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.
Cole E, Reymond L, Stroil-Salama E, Phelan C.
Objective: Queensland implemented a centralised voluntary assisted dying (VAD) pharmacy model to promote safety, consistency and equitable access to VAD substances. In a geographically dispersed state, such as Queensland, a potential concern is whether centralisation affects time-to-delivery (TTD) for patients in regional and rural areas. This audit examined whether differences exist in TTD between South East Queensland (SEQ; metropolitan) and non-SEQ (non-metropolitan) patients, and explored reasons for prescription and visit cancellations to determine whether geographic factors, particularly remoteness, influenced service reliability.
Methods: All VAD substance deliveries between 1 January 2023 and 31 January 2024 were analysed. TTD was defined as the difference between the patient's preferred and actual supply dates. Comparisons were made across region (SEQ vs non-SEQ), hospital and health service districts, and Modified Monash Model categories. Reasons for prescription and visit cancellations were also explored, as these cases were not captured in the TTD dataset if a delivery did not proceed, and may reveal potential geographic barriers for timely access.
Results: Of 911 patients, 723 (83%) received the VAD substance on their preferred date. No statistically significant differences in TTD were observed across region, hospital and health service districts or Modified Monash Model classifications, demonstrating consistent and reliable statewide delivery - an indicator of safety and standardised practice. Cancellations (prescriptions n = 58, visits n = 56) were geographically uniform and most commonly due to patient death.
Conclusions: Queensland's centralised VAD pharmacy enables equity of access and safe delivery of VAD substances regardless of geography, supporting standardised practice and mitigating operational risks through centralised oversight.
Dadich A, Laurence C.
Background: Palliative care is becoming increasingly important for many health systems worldwide, driven by ageing populations and the increasing prevalence of chronic conditions. Access to and use of palliative care are not uniform across populations and are particularly limited among people of culturally and linguistically diverse communities, people of low socioeconomic status, and people residing in rural areas. To address these disparties, models of palliative care are required to meet the needs of these populations. The aim of this study was to identify stakeholder perspectives on the core components of palliative care models for these underserved populations that have the potential to improve their access to and use of palliative care.
Methods: Using a modified world café approach, facilitated discussions were held with stakeholders at two palliative care forums held in Australia in 2023. Targeted discussions were held on the factors that helped and hindered access to and use of palliative care, and the types of palliative care models for the three underserved populations. Participants summarised their discussions and identified three priority areas. Thematic analysis was used to identify patterns in the data collected from the forums.
Results: Over one hundred stakeholders contributed to this study (n = 109). The barriers to palliative care among the underserved populations included (mis)understandings of palliative care services, such as beliefs about dying, geographical or social isolation, the limited cultural appropriateness of services, and limited resources that restricted access to and use of palliative care services. Participants identified features that enabled the underserved populations to access palliative care, including communication and relationships to aid shared understanding, education for service providers and recipients, resources to promote and sustain community engagement, and cultural appropriateness to ensure communication was tailored to the needs and preferences of these populations.
Conclusions: Palliative care services for underserved populations should demonstrate choice, appropriateness, and connectedness, and be well-resourced. These core components might be used to underpin palliative care services for these populations to improve their access to and use of these services.
Dao-Tran TH, Kenny D, Welch A, Brittain D, Lendich K, Thompson J, et al.
Background: The Core Outcome Measures for Improving Dementia Care (COM-IC) project aims to develop a core outcome set for measuring the quality of care provided to people living with dementia in routine care settings. In a previous stage of the project, 17 core outcomes were identified. This study is the next step, aiming to review the literature to identify existing or recommended, validated scales for measuring the identified core outcomes.
Design: A rapid review DATA SOURCES: Six electronic databases (PubMed, Embase (Elsevier), CINAHL Complete (EBSCOhost), APA PsycINFO (EBSCOhost), Web of Science (Clarivate) and Scopus (Elsevier) were searched. Searches were completed on 12 July 2024.
