the end-of-life phase using nationally representative data from the Australian Longitudinal Study on Women’s Health (ALSWH), linked with administrative health records.
Methods: This prognostic study included older women from the 1921–26 ALSWH cohort who had a documented diagnosis of heart failure. Predictors were selected through a systematic review and expert input including age, smoking status, body mass index, breathing difficulties, need for regular assistance with daily activities, being confined to bed or a chair for most or all of the day, the number of medications supplied, and the number of hospital admissions. We developed, validated, and compared five models: a multivariable logistic regression (LR) model and four supervised machine learning (ML) models (Gradient Boosting, Extreme Gradient Boosting (XGBoost), Support Vector Machine, and Random Forest). Model performance was assessed using discrimination (area under the receiver operating characteristic curve [AUROC]) and calibration (calibration plot, slope, and intercept). Clinical utility was evaluated through decision curve analysis.
Results: The analysis included data from 1,630 older women with heart failure (mean baseline age: 72.5 ± 1.5 years). The LR model demonstrated good discrimination (AUROC: 0.740; 95% CI: 0.716–0.763) and excellent calibration (slope: 1.00; 95% CI: 0.87–1.13). Among the ML models, Gradient Boosting and XGBoost showed similar discrimination (AUROC: 0.733; 95% CI: 0.709–0.757), with good calibration for Gradient Boosting (slope: 1.04; 95% CI: 0.90–1.17) and slight miscalibration for XGBoost (slope: 0.88; 95% CI: 0.77–1.00). Random Forest had the lowest discrimination (AUROC: 0.720; 95% CI: 0.696–0.745) and the poorest calibration (slope: 0.55; 95% CI: 0.47–0.63). Decision curve analysis indicated a net clinical benefit across a broad range of threshold probabilities for both LR and ML models.
Conclusion: Prognostic models based on routinely collected health data can effectively identify older women with heart failure who are nearing the end-of-life stage. These models, particularly LR and Gradient Boosting, show promise in supporting timely palliative care referrals and guiding personalised care planning in clinical practice.
Lee S, Noonan K, Grindrod A, Shrestha S, Read N.
Background: End-of-life care is a critical competency for the health care workforce, yet evidence suggests that many health care professionals feel unprepared to engage with death, dying, and bereavement. Death literacy and death competence are emerging frameworks for assessing readiness to provide high-quality, compassionate care. Although validated tools exist, little is known about the preparedness of final-year undergraduate health care students in Australia. Understanding their current levels of death literacy and death competence is essential for informing curriculum design and strengthening workforce capacity.
Objective: This study aims to (1) measure death literacy and death competence among final-year students in medicine, nursing, and allied health programs in Australian universities; (2) explore students' reflections on how undergraduate training has shaped their preparedness for end-of-life care; and (3) identify educational needs and opportunities for curriculum enhancement.
Methods: A mixed methods design will be used. An online survey (15-20 minutes) will be distributed to final-year students across multiple Australian universities. The survey includes the Death Literacy Index, the Death Competency Scale, and open-ended reflection questions. Quantitative data will be analyzed using descriptive and inferential statistics (in SPSS and Stata), with subgroup comparisons across disciplines and benchmarking against national professional datasets. Qualitative responses will be analyzed thematically. In phase 2, up to 20 students will participate in 2 focus groups (60-90 minutes each). The focus groups will explore survey findings and students' perceptions of training, preparedness, and gaps. Data will be transcribed, anonymized, and analyzed thematically using NVivo.
Results: Data collection for the national survey is scheduled from September 2025 to December 2025, with an anticipated sample of 60 to 120 final-year students across medicine, nursing, and allied health disciplines. Data analysis will begin in March 2026, and findings are expected to be published in late 2026. The findings will establish baseline measures of death literacy and death competence among final-year health care students and identify strengths and gaps in current curricula. Results will be synthesized to provide actionable insights for educators and to inform future intervention studies.
Conclusions: By providing the first Australian pilot data on death literacy and death competence among final-year health care students, this study will inform curriculum development and workforce planning. The findings have the potential to enhance educational strategies, improve the preparedness of graduates for delivering end-of-life care, and contribute to the development of a death-literate health system.
Last updated 30 April 2024