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.
Pinto P, Fogarty GB, Kissane D.
Background: Moral distress affects a significant proportion of clinicians who have received requests and participated in euthanasia or physician-assisted suicide (E/PAS) globally. It has been reported that personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support.
Objective: This study aimed to review studies from 2017 to 2023 for the perceived risks, harms, and benefits to doctors of administering E/PAS and the ethical implications for the profession of medicine resulting from this practice.
Methods: The search explored original research papers published in peer-reviewed English language literature between June 2017 and December 2023 to extend prior reviews. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The qualitative review used the Critical Appraisal Skills Programme to assess whether studies were valid, reliable, and trustworthy.
Results: Thirty studies (quantitative n = 5, qualitative n = 22, mixed methods n = 3) were identified and fulfilled acceptable research assessment criteria. The following 5 themes arose from the synthesis of qualitative studies: (1) experience of the request prior to administration; (2) the doctor's role and agency in the death of a patient; (3) moral distress post-administration; (4) workload and burnout; and (5) professional guidance and support. Both quantitative and qualitative studies showed a significant proportion of clinicians (45.8-80%) have been adversely affected by their involvement in E/PAS, with only a minority of those reporting adverse impacts seeking support.
Significance of results: Participation in E/PAS can reward some and cause moral distress in others. For many clinicians, this can include significant adverse personal and professional consequences, thereby impacting the medical profession as a whole.
Stubbs M, Sunner C, Gaviola M, Popoola T, Reis J.
Abstract: Registered nurses working in residential aged care facilities frequently encounter dying and death. While caring for the dying is part of their role, RNs are at risk of experiencing unexpressed grief and loss, which can have negative physical and emotional effects. Individual experiences of grief and loss in registered nurses working residential aged care facilities are underexplored. This qualitative descriptive study explores how registered nurses in residential aged care facilities characterize their experience of grief and loss. Semi structured face-to face interviews were conducted with nine registered nurses from two residential aged care facilities in New South Wales, Australia. Data were analyzed using an inductive thematic approach. Four themes were identified: (1) evolution of emotion; (2) wellbeing and resilience; (3) challenges; (4) solutions. While participants expressed resilience and coping strategies, there is a need for a structured organizational approach to support RNs, particularly new graduate registered nurses in managing grief and loss.
Heng KV, Gringart E.
Abstract: In Australia, voluntary assisted dying (VAD) is now widely legalised, and VAD uptake is on the rise. Thus, the demand for psychological support in the context of VAD is expected to grow. Despite their relevant expertise, psychologists remain underrepresented in end-of-life (EOL) literature and practice. The current in-depth qualitative study examined the perspectives of 20 provisionally registered psychologists in Australia on VAD, using reflexive thematic analysis grounded in social constructionism. Four main themes ('Values', 'Fit-for-Role', 'Exposure', and 'Contributions') and 14 sub-themes were generated from the data. Participants supported availing VAD for terminally ill patients and expressed the potential for its use with dementia sufferers. Nevertheless, participants expressed little interest to engage in VAD care. Participants shared concerns about the high-stakes nature of VAD, the emotional strain of EOL practice, and limited exposure to EOL and VAD. Practical implications and directions for further research are discussed.
MacArthur ND, Kirby E, Mowll J.
Abstract: Ensuring patient and family members' preparedness for dying is a key focus for palliative care. This article draws on the retrospective accounts of bereaved adult family members' experiences of anticipation and preparedness following a death in palliative or residential aged care. Participants completed in-depth interviews (n = 36). A constructivist grounded theory approach guided data collection and analysis, through which the complexities of engaging in preparedness whilst navigating questions of how to care well emerged. We propose the concept of anticipation fatigue as a means by which to understand the impacts of holding multiple, sometimes contradictory, positions in the pursuit of 'good' care at end of life. These results deepen our understandings of the impacts of caring-in-anticipation and offer insights for improving support to families receiving palliative care.
Merrington H, Mahimbo A, DiGiacomo M, Roxas-Harris B, Agar MR, Nathan S, et al.
Background: Refugees experience barriers to health care after resettlement and may have distinct palliative care needs. There is no systematic guidance to support person-centred palliative care services that are responsive to refugees' needs and preferences.
Aim: To synthesis evidence regarding factors enhancing the wellbeing of refugees with advanced life-limiting illness, and their families, to inform palliative care in high-income resettlement countries.
Design: A systematic review of primary research studies. We applied a strength-based assets framework to the data extraction and synthesis and conducted a directed content analysis.
Results: Ten of the 1006 studies identified were included in the review: two qualitative, one quantitative and seven case studies. We identified 17 assets that enhanced refugees' wellbeing: resilience, religion, spirituality, sense of identity, belonging, community connections, health and death literacy, acculturation, family and social support, social capital, community structures, access to funeral information, access to services, palliative care service approaches, and workforce capacity. Resilience was linked to identity and belonging, connections within cultural and religious networks, social capital and creating meaningful funeral rituals in resettlement. Palliative care workforce capacity, death literacy, acculturation, refugees' grief experiences and willingness to discuss and plan for death, influenced refugees' attitudes to palliative care, communication with staff about treatment, prognosis and spiritual care, and care outcomes.
Conclusions: Further research, co-designed with diverse refugee groups, is needed to inform palliative care service approaches, develop interventions to strengthen key assets and explore the nuanced role of social capital in end-of-life care.
Last updated 30 April 2024