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.
Dadich A, Crawford G, Laintoll P, Zangre I, Dahal K, Albrezi D, et al.
Introduction: Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities.
Methods: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis.
Results: The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war-torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life-limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network.
Conclusion: This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH-VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population-based and person-centred approach to care.
Patient or public contribution: Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co-researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.
Juhrmann M, Butow P, Platts C, Boughey M, Simpson P, Clayton JM.
Objectives: Paramedics have the potential to make a substantial contribution to community-based palliative care provision. However, they are hindered by a lack of policy and institutional support, as well as targeted education and training. This study aimed to elicit paramedics', palliative care doctors' and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' attitudes and perspectives on how palliative paramedicine can be improved to better suit the needs of community-based patients, their families and carers, and the clinicians involved in delivering the care.
Design: In this qualitative study underpinned by a social constructivist epistemology, semistructured interviews were conducted.
Setting and participants: 50 participants with palliative paramedicine experience, from all jurisdictions of Australia. Participants were interviewed between November 2021 and April 2022.
Results: All participants suggested paramedics play an important adjunct role in the provision of palliative and end-of-life care in home-based settings. Three levels of opportunities for improvement were identified: macrolevel (policy and frameworks; funding and education; accessing medical records and a widening scope); mesolevel (service-level training; interprofessional understanding and communities of practice and community expectations) and microlevel (palliative care subspecialty; debriefing and self-care and partnering with families).
Conclusion: To enhance paramedic capacity to provide palliative care support, improvements targeting systems, services, communities and individuals should be made. This calls for stronger inclusion of paramedicine in interdisciplinary palliative care and greater investment in both the generalist and specialist palliative paramedicine workforce.
Kinsman LD, Mooney G, Whiteford G, Lower T, Hobbs M, Morris B, et al.
Background: An advance care plan outlines a patient's wishes regarding medical treatment or goals of care in the case that they become unable to communicate or to make decisions. An advance care directive (ACD) is an advance care plan that has been formally recorded and has legal status. Despite ACDs playing an important role in person-centred end-of-life care, an earlier retrospective medical records audit demonstrated that only 11% (58/531) of people who died due to a terminal illness had an ACD.The aim of this project was to increase the proportion of patients with a terminal illness completing an ACD. A secondary outcome was to measure the impact of ACDs on hospital and intensive care unit (ICU) admissions in the last 6 months of life.This multifaceted project comprised (1) education for health professionals and the public; (2) individual support for patients on request; (3) development of online resources for health professionals and the general public; and (4) monthly team meetings.
Method: The proportion of ACDs completed and hospital and ICU admissions during the last 6 months of life, were extracted via medical record audits.Written consent was required for patients to participate, including being contacted by the project team and accessing their medical records.
Results: 112 patients consented to participate in the project and 109 (97%) completed an ACD. There was no reduction in the average number of hospital admissions, while ICU admissions reduced from 14% (n=74) to 0%.
Conclusion: The targeted, multifaceted approach to education and support for completion of ACDs, resulted in a significant increase in ACD completion and a major reduction in ICU admissions.
Perera M, Halahakone U, Senanayake S, Kularatna S, Parsonage W, Yates P, et al.
Background: Palliative care and supportive care provided in the home for people with heart failure can improve quality of life, caregiver wellbeing and reduce healthcare costs. Identifying components of home-based palliative and supportive care in heart failure is useful to inform tailored care to people with heart failure.
Aim: To identify and describe components of home-based palliative and supportive care in adults with heart failure.
Design: A scoping review was undertaken in accordance with Joanna Briggs Institute guidelines. The protocol was registered prospectively with the Open Science Framework (https://doi.org/10.17605/OSF.IO/GHCME).
Data sources: Embase, PubMed, CINAHL and Cochrane databases were searched from inception in May 2023 and re-run in January 2024. Original research focussed on palliative and supportive care in the home setting that included adults diagnosed with heart failure who have not undergone nor awaiting a heart transplant was included.
Results: Results were extracted from 13 papers based on eight studies. The findings highlight that nurses supported by a multidisciplinary team, providing symptom management, patient and carer education and discussion of goals of care and advance care planning, facilitates home-based palliative and supportive care for people with heart failure.
Conclusion: Ensuring patient and caregiver-centred care supported by a multidisciplinary team is essential to delivering home-based palliative and supportive care for people with heart failure. Further research focussed on the role of digital interventions in home-based palliative and supportive care, the composition of the multidisciplinary team and research which includes individuals across all stages of heart failure is needed.
Sundararajan K, Raith E, Hu R, Damarell RA, Subramaniam A, Anderson N, et al.
Objective: Protocol to explore what is known about communication between critical care providers and patients and families from culturally and linguistically diverse backgrounds (defined as people who are either from minority ethnic groups, non-English-speaking backgrounds who may have diverse cultural, linguistic, spiritual and religious affiliations and opinions) about death, dying, end-of-life care and organ donation in the intensive care unit (ICU).
Introduction: Patients from culturally and linguistically diverse backgrounds experience barriers to optimised care when admitted to the ICU. These barriers appear to derive from differences in language, cultural, societal and ethical expectations between patients, their families and healthcare professionals. These barriers may significantly impact the delivery of end-of-life care to patients from culturally and linguistically diverse backgrounds. Therefore, this has the potential for inadequate management of medical, psychological and existential distress.
Inclusion criteria: Studies of all designs reporting for adult (age ≥18 years) patients and family members from culturally and linguistically diverse backgrounds at end-of-life in the ICU setting will be included. Studies that report results for patients aged <18 years or that are based outside the ICU will be excluded.
Methods: Relevant sources will be retrieved, and their citation details will be imported into the Joanna Briggs Institute (JBI) System for the Unified Management, Assessment and Review of Information. This scoping review was guided by the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A systematic search was conducted in EBSCOhost, Web of Science, PubMed Central and SciELO, OVID Medline, CINAHL, and Scopus, limited to English-language publications, without date limitation. Key study characteristics and findings will be extracted using a data extraction tool developed by the reviewers. Anticipating heterogeneous study designs, findings will be presented as a thematic synthesis.
Ethics and dissemination: This is a protocol for a scoping review, formal ethics approval from the Human Research Ethics Committee (HREC) of the Local Health Network will be obtained for research projects that could potentially stem from this review and will then be subsequently disseminated through proper channels.
Last updated 30 April 2024