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.
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ItemTreatment decision making amongst older people with cancer and their healthcare professionals( 2016)Background: Internationally the population is ageing. As cancer is predominantly a disease of older age, increasing numbers of older people will confront decisions about cancer treatment with their healthcare professionals. Such decisions are potentially more complex at older ages due to an increased risk of comorbid medical conditions, concomitant medication usage, and physical and cognitive limitations. Personal values and preferences, which may differ widely between older people and healthcare professionals, are central to many cancer treatment decisions. The aim of this thesis is to explore treatment decision making amongst older people with cancer and their healthcare professionals. Methods: A variety of sources of data and methodological approaches have been used. The views and experiences of older people with cancer and healthcare professionals were explored using a grounded theory approach. Decision making amongst healthcare professionals within the cancer multidisciplinary team was considered through descriptive statistical analysis and a qualitative hermeneutic approach to observational data collected in cancer multidisciplinary meetings (MDMs). Finally, decision making in oncological consultations was investigated using quantitative content and qualitative thematic analysis of audio-recorded consultations. Results: Older people made cancer treatment decisions within the context of life stage, drawing upon life experiences and personal relationships. Healthcare professionals faced competing tensions when considering treatment recommendations for older people, including between chronological age and other factors influencing perceptions of age, avoiding harming older people due to treatment side effects whilst also avoiding under-treatment, and considering patient preferences whilst respecting family views. In cancer MDMs, discussion of geriatric assessment domains was limited, however, general descriptors of physical status were common. These non-objective lay terms, such as ‘fit’ or ‘well’, could influence treatment recommendations. In oncology consultations decision making items prioritised by healthcare professionals were more likely to be discussed than those prioritised by older people. The specific technical terminology used to discuss biomedical factors contrasted with the non-specific terminology used to discuss physical and social function. However, a conversational style of interaction facilitated patients describing their social supports, physical function, and preferences. Conclusions: Throughout this thesis, lack of language and unspoken factors impacted upon treatment decision making amongst older people with cancer and healthcare professionals. Healthcare professionals appeared inarticulate when discussing geriatric assessment domains and non-medical items, lacking language to facilitate such discussion. Items older people prioritised in decision making were rarely discussed during either cancer MDMs or oncology consultations. Within the medical decision making literature, the broader relational, experiential, social, and cultural context to medical decisions is rarely discussed. A broader, expanded language is required to allow articulation of the many unspoken factors which influence medical decision making. This expanded language is required in interactions between healthcare professionals, in interactions between healthcare professionals and patients and their companions, and also more broadly within the medical literature. Medical decisions are complex, contextual, relational and experiential, as well as biomedical. Healthcare professionals need to recognise these complex factors to be able to place older people’s values and preferences at the centre of their medical care.