1 AVOIDING FUTILITY: HOW NURSES AND PHYSICIANS EXPERIENCE EMOTIONS, PSYCHOSOCIAL FACTORS, AND THEIR PROFESSIONAL ROLES AS INFLUENCING THE END-OF-LIFE DECISION MAKING PROCESS by MELISSA JANELLE DE BOER B.S.N., Trinity Western University, 2012 A THESIS SUBMITTTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES We accept this capstone project as conforming to the required standard Dr. Richard Sawatzky, Supervisor Dr. Sheryl Reimer-Kirkham, Second Reader Mrs. Pat Porterfield, Third Reader TRINITY WESTERN UNIVERSITY September 28, 2018 AVOIDING FUTILITY 2 Abstract In this qualitative study, five critical care nurses and four critical care physicians were interviewed about their experiences of the end-of-life (EOL) decision making process in intensive care. For both professional groups, although operating from distinctly different vantage points, a shared mission and desire to avoid futility were foundational to undertaking the process, as well as the climactic aim to be achieved. This desire heavily shaped initiation and engagement of what was presented as an ambiguous decision making process lacking formalized structures. Three themes emerged of elements that most influenced their variable experiences of the EOL decision making process: moral weightiness, family receptiveness, and the individual philosophy of approach. These findings emphasize and provide explanation to the wide amount of subjective variability experienced in this value-laden decision making process, and shed light on the competing emotional, psychological, and social interests that are both protected and made vulnerable for ICU nurses and physicians in the EOL decision making process. It is of the essence that there be greater understanding of the EOL decision making process in an intensive care context to provide better support to nurses and physicians. Keywords: end-of-life, intensive care, decision making, nurses, physicians, influence, futility, qualitative, interpretive description AVOIDING FUTILITY 3 Acknowledgements First, to whoever may read this document, thank-you for making the effort of embarking on the journey of its many pages. May you find insight into the complexity of undertaking an EOL decision making process in such an intensive setting. Second, to the participant critical care nurses and physicians. Thank-you for taking the time to participate in this study to share your unique stories, emotions, and insights. Thank you for your openness regarding an area of your work that is often under-recognized as such a crucial part in your role of caring for patients and families. Your words will stick with me in inspiration to pursue continued improvements in care for patients and families and promote better collegial environments in which to care. Thank you as well to all those who assisted with recruitment, especially to Sarah Crowe, CNS. Your continued support throughout my Masters journey has been a light to me of how this work can be made meaningful in practice. To my thesis committee. To Dr. Rick Sawatzky, for your consistent challenge to consider alternative viewpoints and your consistent, clear guidance in carrying out this project process. To Dr. Sheryl Reimer-Kirkham, for your consistent inspiration, affirmation, and stimulating creativity to think in new ways. To you both for your wisdom, insights and support throughout this journey. From the very beginning, I have had a clear confidence that I was in more than capable hands. Thank you to my family for your encouragement, love, and support. Thank you to my dear, dear friends who have walked this nursing journey alongside me, and those who have encouraged me in my endeavour to complete this project. I cannot tell you how grateful I am for all the life and light you have all given me along the journey of this project. AVOIDING FUTILITY 4 To my husband Kendrick. There are no words to express my gratitude for your steadfastness in walking alongside me, encouraging me and cheering me on in this project. You have made countless sacrifices of time, energy, work, finances, and activities to make this project possible. You are the most exceptional husband and will be the most amazing father for our family in a few short weeks. This project would not have been achievable without your love and support. Thank you for having all the confidence in the world in me. Above else, to God, for your continued presence, faithfulness and sustenance in providing me with the ability, opportunity, and supportive community to complete this project. May this be a small offering for your Kingdom in the restoration of all that is broken in this present world. May all the glory go to You. AVOIDING FUTILITY 5 Table of Contents Abstract ........................................................................................................................................... 2 Acknowledgements ......................................................................................................................... 3 List of Tables .................................................................................................................................. 9 List of Figures ............................................................................................................................... 10 CHAPTER ONE: INTRODUCTION AND BACKGROUND .................................................... 11 Background ................................................................................................................................... 11 Definition of Terms....................................................................................................................... 14 End-of-Life ................................................................................................................................... 14 End-of-Life Decision Mmaking Process .......................................................................................... 15 Emotions ..................................................................................................................................... 16 Psychosocial Factors .................................................................................................................... 16 Professional Roles ........................................................................................................................ 17 Project Description........................................................................................................................ 