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.
Jeon YH, McKenzie H.
Aim: This interpretive qualitative inquiry aimed to explore perspectives of family carers, clinicians and service providers on the issues and challenges of providing quality end-of-life care for people with advanced dementia living at home.
Methods: We conducted in-depth, semi-structured interviews with 33 bereaved and current family carers and focus groups with 20 clinicians and service providers across various care settings. Thematic analysis was used to disclose meaningful insights and patterns of meaning.
Results: Six key themes were identified: Inadequate preparation, guidance and access to appropriate resources; Taboo and misunderstanding: talking about death; Dementia as a terminal illness and the role of palliative care; Key time points, critical events and decisions; Planning ahead not in reality; Family issues and dynamics. From clinicians' and service providers' perspectives, problems related to limited resources, poor consumer access, and skilled workforce shortages all undermined efforts to enable living and dying at home. Family carers found that conversations about death and care home admission were "too confronting" for many, hampering planning in advance. A lack of public, community and health professional awareness led to suboptimal end-of-life planning, signaling the need for all health professionals, especially community and primary care practitioners to be knowledgeable in dementia care.
Conclusions: Addressing unique challenges that people with advanced dementia and their family carers experience requires continuity of care and coordination of multidisciplinary care services. Further research is needed to identify dementia-appropriate policies, for example adaptation of current models of advance care planning to meet the needs of this population.
Lakhani A, Senyel D, Mackenzie-Stewart R, Stuckey R.
Background: Adults aged 18-64 years with life-limiting conditions often fall through gaps in health and disability systems, particularly due to service ineligibility. Although home-based palliative care improves outcomes and cost-effectiveness, structural inequities and fragmented services can prevent younger adults from remaining in the community.
Aim: To identify factors influencing the ability of younger adults with life-limiting conditions to remain in the community and to map how these factors interact - using Australia as an illustrative context - through a systems-thinking approach.
Design: Mixed-methods study combining retrospective case-note analysis and semi-structured interviews. Thematic coding informed a causal loop diagram visualizing system dynamics and leverage points.
Setting/ participants: Sixty-three younger adults connected to a national care-coordination program supporting those at risk of residential aged-care entry due to ineligibility for disability or aged-care funding. Data comprised 48 case notes and 15 interviews across all Australian jurisdictions.
Results: Five interdependent domains influenced community living: informal care, formal care, service navigation, respite access, and condition severity. The causal loop diagram revealed three reinforcing and two balancing loops. Key leverage points included respite access, carer wellbeing, and streamlined navigation and eligibility processes.
Conclusions: Systems thinking clarified how interactions among informal care, formal supports, and symptom severity shape care continuity. Findings highlight the need to position respite, practical carer support and navigation assistance as core components of community-based palliative care, and to align disability, aged-care and palliative-care systems so younger adults are not excluded from essential support due to age or funding rules.
Mitchell RJ, Cai S, George J, Boutros R, Zekry A, Zurynski Y.
Background: Palliative care is essential to manage symptoms and end-of-life (EOL) quality, yet its utilisation in liver cancer remains poorly understood. This study examined sociodemographic and clinical characteristics associated with palliative care admission in the last 5 years of life for people with a death from liver cancer.
Methods: A population-based retrospective cohort study of adults (≥ 18 years) who died from liver cancer between 2013 and 2022 in New South Wales, Australia was conducted. Multivariable logistic regression identified factors associated with palliative care admissions using linked hospital, cancer registry, notifiable conditions and mortality records.
Results: There were 3565 deaths and 55.3% of people had at least one palliative care admission. Females (OR 1.25; 95% CI 1.06-1.49), individuals with anxiety-related disorders (OR 1.63; 95% CI 1.18-2.25), drug-related dependence (OR 1.81; 95% CI 1.29-2.54), who lived in rural locations (OR 1.39; 95% CI 1.18-1.64), who had metastatic cancer at diagnosis (OR 1.23; 95% CI 1.01-1.50), who had ≥ 4 hospital admissions (OR 1.43; 95% CI 1.08-1.90) or who died in hospital (OR 4.64; 95% CI 4.64-6.52) had a higher likelihood of a palliative care admission compared to no palliative care admissions. People admitted to intensive care (OR 0.60; 95% CI 0.47-0.75) or who had mechanical ventilation (OR 0.46; 95% CI 0.29-0.74) in the last 12 months prior to EOL were less likely to have a palliative care admission.
Conclusions: This is the first Australian study to examine palliative care use in liver cancer on a population-level. Findings support earlier integration of palliative care to reduce high-acuity interventions. These insights have implications for service delivery, equity and policy in EOL care planning.
Pullen S, Majeed T, Russo S, Dieckmann MA, Oldmeadow C, Wynne O, et al.
Objectives: Patients with advanced liver disease (ALD) may benefit from the early integration of supportive care toward the end of life. Engagement with supportive and palliative care could decrease disease-related distress and alleviate pressure on the health system. This trial evaluated whether a transdisciplinary supportive care model, aligned with standard care and guided by patient- and carer-identified needs, could optimize health service utilization and outcomes for patients and carers living with ALD.
Methods: A 90-day multicenter, mixed-methods pilot randomized controlled trial, "Liver Life," was conducted at 1 regional tertiary and 1 rural referral hospital in NSW, Australia. The intervention group received patient- and carer-centered supportive care interventions during 5 scheduled allied health-led outpatient visits, alongside ongoing standard care. This paper reports health service utilization and associated costs, and participant-reported measures.
Results: Over 90 days, emergency department presentations were reduced by 66% (incidence rate ratio: 0.34 [0.13-0.80]), and hospital admissions by 64% (incidence rate ratio: 0.36 [0.12-0.98]). Intervention patients were 5 times more likely to have more days "alive and out of hospital" than those receiving standard care alone (odds ratio: 5.34 [1.43-22.1]). As a result, the overall cost of health service use per intervention patient was less than half that of standard care alone.
Significance of results: The Liver Life trial demonstrated the feasibility, acceptability, efficacy, and potential cost savings of a transdisciplinary supportive care model for ALD patients and their caregivers. Future research should investigate the sustainability and transferability of this approach to other populations and other chronic diseases.
Ross L, McDonald J, Volkmann ER.
Purpose of review: Respiratory disease is a major cause of morbidity and mortality for patients with systemic autoimmune diseases. Chronic exertional fatigue, breathlessness, and cough all cause significant impairment of quality of life. In this review, we summarize the major respiratory complications of systemic autoimmune diseases and consider the evidence supporting the role that palliative care can play in the management of systemic autoimmune disease.
Recent findings: The symptom burden suffered by patients with systemic autoimmune diseases is equivalent to that of patients with active malignancy. Recent studies have explored how palliative care could be integrated with rheumatology care to improve symptom control and address the high psychosocial burden associated with living with a systemic autoimmune disease. Both rheumatologists and palliative care providers are uncertain as to the role of palliative care in the management of systemic autoimmune diseases, with the optimal model of integrated palliative care yet to be defined.
Summary: Emerging evidence supports the acceptability and value of palliative care to patients living with a systemic autoimmune disease and their caregivers. However, there are both patient and physician associated barriers to the integration of palliative care with rheumatology care. Studies are required to demonstrate the efficacy of palliative care in the management of systemic autoimmune diseases.
Last updated 30 April 2024