Delirium and the Good Death: An Ethnography of Hospice Care

Title: Delirium and the Good Death: An Ethnography of Hospice Care
Authors: Wright, David
Date: 2012
Abstract: Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.
CollectionThèses, 2011 - // Theses, 2011 -