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.
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.
Leung MS, Ng YH.
Background: Informal caregivers are vital in providing end-of-life care to their loved ones. However, there is a lack of systematic understanding of their coping strategies during the caregiving process.
Aim: To synthesize qualitative data about coping strategies of informal caregivers of people with non-dementia terminal illnesses with a prognosis of less than 12 months.
Design: Systematic review and thematic synthesis of qualitative studies and qualitative components of mixed-methods studies, appraised using the Mixed Methods Appraisal Tool.
Data sources: Seven electronic databases (Airiti Library, CINAHL Plus, PsycINFO, PubMed, Scopus, Wanfang, and Web of Science) were searched from inception to August 2025.
Results: Analysis of 44 studies involving 691 caregivers generated five themes revealing that caregivers employ both adaptive and avoidance strategies. Caregivers managed distress by avoiding acknowledgment of death and decline, mobilizing professional and social support networks, cognitively reframing their situations through positive reappraisal and acceptance, deriving meaning through fulfilling relational obligations and spiritual beliefs, and maintaining normalcy by continuing personal routines and shared activities with care recipients. Coping emerged as a complex, fluid process wherein caregivers shifted between strategies to manage dual stressors: caregiving responsibilities and pre-death grief encompassing losses of identity, time, and anticipation of death.
Conclusion: Caregivers dynamically navigate simultaneous stressors of caregiving demands and pre-death grief through multiple strategies. Palliative care services should integrate routine caregiver grief assessment throughout the illness trajectory and implement early interventions addressing both caregiving stress and pre-death grief, rather than only addressing caregiving burden and bereavement.
Ly L, Cservid V, Qazi U, Buchan C, Pascoe A, Goh N, et al.
Introduction/ aim: Distressing symptoms such as cough, fatigue and chronic breathlessness are highly prevalent among people with interstitial lung disease (ILD). Despite high symptom burden, treatment options are limited and access to palliative care is suboptimal. We aimed to explore the knowledge and beliefs of people with ILD and their carers regarding symptom management, and understand the barriers and facilitators to accessing supportive and palliative care.
Methods: Qualitative interviews with people with ILD and carers recruited from Australian public and private respiratory clinics were conducted. Transcripts were analysed thematically.
Results: Four themes emerged from 15 people with ILD and 2 carer interviews: (1) symptom burden and management; (2) beliefs and perceptions regarding opioids and supportive and palliative care; (3) informational needs; and (4) access to care and trust through continuity of care. Participants described managing frightening breathlessness, challenging symptoms and treatment side effects as overwhelming. Relentless functional decline and variable self-management adherence were reported. Opioids and palliative care were associated with end-of-life care. Participants indicated greater acceptance of supportive care if more reliable information and educational resources regarding disease and symptom management were available. Participants noted that healthcare access requires multimodal delivery, digital literacy, the establishment of trust, continuity of care and multidisciplinary collaboration.
Conclusion: People with ILD had high symptom burden but limited knowledge regarding symptom management and palliative care, with misperceptions influencing acceptance. Early integration of palliative care within multidisciplinary specialist ILD clinics, together with educational resources, is needed to facilitate holistic care.
Last updated 30 April 2024