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.
Smith TA, Roberts MM, Luckett T, Cho JG, Klimkeit E, Stephenson H, et al.
Background: Chronic obstructive pulmonary disease (COPD) is an often-progressive respiratory disease associated with disabling breathlessness. Breathlessness intervention services (BIS), which coach patients to self-manage breathlessness using non-pharmacological strategies, are effective in a variety of populations, including those with cancer and serious respiratory disease. This study aimed to compare the impact of the Westmead Breathlessness Service in people with moderate to severe COPD.
Methods: We analysed 113 participants randomised (1:1) with moderate/severe COPD (forced expiratory volume in 1 s (FEV1)/forced vital capacity <0.70 and FEV1 ≤60% predicted) and disabling breathlessness (modified Medical Research Council (mMRC) Breathlessness Score ≥2) to either an 8-week intervention involving breathing techniques, handheld fan use, exercise, energy conservation, dietetic advice (n=54) or 8-week wait-list control group (n=59). The primary outcome was change in Chronic Respiratory Questionnaire (CRQ) Mastery of breathlessness subscale. Secondary outcomes included change in other CRQ subscales (Fatigue, Emotion and Dyspnoea), exertional breathlessness intensity/unpleasantness (0-10 Numerical Rating Scale Score), anxiety and depression. Difference in change over 8 weeks between groups was compared using ANCOVA; p<0.05 statistically significant.
Findings: Participants were aged 70.9 (±8.5) years, 50% female, mean FEV1 =0.8 L (±0.3 L; 34% predicted), mMRC Breathlessness Score 3 (IQR 3-4). CRQ-Mastery improved following intervention compared with control (between-group difference 0.5 units; 95% CI 0.2 to 0.8; p=0.0262) using modified intention-to-treat analysis. Better CRQ-Dyspnoea and CRQ-Fatigue were seen in the intervention group (between-group difference-CRQ-Dyspnoea 0.4 units; CI 0.1 to 0.7; p=0.005, and CRQ-Fatigue 0.4 units; CI 0.1 to 0.7; p=0.014). Exertional breathlessness intensity (difference -0.8 units; CI -1.4 to -0.2; p=0.013) and breathlessness unpleasantness (difference -1.2 units; CI -1.7 to -0.6; p=0.001) also improved.
Intepretation: An 8-week BIS improved CRQ-Mastery, Dyspnoea and Fatigue, exertional breathlessness intensity and unpleasantness in people with severe COPD.
Sundararajan K, Subramaniam A, Hanson-Easey S, Thompson C, Phelan C, Doherty S, et al.
Introduction: Cultural diversity is a broad term used to encompass ethnic and racial diversity, multiculturalism, diverse languages, religions, practices, beliefs and identities of people. In ICU, people who are culturally diverse are at increased risk of marginalisation, sub-optimal care, higher morbidity and mortality. Ethnocultural biases and stereotypical assumptions can negatively influence ICU care.
Aim: To explore the experiences of nurses, physicians and allied health professionals (clinicians) in caring for patients and their family members from culturally diverse backgrounds.
Methods: Ethical approval was granted for an exploratory descriptive study. Convenience sampling was used to recruit clinicians involved in patient care, from two ICUs in Australia. Semi-structured individual interviews were undertaken to gather data, with interviews audio recorded and auto-transcribed. Data were analysed using inductive content analysis.
Findings: Twenty clinicians participated, with interviews lasting 26 min (mean). Analysis revealed four main themes: (i) Cultural sensitivity and responsiveness, which describes the importance of cultural sensitivity and responsiveness in care; (ii) Complexities of communication, which includes descriptions of strategies to overcome communication barriers; (iii) At the end of life, which describes end-of-life care challenges, particularly in the context of brain death and organ donation; and (iv) The way forward, offering suggestions for optimising care for patients and family members who were culturally diverse.
Conclusions: Cultural diversity complicates patient and family care and communication in the ICU. These findings emphasise the importance of clinicians' sensitivity and openness to difference, and that it is clinicians' responsibility to overcome cultural and linguistic differences, not the critically ill patient or their family.
Vandersman P, Chakraborty A, Rowley G, Tieman J.
Background: Residential aged care is increasingly becoming the final place of care for many older adults in high-income countries. For many families, grief begins well before the death of their loved one, emerging as early as the time of entry into residential care. This grief often continues as they witness ongoing decline and deterioration and extends into bereavement following the resident's death. While caregiver grief is well recognised, there is limited understanding of how these experiences unfold across this full journey and the specific challenges families face at each stage. This study explored the grief, loss and bereavement needs of family caregivers of people who are about to enter, living in, or have died in a residential aged care facility.
