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.
Fernandes BR, Newton JA, Betts K, Sheehan C.
Background: Patients with end-stage heart failure experience a significant symptom burden that is often poorly controlled. Although palliative care can improve symptom management and reduce hospital admissions, many patients still die in acute care settings. The unpredictable course of end-stage heart failure complicates the identification of patients who would benefit from early palliative care referral. To address this challenge, an integrated cardiac supportive care service was developed to engage these patients early, optimise symptom control, and ensure timely access to palliative care.
Aim: The aim of this study is to document the symptom burden, using Patient-Reported Outcome Measures, for patients with end-stage heart failure on admission to the cardiac supportive care service.
Method: A prospective observational study was undertaken in a tertiary hospital service in Sydney, Australia between January 2020 and July 2022. Patients were included if they had a recent admission for heart failure or had heart failure with breathlessness or chest pain at rest or on minimal effort. The cardiac supportive care service, consisting of initial home visits and follow-up reviews conducted by a palliative care physician and cardiac nurse practitioner, collected information using the Dyspnoea-12 (D-12) Questionnaire and the Integrated Palliative Care Outcome Scale (IPOS). Symptom scores from these tools were analysed in relation to patient mortality, with Kaplan-Meier survival curves and Cox regression used to assess the association between symptom burden and time to death.
Results: A total of 114 patients were included in this study. Both the IPOS and D-12 scores indicated a substantial and clinically relevant symptom burden for this cohort of patients. High mean scores on the IPOS were observed for weakness (2.6, standard deviation [SD] 1.2), shortness of breath (2.6, SD 1.2), and sore/dry mouth (2.5, SD 1.3). Sore/dry mouth was the most frequent severe or overwhelming symptom (59%). The D-12 showed that descriptors of breathlessness most commonly rated as severe were "My breathing is exhausting" (40%), "My breathing is distressing" (39%), and "I feel short of breath" (38%). Patients with an IPOS score in the highest quartile had an elevated mortality risk. The survival of patients in this cohort was 17.1 months.
Conclusions: Patients with end-stage heart failure experience a substantial and frequently severe symptom burden, including breathlessness, dry mouth, and weakness. This study demonstrates the significant unmet need in this patient population and highlights the opportunity for integrated and proactive palliative care, delivered through a cardiac supportive care service. This model of care can optimise symptom management, facilitate advance care planning, and ensure timely referral to palliative care.
Lewis S, Franklin M, Newton G, Kenny K, Boyle F, Smith A.
Abstract: Understandings of living well with incurable, life-limiting disease are limited. This article examines how living with a 'contracted future', albeit of uncertain duration, affects how one spends time (wisely) in the present and plans future time. Mobilising the concept of timescapes and interviews with women with metastatic breast cancer, we examined how an incurable prognosis shaped how women experienced time, what meanings they ascribed to time and at what cost. Thematic analysis derived five themes: 'quality time'-the imperative to spend time well; 'out-of-sync timing'-experiencing temporal disconnect with others; 'making time'-motivation to extend their time through treatments; 'time mis/calculations'-planning amid uncertain certainty; and 'the tempo of living beyond prognosis'-responding to initial contraction and subsequent expansion of temporal horizons. Our analyses reveal how pressures to live well, die well and be remembered well complicated women's experiences of how to be in the present and future, incurring substantial social and economic costs. We illuminate how the quest for improved quality of life and extended longevity can result in emotional and financial precarity, experienced most profoundly by those with limited economic resources, revealing the economic and social factors that shape how time is spent well by those with metastatic disease.
Cole E, Reymond L, Stroil-Salama E, Phelan C.
Objective: Queensland implemented a centralised voluntary assisted dying (VAD) pharmacy model to promote safety, consistency and equitable access to VAD substances. In a geographically dispersed state, such as Queensland, a potential concern is whether centralisation affects time-to-delivery (TTD) for patients in regional and rural areas. This audit examined whether differences exist in TTD between South East Queensland (SEQ; metropolitan) and non-SEQ (non-metropolitan) patients, and explored reasons for prescription and visit cancellations to determine whether geographic factors, particularly remoteness, influenced service reliability.
Methods: All VAD substance deliveries between 1 January 2023 and 31 January 2024 were analysed. TTD was defined as the difference between the patient's preferred and actual supply dates. Comparisons were made across region (SEQ vs non-SEQ), hospital and health service districts, and Modified Monash Model categories. Reasons for prescription and visit cancellations were also explored, as these cases were not captured in the TTD dataset if a delivery did not proceed, and may reveal potential geographic barriers for timely access.
