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.
Butler AE, Bloomer MJ.
For decades, paediatric intensive care unit (PICU) clinicians have aimed to provide a “good death” for children and families. A good death in PICU is thought to occur when the child is free from pain and suffering, and there is a supportive environment for the child and their family. PICU researchers and clinicians commonly describe a good death as one that acknowledges parental and family roles, reciprocal trust between the family and the PICU healthcare team, accessible information, optimal bedside care, compassionate staff, and support for individual child and family child needs.
However, the notion of the good death in the PICU, and in paediatric care more generally, has been the subject of recent debate, questioning its positionality and appropriateness. Acknowledging that views on the goodness of death likely differ according to social, cultural, religious and educational factors, greater clarity is needed in who the death is good for. Good death narratives are commonly driven by clinicians and researchers, who value the perception of comfort that a good death may bring when active therapy has not worked. However, it is important to note that the notion of a good death primarily serves the needs of clinicians, rather than parents and families, who may never view their child’s death as good.
Dharmagunawardene D, Kularatna S, Halahakone U, Purtell L, Bonner A, Healy HG, et al.
Introduction: Kidney failure can be managed either conservatively or via kidney replacement therapy. Kidney supportive care combines the expertise of nephrology with palliative care in a multidisciplinary team with a focus on improving quality of life.
Objective: To identify and appraise evidence-based health system kidney supportive care interventions DESIGN: Systematic review (PROSPERO Registration - CRD42022333650).
Participants: Adults with chronic kidney failure.
Measurements: Six databases were searched, using terms "palliative care" and "chronic kidney disease" for publications between January 2010 and March 2024. The Cochrane "Effective Practice and Organisation of Care" and "Clinical Practice Guidelines for Quality Palliative Care" domains informed data extraction.
Results: Of the 60 studies included, one-third were randomised controlled trials. The most common "Effective Practice and Organisation of Care" domain described was care delivery (58/60). End-of-life care (33/60), and physical aspects of care (19/60), were commonly described "Clinical Practice Guidelines for Quality Palliative Care" domains. Multidisciplinary shared care was highlighted in 26 studies. Least described domains were cultural (0/60) and ethical aspects (3/60). Almost 2/3 (39/60) of studies compared the outcomes of kidney supportive care interventions, and the most common outcome assessed was advance care planning (18/39). Key findings reported integrated palliative care reduced hospital admissions and costs, facilitated better patient-clinician communication, and improved symptom management. Gaps were identified in cultural and ethical/legal aspects of care.
Conclusions: The studies highlighted the effectiveness of kidney-supportive care interventions in improving patient outcomes, especially in end-of-life care and symptom management. However, significant existing gaps identified necessitate further research.
Roche N, Darzins S, Oakman J, Stuckey R.
Abstract: Workers employed in clinical healthcare settings often encounter dying and death of patients as a part of their role. This scoping review aimed to explore the physical and psychosocial OHS impacts on health workers exposed to death within their occupational role and their inherent coping strategies. Six electronic databases PsycINFO (Ovid), Medline (Ovid), AMED (EBSCO), CINAHL (EBSCO), and Proquest Social Sciences were searched for peer reviewed research articles published between March 1971 and April 2022. PRISMA-ScR guidelines were followed. Three authors independently assessed articles for inclusion. Fifty-three studies with focus settings in hospitals, hospice, general practice and residential care were identified. Five main themes were developed and organized using and ergonomic systems approach: Cultural Environment, Workplace, Job Demands, Impacts and Coping. The findings demonstrate that caring for dying patients, the dead and their families in clinical settings impacts workers emotionally, physically, behaviorally and spiritually.
Carter D, Moodie S, Reddi B, Yeo N, Laver H, Sundararajan K.
Abstract: Since 2018, DonateLife South Australia and the Royal Adelaide Hospital (RAH) have collaborated to deliver routine family follow-up after bereavement in the intensive care unit (ICU). This follow-up includes a telephone interview that invites bereaved family members to comment on the quality of care and communication experienced in the ICU. To identify bereaved families' experiences, including how they conceptualise good care and communication in intensive care, an analysis was conducted on all qualitative data collected during 118 interviews completed between 1 February 2018 and 30 May 2019. Reflexive thematic analysis was undertaken in an inductive and semantic way, with coding and theme generation being directed by the explicit content of the data, as conceptualised by Braun and Clarke. Initial codes were based on the interview questions, then additional codes were created during data analysis. Coding was informed by philosophical insights about concepts and the spirit of interpersonal engagement developed by Wittgenstein and Cordner, respectively. A concept map of the relationships observed between patterns of meaning in the data was created. Participants deeply appreciated staff providing them and their loved one with practical expressions of care and hospitality, however modest. These, along with staff sometimes crossing professional boundaries, expressed staff's spirit of engagement, which in turn helped to maintain the patient's dignity. Private space also helped to maintain the patient's dignity, and it helped family to have enough time to say goodbye. Family not feeling rushed and being informed about their loved one dying also helped family to have enough time to say goodbye. Being informed depended on the quality of doctors' communication. When family were not clearly informed, or had to wait long periods, they felt rushed and that they did not have enough time to say goodbye. Documents written to guide the assessment of intensive care comment on almost all of these matters, but the present study newly maps how they interact based on the extensive empirical evidence that it collected. Guidance documents should comment on giving staff scope to occasionally traverse a boundary, such as an institutional border or rule, to better support the patient and family, since families experience exceptionless practice insensitive to context as callous or disruptive of care.
Lovell T, Mitchell M, Powell M, Strube P, Tonge A, O'Neill K, et al.
Background: The provision of end-of-life care (EOLC) is an ongoing component of practice in intensive care units (ICUs). Interdisciplinary, multicomponent interventions may enhance the quality of EOLC for patients and the experience of family members and ICU clinicians during this period.
Objectives: This study aimed to assess the impact of a multicomponent intervention on EOLC practices in the ICU and family members' and clinicians' perceptions of EOLC.
Methods: A before-and-after interventional study design was used. Interventions comprising of EOLC guidelines, environmental and memory-making resources, EOLC education day for nurses, web-based resources, and changes to EOLC documentation processes were implemented in a 30-bed adult tertiary ICU from September 2020 onwards. Data collection included electronic health record audits of care provided post initiation of EOLC and family and clinician surveys. Open-ended survey questions were analysed using content analysis. Data from before and after the intervention were compared using the Chi-squared test for categorical variables, unpaired two-sample t-tests for normally distributed continuous measurements, and Mann-Whitney U tests for non-normally distributed data.
Findings: A reduction in documented observations and medications and an increased removal of invasive devices unrelated to EOLC were observed post the intervention. The mean overall satisfaction of family members improved from 4.5 to 5 (out of 5); however, this was not statistically significant. Statistically significant improvements in clinicians' perception of overall quality of EOLC (mean difference = 0.28, 95% confidence interval: 0.18, 0.37; t282 = 5.8, P < 0.01) were found. Although statistically significant improvements were evident in all subscales measured, clinicians' work stress related to EOLC and support for staff, patients, and their families were identified as needing further improvement.
Conclusions: The development and implementation of a multicomponent interdisciplinary intervention successfully improved EOLC quality, as measured by chart audit and family and clinician perceptions. Continuing interdisciplinary collaboration is needed to drive further change to continue to support high-quality EOLC for patients, families, and clinicians in the ICU.
Last updated 30 April 2024