18 Project Purpose and Research Objectives ..................................................................................... 18 Thesis Method ............................................................................................................................. 18 Relevance and Significance........................................................................................................... 19 Outline of Paper ............................................................................................................................ 20 CHAPTER TWO: LITERATURE REVIEW ............................................................................... 22 AVOIDING FUTILITY 6 Literature Review Methods........................................................................................................... 22 Search and Retrieval Strategies .................................................................................................... 22 Data Extraction and Synthesis Methods ........................................................................................ 24 Included Studies .......................................................................................................................... 25 Literature Review.......................................................................................................................... 27 Emotion ....................................................................................................................................... 27 A Good Death .............................................................................................................................. 34 Roles in End-of-Life Decision Making ............................................................................................ 35 Psychosocial Factors .................................................................................................................... 39 Chapter Summary ......................................................................................................................... 46 CHAPTER THREE: RESEARCH DESIGN, METHOD AND PROCEDURES ........................ 47 Research Design............................................................................................................................ 47 Sampling ....................................................................................................................................... 48 Procedures ..................................................................................................................................... 50 Data Collection ............................................................................................................................ 50 Data Analysis ............................................................................................................................... 52 Ethics............................................................................................................................................. 55 Scientific Quality: Trustworthiness and Integrity ......................................................................... 56 Chapter Summary ......................................................................................................................... 57 CHAPTER 4: FINDINGS............................................................................................................. 59 AVOIDING FUTILITY 7 Presentation of Findings ............................................................................................................... 59 Avoiding Futility ........................................................................................................................... 62 Ambiguous Decision making Process ............................................................................................ 67 Health professionals getting “on the same page.” ......................................................................... 69 Individual Philosophy of Approach ............................................................................................... 74 Moral Weightiness ....................................................................................................................... 86 Family Receptiveness ................................................................................................................... 91 Chapter Summary ....................................................................................................................... 101 CHAPTER FIVE: DISCUSSION ............................................................................................... 103 Discussion of Findings ................................................................................................................ 104 Avoiding Futility ......................................................................................................................... 105 Ambiguity of the Decision Making Process .................................................................................. 112 Individual Philosophy of Approach ............................................................................................. 116 Moral Weightiness ..................................................................................................................... 119 Family Receptiveness ................................................................................................................. 121 Limitations................................................................................................................................. 125 Chapter Summary ....................................................................................................................... 127 CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS ......................................... 128 Summary (including conclusions) .............................................................................................. 128 Recommendations ....................................................................................................................... 130 AVOIDING FUTILITY 8 Recommendations for Nursing Practice ...................................................................................... 130 Recommendations for Nursing Policy ......................................................................................... 134 Recommendations for Nursing Leadership .................................................................................. 