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.
Brown MA, Hole BD, Brennan F, Vallath N, Davison SN.
Abstract:
The concept of kidney supportive care (KSC) grew from an increasingly recognized need to provide treatment directed at the quality as well as the quantity of life of people living with chronic kidney disease (CKD). KSC attends to the lowered well-being and multiple—often severe—symptoms associated with CKD, which can be overlooked and stay unaddressed with disease-focused care in busy clinical settings.
We represent an international group, heavily involved in the development of contemporary KSC. We reflect on the available evidence and our experiences of researching, establishing, developing, and quality assuring KSC services across geographic and resource settings. Different nephrologists are at different stages of accepting and learning about what KSC and conservative kidney management (CKM) entail. We acknowledge and applaud those who provide most components of KSC most of the time. Meanwhile, we believe that KSC has yet to become part of mainstream nephrology. A recent Global Kidney Health Atlas survey found extensive variation in how CKM and KSC were defined, and what and how much care was provided.1 A separate survey of 114 kidney services across Australia, New Zealand, and the United Kingdom showed that a third do not provide KSC services, and even where a service is available, this often does not involve a nephrologist.2 It is our opinion that (i) KSC must be considered an essential part of nephrology services, universally accessible to all people under our care; (ii) clinical skills in KSC should become mandated core competencies of all nephrology training programs; and (iii) optimum and proportionate care will ensue with KSC services integrated across the CKD trajectory. We advocate for acceptance and awareness of KSC in general, and CKM in particular. We promote recent guidelines and educational opportunities in this field, particularly the International Society of Nephrology (ISN) curriculum (https://academy.theisn.org/products/kidney-supportive-care-and-conservative-kidney-management-curriculum).
Eu D, Fischer A, Griffin A, Lancaster M, Good P.
Background: Despite preferring end-of-life care at home, only a small percentage of deaths in Australia occur in private homes.
Aim: This study evaluates a private health insurance-funded support programme (provided in addition to the standard level of community palliative care), the rates of home death, the percentage of patients who died in their preferred location and the satisfaction with the care provided.
Methods: This prospective study enrolled patients in two cohorts: the Medibank cohort (with private health insurance, a prognosis of less than 3 months, a preference for home death) and the standard cohort (publicly funded patients, with no limitation to prognosis or preferred place of death). Demographics and preferences for place of death were collected.
Results: The first 12 months of the study are reported here with 132 patients (Medibank cohort, n = 67; standard cohort, n = 65). Medibank patients that died had significantly shorter contact with the service compared with the standard cohort (median 13.5 days vs 39 days), a higher home death rate (79% vs 44%) and a higher rate of preference for a home death (97% vs 59%). The proportion of deaths in the patients' preferred location was similar for both groups.
Conclusions: The high home death rate observed in the Medibank cohort highlights the potential benefit of enhanced palliative care support at the end of life. This support should be dedicated, accessible and resourced with in-home nursing assistance and allied health interventions.
Keon-Cohen Z, Loane H, Romero L, Jones D, Banaszak-Holl J.
Background: Advance care planning is well established in general medical wards, but its implementation in anaesthesia and perioperative care presents unique challenges. Effective communication and shared decision-making regarding treatment limitations are essential to clarify care goals and provide timely, high-quality end-of-life care. Terminally ill patients with complex care needs can experience a higher risk of postoperative mortality during anaesthesia.
Methods: This scoping review examines the literature describing when and how advance care planning has been studied in perioperative care, focusing on patient characteristics, the content of advance care planning discussions, and impact on patient outcomes. The study follows PRISMA-ScR guidelines. Articles were collected from MEDLINE, CENTRAL, and CINAHL databases, using search terms from MeSH and synonyms for anaesthesia, surgery and perioperative care, advance care planning, living wills or advance directives, goals of care and terminal care, resuscitation orders, shared decision-making, and palliative care discussions.
Results: Advance care planning documentation varies across surgical specialties and settings, with higher rates in emergency and palliative surgery. Patient factors, such as age and comorbidities, impact completion of advance care planning. Structurally, the presence of interdisciplinary teams, increased decision-making aids, and structured discussions improve implementation. Barriers included a lack of consistency in terminology, poor timing of needed conversations, a lack of cultural sensitivities, and patient fears of abandonment and palliative care.
Conclusions: Further research is required to determine the most appropriate and beneficial methods and outcomes for implementing advance care planning into perioperative and end-of-life care, ensuring appropriate, timely, and patient-oriented care delivery.
