The ordinary becomes extraordinary: the occupation of living whilst dying
AuthorMorgan, Deidre Diane
AffiliationSchool of Health Sciences, Faculty of Medicine, Dentistry & Health Sciences
Document TypePhD thesis
CitationsMorgan, D. D. (2012). The ordinary becomes extraordinary: the occupation of living whilst dying. PhD thesis, School of Health Sciences, Faculty of Medicine, Dentistry & Health Sciences, The University of Melbourne.
Access StatusThis item is currently not available from this repository
© 2012 Dr. Deidre Diane Morgan
Palliative care and occupational therapy research has rarely focused on the experience of disrupted embodiment and impact on everyday life. The purpose of this study was to better understand this lived experience for people with advanced cancer living at home, in Victoria, Australia. Employing a pragmatic qualitative approach informed by hermeneutic phenomenology as defined by van Manen (1990), it examined peoples’ lived experience of disrupted embodiment and the impact of this on everyday life. While initial analysis was guided by the structure of Colaizzi’s (1978) descriptive methods, final analysis utilised an interpretive approach. Consistent with an interpretive approach, conceptual frameworks of embodiment (Gadow, 1982; Leder, 1990) and occupation (Kielhofner, 2008) were used to direct inquiry and to understand better participants’ ways of being-in-the-world (Lopez & Willis, 2004; Toombs, 1995; van Manen, 1990; Wojnar & Swanson, 2007). The literature review highlights the extensive focus of palliative care on ameliorating physical and psycho-spiritual suffering. Maintaining active participation in everyday activities or occupations at the end-of-life receives minimal attention, yet available studies suggest participation facilitates adaptation between self and a rapidly changing body, and serves to ameliorate suffering related to functional decline. Despite functional decline, ongoing participation in day-to-day activities is highly valued by people at the end-of-life. In this study, people told their stories about living with rapidly disintegrating bodies and how this influenced their ability to participate in essential and valued occupations. Thematic analyses aimed to identify themes built from empirical data and evaluate these against the conceptual frameworks. Relentless bodily disintegration disrupts the person’s relationship with time and hinders ability to engage in everyday activities including self care and valued social and recreational pursuits. While people experience an ever shifting sense of self, and ability to engage in daily occupations is increasingly restricted, a desire to live as fully as possible only intensifies in the face of these changes. Contending with this deterioration whilst seeking to live as actively as possible is the work of adaptation at the end-of-life. As people strove to continue active engagement in everyday activities and developed spontaneous strategies to do so, for the most part this was without clinical guidance or support. Although several people expressed a desire for increased support to interpret changing bodies and assistance to optimise function wherever possible, this type of support was limited. Conventional rehabilitation models are not geared towards a downward functional trajectory and an alternative model of care is needed. The concept of habilitation (Koenig Coste, 2004; Raia, 1992) that focuses on optimising function rather than emphasising restoration, irrespective of direction or place in the disease trajectory, warrants further exploration. This thesis concludes by highlighting the need for clinician awareness of the ineffable nature of disrupted embodiment, and the way that routine nature of everyday occupation conceals the significance of participation at the end-of-life. A challenge is made for clinicians to look beyond effective physical and psycho-spiritual palliation as end points in themselves, to ways in which they can enable active participation in everyday occupations.
Keywordspalliative care; occupation; embodied experience; functional decline; phenomenology; MOHO
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