136 Recommendations for Nursing Education ................................................................................... 137 Recommendations for Nursing Research .................................................................................... 139 Conclusions ................................................................................................................................. 141 References ................................................................................................................................... 143 Appendix A: Search Strategy...................................................................................................... 149 Appendix B: PRISMA Diagram ................................................................................................. 152 Appendix C: Table of Most Relevant Articles for Thesis ......................................................... 153 Appendix D: REB Approval ....................................................................................................... 162 Appendix E: Letter of Information ............................................................................................. 163 Appendix F: Informed Consent .................................................................................................. 164 Appendix G: Interview Guide Version 1 .................................................................................... 171 Appendix H: Interview Guide Version 2 .................................................................................... 174 Appendix I: Codebook ................................................................................................................ 176 AVOIDING FUTILITY 9 List of Tables Table 1: Participant Demographics…………………………………………………………….50 10 List of Figures Figure 1: The End-of-Life Decision making Process Thematic Design………………………60 AVOIDING FUTILITY 11 CHAPTER ONE: INTRODUCTION AND BACKGROUND Death is a common experience in the intensive care unit (ICU) and both physicians and nurses have a large role to play in the decision making process that facilitates the often complex transition from a curative to palliative focus (McAndrew & Leske, 2015). This process is considered to be multifaceted and intensely emotional not only for patients and families involved in this distressing experience, but also for health professionals. Current end-of-life (EOL) best practice includes having the attending physician and nurse guide the family through the decision making process; however, the literature acknowledges optimal EOL decision making may be skewed because of poor communication, role ambiguity, and lack of guidance. (Flannery, Ramjan, & Peters, 2016; Schwarzkopf et al., 2015). Personal beliefs, confidence, knowledge, and prior experiences of physicians and nurses have been identified as determinants of EOL care initiation. Social milieu, values, ethnicity, religious affiliation, and organizational culture also appear to impact decision making; however, the roles of these psychosocial forces have not been fully explored. The life-saving, ultra-technologized context of intensive care units, and the dependency on family/surrogates to help determine a patient’s wishes, further complicate the EOL decision making process and can pull the health professional into paradoxical tension, generating a myriad of emotions. This thesis endeavoured to better understand how the emotions and psychosocial factors of nurses and physicians, as well as their professional roles, influence the EOL decision making process in the intensive care unit. Background Critical care environments primarily have a curative intent, and continually advancing technology presents the ability to stretch the body beyond organic boundaries (Mohammed & AVOIDING FUTILITY 12 Peter, 2009). The use of complex life-sustaining technology can make it challenging to discern if an individual is recovering or not as at times the body relies exclusively on the technology to maintain signs of life. This lack of clarity creates an extreme environment in which to provide EOL care. Despite the focus on supporting life, it is estimated that 20% of patients in adult ICUs will pass away in the environment, meaning that witnessing death and dying is a regular occurrence for both nurses and physicians (Beckstrand & Kirchhoff, 2005). With patients often unconscious, sedated, or unable to verbally communicate due to critical illness, physicians and nurses are frequently required to have an expanded role in the EOL decision making process. These decisions can place great demand, responsibility, and emotional burden on the health professionals involved (Flannery, Ramjan, & Peters, 2016). Difficulty in achieving consensus, as well as problems in the collegial relationships between nurses and physicians during EOL decision making, have been well-documented and may be explained by the fact that these decisions are not merely cognitive exercises, nor are they purely objectively considered (Laurent, Bonnet, Capellier, Aslanian, & Hebert, 2017). Given that EOL decisions are inherently ethical and value-laden, complexity emerges from the emotions experienced by health professionals in relationship with patients, families, and one another, and also from previous experiences, religion, personal beliefs, cultural background, and organizational factors. As Laurent et al. (2017) asserts, “end-of-life decisions place health professionals in the midst of intense suffering and pain,” (p. 2024), and the impact of this needs to be further explored in relationship to clinical decision making. Finally, the experiences of undertaking the EOL decision making process are likely to be unique related to the professional roles undertaken by nurses and physicians. While working together within the larger professional team, the above mentioned factors are likely to generate AVOIDING FUTILITY 13 individualized experiences within and between these professional groups. There is a gap in knowledge about the roles of physicians and nurses in the EOL decision making process within the critical care setting and this thesis sets out to address this gap. In order for the research question in this project to be addressed diligently, it must be one that I, as a nurse researcher, have a deep, genuine interest in (Streubert & Rinaldi Carpenter, 2011). My personal interest in this topic began in my fourth year as an undergraduate nursing student. It was then, during my final preceptorship on a Tertiary Palliative Care Unit, that I became exposed