Latest Australian research

Grove GL, Lovell MR, Butow P, Hughes I, Best M. 

Objectives: This study explored Australian palliative care clinicians' perspectives on the legalization of voluntary assisted dying (VAD), aiming to identify variables associated with clinicians' views and understand challenges of its implementation.

Methods: An online survey exploring support for legalization of VAD was sent to palliative care clinicians in Queensland and New South Wales and followed up with semi-structured interviews. Support was categorized as positive, uncertain, or negative. An ordinal logistic regression model was used to identify variables independently predictive of euthanasia support. Interviews were analyzed using grounded theory to understand key concepts shaping views on VAD.

Results: Of 142 respondents, 53% supported, 10% were uncertain, and 37% opposed legalizing euthanasia for terminal illness with severe symptoms. Support was lower for patients with chronic illness (34%), severe disability (24%), depression (9%), severe dementia (5%), and for any adult with capacity (4%). The model showed lower support among doctors than nurses (38% vs. 69%, p = 0.0001), those in New South Wales compared with Queensland (44% vs. 69%, p = 0.0002), the highly religious versus least religious (24% vs. 79%, p = 0.00002), those politically conservative versus progressive (39% vs. 60%, p = 0.04), and those with more healthcare experience (p = 0.03). Seventeen interviews revealed 2 distinct groups: one focused on the event of death and the need to relieve suffering, providing comfort in the final moments; the second on the journey of dying and the possibility of discovering peace despite suffering. Those in the first group supported legal VAD, while those in the second opposed it. Despite opposing views, compassion was a unifying foundation common to both groups.

Significance of results: There are 2 fundamentally different orientations toward VAD among palliative care clinicians, which will likely contribute to tensions within teams. Acknowledging that both perspectives are rooted in compassion may provide a constructive basis for navigating disagreements and supporting team cohesion.

Jahan S, Lindsay D, Diaz A, Li M, Cunningham J, Garvey G.

Objective: To quantify costs incurred by the health system for hospital episodes and emergency department (ED) presentations for pancreatic cancer patients within the first three years after diagnosis in Queensland, Australia.

Study settings and design: Using a linked administrative dataset, CancerCostMod, which includes cancer diagnoses from the Queensland Cancer Registry (1st July 2011-30th June 2015) and linked Queensland Health Admitted Patient Data Collection and ED Information Systems records (1st July 2011-30th June 2018), we assessed costs for adults diagnosed with primary pancreatic cancer (International Classification of Diseases, 10th Revision: C25). Costs (in Australian dollars) were assigned using national public costs and private hospital charge datasets for the relevant year. Descriptive analyses were conducted to evaluate hospital and ED utilization and costs. Cost variations across sociodemographic and clinical characteristics were assessed using Kruskal-Wallis or Mann-Whitney U tests.

Principal findings: Among 2082 individuals diagnosed with pancreatic cancer, hospital episodes (n = 26,405) in the first three years after diagnosis cost a total of $100.7 million; median cost per patient was $36,832. For ED presentations (n = 4228), corresponding figures were $3.6 million (total) and $963 (median per patient). Most of the total hospital (81%) and ED (79%) costs occurred in the first year after diagnosis. Patients who survived ≤ 6 months had the lowest median cost per patient but accounted for 38% of total hospital costs. Median cost per patient varied substantially by socio-demographic (i.e., Age groups, Indigenous status, socio-economic disadvantages) and clinical characteristics (i.e., comorbidity, cancer morphology, location of tumor, tumor resection, palliative care).

Conclusions: Our findings highlight the significant economic burden of pancreatic cancer on the healthcare system, especially within the first year. Targeted strategies are essential to optimize healthcare delivery, ensure equitable access, and improve outcomes.

Marston C, L'Etang M, Philip J, Morgan DD, Edbrooke L, Chang S, et al.

Objectives: Carers are critical to support discharge home from hospital at end of life yet remain under-represented in health service initiatives to assist this transition. A carer-focused intervention embedded into practice may facilitate hospital discharge. This open-labeled, single-arm phase 2 study aimed to determine the feasibility of (1) delivering a multi-staged intervention (CARENET) to carers of advanced cancer patients in a hospital setting and (2) the study design to inform a phase 3 trial.

