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.
Puranam S, Disalvo D, Giannitrapani K, Lorenz K, Mickelsen J, DeNatale M, et al.
Background: In 2021, the Palliative Care - Promoting and Improving Clinical Excellence (PC-PAICE) collaborative was adapted in Australia after an initial run in India. PC-PAICE partners global experts with local palliative care centers to improve care by fostering quality improvement (QI) capacity.
Intervention: PC-PAICE is a guided QI and mentorship curriculum delivered to interdisciplinary teams working on a relevant project, and each team develops salient project measures. The program has been offered to three Australian cohorts and has trained participants to mentor subsequent participants to build local QI capacity.
Outcomes: Qualitative evaluation has shown teams tackled specific and immediate challenges facing their clinics that were not otherwise recognized without increasing overall work burden. Teams have presented their projects at conferences, and a number have published their work in journals.
Conclusion/ lessons learned: PC-PAICE is uniquely suited to improving palliative care via equitable global partnerships among diverse practitioners. Given its promise, the team is planning to implement the model more widely.
Singh GK, Virdun C, Rattray M, Prichard R, Wynne R.
Background: Optimal palliative care requires a correct assessment of needs. Nurses are well-placed to undertake this task, but the effectiveness of nurse-led palliative care needs assessment remains uncertain.
Aim: To evaluate the evidence regarding the impact of nurse-led palliative care needs assessment on adult patients with oncological and non-oncological illnesses quality of life, symptom burden and hospitalisations.
Design: Systematic review. The review was registered on the international Prospective Register of Systematic Reviews (PROSPERO) (registration number CRD42023429259).
Data sources: Databases searched were CINAHL, PubMed, Embase, and MEDLINE from inception to April 2024.
Methods: A systematic review of English language, randomised controlled trials, conducted in May 2023, and updated in April 2024, on the impact of nurse-led palliative care needs assessment was undertaken. Two independent reviewers screened papers, and two reviewers independently conducted data extraction and risk of bias assessment using the Cochrane Risk of Bias 2 tool. The data were analysed using a narrative synthesis approach by combining studies according to the outcomes of interest.
Results: Six trials were included, involving oncological patients (n = 4), non-oncological patients (n = 1) and deceased aged-care residents (n = 1). Two studies had 'low' risk of bias, two had 'some concerns,' and two had 'high concerns.' There was heterogeneity in the needs assessment tools used and the outcome measures assessed. Researchers who conducted a nurse-led and social worker-led trial in non-oncological patients demonstrated statistically significant improvements in patient quality-of-life and symptom burden. Researchers in two trials found no difference, and two others reported statistically non-significant improvements in quality of life and symptom burden. One group of researchers found no difference in hospitalisations at 6 months. No studies evaluated the inpatient length of stay.
Conclusion: There is a paucity of high-quality evidence on the effectiveness of nurse-led palliative care needs assessments. Future researchers must identify what level of needs predicts poor quality of life, assess interventions tailored to local contexts, and determine how best to evaluate their impact using clinically relevant outcome measures.
Wibisono S, Minto K, Lizzio-Wilson M, Thomas EF, Crane M, Molenberghs P, et al.
Abstract: A narrative systematic review was conducted to review studies that examine mental health implications of involvement in assisted-death services among health practitioners. Qualitative and quantitative studies were included to understand health practitioners' attitudes and experiences with assisted dying services, as well as to identify the mental health consequences. We identified 18 articles from 1591 articles drawn from seven major scientific databases (i.e., PubMed, MEDLINE, CINAHL, PsycINFO, Embase, Web of Science, and Scopus). Two raters independently evaluated the exclusion and inclusion decisions of the articles and examined methodological flaws in the selected articles. We found that engagement in assisted death services were not reliably associated with mental health outcomes such as anxiety and moral distress. Both positive and negative outcomes were reported, and psychological outcomes for practitioners were shown to vary based on factors including social support for health practitioners' views; their perceived capacity to care for the patients; and legislation.
Hewitt J, Wilson M, Bloomer MJ, Rennie C, Bonner A.
Objective: Voluntary assisted dying is a contested practice that some end-of-life care providers choose not to offer to patients. In some jurisdictions, this has restricted access. Queensland addressed this with a law designed to ensure that access to voluntary assisted dying was not hindered. The aim of this research was to explore how privately funded health services that provide end-of-life care, prepared for, and identified challenges related to, enabling access to voluntary assisted dying in Queensland.
Methods: An interpretivist exploratory study was undertaken. Health service representatives responsible for developing and implementing organisational voluntary assisted dying policy were invited to participate in semi-structured interviews. Data were analysed thematically.
Results: Fifteen participants participated in an interview. Analysis of the data generated four themes: navigating a spectrum of values and beliefs; knowing and understanding voluntary assisted dying; moderating voluntary assisted dying conversations; and finding space for voluntary assisted dying in end-of-life care. The preparedness of privately funded health services for voluntary assisted dying varied, yet all providers were committed to providing compassionate end-of-life care while meeting their new legal obligations. The need to support staff with a range of values and beliefs about voluntary assisted dying was highlighted.
Conclusions: Using law to balance the rights of individuals to access voluntary assisted dying and those of non-participating organisations obliges all health services to consider patient access, the views of staff, and broader organisational values concerning voluntary assisted dying. Future research will explore whether access to voluntary assisted dying is affected.
Michael N, Liebelt J, Symons X, Kissane D.
Objectives: Caregivers play a significant role in the process of Voluntary Assisted Dying (VAD), reporting stances of support, opposition, or ambivalence. Though caregiver vulnerability is recognized, little is understood about how caregivers adjust when patients seek VAD. We sought to appreciate how bereaved caregivers of patients in organizations that did not participate in VAD processed and adapted to the challenges faced.
Methods: We purposefully recruited caregivers from cases reviewed in a retrospective study exploring how VAD impacted the quality of palliative care. We further expanded sampling to maximize diverse views. We used qualitative interpretative phenomenological analysis to explore unique caregiver perspectives.
Results: Twenty-three caregivers completed interviews. Most were female, Australian-born, retired, identified with no religion, bereaved for 1-3 years, and in a caregiving role for 1-5 years. Caregivers sought accompaniment and non-abandonment across all stages of VAD. Coping was enhanced through framing and reframing thought processes and reconciling values. Caregivers bore responsibility through heightened emotions and experienced isolation and anticipatory grief as they reconciled perceived societal attitudes. Caregivers additionally failed to understand the rationale behind organizational stances and were unable to articulate the moral conflicts that arose. Impartiality from professionals was valued for caregivers to sustain care for the patient.
Significance of results: Despite feelings of vulnerability and isolation, caregivers demonstrated benevolence, courage, and self-compassion, reframing and accommodating their concerns. Professional accompaniment and non-abandonment necessitate solidarity and empowerment, without necessarily enabling VAD. Findings demonstrated the need for individuals and organizations to clearly articulate their willingness to continue to accompany patients, regardless of their position on VAD.
Last updated 30 April 2024