Methods: This qualitative study used semi-structured interviews and focus groups with family caregivers and residential aged care staff. Data were managed using NVivo and analysed using reflexive thematic analysis approach.
Findings: Thirty eight participants (n = 28 staff members; and n = 10 family caregivers) from nine residential aged care services participated in the study. Five themes developed from the data: (i) grief manifests early and is associated with the loss of caregiver role; (ii) grief and emotional strain arise in transition, creating support needs; (iii) timely communication and tailored care shapes grief experience at end-of-life; (iv) inclusive after-death rituals support meaningful closure; and (v) relational support and community sustain families in grief. Participants highlighted the complexity of grief and loss experienced by family caregivers throughout their loved one's journey in residential aged care, from admission to death.
Conclusions: Establishing culturally sensitive, timely, and open conversations about death and dying while fostering strong and supportive relationships between staff, caregivers, and residents is crucial in helping family caregivers navigate their grief, loss, and bereavement.
Blythe R, White NM, Brown C, Hillman K, Barnett AG.
Background: The Clinical Frailty Scale is an ordinal scale from 1 (very fit) to 9 (terminally ill) commonly used to assess frailty in older patients. It is simple for clinicians to apply and can help identify patients who may benefit from discussions around end-of-life care. We externally validated the Scale to assess its performance for predicting 90-day mortality in a cohort of admitted older patients who had screened positive for being at risk of nearing the end of life.
Methods: We used data from a randomised controlled trial assessing a tailored feedback loop for reducing non-beneficial care. Our study included patients aged 75 and above admitted between May 2020 and June 2021 from 3 Australian hospitals. We assessed whether the Scale could be used in a frail population to identify patients who were at risk of short-term mortality. Predictive performance was assessed using the c-statistic, smoothed calibration curves and decision curves. Models were tested for coefficient stability.
Results: Our dataset contained 4639 patients and 956 deaths within 90 days. The Clinical Frailty Scale had a c-statistic of 0.62 (95% CI 0.60 to 0.64) or 0.63 (95% CI 0.61 to 0.65) by adding age and transforming the Scale using a cubic spline. Risks were underestimated without a non-linear transformation as scores of 8 and 9 had a higher risk that diverged from a linear association. The net benefit of using the tool was greatest between 5 and 8 on the Scale.
Conclusions: The utility of the Clinical Frailty Scale may be as a flag to encourage clinicians to become more comfortable with discussing ageing and death, rather than as a highly discriminating model to classify patients as high risk or low risk. Statistical uncertainty over mortality should not be a barrier to initiating end-of-life care discussions with frail older patients.
Collier A, Appachoo S, Frey R, Jones V, Birtwistle J, Allsop M, et al.
Background: Telehealth palliative care delivery has been shown to be feasible and acceptable for patients, families and clinicians across a number of contexts. However, the rapid implementation of telehealth during the pandemic exposed both challenges and opportunities for optimising telehealth integration in palliative care. This study capitalised on clinicians' experience to better understand the complexities of telehealth and palliative care with a focus on access and equity.
Methods: We deployed a qualitative interview study exploring Australia and Aotearoa New Zealand (NZ) clinicians' perspectives of telehealth with a focus on underserved palliative care populations. The study was underpinned by applied critical realism evaluation. Data were analysed through an equity lens using Srivastava and Hopwood's framework, applying critical realist evaluation questions: what are these data telling us about what works, for whom, in which contexts and with what outcomes?
Results: We recruited a total of twenty-two participants [doctors (n = 7) nurses (n = 11) allied health (n = 4)]. Fifteen participants were based in Aotearoa NZ and seven in Australia. Analysis resulted in the following four key themes: Extending the reach of palliative care; Underserved groups - the thin line of equity and access; Patient safety and quality- the complexities of clinical work; Tele-care, connection and creativity.
Conclusions: Our findings show that although the adoption of telehealth can extend the reach of palliative care, there is, at the same time, the potential to further marginalise those for whom palliative care is already inaccessible. Support and education for clinicians are needed to ensure safe and high-quality telehealth, as well as organisational guidelines and structures to optimise the use of telehealth. There is a need for further research using ethnographic, participatory as well as other qualitative and quantitative methods to identify approaches that optimise access to palliative care and telehealth for underserved groups. This should include the perspectives of patients and families themselves.
Last updated 30 April 2024