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.
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.
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.
Last updated 30 April 2024