DELIRIUM AND THE GOOD DEATH: AN ETHNOGRAPHY OF HOSPICE CARE DAVID WRIGHT, N., BSc, MSc(A), CHPCN(C) Thesis Submitted to The Faculty of Graduate and Postdoctoral Studies in partial fulfillment of the requirements for the Degree of Doctorate of Philosophy in Nursing Faculty of Health Sciences School of Nursing University of Ottawa © David Wright, Ottawa, Canada, 2012 ii 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. iii Acknowledgements Dr. Susan Brajtman, you have been a mentor and a friend since day one of this process. I am honoured to know you and to work with you. Your invaluable insights as a researcher and as an expert palliative care nurse have nurtured my developing scholarship. Your unwavering presence and support have brought me to this point. I am infinitely grateful for our relationship. Dr. Mary Ellen Macdonald, your contributions have far surpassed what could ever be inferred by the title ‘committee member.’ Your expert knowledge of methodology and your willingness to provide ongoing feedback throughout my fieldwork and analysis were truly remarkable. You pushed and challenged my thinking toward areas that I would not have reached on my own. This journey would not have been as meaningful without you. Dr. Betty Cragg, in each of our meetings I took something from our conversation that challenged me to examine my work in new and interesting ways. Your constructive comments on numerous drafts of this thesis as it took shape have been incredibly influential in creating a product that I am proud of. I would also like to acknowledge Lisa Chan, a fellow PhD nursing student and friend. We met just as I was starting the program, and I am grateful for all of your support, both intellectual and emotional. To my colleagues and friends at the Jewish General Hospital in Montreal, you have taught me much about nursing and palliative care, and are my motivation to pursue excellence in this field. I am privileged to be part of your team. Finally, to the participants of this study who opened their doors and their hearts to me over the course of fieldwork, I cannot say thank you enough. You are the soul of this work. iv Acknowledgement of Funding Sources I am grateful to the following sources for financially supporting my training and this research project: Canadian Institutes of Health Research & National Cancer Institute of Canada Strategic Training Program in Palliative Care Research Fonds de la Recherche en Santé du Québec Doctoral Training Award Toronto Dominion Bursary for Graduate Studies in Nursing, awarded by the Jewish General Hospital University of Ottawa Excellence Scholarship v Table of Contents Abstract ....................................................................................................................................................... ii Acknowledgements ............................................................................................................................... iii Acknowledgement of Funding Sources ......................................................................................... iv List of Tables ......................................................................................................................................... viii List of Figures ....................................................................................................................................... viii Chapter 1: Introduction ........................................................................................................................ 1 Origin of an Idea ................................................................................................................................................... 1 Clarification of Terms ........................................................................................................................................ 3 Overview of Problem and Research Question ......................................................................................... 4 Outline of Chapters to Come ........................................................................................................................... 5 Chapter 2: Literature Review ............................................................................................................. 7 End-of-Life Delirium .......................................................................................................................................... 8 Delirium as a problem to be managed ................................................................................................ 11 Sedation ..................................................................................................................................................... 13 An alternative discourse: delirium as a relational experience ................................................. 15 Palliative Care .................................................................................................................................................... 21 Good death ..................................................................................................................................................... 23 Dignity ........................................................................................................................................................ 26 Relationship ............................................................................................................................................. 30 Tensions and challenges ..................................................................................................................... 32 Summary of Literature Review ................................................................................................................... 35 Chapter 3: Theoretical and Methodological Considerations ............................................... 36 Positioning Myself ............................................................................................................................................ 36 Theoretical Lens: Relational Ethics........................................................................................................... 39 Ontology and Epistemology ......................................................................................................................... 42 Multiple realities ......................................................................................................................................... 47 Knowledge as co-constructed ................................................................................................................ 48 A constructivist epistemology for palliative care .......................................................................... 48 Ethnography ....................................................................................................................................................... 50 The nature of ethnographic understanding ..................................................................................... 51 Setting ................................................................................................................................................................... 54 Fieldwork ............................................................................................................................................................