Medicine (St Vincent's) - Theses
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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.