Living toward death : the enduring work of terminally ill people : a thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy at Massey University, Albany, New Zealand

Abstract

This study explores the lived experience of terminally ill people using the personal narratives of patient, kin and nurse. Six sets of patient-kin-nurse form the sample, with data gained via individual interviews. The study is guided by the values of phenomenological philosophy while narrative theory assists data analysis. Interpretation of the data is informed by Anthony Giddens' social constructs relating to modernity and self-identity. The diagnosis of a terminal illness usually forces major changes in the lives of patients, and often provides time for reflection. Although the experience must be individual it is also part of a common human experience that may be enriched by the knowledge of others who have lived through similar ordeals. Yet the constantly evolving nature of the social and health context suggests that the experience of terminal illness is never static and that fresh understandings of living with a life-threatening illness are always necessary. The thesis is that living toward death can be seen as the enduring work of the patient. The patient, in response to experience and events of illness, develops a readiness for change via a process of constantly reconstructing his selfhood. Readiness for change allows him to maintain hope during uncertainty, knowing that change is certain and that he has overcome previous challenges. In this way a sense of enduring self is created that is functional for him and his kin as death comes closer. The interrelational nature of living toward death is presented in the notions of negotiating support and handing over, and these aspects also contribute to the patient's evolving selfhood. The sense of enduring self developed by the patient may contrast with the kin and nurse expectations when they are working towards closure, challenging practitioners to renew their focus on the patient's position and putting aside already acquired assumptions of dying experiences. Similarly the patient's need to negotiate for support and care appears to question the caring actions of kin and nurse, and demands that existing understandings of caring relationships are re-examined. The study shows that the patient's sense of enduring self that develops during his terminal illness has the potential to transcend his death, and that where this happens, both patient and kin approach his death with readiness.