Shah R, Everitt R, Hince D, Kissane D, Michael N.
Background: Ambulatory palliative care clinics are associated with improved outcomes in cancer patients, including short-term quality of life. However, their impact on individual patient-reported symptoms is not well understood.
Aim: We evaluated the impact of ambulatory palliative care on individual symptoms in adult cancer patients.
Design: Following a standard protocol (PROSPERO: CRD42022321909), investigators independently identified randomised and non-randomised intervention studies that assessed patient-reported symptom scores using validated symptom assessment scales longitudinally. Data were synthesised using random-effects meta-analyses.
Data sources: Database of PubMed, CINAHL, EMBASE, PsycINFO and Cochrane Central was searched from inception to September 2023 for eligible studies.
Results: 20 studies encompassing 4 prospective cohort studies, 1 randomised control trial and 15 retrospective studies were included. Most studies focused on cohorts with advanced cancers of mixed primary tumour type, were colocated within or linked to a tertiary cancer centre and assessed symptoms using the Edmonton Symptom Assessment Scale (ESAS). The meta-analyses confirmed evidence for improvement in pain (standardised mean difference (SMD) 0.31, 95% CI 0.18 to 0.44), anxiety (SMD 0.31, 95% CI 0.12 to 0.49), fatigue (SMD 0.31, 95% CI 0.10 to 0.51), insomnia (SMD 0.29, 95% CI 0.15 to 0.42), depression (SMD 0.25, 95% CI 0.09 to 0.40), drowsiness (SMD 0.23, 95% CI 0.11 to 0.34), well-being (SMD 0.28, 95% CI 0.12 to 0.45) and overall symptom burden (SMD 0.29, 95% CI 0.22 to 0.36). There was no evidence for improvement in nausea (SMD 0.19, 95% CI -0.02 to 0.40), dyspnoea (SMD 0.16, 95% CI 0.02 to 0.29) and appetite scores (SMD 0.14, 95% CI -0.00 to 0.29).
Conclusions: Ambulatory palliative care had positive effects on multiple common symptoms. The strength of this evidence however is low, largely due to the considerable heterogeneity among included studies. Further research could determine thresholds on symptom assessment scales to guide urgency of referral, timing of follow-up and optimal multidisciplinary staff involvement.
Wijeyaratne L, Spruijt O, Jayasinghe S, Kane S, Ramadasa U, Philip J.
Introduction: To deliver palliative care, it is important to understand what a "good death" means to the relevant people. Such studies have mostly occurred in high-income settings that usually live by Western ideals. What matters to people is likely to vary across different regions of the world, influenced by multiple factors. Although there is a great need for palliative care in South Asia, there is a lack of comprehensive understanding of what a good death means in this setting. This study aimed to increase understanding of what is considered a good death in South Asia.
Design: Systematic review and narrative synthesis.
Method: A systematic search was conducted across eight databases, an Advanced Google search, and a bibliography search of selected articles. A data-based convergent synthesis was performed, along with quality appraisal.
Results: Twenty-five empirical studies were selected for analysis from India, Pakistan, Bangladesh, Sri Lanka, and Bhutan. Four themes emerged. Mutual care and connection support a continued sense of self: contributing to others, while receiving connection through relationships and spiritual practices, was important for patients and supported by families and healthcare workers. Freedom to choose-privilege or burden?: the choice to participate in care was necessary for some patients but a burden for others, who preferred the family to lead their care. Severe uncontrolled pain and financial distress precluded choice for some patients, who felt death was the only option. Decisions regarding artificial prolongation of life were complex for patients and healthcare workers. Opportunities in the last days: when actively dying, there was general agreement on the importance of being pain-free, feeling safe, and having family present. Home was not always the preferred place of death. For family, it was critical to perform last rites. After death matters: What happens after death-influenced by leaving a legacy and religious beliefs-affected all parties before, during, and post-death.
Conclusions: To our knowledge, this is the first review of what a good death means in South Asia. There is a dearth of research from most South Asian countries. Although the South Asian perspective has similarities with the Western perspective, we note important nuances around decision-making, prolongation of life, prognostic awareness, and wanting to end one's life, moderated by culture, religion, and poverty. We support policies that account for these variations. Ongoing work is required to provide good symptom management, thus increasing opportunities for patient participation in care. Further research is needed in areas of ethics and religion at the end of life in South Asia.
Last updated 30 April 2024