The lived experience of compassionate love at end of life

This thesis is an investigation of how people experience the death and final arrangements of a significant other person who died at home from a life limiting illness. Inspired by my own lived experience, and recognizing that subjectivity would influence this research, I decided to employ the qualitative approach of heuristic enquiry to discover new meanings from a time marked by irreplaceable loss and critical decision making. Previous studies have shown that in contemporary western society, an expected death predominantly occurs in a hospital, hospice or aged care facility. Consequently, an expected death at home is unusual and outside common experience. Furthermore, Australian social policy is committed to relocating death back into the community, not just as a cost saving measure but also based on the ideology of a good death. I argue that to make death at home a realistic option for more people, greater awareness of how people experience the death and final arrangements is needed. I also claim that despite death being an ubiquitous lifetime event, limited opportunities arise to discuss matters relating to a dead person. Given that the traditional theories of grief and bereavement have promoted 'letting go' and detaching from a relationship with the deceased, the discourse surrounding what occurs in the site of the home when an expected death prevails from a history of disease, remains largely sequestrated from people's conversations. Consequently, the aims of this research have been to discover a rich understanding of the experience at home from those with lived experience for the purpose of informing and extending the support by people at end of life. The findings from this research were generated from the wisdom and insights of twenty eight Tasmanian people. By applying the six stages of heuristic enquiry to discover new meaning from human experience, three temporal dimensions emerged, casting light upon a range of human experience. A deep and committed examination of this topic using self refiexivity and thematic analysis, discovered that the spirit guiding people's decision making at end of life is a set of experiences and responses that I have chosen to call compassionate love. In the final stage of this enquiry known as the creative synthesis, I propose a model which demonstrates how five interdependent practices of compassionate love enable the expression of human qualities of care. These practices facilitate a rich array of people's strengths, resources and capacities providing benefits not only for the person receiving the care but unveiling the potential for self growth and transformation in the journey at end of life. These findings have relevance to social work intervention at end of life and beyond because it is possible that these qualities of care may be obscured in the chaos generated by grief and overlooked when attention is directed towards the negative outcomes that so often represent the experience of bereavement.