Methods: CARENET, delivered before and after discharge to address carer support needs, was tested in an Australian specialist cancer hospital. Eligible participants included carers of advanced cancer inpatients with planned discharge home. The primary outcome was intervention and trial feasibility (recruitment and adherence). Secondary outcomes were eligibility and effects of intervention on outcomes including carer preparedness.

Results: Of the 382 potential patient-carer dyads, 25 were recruited within required time frames. The intervention adherence outcome feasibility threshold of 80% of carer participants completing all 3 core components of CARENET was not achieved (60% completion). Trends in improvement in overall carer levels of preparedness were observed from baseline to discharge home (n = 12; mean [95% CI]) 0.5 [-0.0007, 1.007]). However, a downward trend in preparedness to provide emotional care after discharge was observed (n = 12; mean [95% CI] 0.25 [-0.30, 0.80]).

Significance of results: Delivering all elements of the CARENET intervention to address carers' needs in the discharge planning context was not feasible. However, some elements were feasible, including identifying and responding to carer need, whilst completing elements after discharge were less feasible. Findings can be explained by problems with adherence, eligibility, and clinician barriers to fitting a multi-staged carer intervention into an acute healthcare setting. Future research should test a more adaptable intervention and delivery model that is accessible to all carers across and compatible with acute care settings.

Pawlik O, Cowan T, Miller A.

Abstract: Generalised Bullous Fixed Drug Eruption (GBFDE) is a subtype of Fixed Drug Eruption (FDE) characterised by the development of generalised blisters on the background of dusky macules. There is no gold standard treatment, but the condition is conventionally managed with supportive care, topical and oral steroids and occasionally ciclosporin. We describe the case of a 75-year-old female with GBFDE, who demonstrated a rapid halt in disease progression and re-epithelialisation following a single dose of etanercept. This case highlights the potential role of etanercept in the management of GBFDE.

Plazina J, Melville M, Collie LA, Cooke L, August D. 

Background: Newborn infants represent a significant percentage of childhood deaths (>60%) with over 90% of newborn end-of-life care taking place in an acute hospital setting. This is in direct contrast to adults and children where specialised hospital or hospice care is used during their palliative care experience. To support family choice, a neonatal retrieval service developed a new model of care to transfer babies from a hospital to a hospice, a hospital closer to home or a private residence for palliative care while being cuddled by a parent.

Aim: Identify and evaluate (i) service workflows, (ii) clinical characteristics of babies, (iii) safe and effective experiences, (iv) processes required and (v) personnel for kangaroo cuddle transport for end-of-life care.

Study design: Service evaluation utilising the Plan-Do-Study-Act (PDSA) cycle with outcomes grouped in five pragmatic domains: (i) workflow establishment, (ii) service population (clinical characteristics), (iii) safe and effective experiences, (iv) process and equipment and (v) personnel. Safety measures were assessed with individual PDSA cycles after each transfer, including referring and receiving service acceptability. Outcomes were reported in descriptive frequency.

Results: Of 21 cases, 13 families elected to cuddle for transfer. Most neonates were term gestation (n = 9, 69%) and were greater than 1200 g (n = 13, 100%). Care provided included Paediatric Acute Resuscitation Plans (100%), mechanical ventilation (n = 7, 54%), oxygen supplementation (n = 4, 31%) and subcutaneous vascular access devices (n = 9, 69%). No adverse events occurred. Qualitative staff feedback was universally positive. Median preparation time was 0.5 h (range: 0.25-1.4), and transport time was 4 h (range: 2.75-12).

Conclusion: Babies being transferred for palliative care can be safely managed while receiving kangaroo cuddle, with the support of an experienced neonatal transfer team.

Relevance to clinical practice: This model of transport demonstrates an effective and meaningful additional service for neonatal patients requiring end-of-life care. Further evaluation is required for more preterm neonates, as transport and service requirements may be increasingly complex for this population.