Latest Australian research

Tan B, Freeman-Spratt G, Kasiri H.

Objectives: Identify the indication, route of administration and dose for phenobarbital continuous subcutaneous infusion (CSCI) in palliative sedation therapy (PST).Assess the dosing and continuation of midazolam and levomepromazine in conjunction with phenobarbital.

Methods: This clinical audit examined inpatient phenobarbital CSCI use for PST from January 2021 to April 2024. Data were retrospectively extracted from electronic medical records (n=23).

Results: The most common indication for phenobarbital CSCI was agitation, followed by sedation for non-invasive ventilation withdrawal. Phenobarbital was administered subcutaneously in all cases without adverse systemic or site reactions.The most common loading dose was 200 mg (50-200 mg), and the most common initiating CSCI dose was 800 mg/24 hours (400-1200 mg/24 hours). The maximum dose was 1800 mg/24 hours. The average time to death following start of phenobarbital was 52 hours (4-123 hours). Most patients (n=22) were described as comfortable at death.Before starting phenobarbital CSCI, all patients were on midazolam CSCI (mean dose 50 mg), which was continued in 14 patients. Seventeen patients received levomepromazine CSCI (mean dose 137 mg), which was continued in 12 patients.

Conclusions: Phenobarbital appears to be an effective medication for PST. However, inconsistencies in dosing, concurrent sedative medication use and standardised protocols highlight areas for improvement in clinical guidelines.

Yang E, Kabir A, Rhee J, O'Callaghan C, Barr M.

Abstract: The ageing population and increasing chronic illness pose significant healthcare challenges, including care late in life. Advance care planning (ACP) is an ongoing process of making decisions regarding future health care for patients. This process can include formal completion of an advance care directive (ACD), which is a legally binding document. ACP can improve patient outcomes and satisfaction, but rates are low across Australia. This study assessed the sociodemographic and clinical predictors of individuals engaging with ACP and ACDs using data from the 45 and Up Study cohort in New South Wales.MethodsA cross-sectional cohort study of 28,626 people responded to ACP-related questions in the wave 2 questionnaire of the Sax Institute's 45 and Up Study. ACP completion was recorded if people responded 'yes' to any of the three ACP questions, and ACD was recorded if they responded 'yes' to the ACD question. Poisson regression modelling was used to estimate the prevalence ratio and the 95%CI.ResultsA total of 28,626 people completed the ACP- and/or ACD-related questions, of whom 17,458 (61%) completed ACP and 3744 (13.1%) completed ACD. The predictors associated with an increased likelihood of ACP and ACD completion included having a will, advancing age, being female, having private health insurance, not currently working, and having one or more self-reported medical conditions. Predictors unique to increased overall ACP completion included having a university degree or higher, being married and having a health care concession card (Health Care Card). Being a carer increased ACD rates, whereas being married or in a de facto relationship decreased ACD completion.ConclusionsThese findings could inform interventions aimed at improving ACP uptake by identifying groups that engage less in ACP and provide a basis for future research.

Abasseri M, Hoque S, Caldwell K, Sheahan L, Kochovska S, Agar M, et al.

Background: Hepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.

Aim: This pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.

Design: Patients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.

Results: Twenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'.

Conclusion: There is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.

Broom A, Kenny K, Ehlers N, Byrne H, Good P.

Abstract: Perhaps the most valuable asset in our cultural imaginary is time. Yet, this notion of time-as-asset intensifies, is contested, and is often derailed at the end of life. When faced with death, time can become many things, including both personal and interpersonal asset and liability. Bringing the concept of time and dying into focus, this paper draws on qualitative interviews with 15 people nearing death in an Australian specialist palliative care unit. We examine the normative expectations of time and its unravellings in their lived experiences, findings which are critical given time near death has not been extensively studied. We consider five key themes, 'agency and physical decline across time', 'negotiating the time of death', 'the relational affordances of waiting', 'resisting prognostic time', and 'the cost of waiting', all relations to and in time, that were variously woven through people's accounts of the end of life. These themes highlight connections between time and agency, juxtapositions of swiftness and sometimes interminable slowness, and how busyness and paralysis play crucial roles in the practices of dying. Sitting in stark contrast to the rather typical representation of time as a 'good' to be protected or used 'well', especially close to death, more nuanced accounts of dying-in-time emerge, highlighting tensions, troubles, and vitalities as we all collectively confront the end (of life/time).

Cameron J, Stewart C, Savulescu J.

Abstract: This column discusses the New South Wales Supreme Court decision in H v OL [2024] NSWSC 271. That decision raises a number of issues about how the "best interests" principle is employed in cases where disputes arise about whether life-sustaining treatments should be withheld or withdrawn from children. The column argues that these cases would be better served by adopting the "balance sheet" approach that is employed in England and Wales.