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.
Bindley K.
Abstract: The ‘equity turn’ continues to unfold within end-of-life and palliative care; bringing recognition that all are not positioned equally in dying, caring and grieving. Historically, the ‘doubly vulnerable’ have been neglected – those made vulnerable as they face the complex sequelae associated with a life-limiting illness, alongside existing disadvantages produced by deficits in the social determinants of health. Dominant models of palliative care service delivery have thus typically evolved to serve a specific positionality, often associated with whiteness, having cancer, strong social support, and adequate financial resources to supplement care. Such positioning not only increases the likelihood of receiving appropriate symptom management, high-quality care and the ability to die in the location of one’s choosing, but shapes experiences of bereavement and support following a death. The bereavement field, including related research, practice and service delivery, has not yet engaged deeply with this equity turn. Experiences of illness, caring and pre-death interactions within settings of health care constitute the substantive focus of empirical equity-oriented inquiry and practice to date. Consideration of political and sociological issues that inflect bereavement is relatively recent, including themes of social justice and inequality. Indeed, there is a significant benefit in generating new knowledge that can help understand how determinants of privilege, marginalisation and disenfranchisement shape lived experiences of bereavement and support.
Bereavement experience is socially, culturally and structurally situated and differentiated. Limited existing work demonstrates that structural vulnerability, a positionality associated with systemic biases and unequal, intersecting social locations such as class, sexual identity, ethnicity and gender, can generate and replicate disadvantage and suffering in bereavement, including forms of financial strain, housing insecurity and poor psychological well-being. Yet reflection on the state of the bereavement field surfaces the functions of dominant theoretical orientations, paradigms and systemic biases with equity implications, that demand critical attention.
Bryant RA, Breukelaar IA, Korgaonkar M.
Abstract: Prolonged grief disorder (PGD) is a psychiatric condition that describes individuals who experience persistent grief reactions characterized by preoccupation with the loss. This review provides an overview of the evidence on neurobiological processes associated with PGD. We propose that, although the neurobiological circuitry of PGD overlaps with that of anxiety and depression, it also involves neural responses that reflect the distinct symptom profiles of people with PGD. Specifically, while recruitment of cognitive control and salience networks is observed across common mental disorders, there is evidence that aberrant neural processes implicated in reward processes and appetitive functions are somewhat distinctive to PGD. We emphasize that methodological limitations suggest caution is needed in interpreting current evidence, and more rigorous research is required to delineate key distinct neurobiological processes of PGD.
Stevens SX, Addo IY, El-Katateny E, Rollins B, Lourenço RA, Booth CM, et al.
Background: People with advanced cancer often invest substantial amounts of time to receive palliative treatments. This has been labelled the 'time toxicity' of cancer treatment. However, stakeholder views on time toxicity are still being established. This study used mixed methods to explore Australian oncologists' perspectives on the time burdens of palliative systemic cancer treatments.
Methods: Semi-structured qualitative interviews were conducted with a convenience sample of gastrointestinal oncologists recruited from one metropolitan and one regional centre, supplemented by online advertising through the Australian Gastrointestinal Trials Group. Themes emerging from initial interviews (n = 8) informed the development of an online survey disseminated to Australian oncologists via professional groups. Qualitative data were analysed using an inductive approach. Survey data were summarised descriptively.
Results: Fifteen oncologists were interviewed, 60% of whom were primarily based in major metropolitan areas. One overarching theme: the value of time, unified four subthemes: (1) contributors to 'time 'toxicity', (2) benefits and uncertainties, (3) time as a decision-modifier, and (4) proposed solutions. Surveyed oncologists (n = 108) expressed broad agreement with the thematic framework in interviews, affirming the importance of time for patients with advanced cancer and supporting strategies to reduce time burdens. However, responses acknowledged the subjectivity of time 'toxicity' to individual patients.
Conclusions: This mixed-methods study establishes Australian oncologists' perspectives on the time toxicity of palliative systemic cancer treatments, identifying potential barriers and opportunities for including discussions of healthcare time into shared decision-making, and systems-level strategies for addressing unwanted healthcare contact time.
Ueno R, Modra L, Warrillow S.
Abstract: Death and dying are significant and impactful, for individuals, families and broader society. For clinical teams working in the intensive care unit (ICU), caring for a dying patient and supporting their family are an important part of their professional role. Australian ICU practice has evolved over several decades to optimise end of life care, so that it is patient centred and adheres to accepted ethical standards as well the established legal framework. In addition to acquiring necessary technical skills, intensivists working in Australia must complete training in advanced communication as well as clinical ethics and are required to maintain competence in these domains for the duration of their professional lives. Important considerations for Australian intensivists managing end of life care include cultural humility, avoidance of assumptions, respectful curiosity, prioritising individual patient values and preferences, and the avoidance of non-beneficial treatments that may simply prolong dying or contribute to suffering. As well as having a legislated legal framework, Australia has endorsed national guidelines developed by relevant the specialist training colleges and intensive care professional societies.
Johnson CE, Dai Y, Bryce L, Joseph N, Arthur B, Thorne K, et al.
Background: With an aging population worldwide, many countries face increasing challenges in delivering quality palliative care in long-term care facilities for older people (LTCFs). In Australia, a Royal Commission into Quality and safety of Aged Care in 2021 highlighted significant gaps in this field. In response, the Palliative Aged Care Outcomes Program (PACOP), a person-centred outcomes framework, was developed to address gaps in identification, assessment and management of palliative care needs in LTCFs.
Objective: To present the development, implementation and early process evaluation of PACOP.
Design: A cross-sectional mixed-methods study with embedded qualitative open-ended questions.
Methods: PACOP was co-designed with sector stakeholders and informed by insights from the Palliative Care Outcomes Collaboration (PCOC)-Wicking trial. Launched in 2022, it comprises two key components: the Profile and Outcomes Collections, supported by national benchmarks, improvement facilitators, training, data and IT infrastructure. A process evaluation, guided by Normalisation Process Theory (NPT), used the NoMAD instrument and open-ended questions to explore healthcare workers’ experiences of the PACOP implementation.
Results: By June 2025, 440 of 2,622 (16.8%) LTCFs in Australia participated in PACOP. Key facilitators included organizational buy-in, leadership support, the train-the-trainer model and improvement facilitators. Participants reported that PACOP improved early identification of residents’ palliative care needs, supported structured care planning and informed service improvement. However, challenges such as workforce instability, inexperienced staff and limited IT integration were identified.
Conclusion: PACOP has achieved substantial uptake and early signs of successful implementation in Australian LTCFs. Continued investment in organizational systems change, tailored training, digital integration, along with responsive benchmarking and feedback mechanisms, are essential to sustaining its implementation and enhancing palliative care quality in LTCFs.
Last updated 30 April 2024