Results: Of 911 patients, 723 (83%) received the VAD substance on their preferred date. No statistically significant differences in TTD were observed across region, hospital and health service districts or Modified Monash Model classifications, demonstrating consistent and reliable statewide delivery - an indicator of safety and standardised practice. Cancellations (prescriptions n = 58, visits n = 56) were geographically uniform and most commonly due to patient death.
Conclusions: Queensland's centralised VAD pharmacy enables equity of access and safe delivery of VAD substances regardless of geography, supporting standardised practice and mitigating operational risks through centralised oversight.
Dadich A, Laurence C.
Background: Palliative care is becoming increasingly important for many health systems worldwide, driven by ageing populations and the increasing prevalence of chronic conditions. Access to and use of palliative care are not uniform across populations and are particularly limited among people of culturally and linguistically diverse communities, people of low socioeconomic status, and people residing in rural areas. To address these disparties, models of palliative care are required to meet the needs of these populations. The aim of this study was to identify stakeholder perspectives on the core components of palliative care models for these underserved populations that have the potential to improve their access to and use of palliative care.
Methods: Using a modified world café approach, facilitated discussions were held with stakeholders at two palliative care forums held in Australia in 2023. Targeted discussions were held on the factors that helped and hindered access to and use of palliative care, and the types of palliative care models for the three underserved populations. Participants summarised their discussions and identified three priority areas. Thematic analysis was used to identify patterns in the data collected from the forums.
Results: Over one hundred stakeholders contributed to this study (n = 109). The barriers to palliative care among the underserved populations included (mis)understandings of palliative care services, such as beliefs about dying, geographical or social isolation, the limited cultural appropriateness of services, and limited resources that restricted access to and use of palliative care services. Participants identified features that enabled the underserved populations to access palliative care, including communication and relationships to aid shared understanding, education for service providers and recipients, resources to promote and sustain community engagement, and cultural appropriateness to ensure communication was tailored to the needs and preferences of these populations.
Conclusions: Palliative care services for underserved populations should demonstrate choice, appropriateness, and connectedness, and be well-resourced. These core components might be used to underpin palliative care services for these populations to improve their access to and use of these services.
Dao-Tran TH, Kenny D, Welch A, Brittain D, Lendich K, Thompson J, et al.
Background: The Core Outcome Measures for Improving Dementia Care (COM-IC) project aims to develop a core outcome set for measuring the quality of care provided to people living with dementia in routine care settings. In a previous stage of the project, 17 core outcomes were identified. This study is the next step, aiming to review the literature to identify existing or recommended, validated scales for measuring the identified core outcomes.
Design: A rapid review DATA SOURCES: Six electronic databases (PubMed, Embase (Elsevier), CINAHL Complete (EBSCOhost), APA PsycINFO (EBSCOhost), Web of Science (Clarivate) and Scopus (Elsevier) were searched. Searches were completed on 12 July 2024.
Eligibility criteria: Peer-reviewed systematic reviews or original validation studies of scales measuring dignity; engagement in advance care planning; pain; quality of life; feeling safe and secure; emotional well-being; diagnosis of dementia; behavioural and psychological symptoms of dementia; the importance of relationships; meaningful activities; hygiene and comfort; resource utilisation and safety incidents for people living with dementia were included. Peer-reviewed systematic reviews or original validation studies of the scales to measure informal carers' quality of life, their educational opportunities, formal carers' morale and dementia-specific qualifications were also included. All studies were required to have been conducted among people living with dementia or carers, as appropriate, and to have full texts available in English.
Data extraction and synthesis: Data on the scale's name, the number of subscales, subscales' names, the number of items, response options, scoring, estimated time to complete the scale, recommended frequency of data collection and the setting where the scale was first validated were extracted. Findings are presented in figures, tables and narrative texts.
Results: A total of 88 validated scales were identified. No scales measuring dignity, engagement in advance care planning, feeling safe and secure, hygiene or safety incidents were validated for people living with dementia. No scale was identified to measure the importance of relationships for people living with dementia, the formal carers' dementia-specific qualifications or the educational opportunities for informal carers. The review also describes the 50 recommended or validated scales.
Conclusions: Several validated or recommended scales exist to measure core outcomes identified as important for assessing the quality of care provided to people living with dementia in routine care settings. This review offers COM-IC stakeholders and other potential users with information on the validated/recommended scales to measure these core outcomes.
Last updated 30 April 2024