to the realities of EOL care and the many complex decisions made by health professionals and families to arrive at that point. This occurred simultaneously with my employment as a student nurse and graduate nurse in a critical care environment where I experienced many deaths and decision making experiences that I deemed to be less than ideal. With both of these clinical areas as developing passions and interests for me, I began to think more deeply about the knowledge and insight I had gained in these two polarizing environments and how they could be merged. Furthermore, I experienced radical variations in my own experiences with the EOL decision making process in critical care, with some instances being extremely positive and others being profoundly negative. I began to be intrigued as to why such variation occurred. As a nurse, I understood that my experiences were not experienced as a health care professional in isolation but were heavily influenced by the interdisciplinary team I collaborated with. I felt that if I conducted a study that could garner a glimpse into how this EOL decision making process was subjectively experienced and influenced by both nurses and physicians, and if this would shed light on ways of improving the process, then it would be a study worth conducting. As my career has progressed, I have obtained a specialty certificate in High Acuity Nursing, and gained further experience working in a Level 1 Trauma Centre caring AVOIDING FUTILITY 14 for acutely ill patients. I have also worked in the community as a Palliative Care Nurse Consultant, helping to regularly facilitate varying aspects of EOL decision making. These two contrasting positions have renewed my interest on a professional level in garnering understanding of how both physicians and nurses experience the EOL decision making process in a critical care setting. In the remainder of this chapter, I will provide a definition of terms setting the scope and boundaries of the key concepts of this research. A brief overview will be given of the research question, research objectives, method, and relevance of this topic will be discussed. Definition of Terms Further exploration surrounding EOL decision making in an intensive care context necessitates the defining of terms and creation of boundaries around such terms. For the purpose of this research, the key concepts discussed will be: end-of-life, the end-of-life decision making process, emotions, psychosocial factors, and professional roles. End-of-Life EOL care refers to the support and medical care provided to patients and families during the “time surrounding death” (National Institute on Aging, 2017, para 2). Often the area with greatest acuity, intensive care units are heavily reliant on technology in order to sustain life and have a strong curative focus, blurring the boundaries of when EOL care should be initiated. Some contend that provision of EOL care in this setting is in itself paradoxical to the environmental context (Calvin, Kite-Powell, & Hickey, 2007; Mohammed & Peter, 2009). The practice of life-sustaining technology in these settings means that decisions surrounding EOL AVOIDING FUTILITY 15 care often involve decisions to withhold or withdraw life-supporting therapies or relinquishing cardiopulmonary resuscitation (Calvin et al., 2007). Medical futility also comes into consideration in the literature when discussing EOL in ICU environments (Flannery et al., 2016; Gallagher et al., 2015; Jox, Schaider, Marckmann, & Borasio, 2012). While futility is not consistently defined throughout the literature, it usually refers to those interventions considered to be ineffective or unlikely to produce significant benefit for the patient, and is associated with lack of attainable goals of care (Jox et al., 2012). Throughout the literature, nurses are typically identified as those most likely to recognize futility (Flannery et al., 2016; Gallagher et al., 2015; Jensen, Ammentorp, Johannessen, & Ørding, 2013; Jox et al., 2012; Mohammed & Peter, 2009). While futility is not a focus of my research, it must be identified and recognized as a relevant EOL problem specific to the intensive care treatment where a life-sustaining treatment may be continued despite the recognition of its futility, and that this may have emotional and psychosocial bearing on health care providers. In the literature, and for the purpose of my research, EOL care in an intensive care setting can be considered an umbrella term including cases of medical futility, withdrawing care, withholding care, deescalating care, limiting life-sustaining treatment, or terminal care. End-of-Life Decision making Process According to Thelen (2005, as cited in Gallagher et al, 2015), EOL decision making is “the process that health care providers, patients and patients’ families go through when considering what treatment will or will not be used to treat a life threatening illness” (p. 795). In an ICU setting it is this process that is considered the most difficult or demanding aspect of providing quality EOL care (Coombs, Addington-Hall, & Long-Sutehall, 2012; Gélinas, Fillion, Robitaille, & Truchon, 2012). However, “contemporary models of palliative care do not AVOIDING FUTILITY 16 highlight such complex decision making during the transition stage from curative intervention to end-of-life care, and the resultant impact of this on health care staff” (Coombs et al., 2012, p.525). The boundaries of this research will be limited to the decision making process within the time frame of the initiation of discussions about the need for EOL care to the time when a decision is made to cease curative attempts with the recognition that this decision will ultimately bring about the EOL. The initiation of discussions may occur either inter-professionally between nurses and physicians, or between health professionals and the family or patient. Emotions Emotions are “affective states that have arousing or motivational properties” (Kozlowski, Hutchinson, Hurley, Rowley, & Sutherland, 2017). In recent decades, the role of emotions in decision making has been increasingly considered; however, traditional theoretical models of clinical decision making continue to exclude them, considering decision making to be a purely rational, cognitive, and objective process (Kozlowski et al., 2017). Emotions experienced and expressed by patients, family members, and health care professionals all have an impact on the decision making process. These emotions can include: