Latest Australian research

Lambert E, Gibson J, Bail K.

Aim: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care?

Design: Interpretative phenomenological analysis METHODS: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions.

Results: Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work.

Conclusion: Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context.

Implications for the profession and /or patient care: Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries.

Reporting method: COREQ Checklist.

Patient or public contribution: During this study, care workers were interviewed on their experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care. Patients were not directly involved within this study, but their views may have been expressed through the care workers' experience.

© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Pascoe A, Buchan C, Smallwood N.

Background and objective: Chronic obstructive pulmonary disease (COPD) is characterized by persistent and progressive airflow restriction and is the third leading cause of death and disability, globally. People with severe COPD generally experience long-term functional decline punctuated by periods of acute exacerbation. Symptom burden can be severe and debilitating, and typically includes breathlessness, cough, fatigue, pain, anxiety, depression, and overall reduced quality of life. Understanding current palliative care needs and provisions in this group is an essential step to expanding access in future.

Methods: A narrative review of specialist and generalist (primary) palliative care provisions for people with COPD, with an emphasis on breathlessness symptom management. This paper aims to examine the current landscape of palliative care provision and highlight barriers and facilitators to palliative care access for people with severe COPD.

Key content and findings: People living with severe COPD, as well as the people who care for them, are routinely under-serviced in best-practice end-of-life care, despite having symptom burden that is comparable to that of people with advanced cancer. Barriers to palliative care in this group include lack of specialist palliative care resources, uncertainty surrounding prognostication, and poor recognition of need from both patients and clinicians. Routine early palliative care involvement, including integration of specialist palliative care into respiratory services and upskilling of other healthcare providers to adopt palliative care principals within usual care (primary palliative care), have been shown to improve outcomes indicative of high-quality end-of-life care in this group, including symptom control, place of death, and legal preparations. Ongoing integration of specialist palliative care and professional education for generalist and non-palliative care specialist healthcare providers in the recognition and management of unmet palliative care needs is required to increase capacity beyond traditional specialist palliative care models.

Conclusions: Despite high level of symptom burden, many people with COPD miss out on palliative care. Expanding capacity of traditional specialist palliative care by upskilling generalist healthcare providers and integrating specialist palliative care into existing respiratory services is necessary to improve access for people with COPD.

Michael N, Jones D, Kernick L, Kissane D.

Objectives: We aimed to explore the relationship between the pursuit of voluntary assisted dying (VAD) and the delivery of quality palliative care in an Australian state where VAD was newly available METHODS: We adopted a retrospective convergent mixed-methods design to gather and interpret data from records of 141 patients who expressed an interest in and did or did not pursue VAD over 2 years. Findings were correlated against quality domains.

Results: The mean patient age was 72.4 years, with the majority male, married/partnered, with a cancer diagnosis and identifying with no religion. One-third had depression, anxiety or such symptoms, half were in the deteriorating phase, two-thirds required help with self-care and 83.7% reported moderate/severe symptoms. Patients sought VAD because of a desire for autonomy (68.1%), actual suffering (57.4%), fear of future suffering (51.1%) and social concerns (22.0%). VAD enquiries impacted multiple quality domains, both enhancing or impeding whole person care, family caregiving and the palliative care team. Open communication promoted adherence to therapeutic options and whole person care and allowed for timely access to palliative care. Patients sought VAD over palliative care as a solution to suffering, with the withholding of information impacting relationships.

Significance of Results: As legislation is expanded across jurisdictions, palliative care is challenged to accompany patients on their chosen path. Studies are necessary to explore how to ensure the quality of palliative care remains enhanced in those who pursue VAD and support continues for caregivers and staff in their accompaniment of patients.

© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.

Ponnampalam S, Gregory H.

Abstract: Catastrophic bleeds are life-threatening events. This case report describes the successful use of intravenous propofol infusion in order to facilitate palliative sedation in the context of a catastrophic bleed where traditional medications did not yield the necessary level of effect as the patient survived another 72 hours after the onset of the bleeding event. Given the prolonged period post onset of this patient’s catastrophic bleed, this case demonstrates the effective use of an intravenous propofol infusion to facilitate comfort and sedation when drug classes such as benzodiazepines and barbiturates failed to do so. Given the successful outcome detailed in this case, we strongly advocate for the development of guidelines that incorporate propofol alongside other pharmacological measures when addressing palliative sedation.

Rodda L, Barrett S. 

Abstract: The objectives of this study were to examine the roles and needs of allied health professionals (AHPs) working in public healthcare settings in rural and regional Victoria, Australia in providing components of palliative care in their routine practice.MethodsA cross-sectional study was conducted between March and May 2023. Surveys were collected from AHPs working in public healthcare settings in the Loddon Mallee region of Victoria, Australia. Clinicians reported on the frequency of provision of care to patients with terminal illness, and their self-reported skill and confidence in providing interventions to patients with palliative care needs.ResultsIn total, 121 clinicians completed the survey. Almost every respondent reported they had provided care to patients with a terminal illness, with 41% of clinicians providing this care daily or weekly. The respondents were confident carrying out generalist interventions such as maintaining physical function but reported lower confidence in managing common symptoms of terminal illness such as loss of appetite, swallowing difficulties and changing communication needs. Two-thirds of respondents had not undertaken any training specific to palliative care, with many unaware of how to access palliative care-specific training.ConclusionAHPs in rural and remote areas regularly provide care to patients with terminal illness. As the number of patients seen in non-specialist palliative care settings is likely to increase in rural and regional areas, the low self-reported confidence in providing common components of care, and the low uptake of palliative care-specific training must be addressed to ensure AHPs can provide high-quality care to people with terminal illness.