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  • NURSES’ MORAL EXPERIENCES OF

    ETHICALLY MEANINGFUL SITUATIONS IN END-OF-LIFE CARE

    Kristina Ma

    A thesis submitted in partial fulfillment of the requirements for the Master’s of Science degree in Nursing

    School of Nursing Faculty of Health Science

    University of Ottawa

    © Kristina Ma, Ottawa, Canada, 2018

  • ii

    Abstract

    Nursing ethics in end-of-life care is often framed in reference to dramatic moral dilemmas and

    resulting moral distress that nurses experience in practice. While important, this framing

    obscures the moral significance of nurses’ everyday practice. The purpose of this study was to

    explore nurses’ moral experiences of palliative and end-of-life care, including situations that are

    enriching. The research question was: What are the moral experiences of nurses engaged in

    ethically meaningful situations in end-of-life care? Semi-structured interviews were conducted

    with five nurses from across Canada who practice in settings where palliative and/or end-of-life

    care are an important part of their role. Informed by interpretive description and a theoretical

    scaffold about nurses’ moral practice, a descriptive and thematic analysis of the data was

    performed. The participants described ethical challenges relating to patient autonomy, futility,

    prognostication, and navigating requests for medical assistance in dying. Experiences that were

    ethically enriching involved situations where the nurse, patient, and family worked together to

    create a peaceful and dignified death. Taken together, the participants’ narratives revealed them

    as morally engaged in their everyday practice, where such moral engagement is both reflective

    and relational. This study expands understanding about how nurses’ stories of end-of-life care

    reveal their capacity for moral sensitivity. This study also contributes to the articulation of a

    theoretical lens for examining the moral dimensions of nursing work. By explicating the

    relational dimensions of ethically meaningful experiences, including relationships with wider

    structures that facilitate and constrain the possibility for ethical action, this theoretical lens can

    support researchers to think creatively about palliative and end-of-life nursing from an explicitly

    ethical perspective.

  • iii

    Acknowledgements

    I would first like to acknowledge my thesis supervisor, Dr. David Kenneth Wright. Thank you for inspiring a curious and critical part of me that I never knew existed. You challenge me to think creatively and the passion you have for your work is infectious. I am endlessly grateful for the compassion and support you provided in my many moments of vulnerability while undertaking this thesis. To my research committee – Dr. Brandi Vanderspank-Wright, Dr. Wendy Peterson, and Dr. Franco Carnevale – thank you for giving your time and insights to this project. I am truly humbled to work among your brilliance. Brandi, thank you for generously sharing in this journey from the start. Your insights and thoughts on critical care nursing and end-of-life at the onset of this work inspired much reflection on my own moral experiences as a critical care nurse, all the way until the very last paragraph of the thesis. Wendy, thank you for your accessibility, unfaltering encouragement, and intellect. Franco, thank you for your inquisitive mind, your expert insights in both palliative care and ethics, and for challenging me to think critically. To the Canadian Nurses Association, thank you for the unbelievable opportunity to work with nurses at a national level. To Pat Elliott-Miller, Josette Roussel, and Lucie Vachon, I am so grateful for your generosity and willingness to engage in ongoing dialogue about this work. I would have never expected that this journey would land me on the steps of the CNA House. To my nursing colleagues and classmates, thank you for your immeasurable support, guidance, dialogue, and companionship throughout this process. To Angelina and Lisa, my fellow graduate students and close friends, this journey would not have been as meaningful without our regular coffee dates and heart-to-hearts. Your intellectual and emotional support has been invaluable. To my family – Mom, thank you for always offering a listening ear throughout the ups and downs of completing this thesis. Dad, thank you for always encouraging me to appreciate and value the ‘growing pains’. Kayla – thank you for editing and always knowing just when to send me words of encouragement. To Trausti, there are no words that can adequately convey my gratitude to you. Thank you for always knowing what to say. Life with you has so much colour and I cannot wait to see where our adventures take us next. To the five incredibly thoughtful and generous nurses who participated in this study. Thank you for bravely sharing your experiences with me. It was a privilege to listen to your stories. You are the heart and spirit of this work.

  • iv

    Table of Contents Abstract ........................................................................................................................................... ii Acknowledgements ........................................................................................................................ iii Table of Contents ........................................................................................................................... iv Glossary ......................................................................................................................................... vi Chapter 1: Introduction ................................................................................................................... 1

    Problem Statement ..................................................................................................................... 5 Outline of Chapters .................................................................................................................... 6

    Chapter 2: Pertinent Literature ........................................................................................................ 7 End-of-Life Care: Terminology and Definitions ....................................................................... 8 Nursing Care at the End-of-Life .............................................................................................. 11

    Nurses’ role in transitioning to end-of-life care .................................................................. 11 Nurses’ role in the provision of palliative and end-of-life care ........................................... 14

    Building and maintaining relationships. ......................................................................... 15 Nurses as advocates ........................................................................................................ 17 Nurses as coordinators of care. ....................................................................................... 18 Providing comfort and dignity ........................................................................................ 18

    Nurses’ role in post-mortem and bereavement care. ........................................................... 23 Ethical Challenges in End-of-Life Care ................................................................................... 27

    Relational tensions .............................................................................................................. 27 Medicalization of dying ....................................................................................................... 32 Perceived or actual inability to provide “good” care ........................................................... 33

    Nursing Moral Engagement in the Provision of End-of-Life Care .......................................... 35 Moral distress ...................................................................................................................... 35 Moral resilience ................................................................................................................... 38

    Summary of the Literature Review .......................................................................................... 40 Chapter 3: Theoretical and Methodological Considerations ........................................................ 42

    Interpretive Description ........................................................................................................... 42 Theoretical forestructure. .................................................................................................... 45

    Nursing as moral practice ............................................................................................... 46 Methodological Considerations ............................................................................................... 57

    Sample ................................................................................................................................. 57 Participants .......................................................................................................................... 60 Procedures for data collection. ............................................................................................ 60 Data analysis ........................................................................................................................ 62 Ethical consid