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.
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.
Feeney R, Willmott L, White B.
Abstract: The law plays an important role in governing end-of-life decision-making in paramedic practice. A scoping review was undertaken to identify and examine the extent, range and nature of literature on the legal issues relevant to end-of-life clinical practice for Australian paramedics. Documents (scholarly works and/or policies) were identified by searching electronic databases, Google Scholar, professional organisation and State/Territory health department websites, scanning reference lists and drawing on authors' existing knowledge. Sixteen of the 22 documents identified were policies, including clinical practice guidelines or similar documents from the various State/Territory Ambulance services, and policies from State/Territory Health Departments or resuscitation organisations. Common legal issues were consent to treatment, decision-making capacity, withholding and withdrawing life-sustaining treatment, advance care planning, substitute decision-making, emergency treatment and children and end-of-life decision-making. Gaps included documents focusing on paediatric clinical practice and broad practice guidelines on end-of-life care for paramedics working in some jurisdictions.
Grove GL, Lovell MR, Hughes I, Maehler E, Best M.
Background: Discussions about euthanasia and physician-assisted suicide (EAS) involve various stakeholders, including patients, healthcare professionals and the general public. This review examines perspectives across different population subgroups to contribute to a broader understanding of EAS attitudes.
Methods: A systematic review of literature published prior to July 2023 with quantitative data about EAS views was undertaken. Details extracted from eligible papers included data year, geography, demographic features of population subgroups and levels of support for EAS under various circumstances. Proportions in support for EAS were calculated based on these factors. Meta-analyses were conducted to estimate changes in the proportion of support for euthanasia dependent on the presence or absence of pain or terminal illness in patients.
Results: The search identified 521 relevant studies. There were 1863 relevant survey questions with 1 945 945 individual responses, spanning years 1936 to 2023.478 studies explored whether EAS should be allowed, 134 examined clinician willingness to practise EAS and 78 investigated which persons might seek EAS. Clinician views were surveyed in 266 studies, public opinion in 139 and patient beliefs in 54.Support for EAS across studies and subpopulations varied widely. Mean support for EAS was lower in doctors than in the general public (25% compared with 55%). Support varied depending on access criteria to EAS with 54% support for patients in pain vs 36% for those without and 53% for terminally ill patients vs 29% for those without a terminal illness. Public support for EAS was lower in religious people, females, older people and African Americans.
Conclusions: Support for EAS varies widely across studies, with numerous demographic and situational factors associated with differing levels of support. This indicates a complex interplay of elements is involved in the formation of EAS beliefs. Understanding these factors is valuable for facilitating meaningful discussions among clinicians and the community and informing policy debates and decisions.
Last updated 30 April 2024