fear, confusion, frustration, relief, sadness, and hopefulness, to name only a few. Psychosocial Factors Psychosocial is a broad term that encompasses involvement of “psychological and social aspects,” and it is the hope of this research to deconstruct the term psychosocial into these individual terms, describing both intrapersonal and interpersonal experiences (Psychosocial, (n.d.). It was necessary to use such broad terminology when exploring the wide range of variability experienced in decision making amongst health professionals, particularly in consideration of a responsibility as profoundly demanding and value-laden as EOL decision AVOIDING FUTILITY 17 making (Robichaux & Clark, 2006). Psychosocial factors include beliefs, values, attitudes, religion, confidence, previous experiences, ethnic and organizational culture, social milieu, interpersonal relationships, and intrapersonal communication. These factors are relevant as potential influencers for health professionals when making emotionally-charged, value-laden, complex decisions regarding another person’s living and dying. While to some it may seem that emotions could fit within the psychosocial dimension, it is important to make them distinct. Emotions are those feelings that arise unrequested and must be managed and mitigated, and may even arise from psychosocial convictions, while psychosocial factors are elements imposed from outside of the individual and must be acknowledged and identified. Treating them as separate terms is necessary because of the unique roles emotions and psychosocial factors have in potentially influencing the EOL decision making process. As will be discussed further, the role of emotions, although acknowledged, has not been fully explored and as such, warrants distinction. Professional Roles Professional roles can be difficult to define as they are often highly contextualized. Most simply, professional roles can be characterized as the expected functions of members of a particular profession. In the case of this research, this would include critical care nurses and physicians practicing in the intensive care setting. The expectations of their functions may come from regulatory bodies, professional standards, or expectations imposed by themselves or other societal stakeholders. Roles are also often tied to discussions of codes of conduct, or the possession of specific knowledge and skills to carry out particular duties or functions. AVOIDING FUTILITY 18 Project Description Project Purpose and Research Objectives The aim of this qualitative study was to understand how emotions, psychosocial factors and professional roles were experienced by individual intensive care nurses and physicians as influencing the process of EOL decision making. The primary research objectives addressed were: 1. To explore presumed and perceived roles and responsibilities in EOL care delivery for physicians and nurses; 2. To explore personal beliefs and attitudes that may shape nurses’ and physicians’ delivery of EOL decision making; 3. To explore the impact of psychosocial factors on shared-decision making in EOL care; 4. To explore the role of emotion in clinical decision making around EOL care for nurses and physicians; and 5. To explore how the underlying philosophic foundations, the “mission, and moral interests” of each group (nurses and physicians) shape the decision making process. Thesis Method A qualitative approach was used to gather meaningful, in-depth responses to the experiences of critical care nurses and physicians involved in the EOL decision making process. Specifically, Thorne’s (2016) method of interpretive description was employed to gain applicable clinical insight what influences the experiences of health professionals in this process. The appeal of this specific methodology stemmed from its “praxis orientation” with its “comfort within the world of complexity and contradiction, its enthusiasm for ways of thinking that AVOIDING FUTILITY 19 acknowledge the messiness of the everyday practice world” (Thorne, 2016, p. 29). Moreover, interpretive description is valuable in that it “extends beyond mere description and into the domain of the ‘so what’ that drives all applied disciplines” (Thorne, 2016, p. 36). Relevance and Significance Theoretically, clinical decision making in intensive care has traditionally been characterized as a rational, objective, collaborative process; and in an ideal situation is balanced between respective stakeholders (Kozlowski et al., 2017; McAndrew & Leske, 2015). However, the nature of EOL decision making inherently inserts the values, beliefs, and assumptions of all parties involved. This subjective, value-laden process between individuals can add emotional complexity, as well as being influenced by a myriad of psychosocial factors including personal beliefs, prior experiences, social milieu, culture, and intra- and inter-professional communication. It is my belief that the emotional and psychosocial dimensions present in EOL decision making in an intensive care context warrant greater exploration as to the influence and shaping force they may have on the process. The intensive care unit is an environment programmed towards a life-saving, curative focus; however, death is a common reality. Health professionals may possess an expanded role in decision making due to the nature of the patient population, and as such the ICU represents a unique area to study EOL decision making and the experiences of physicians and nurses. Although satisfactory to a small minority of health professionals, mostly physicians, EOL decision making in an intensive care context is fraught with tension and emotion. The literature reviewed throughout this project advocates that the shaping forces in the decision making process in EOL care warrants further study, and that the intensive care setting presents unique challenges to this transition (Robichaux & Clark, 2006). Further exploration of the burden of AVOIDING FUTILITY 20 emotions experienced by nurses and physicians in the decision making process may provide greater understanding and a basis for developing interventions regarding education and communication to promote high quality EOL care delivery in a collaborative manner. The paradoxical and polarizing environment of the ICU means that initiating discussions around death and dying or de-escalating treatment in a technological, life-sustaining, curative unit potentially exacerbates the emotional dimension experienced by practitioners. Decision making that is in the patient’s