Latest Australian research

Burns P, Townend S.

Background: Voluntary assisted dying (VAD) is now a legal option in all Australian states and the Australian Capital Territory (ACT) for patients with a life-limiting illness. As trusted providers of lifelong care, general practitioners (GPs) will be approached by patients and their families seeking information and guidance when considering end-of-life (EOL) options, including VAD.

Objective: This article aims to equip GPs with an understanding of VAD in the Australian context. It outlines key aspects including eligibility criteria, referral pathways and legal requirements. It encourages GPs to consider their own views about VAD prior to encountering a patient, and to support patients and families navigating their EOL journeys.

Discussion: Given the pivotal role GPs have in patient care across the lifespan, including at end of life, it is essential that GPs consider their approach to VAD, as it is likely they will encounter patients or family members interacting with VAD.

Ekberg S, Danby S, Pitt E, Ekberg K, Watts J, Weinglass L, et al.

Objective: To investigate how the presence of multiple parties during paediatric palliative care encounters influences involvement of child patients.

Methods: This mixed-methods observational study analysed 60 video recorded routine clinical encounters within three paediatric palliative care services in Australia. These were classified using a coding scheme that was iteratively developed using conversation analysis methods. Coded data were analysed statistically, with qualitative conversation analysis methods used to explore statistical findings.

Results: Statistical analysis of coded data indicated that child involvement increased when more adults were present during an encounter. The number and role of adults present were associated with child involvement. Clinicians were most involved with child patients when there were at least two clinicians present. Clinician involvement with child patients peaked when multiple clinicians were present and when there was only one adult family member present. When multiple family members were present, the likelihood that children would respond to attempts by adults to involve them increased.

Conclusions: Including multiple clinicians and family members in paediatric palliative care encounters is associated with increased involvement of child patients.

Practice implications: To foster optimal conditions for the involvement of children, multiple clinicians and - where possible - multiple family members should be present during clinical encounters.

Hewitt J, Bonner A, Wardrop R, O'Connor M, Berquier I, Carlini J, et al.

Aim: To identify nurse practitioners' and registered nurses' willingness to participate in voluntary assisted dying, and the factors that influence these decisions.

Design: A cross-sectional design.

Methods: An online survey was disseminated to members of 16 professional nursing organisations and associations between April and August 2024.

Results: Responses from 396 participants were analysed. Most were registered nurses (n = 335, 84.6%), aged between 45 and 64 years (n = 217, 54.8%). Over half of the participants (n = 219, 55.3%) had some knowledge of voluntary assisted dying, and more than two-thirds (n = 274, 69.2%) strongly supported it. Respect for a person's rights (n = 345, 89.8%) and relieving suffering (n = 342, 89.1%) were the main reasons nurses participated. Most nurse practitioner participants would be prepared to assess a person's eligibility for voluntary assisted dying (n = 32, 82.1%) or prescribe a substance (n = 31, 79.5%), if permitted by law. Religion, age and years of experience were characteristics associated with reasons for participation.

Conclusion: In Australia, some RNs and NPs are willing to participate in a range of VAD-related activities. However, in some jurisdictions, nurses' engagement is limited by legislative and policy settings. Reconsideration of nurses' roles may enhance access.

Implications for practice: With appropriate support, nurses can make a valuable contribution to the sustainability of the voluntary assisted dying workforce.

Jessop S, Sankaran H, Sotelo C, Fullbright CD, Finnigan SR, Juhrmann ML, et al. 

Abstract: This article examines persistent care gaps facing adolescents and young adults (AYAs) with sarcoma, focusing on clinical trial access, germline predisposition, and palliative care. Despite overall progress in oncology, AYAs continue to experience lower clinical trial enrollment-the AYA gap-particularly in rare cancers such as sarcoma, which spans pediatric and medical oncology. The creation of the National Cancer Institute's (NCI) National Clinical Trials Network (NCTN) fostered cross-group collaboration, broadened age eligibility, and streamlined trial activation. Early collaborative sarcoma trials highlighted both the promise and structural challenges of this model, and ongoing reforms aim to improve access, especially in community settings. This article also positions sarcoma as a high-yield context for germline cancer predisposition testing. Contemporary sequencing studies show that 10%-20% or more of patients with sarcoma harbor pathogenic germline variants, often undetected by family history-based criteria. This supports a shift from syndrome-driven to tumor-informed genetic evaluation, particularly for AYAs who frequently fall between pediatric and adult testing frameworks. Finally, the importance of early, age-appropriate palliative care is highlighted. AYAs with sarcoma face substantial symptom burden, functional impairment, prognostic uncertainty, and psychosocial distress. Evidence suggests that integrated palliative care improves quality of life, communication, and potentially survival, yet referrals are often delayed. Together, these topics highlight the need for coordinated, developmentally informed, and biologically integrated approaches to optimize outcomes for AYAs with sarcoma.

Marathe SP, Amboli S, Cao J, Betts KS, Karl TR, d'Udekem Y, et al.

Objective: Although the Fontan operation was originally performed as a single-stage procedure, staged palliation is currently the preferred approach. The current study aimed to evaluate the outcomes of the single-stage Fontan operation.

Methods: A bi-national Fontan registry (n=1862) was analyzed to identify patients who underwent a single-stage Fontan operation. These patients were compared with staged Fontan patients in the registry. Atriopulmonary Fontan connections were excluded. The primary composite endpoint was post-discharge Fontan failure, encompassing death, heart transplantation, Fontan takedown or conversion, protein-losing enteropathy, plastic bronchitis, or New York Heart Association functional class III or IV. Other endpoints were early complications, including chylothorax, in-hospital deaths, time to first arrhythmia episode, time to first thromboembolic event, and first cardiac reintervention.

Results: Patients who underwent a single-stage Fontan operation (n=176) were compared with those who underwent a staged Fontan operation (n=1421). Median follow-up for the entire cohort was 11.0 years (IQR: 5.3,17.9 years). The majority of single-stage Fontan operations were lateral tunnel (86%, n=152), which were performed before 2006 (169/176; 96%). There was no difference in freedom from Fontan failure between the two groups (p=0.62) [HR=0.90 (0.60, 1.35)]. Propensity-score matching yielded 262 patients (131 pairs) with similar freedom from Fontan failure (p=0.72). There was no difference between the two groups in early complications or secondary endpoints.

Conclusions: In a large bi-national Fontan population, 11% of patients underwent a single-stage Fontan operation over 48 years. There was no difference in the incidence of freedom from Fontan failure, chylothorax, or reinterventions between patients who underwent a staged or a single-stage Fontan operation.