Abstract: This thesis reports on a research project which explored the phenomenon of supporting a family member with an intellectual disability who is dying in a community setting. The research purpose was to enhance professional understanding of what it is like to encounter this lived experience. Literature back-grounding the phenomenon and philosophical and theoretical constructs embraced by the researcher are outlined. An explanation is given of the hermeneutic phenomenological methodology which was utilised. The main method of collecting research data was through conducting five open-ended interviews with participants who had supported a dying child or sibling. The participants' family members were aged between 3 and 52 years old at the time of their deaths. Their specific intellectual disabilities included Down syndrome, a metabolically induced disorder and a non-identified syndrome. The family members had died from a variety of terminal illnesses and in a range of community settings. Interpretive analysis was achieved through reflexive journaling and hermeneutic intuiting of interview transcripts and field notes. The research findings have been subjected to rhetorical consideration in the light of further literature and poetic texts. Research findings are expressed metaphorically as groups of boulders representing themes and sub-themes. Three major themes were revealed as having impacted on the river voyage shared by participants and their dying family members. These were Interlocked Companionship, Search for New Balance and Permeable Interaction. An assessment is offered of the strengths and weaknesses of the research project. The thesis concludes with recommendations for reflective practice, evidence based practice, service development and areas of future research.

Abstract: In this project the author reveals how she is observing and thinking as she cares for people who are dying. She records her reflections and insights and reveals that there is life right up to the moment of death, having observed terminally ill patients choosing the precise moment to die. She describes her observations of these moments by using poetry and stories, and explores the implications for her practice as a result. The author presents her reflections using an individualistic, reflective and exploratory perspective which is informed by the work of nursing scholars. This paper is framed using the metaphors of a journey and a window to indicate the reflective process that the author used to journal her observations in practice over time.

Abstract: This paper presents an exploration of a foundational goal of palliative care nursing which is to help patients die with dignity. The paper presents this practice exploration as a journey to gain understanding of the concept of dignity; the author notes that it does not avoid the difficulties encountered in practice situations because dying with dignity is unique and curiously also invisible and different for everyone. Much of human life is conducted through stories and much of nursing involves telling and listening to stories. Many of our social institutions are comprised almost entirely of opportunities for telling and retelling stories. Nurses are constantly listening to patients telling them what is going on in their lives and because of this the stories related here are written bold and raw. The three stories explore and reveal in-depth details of nursing practice that evolved and changed after reflection. The paper also reveals and explores the untold and often painful stories that challenge nurses' capacity to offer dignified care. To deepen the exploration towards discovering ways to articulate the complexity of dignity, the author reflected on the nature of the practice changes documented in the stories and then used a range of diverse literature and her love of the paintings and philosophy of a New Zealander, Ralph Hotere, to support her ideas that dignity is indeed a complex phenomenon.

Abstract: This study drew upon the theoretical insights of Michel Foucault to provide a discursive analysis of the term euthanasia, and the issues surrounding the “right-to-die”. It involved an analysis of primary texts from; nursing, general, and legal literature as well as the media between the years 2002-2004. Drawing upon data researched, the study analyses the main discourses regarding the practice of euthanasia for terminally ill individuals. The two competing discourses that emerged were what the author termed the sanctity-of life-discourse and the right-to-die discourse. The aim of the study was to uncover the discourses understanding of “truth” regarding the right-to-die. The analysis revealed that a small percentage of cancer sufferers (5%) die with their pain insufficiently treated and the right-to-die discourse claims that no individual should have to suffer needlessly, asserting the individuals right to autonomy. Directly opposing this is the sanctity-of life-discourse which states all life is sacred and nothing can justify euthanasia as an acceptable practice in society. These findings indicate the need for effective palliative care and pain management when caring for the terminally ill individual. The legal, ethical and moral implications of euthanasia are many and this study discusses the effects these may have on health professionals involved with the care of terminally ill patients. The study revealed an increasing deployment of the right-to-die discourse in the media and revealed concerns regarding the nursing profession's lack of preparation to deal with euthanasia if it becomes a legal option in end of life care.

Abstract: Hope is considered an elusive, vague, over-used, and ambiguous concept in nursing practice which lacks clarity, but hope is essential to the quality of life in the terminally ill. Therefore, hope is an important concept to research further. A gap in nursing research has been identified in the area of hope in terminal illness. The aims of this research were to clarify the concept of hope as perceived by patients with a terminal illness; to develop hope as an evidence-based nursing concept; and to contribute new knowledge and insights about hope to the relatively new field of palliative care. Utilising Rodgers' (2000b) evolutionary concept analysis methodology and thematic content analysis, 17 pieces of research-based literature on hope as perceived by adult patients with any terminal illness pathology (from the disciplines of nursing and medicine) have been reviewed and analysed. Hope's attributes, antecedents, consequences, social-cultural variations, temporal variations, surrogate terms, and related concepts have been considered. An exemplary case of the concept in action is presented along with the evolution of the concept hope in terminal illness. Ten essential attributes of the concept were identified in this research: positive expectation, personal qualities, spirituality, goals, comfort, help / caring, interpersonal relationships, control, legacy, and life review. The evolution of hope in terminal illness has evolved from patients hoping for a prosperous healthy future to an enrichment of being is more important than having or doing. Patients' hopes and goals are scaled down and refocused in order to live in the present and enjoy the time they have left with loved ones. Hope in the terminal phase of one's illness is orientated in the past and the present, hope in the here and hope in the now. The author concludes that by completing all the steps to Rodgers' (2000b) evolutionary view of concept analysis, a working definition and clarification of the concept in its current use has been achieved, providing a solid conceptual foundation for further study. Recommendations are made for hope-enhansing strategies, that may help to maximise the quality of life of terminally ill patients in the future.

Abstract: This article reports a study that sought to understand the experience of a group of Caucasian men with end stage renal failure managing their own haemodialysis therapy in their homes. The study used a critical interpretive methodology. The renal setting was critically viewed as a specialised health care context constituted by several interrelated discourses. Although established by the dominant professional discourse, it also includes a number of others, in particular an obscure client discourse that is a response to the dominant discourse. Initially, participants' own interpretations of their individual experiences were outlined. These were then collectively reinterpreted by contextualising them in terms of the critical view of the renal setting, in order to discern their own views as renal clients that were obscured by the language and ideas of the dominant discourse with which they had been enculturated. From an analysis of the set of accounts derived from interviews with six participants, four concerns of the renal client discourse were identified. These concerns were: (1) suffering from continuing symptoms of end stage renal failure and dialysis; (2) limitations resulting from negotiating dialysis into their lifestyle; (3) ongoingness and uncertainty of life on dialysis; and (4) altered relationship between autonomy and dependence inherent in living on dialysis. One specific implication of this study is that the distinctive potential of the nursing role in renal settings lies beyond the performance of a range of technical tasks, in addressing the experience of people living on dialysis, described here as the concerns of the renal client discourse.