Eligibility criteria: Peer-reviewed systematic reviews or original validation studies of scales measuring dignity; engagement in advance care planning; pain; quality of life; feeling safe and secure; emotional well-being; diagnosis of dementia; behavioural and psychological symptoms of dementia; the importance of relationships; meaningful activities; hygiene and comfort; resource utilisation and safety incidents for people living with dementia were included. Peer-reviewed systematic reviews or original validation studies of the scales to measure informal carers' quality of life, their educational opportunities, formal carers' morale and dementia-specific qualifications were also included. All studies were required to have been conducted among people living with dementia or carers, as appropriate, and to have full texts available in English.
Data extraction and synthesis: Data on the scale's name, the number of subscales, subscales' names, the number of items, response options, scoring, estimated time to complete the scale, recommended frequency of data collection and the setting where the scale was first validated were extracted. Findings are presented in figures, tables and narrative texts.
Results: A total of 88 validated scales were identified. No scales measuring dignity, engagement in advance care planning, feeling safe and secure, hygiene or safety incidents were validated for people living with dementia. No scale was identified to measure the importance of relationships for people living with dementia, the formal carers' dementia-specific qualifications or the educational opportunities for informal carers. The review also describes the 50 recommended or validated scales.
Conclusions: Several validated or recommended scales exist to measure core outcomes identified as important for assessing the quality of care provided to people living with dementia in routine care settings. This review offers COM-IC stakeholders and other potential users with information on the validated/recommended scales to measure these core outcomes.
Juhrmann ML, Vandersman P, Damarell RA, Khamis Sharaf A, San Martin A, Donkor A, et al.
Background: Intergenerational co-residence has historically been prevalent. Recent financial pressures, increasing caregiving responsibilities and ageing populations have led to a resurgence of this arrangement, particularly in end-of-life care. However, understanding of its influence on care quality across cultures remains limited.
Aim: To explore how intergenerational co-residence affects emotional, practical, and cultural dimensions of palliative and end-of-life care across different settings, and to identify key themes shaping caregiving roles, decision-making, and support needs in these households.
Design: Systematic integrative review and thematic synthesis based on Braun and Clarke's approach and using the Convoy Model as a theoretical framework.
Data sources: Six major databases were searched from inception to 22 May 2023 and updated to 8 June 2025. Eligible papers reported empirical studies on end-of-life care in intergenerational co-residence and were appraised using the Mixed Methods Appraisal Tool.
Results: Three themes were constructed from seven studies from China, South Africa, Spain, Uganda, Turkey and the United States. These were: responding to an end-of-life diagnosis, with limited death literacy delaying care; identifying systems of support, where caregiving burdens often fell on women; and concluding the journey and saying goodbye.
Conclusions: Intergenerational co-residence can foster support at the end of life, yet it may also reinforce gendered caregiving roles that disproportionately burden women. Effective integration of formal support services with family caregiving remains important in alleviating pressures and promoting equitable care models, highlighting the need for culturally sensitive interventions that address the diverse needs of families, while encouraging collaborative caregiving approaches.
Kelly JJ, Griffin KA, Vemuri S, Sacks B, Lee S.
Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase.
Case presentation: Three terminal home-based paediatric cases with refractory symptoms that caused significant distress to both the child and family during the final days of life. All three cases had several changes in medications before receiving phenobarbital.
Case management: The first case had a loading dose of phenobarbital based on an adult guideline; the second case commenced a continuous phenobarbital infusion without a loading dose of phenobarbital; and the final case had a weight-based loading dose.
Case outcome: In the absence of paediatric clinical guidelines for the use of phenobarbital in refractory symptom management, a weight-based loading dose of phenobarbital before commencing a continuous infusion provided enhanced symptom management when compared with a loading dose using adult guidance or the absence of one.
Conclusion: Further research is needed on the administration of a loading dose of phenobarbital for managing terminal refractory symptoms in the paediatric palliative care population during the terminal phase. This will help to establish evidence-based guidelines for paediatric palliative sedation, ensuring appropriate relief of refractory symptoms for a peaceful death at home.
Last updated 30 April 2024