Find out what Australian researchers are publishing in palliative care 

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.

5 February 2024

Improving end-of-life care for people with dementia: A mixed-methods study.

Triandafilidis Z, Carr S, Davis D, Jeong SY, Hensby J, Wong D, Attia J, Goodwin N.

Abstract

Background: Improving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement.

Methods: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.

Results: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.

Conclusions: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.

5 February 2024

'Well, what do you want to do?' A case study of community palliative care programme: 'Heidi's Have a Go'. Omega (Westport).

Stanley MA, Daddow AA.

Abstract

The demand for palliative care has increased in high income countries as mortality in older adults has decreased and life expectancy increased. In this context, the priorities of palliative and end of life care (EoLC) have shifted in Australia, reflected in policy frameworks, national guidelines, service systems and funding models. However, aligning service systems and practice realities with these policy aspirations has been problematic in Australia and elsewhere. The current study investigates the recent implementation of a unique, community palliative care (CPC) programme called Heidi's Have a Go (HHaG) in regional Australia, which seemed to bridge the problematic divide between policy aspirations and practice implementation. Qualitative research was undertaken to examine the programme design and influence from the perspective of programme staff and volunteers. The data generated compelling stories on staff and patient experiences in its first 2 years, achieving service outcomes aligned with current policy and national frameworks and privileging patient voices.

5 February 2024

Introducing palliative care in advanced cancer: A systematic review.

Pointon S, Collins A, Philip J.

Abstract

Background: Negative perceptions about palliative care (PC), held by patients with cancer and their families, are a barrier to early referral and the associated benefits. This review examines the approaches that support the task of introducing PC to patients and families and describes any evaluations of these approaches.

Methods: A systematic review with a systematic search informed by the Preferred Reporting Items for Systemic Reviews and Meta-Analyses guidelines was performed on the online databases MEDLINE, PsychInfo and CINAHL from May 2022 to July 2022. Identified studies were screened by title and abstract, and included if they were empirical studies and described an approach that supported the introduction of PC services for adult patients. A narrative-synthesis approach was used to extract and present the findings.

Results: Searches yielded 1193 unique manuscripts, which, following title and abstract screening, were reduced to 31 papers subject to full-text review, with a final 12 studies meeting eligibility criteria. A diverse range of included studies described approaches used to introduce palliative care, which may be broadly summarised by four categories: education, clinical communication, building trust and rapport and integrative system approaches.

Conclusion: While educational approaches were helpful, they were less likely to change behaviours, with focused communication tasks also necessary to facilitate PC introduction. An established relationship and trust between patient and clinician were foundational to effective PC discussions. A framework to assist clinicians in this task is likely to be multidimensional in nature, although more quantitative research is necessary to establish the most effective methods and how they may be incorporated into clinical practice.

5 February 2024

Potentially burdensome care at the end-of-life for cancer decedents: A retrospective population-wide study.

Mitchell RJ, Delaney GP, Arnolda G, Liauw W, Phillips JL, Lystad RP, Harrison R, Braithwaite J.

Abstract

Background: Variation persists in the quality of end-of-life-care (EOLC) for people with cancer. This study aims to describe the characteristics of, and examine factors associated with, indicators of potentially burdensome care provided in hospital, and use of hospital services in the last 12 months of life for people who had a death from cancer.

Method: A population-based retrospective cohort study of people aged ≥ 20 years who died with a cancer-related cause of death during 2014-2019 in New South Wales, Australia using linked hospital, cancer registry and mortality records. Ten indicators of potentially burdensome care were examined. Multinominal logistic regression examined predictors of a composite measure of potentially burdensome care, consisting of > 1 ED presentation or > 1 hospital admission or ≥ 1 ICU admission within 30 days of death, or died in acute care.

Results: Of the 80,005 cancer-related deaths, 86.9% were hospitalised in the 12 months prior to death. Fifteen percent had > 1 ED presentation, 9.9% had > 1 hospital admission, 8.6% spent ≥ 14 days in hospital, 3.6% had ≥ 1 intensive care unit admission, and 1.2% received mechanical ventilation on ≥ 1 occasion in the last 30 days of life. Seventeen percent died in acute care. The potentially burdensome care composite measure identified 20.0% had 1 indicator, and 10.9% had ≥ 2 indicators of potentially burdensome care. Compared to having no indicators of potentially burdensome care, people who smoked, lived in rural areas, were most socially economically disadvantaged, and had their last admission in a private hospital were more likely to experience potentially burdensome care. Older people (≥ 55 years), females, people with 1 or ≥ 2 Charlson comorbidities, people with neurological cancers, and people who died in 2018-2019 were less likely to experience potentially burdensome care. Compared to people with head and neck cancer, people with all cancer types (except breast and neurological) were more likely to experience ≥ 2 indicators of potentially burdensome care versus none.

Conclusion: This study shows the challenge of delivering health services at end-of-life. Opportunities to address potentially burdensome EOLC could involve taking a person-centric approach to integrate oncology and palliative care around individual needs and preferences.

5 February 2024

The role of law in end-of-life decision-making in emergency departments and intensive care units: A retrospective review of current practice in a Queensland health service.

Hewitt J, Alsaba N, May K, Cartwright C, Willmott L, White BP, Marshall AP.

Abstract

Objective There is limited evidence about how legal frameworks that underpin end-of-life decisions are applied in practice. This study aimed to identify how end-of-life decisions are made and documented in emergency departments and intensive care units. The secondary aim was to explore the extent to which the legal processes featured in these decisions. Methods A retrospective chart audit of 85 adult patients who died in the emergency departments and intensive care units of a Queensland health service was undertaken. Quantitative data were analysed and reported using descriptive statistics. Qualitative textual data were analysed using inductive content analysis. Results Nearly all admissions were unplanned (97.6%), and most patients (74.1%) were admitted from home. Only one patient had an advance health directive, although all had an eligible substitute decision-maker. The qualitative analysis revealed two main concepts - 'healthcare professionals choreograph the end of life' and 'patients and families are carried on an unplanned journey'. Conclusions There was limited documentation related to the application of the legal framework in these decisions. Healthcare professionals relied on their clinical judgment about what was in the best interest of the patient. It was common for there to be a substantial effort to achieve consensus in decision-making which coincidently complied with the law.

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Last updated 16 January 2024