Medicine (St Vincent's) - Theses
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ItemResponding to Urgency of Need - the Development of a Triage Tool for Palliative Care( 2020)Specialist palliative care services worldwide face the challenge of a workload that is growing in both volume and diversity. Simultaneously it is well recognised that timely access is crucial for the benefits of palliative care to be fully realized. When responding to a workload that at times may exceed resources, services must develop systems to prioritize patient care in a safe and fair manner. Significant efforts have been made to establish criteria defining which patients should receive specialist palliative care and at what point in the disease trajectory they should be referred, yet little is known about how patients should be prioritized once they have been referred. Unlike the field of emergency medicine and disaster response where systematic triage methods have been refined since World War I, limited attention has thus far been paid to how palliative care services should manage demand and consider urgency of response. A small number of studies have established that palliative care triage is a complex process embedded in organizational culture. Triage tools generated from these studies suffered from poor face validity and inter-rater reliability, and so have not been widely implemented into routine practice. This thesis therefore aimed to determine how the urgency of specialist palliative care needs should be assessed and compared between patients, with the practical outcome to ultimately develop an evidence-based, validated tool for palliative care triage – the Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool. A series of studies were conducted, employing mixed methodologies to address various aspects of the research question and RUN-PC Triage Tool development. An initial qualitative study was undertaken to explore the attitudes and practices of palliative care providers towards triaging palliative care needs. This exploration led to a greater understanding of clinical decision-making that was used to develop a list of the key triage factors which formed the basis of the triage tool. These triage factors were then examined in the second study, a discrete choice experiment. This online international experiment determined the magnitude of effect that of each of the triage factors had on clinicians’ decision-making. These values became the scoring system for the RUN-PC Triage Tool. The third and final study was a validation study that demonstrated good intra- and inter-rater reliability and moderate to good correlation to expert opinion, which was used as the reference standard. This thesis paints a comprehensive picture of how palliative care clinicians approach the challenging task of triage and provides a practical tool to standardise the process that is evidence-based and validated. This research has significant implications for clinical practice internationally and represents an important step towards improving the transparency, consistency and efficiency of triage in palliative care, working towards equitable access for all.
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ItemTowards the integration of palliative care in advanced cancer: an exploration of patient, family and community perceptions of palliative care and views of communication( 2018)Since its inception, palliative care practice has evolved to respond to the emerging evidence base and the needs of the population it serves. This has resulted in the increasing health system focus on models of early integration of palliative care, enabling improved quality of life, prevention of suffering, and the achievement of goals considered important by people with serious illness and their families. Yet, population data from international jurisdictions including those such as Australia with “advanced” systems of integrated care suggest a picture of missed opportunities, with many patients accessing palliative care late in the illness course. This thesis explored patient, carer, and community perceptions of palliative care, and their views of communication about this concept – including at the hospital for those who are experiencing serious illness and in the community more broadly. This was explored with the broader aim to improve engagement with palliative care, and ultimately facilitate the provision of quality care for those with serious illness. Consistent with the Medical Research Council Framework for the development of complex interventions, empirical work was undertaken using mixed methodology over two phases. Exploratory qualitative interviews were undertaken with patients with advanced cancer and their carers. These data informed the development of a public health intervention to communicate information about palliative care to the broader community, which was tested in an online randomised pilot trial. Patients and carers reported inherently negative perceptions of palliative care, understood as inpatient nursing care, relevant only when no other anti-cancer treatment options remained. Patients revealed the difficulties faced in speaking about death other than in implicit terms, with this topic perceived to be outside the realms of medical consultations. Instead, patients perceived health professionals used the term ‘palliative care’ as a tool to talk about dying. ‘Palliative care’ was understood as a euphemism for death, and personified to mean my death, in turn also becoming ‘unspeakable’. Carers reported their needs for communication about palliative care to be ideally staged overtime, providing education about the tasks of palliative care separate from referral. Once death was imminent, carers wanted open communication with their health professionals, including spoken acknowledgement that death was close, using simple, direct language, and including the words ‘death’ and ‘dying’. A narrative communication intervention was demonstrated to be an acceptable approach to provide education about palliative care to community members. Participants reported significant improvement in attitudes to palliative care post intervention compared to baseline. An evidence-based narrative spoken by a health professional was found to hold the most promise for further investigation in a definitive trial. The results of thesis have significant implications for achieving the routine integration of palliative care in clinical practice. They highlight key opportunities to target education and improve communication about palliative care, and can inform future public health efforts to develop a systematic, evidence-based approach to community engagement. As such, this work provides the next steps to begin to transform experiences of end of life care within health systems.