'A distant grief:' Narrative bioethics and the lived experience of alienation in advanced stage cancer patients.

摘要

Narrative bioethics is quite central to the work of bioethics. However, the nature of narrative bioethics is often misunderstood, and its methods of inquiry are sometimes marginalized as medical humanities or anti-theorist critique. This project explores how current misunderstandings about narrative bioethics contribute to blind spots in the advocacy for and care of seriously ill patients, particularly those with advanced stage cancer. Many of these patients suffer considerable distress resulting in the experience of deep alienation. Drawing from insights of a phenomenological-hermeneutical study of the lived experience of alienation, this project offers the initial development of a two-tiered narrative-hermeneutical bioethics. More importantly, this particular narrative investigation suggests important changes for bioethics, medical training, and the care of cancer patients.;In the care of alienated patients, two harms are present: the first harm caused by the illness and its treatments and the second harm caused by dismissal, compartmentalization, or denial of patient distress. In other words, the lived experience of alienation goes unacknowledged in advanced stage cancer patients. To the extent that medical care ignores this disruption, it denies the humanity of the patient. To the extent that medical care increases this sense of disruption, it violates the most basic moral requirement in the practice of medicine: do no harm. Because patient alienation is made worse by medical caregivers, a second harm is done. Chapter one considers the suffering of end-stage cancer patients, and why patient alienation is overlooked in medical care.;A second blind spot happens in bioethical reflection, due to how bioethical work is misconceived. A naturalist perspectival view of bioethics limits how narrative bioethics is practiced by determining legitimate knowledge as that defined by the sciences and formal rationality. A result of this perspective is that interpretive inquiry, which is necessary to knowledge of human experience and value, is side-lined. Not only does interpretive inquiry define narrative bioethics, but it is also central to addressing the deep suffering of such patients. Chapter two reconsiders how narrative bioethics and methods should be defined.;Chapter three considers narrative knowledge, phenomenological description, and hermeneutical interpretation in understanding lived experience. Experience, value, and meaning are central to narrative knowledge. Phenomenological and hermeneutical methods offer additional tools to those used in various forms of narrative analysis. Contemplative reflection through reading and writing leads to an understanding of the relational reality of the one who suffers.;Chapter four explores the experience of alienation, which begins in Zerrissenheit, estranges the patient, evokes a quality of surreality, dislocates the patient, disrupts the experience of time and body, and isolates one from self, others, and the divine. It is a 'distant grief' bar none.;Such reflection suggests outlines for a hermeneutical narrative ethics. Drawing from Emmanuel Levinas, Martin Buber, and Gabriel Marcel, chapter five emphasizes elements not developed in usual models of ethical work: the encounter and moral appeal (presence), hermeneutical reflection (empathy), and moral tasks (hope). In essence, narrative bioethics is in itself ethical work. Seen through the lived experience of alienation, it is a reflective practice of the moral tasks of presence, empathy, and hope. Though narrative methods further correct moral vision, commitment to a hermeneutical-narrative ethics maintains that vision.;Chapter six considers long-ranging implications of this approach for bioethics, medical school curricula, and the care of cancer patients. In better understanding the suffering of advanced stage cancer patients, we may better care for them. At the very least, we should realize how serious is our failure to understand.