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.
Juhrmann ML, Vandersman P, Damarell RA, Khamis Sharaf A, San Martin A, Donkor A, et al.
Background: Intergenerational co-residence has historically been prevalent. Recent financial pressures, increasing caregiving responsibilities and ageing populations have led to a resurgence of this arrangement, particularly in end-of-life care. However, understanding of its influence on care quality across cultures remains limited.
Aim: To explore how intergenerational co-residence affects emotional, practical, and cultural dimensions of palliative and end-of-life care across different settings, and to identify key themes shaping caregiving roles, decision-making, and support needs in these households.
Design: Systematic integrative review and thematic synthesis based on Braun and Clarke's approach and using the Convoy Model as a theoretical framework.
Data sources: Six major databases were searched from inception to 22 May 2023 and updated to 8 June 2025. Eligible papers reported empirical studies on end-of-life care in intergenerational co-residence and were appraised using the Mixed Methods Appraisal Tool.
Results: Three themes were constructed from seven studies from China, South Africa, Spain, Uganda, Turkey and the United States. These were: responding to an end-of-life diagnosis, with limited death literacy delaying care; identifying systems of support, where caregiving burdens often fell on women; and concluding the journey and saying goodbye.
Conclusions: Intergenerational co-residence can foster support at the end of life, yet it may also reinforce gendered caregiving roles that disproportionately burden women. Effective integration of formal support services with family caregiving remains important in alleviating pressures and promoting equitable care models, highlighting the need for culturally sensitive interventions that address the diverse needs of families, while encouraging collaborative caregiving approaches.
Kelly JJ, Griffin KA, Vemuri S, Sacks B, Lee S.
Background: There is a lack of evidence to guide the administration of phenobarbital for managing refractory symptoms in paediatric palliative care patients at home during the terminal phase.
Case presentation: Three terminal home-based paediatric cases with refractory symptoms that caused significant distress to both the child and family during the final days of life. All three cases had several changes in medications before receiving phenobarbital.
Case management: The first case had a loading dose of phenobarbital based on an adult guideline; the second case commenced a continuous phenobarbital infusion without a loading dose of phenobarbital; and the final case had a weight-based loading dose.
Case outcome: In the absence of paediatric clinical guidelines for the use of phenobarbital in refractory symptom management, a weight-based loading dose of phenobarbital before commencing a continuous infusion provided enhanced symptom management when compared with a loading dose using adult guidance or the absence of one.
Conclusion: Further research is needed on the administration of a loading dose of phenobarbital for managing terminal refractory symptoms in the paediatric palliative care population during the terminal phase. This will help to establish evidence-based guidelines for paediatric palliative sedation, ensuring appropriate relief of refractory symptoms for a peaceful death at home.
Luitingh TL, Prentice TM, Rowe J, Rotin L, Heywood M, Vemuri S.
Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child's death. Although memory making practices are established in end-of-life care, it remains uncertain how memory making interventions are experienced by families during bereavement.
Aim: This study aims to provide evidence-based insights into the memory making experiences of parents during neonatal and paediatric bereavement care.
Design: This is an exploratory descriptive mixed-methodology study using a Melbourne-based cross-sectional electronic-survey.
Setting/ participants: Thirty-three bereaved parents participated in this study. All families were known to the Neonatal Intensive Care Unit and/or the Victorian Paediatric Palliative Care Program at The Royal Children's Hospital. This study captures the experiences of bereaved parents whose children died between 1 January 2018 and 31 December 2020.
Results: The majority of parents who took part in memory making activities had a positive experience. Parent responses came together across four themes: (1) Experiential memory making is emotionally challenging but rewarding, (2) Physical memory making keeps the child real and part of the family, (3) Regret over missed opportunities and (4) Catering to individual needs.
Conclusion: Personalised provisions of love and care were dignities parents could warmly reflect back on during their bereavement. Importantly, tailoring memory making practices to the unique needs of the family and the dying child ensures both have their needs acknowledged and met.
Lussier S, Jones C, Thornhill S, Serpa Neto A, Jones D.
Abstract: Little is known about the characteristics of potentially inappropriate or unnecessarily prolonged intensive care unit (ICU) admissions in Australia, nor the exposure rate of non-ICU clinicians to dying ICU patients. We conducted a single-centre retrospective cohort study at a university-affiliated hospital in Victoria, Australia, of patients admitted to the ICU between January 2022 and June 2023, who transitioned to end-of-life care during their ICU admission. Decisions regarding appropriateness were adjudicated during a bi-weekly morbidity and mortality meeting. Out of 287 patients 279 were included in the final analysis. One hundred and eight (39%) patients were deemed to have had a potentially inappropriate admission, and 37 (13%) were deemed to have had a potentially inappropriately prolonged admission. Significantly higher proportions of patients were admitted from either the ward (32.4% versus 22.4%, P=0.02) or another hospital (15.7% versus 6.4%, P=0.02) if they were deemed to have had a potentially inappropriate admission. Significantly higher proportions of patients deemed to have had a potentially inappropriately prolonged admission had treatment limitations (16.2% versus 40.5%, P=0.006), lower Australian and New Zealand Risk of Death scores (median score 27.2 versus 45.5, P=0.006) and a clinical frailty score of 5 or more (63.9% versus 45.1%, P=0.048). They also had a significantly longer median ICU length of stay (median length of stay 13.4 days versus 2.6 days, P <0.001) and received significantly higher rates of invasive supports such as tracheostomy (16.2% versus 1.2%, P <0.001). The four major themes linked to these admissions were 1) lack of planning/appropriate treatment limitations, 2) lack of recognition of dying, 3) issues with communication/consensus and 4) provision of highly invasive treatments. The median rate of exposure of individual ward-based clinicians was 1 dying ICU patient per 18 months. Early framing of goals of care, reassessment of treatment goals during an ICU admission, dedicated communication skills training, and embedded frailty assessments might reduce non-beneficial and prolonged ICU admissions.
Seah DSE, Lujic S, Chang S, Currow DC, Eagar K.
Background: Community Palliative Care Services, a limited resource, helps patients spend as much time at home as possible by managing their symptoms and supporting caregivers in the community.
Aim: To describe the characteristics of patients discharged alive from the Community Palliative Care Services and to determine the outcomes of those discharged alive, including overall survival, subsequent place of death, and health service use.Design, setting/participants:Linked administrative clinical data were analysed for all adults discharged from an Australian metropolitan Community Palliative Care Services in Sydney between July 2010 and September 2018. That data comprised death records, ambulance, emergency, and hospital admissions. Factors associated with 30-day re-presentation to these services after discharge from the Community Palliative Care Services were examined using logistic regression.
Results: Of 5270 community patients, 20% (n = 1095) were alive at discharge. The median follow-up after the first discharge was 259 (95% CI 214-287) days, with 40% (n = 454) of these having a subsequent community palliative care referral. Six hundred and sixty-four (61%) died within a year of discharge, and 45% (n = 495) died in the community. Patients who lived in private residences and who had a malignant disease had higher odds of 30-day hospital re-presentation.
Conclusion: As the demand for Community Palliative Care Services increases, delivering equitable and efficient services to patients with palliative care needs becomes challenging with limited resources. Factors associated with hospital readmission shortly after discharge from the Community Palliative Care Services should be further explored to determine interventions that may support patients and families in their illness trajectory.
Last updated 30 April 2024