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.
Tiansaard J, Bloomer MJ, Purtell L, Bonner A.
Background: Advance care planning enables adults to express their goals and preferences for future care. Advance care planning has been widely recognised in oncology and palliative care for decades, but its use in kidney care is variable.
Objectives: To examine interventions that promote advance care planning among adults with chronic kidney disease, including those receiving kidney replacement therapy.
Design: Systematic review.
Methods: A comprehensive search was conducted in six databases: PubMed, MEDLINE, CINAHL, PsycINFO, Scopus, and Embase. Studies published from databases inception to September 2024 were included. Two independent reviewers identified studies for full-text review and data extraction. Methodological quality was assessed using the Mixed Methods Appraisal Tool. The review protocol was registered in PROSPERO (CRD42024589958).
Results: Twenty-seven studies were included: 22 were quantitative (10 randomised and 12 non-randomised), three were qualitative, and two were mixed-methods designs. Most studies were conducted in the United States of America. Five main strategies to promote advance care planning uptake and improve outcomes were educating and training kidney healthcare professionals; implementing advance care planning conversations; providing educational resources; offering peer facilitators; and integrating palliative care teams. The synthesis of qualitative findings indicated that advance care planning discussions instilled hopefulness about the future and did not induce anxiety.
Conclusion: Advance care planning conversations combined with educational resources and peer support facilitators are likely to improve rates of advance care planning completions in this population, although further evidence is needed. Kidney healthcare professionals should be trained to initiate these conversations with all patients.
Tulloch K, Acordi Steffen J, Rosenberg JP.
Background: Although palliative care embraces person-centred principles and autonomy to meet patients' holistic needs, autonomy is not automatically assured and few studies cover patients' lived experiences. Consequently, current thinking about dying and palliative care practices would benefit from an in-depth understanding of patient experiences. Such research provides an opportunity to challenge assumptions about patient preferences for the amount and type of care and decision-making involvement, especially for the way patient preferences may vary between individuals and change through the palliative care process.
Objectives: This project aimed to investigate patient conceptualisations and preferences for autonomy while receiving palliative care.
Design: This qualitative phenomenological study explored patients' experiences of autonomy in home-based palliative care in Queensland, Australia.
Methods: Face-to-face semi-structured interviews were audio-recorded with two participants to learn their perspectives regarding autonomy in palliative care. Transcripts were analyzed using interpretative phenomenological analysis.
Results: Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals' wishes for autonomy.
Conclusion: Partnering with individuals receiving palliative care provided authentic insight into their level and experience of autonomy. While many health practitioners aim to facilitate autonomy in patients receiving palliative care, flexibility is required to recognise variable patient needs. Such approaches will further ensure autonomy moves beyond a singular view of healthcare decision participation, to encompass changes to preferences during palliative care, while recognising how patients exercise autonomy via self-assessment and coping mechanisms.
Bourne OP, Fischer A, Good P.
Objectives: This study aimed to determine the frequency and characteristics of patients discharged from a specialist community palliative care service, and the incidence, timing and reasons for discharge.
Methods: This retrospective audit reviewed admissions and discharges over a 6-year period, including demographics, length of admission, discharge reason and readmission status.
Results: Of the 5149 admissions, 17% were discharged and 22% were later readmitted. 19% of readmissions were again discharged. The main reason for discharge was having no specialist palliative care needs (53%), followed by patients moving out of the service catchment area (13%). Median length of stay before discharge was 141 days, and median time from discharge to readmission was 214 days.A small group of 32 patients was referred, reviewed and immediately discharged, and most had a non-malignant diagnosis and were male. The main reasons for immediate discharge was the absence of palliative care needs or the service not being needed or wanted. A third of these patients were later readmitted.
Conclusion: These data show that a substantial proportion of community specialist palliative care service patients are discharged. It raises further research questions around flexible models of care, validated discharge criteria and implementing quality measures on discharge.
Clapham S, Daveson B, Ayalew AA, Draper K, Hartati A, Reed K, et al.
Purpose: Palliative care is delivered across most healthcare settings, yet service capability remains poorly defined, limiting quality improvement. A clearer definition is essential to drive system-wide improvement. This scoping review was undertaken to answer two important questions: What are the key constructs that define palliative care service capability, and how can they inform quality improvement and benchmarking?
Methods: A scoping review, retrieving studies from Medline, PsycINFO, and CINAHL. This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR). Relevant literature published in English from the year 2000 onwards, focusing on palliative care service delivery, standards, quality, and outcomes were included. Data were organised using an evidence map to define service capability and develop a conceptual framework.
Results: Palliative care service capability is defined as the ability of a service to deliver care, shaped by the broader health system and organisation in which the service operates. Four core domains emerged as central to the concept and were mapped against existing standards, quality indicators and clinical frameworks: (1) assessment, planning, and care provision; (2) transitioning patients between services; (3) availability of care; and (4) collaboration and linkages across health services involved in delivering palliative care.
Conclusion: This review provides a definition and conceptual model for palliative care service capability to support quality assessment and facilitate meaningful benchmarking. Integrating this framework into national quality initiatives may help identify gaps in service and system delivery, standardise care processes, and enhance patient-centred outcomes.
Elvidge N, Carter HE, Rolfe M, Smith K, Phillips JL.
Context: Many individuals receiving specialist community palliative care experience unplanned hospitalisations or emergency department presentations. Understanding the reasons for this is essential to developing person-centred solutions.
Objectives: To identify the reasons for unplanned hospitalisations among people receiving specialist community palliative care.
Methods: A PROSPERO (CRD42024495016) registered scoping review reported according to the PRISMA extension for scoping reviews. A search of CINAHL, PubMed, Embase, and Scopus was undertaken for studies published from 2014 to 2025. Two reviewers completed title, abstract and full text screening and data extraction. Extracted reasons for hospitalisation were inductively coded using a content analysis approach, allowing for a descriptive summary of findings.
Results: Thirteen of the 2482 studies identified met the inclusion criteria. Six categories of hospitalisation reason were generated: (1) unrelieved symptoms (16 subcategories), (2) acute event (five subcategories) (3) signs of deterioration, (4) patient or carer distress/fatigue, (5) misunderstanding of the goals of care and (6) other/unknown. Of the sub-categories, dyspnoea (n = 11 studies, 85%), pain (n = 9, 69%), gastrointestinal symptoms (n = 9, 69%) and infection (n = 7, 54%) were the most frequently reported reasons for hospitalisation. Comparative studies (n = 5) of specialist versus usual or no palliative care showed mixed hospitalisation outcomes, with limited statistical detail.
Conclusion: This scoping review provides insight into patterns of hospitalisation, despite variability in data collection methods. This approach provides a foundation for developing targeted service improvements aimed at supporting individuals to stay at home for more extended periods in the last year of life.
Last updated 30 April 2024