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.
O'Connor T, Liu WM, Samara J, Lewis J, Strickland K, Paterson C.
Background: Clinicians are frequently asked 'how long' questions at end-of-life by patients and those important to them, yet predicting timeframes to death remains uncertain, even in the last weeks and days of life. Patients and families wish to know so they can ask questions, plan, make decisions, have time to visit and say their goodbyes, and have holistic care needs met. Consequently, this necessitates a more accurate assessment of empirical data to better inform prognostication and reduce uncertainty around time until death. The aims of this study were to determine the timeframes for palliative care patients (a) between becoming comatose and death, and (b) between being totally dependent and bedfast, and then comatose, or death, using Australia-modified Karnofsky Performance Status (AKPS) scores. The secondary aim was to determine if covariates predicted timeframes.
Method: This is a large retrospective cohort study of 2,438 patients, 18 years and over, cared for as hospice inpatients or by community palliative care services, died between January 2017 and December 2021, and who collectively had 49,842 AKPS data points. An Interval-Censored Cox Proportional Hazards regression model was used.
Results: Over 53% (n = 1,306) were comatose (AKPS 10) for longer than one day before death (mean = 2 days, median = 1, SD = 2.0). On average, patients were found to be totally dependent and bedfast (AKPS 20) for 24 days, before progressing to being comatose. A difference in life expectancy was observed at AKPS 20 among people with cancer (mean = 14.4, median = 2, SD = 38.8) and those who did not have cancer (mean = 53.3, median = 5, SD = 157.1).
Conclusion: Results provide clinicians with validated data to guide communication when answering 'how long' questions at end-of-life. Knowledge of projected time to death can prompt timely conversations while the patient can understand and engage in meaningful conversations. The importance of considering covariates such as location and diagnosis in determining timeframes has been highlighted. Shared decision-making and essential person-centered end-of-life care can be planned.
Yuen EYN, Toke S, Macpherson H, Wilson C.
Background/ aims: Social connectedness is increasingly recognised as influencing health outcomes in cancer caregivers; however, there is little understanding of factors which foster feelings of social connectedness among caregivers when providing care. We sought to examine from the caregivers' perspective, factors which contribute to perceived social connection when providing care to someone with cancer.
Method: Semi-structured interviews were conducted with 20 caregivers of people with cancer. Participants were recruited through social media and were eligible if they were aged 18 + years and had provided care to someone with cancer in the preceding 3 years. Data were analysed thematically using NVivo.
Results: Following thematic analysis of interview data, six overarching themes emerged detailing caregivers' experiences with social support, networks, and connectedness. Themes included: people in caregivers' social networks and communication frequency, supportive communication with people in social networks, challenges with talking with others and seeking support, receiving instrumental support from social networks, impact of the carer role on friendships and community activities, and factors which fostered perceived connectedness.
Conclusion: For caregivers of people with cancer, our qualitative findings suggest the importance of receiving emotional and instrumental support from social networks to cope with, and alleviate the stress and strain of providing care. Development and empirical testing of strategies and interventions that improve social support seeking and subsequently perceived connectedness among caregivers are recommended to improve health and wellbeing.
Mascio R, Lynch S, Phillips JL, Best M.
Objectives: Previous studies have shown that nurses' spiritual care competence is related to characteristics of personal spirituality, training adequacy, and comfort, confidence, and frequency of provision of spiritual care. However, these studies assumed that all participants understood spiritual care in the same way, and used self-ratings of spiritual care competence, which are problematic. Our previous study found that spiritual care was understood in 4 qualitatively different ways that can be arranged in order of competence. This study aimed to re-examine the relationships between nurse characteristics and spiritual care competence, using spiritual care understanding as a proxy for competence.
Methods: Data was collected from a convenience sample of nurses who completed an anonymous, online survey. The survey provided qualitative data about what spiritual care means for them. The survey also provided quantitative data regarding nurse characteristics. This study created sub-groups of nurses based on their understanding of spiritual care, and used the quantitative data to construct a profile of nurse characteristics for each sub-group. Kruskal-Wallis statistical tests determined whether nurse characteristics differed across the 4 sub-groups.
Results: Spiritual care competence was not related to confidence or comfort in providing spiritual care. Relationships with spirituality, training adequacy, and frequency of provision of spiritual care were not linear; i.e., higher competence did not always correspond with higher scores of these characteristics.
Significance of results: The results raise concerns about the construct validity of using comfort and confidence as estimates of spiritual care competence. That the relationships between competence and spirituality, training adequacy, and frequency of spiritual care provision was not as linear as portrayed in extant literature, suggests that outcomes of training may depend on the type of spiritual care understanding subscribed to by training participants. The findings offer insights about how nurses could achieve high levels of spiritual care performance.
Brooks LA, Manias E, Rasmussen B, Bloomer MJ.
Background: Clinicians need specific knowledge and skills to effectively communicate with patients and their family when a patient is dying in the ICU. End-of-life communication is compounded by language differences and diverse cultural and religious beliefs.
Aim: The aim was to develop and evaluate practice recommendations for culturally sensitive communication at the end of life.
Method: Modified two-round eDelphi study. An Australian national sample of 58 expert ICU clinicians of nursing and medical backgrounds participated in an online survey to rate the relevance of 13 practice recommendations. Ten clinicians participated in a subsequent expert panel interview to provide face validity and comprehensive details about the practical context of the recommendations. Survey data were analysed using descriptive statistics, interview data using deductive content analysis.
Results: All 13 practice recommendations achieved item content validity index (I-CVI) above 0.8, and scale content validity index (S-CVI) of 0.95, indicating sufficient consensus. Recommendations prioritising use of professional interpreters and nurse involvement in family meetings achieved near perfect agreement amongst participants. Recommendations to facilitate family in undertaking cultural, spiritual and religious rituals and customs, advocate for family participation in treatment limitation discussions, and clinician access to professional development opportunities about culturally sensitive communication also achieved high level consensus.
Conclusion: These practice recommendations provide guidance for ICU clinicians in their communication with patients and families from culturally diverse backgrounds.
Implications for clinical practice: Clinicians want practice recommendations that are understandable and broadly applicable across diverse ICU contexts. The high consensus scores confirm these practice recommendations are relevant and feasible to clinicians who provide end-of-life care for patients and their family members. The recommendations also provide clear guidance for ICU leaders, managers and organisational policy makers.
Butler AE, Bloomer MJ.
For decades, paediatric intensive care unit (PICU) clinicians have aimed to provide a “good death” for children and families. A good death in PICU is thought to occur when the child is free from pain and suffering, and there is a supportive environment for the child and their family. PICU researchers and clinicians commonly describe a good death as one that acknowledges parental and family roles, reciprocal trust between the family and the PICU healthcare team, accessible information, optimal bedside care, compassionate staff, and support for individual child and family child needs.
However, the notion of the good death in the PICU, and in paediatric care more generally, has been the subject of recent debate, questioning its positionality and appropriateness. Acknowledging that views on the goodness of death likely differ according to social, cultural, religious and educational factors, greater clarity is needed in who the death is good for. Good death narratives are commonly driven by clinicians and researchers, who value the perception of comfort that a good death may bring when active therapy has not worked. However, it is important to note that the notion of a good death primarily serves the needs of clinicians, rather than parents and families, who may never view their child’s death as good.
Last updated 30 April 2024