best interest involves the emotional proximity of health professionals with patients and families, and despite the professional’s attempts to practice emotion blocking in decision making, the myriad of emotions experienced by each group and the impact of these have not been fully explored. While consensus between health professionals is ideal when communicating about EOL, collaboration between nurses and physicians is affected by a multitude of personal, psychological, social and organizational factors, as well as underlying professional philosophic differences. The unique experiences of both nurses and physicians as individual professional groups may give greater insight into the gap between the theoretical roles experienced and the difficulty of enacting those roles in practice. It is likely that intra and interdisciplinary tensions will remain despite ongoing communication and education interventions unless underlying psychosocial forces, the role of emotions, and the differing professional motivations are fully explored. Outline of Paper This thesis is comprised of six chapters: Chapter One has introduced the background, key terms, and research method. In Chapter Two, the search strategy and relevant literature will be reviewed. The research methodology and subsequent design and sampling used to explore this AVOIDING FUTILITY 21 phenomenon are discussed in Chapter Three, along with considerations of ethics and scientific quality. Chapter Four presents the study findings of key themes highlighted through data analysis of the interviews I conducted. In Chapter Five, the findings are situated and discussed in relation to the current literature. Finally, Chapter Six concludes the thesis by presenting a project summary and resultant recommendations for nursing practice, leadership, education, policy, and future research. AVOIDING FUTILITY 22 CHAPTER TWO: LITERATURE REVIEW The purpose of the literature review was to gain an understanding of how emotions, psychosocial factors, and individual understandings of professional roles may influence the EOL decision making processes experienced by doctors and nurses in ICUs. In this chapter, I will describe the search strategy to locate relevant literature, and then describe the search results, which yielded twenty-five relevant articles. The search strategy and overview of the results will be provided. This will be followed by a thematic presentation of the current state of knowledge regarding nurses' and physicians' experiences of EOL decision making in intensive care contexts. This will both provide contextual understanding and reinforce the purpose for this study. Literature Review Methods Search and Retrieval Strategies A literature review was conducted using Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Evidence Based Medicine Reviews (EBMR), Joanna Briggs Institute, and Google Scholar databases. Google Scholar was primarily used for forward citation searching. Reference checking of relevant articles was also employed. This literature search was completed with assistance of university librarian, Duncan Dixon. A summary of the literature review search strategy can be found in Appendix A, and a corresponding PRISMA diagram is shown in Appendix B. The four main concepts were (a) “ICU nurses OR physicians,” (b) “emotion OR psychosocial,” (c) “decision making,” and (d) “end-of-life.” Each of these core concepts was expanded to encapsulate a wide range of results. CINAHL and MEsH headings and the THESAURUS were used in the appropriate databases. The second key concept of “emotion OR AVOIDING FUTILITY 23 psychosocial” was only used in the CINAHL and Medline databases in order to gain more specific results. The key concepts were searched individually and then joined together using the Boolean operator “AND” to give a general overview of critical care nurses and physicians EOL decision making experiences. The nature of the study topic and its intensive care context with rapid advancing technology necessitates searching current literature, and as a result studies were reviewed from the years 2005-2017. All studies reviewed were written in English. Scholarly articles were included if they had an intentional focus on at least one of the following criteria: • the initiation of EOL care in critical care settings, • decision making amongst and across different professional groups, • were specifically focused on the ICU or admission to ICU settings, and • the feelings of clinicians in relation to EOL decision making. Those studies looking specifically at either nurses or physicians were included, but those looking at the perspectives of both nurses and physicians were prioritized as most relevant. The literature search was confined to an adult intensive care context, and all those regarding pediatrics or neonatal intensive care units were excluded, as these environments involving minors may represent an added emotional complexity as well as additional psychosocial factors, such as age of consent. Similarly, EOL decision making outside of an intensive care context, such as acute wards, oncology wards, or emergency departments were excluded in order to gain insight into the environmentally specific challenges of a technologically advanced, life-saving focused context. Those studies that exclusively considered non-clinician perspectives such as family or patient perspectives were also excluded as this study was specifically interested in gaining better understanding of the experiences of health AVOIDING FUTILITY 24 professionals. Interventional studies that attempted to address psychosocial challenges, for example addressing communication barriers through introduction of additional team members or prescriptive educational sessions were excluded because the raw experiences of nurses and physicians prior to intervention were the focus of this study. Furthermore, due to the focus on the research objectives to better understand that which might be behind the communication tensions experienced in the EOL decision making process including philosophic foundations, underlying missions and moral interests, it was decided that studies addressing surface-level communication challenges with interventions were deemed to not be relevant to the researcher. Finally, those studies that looked at the provision of EOL care in ICU settings after a decision had been made to withdraw or withhold care were excluded as they did not fit within my previously defined criteria of the time frame of the decision making process. Data Extraction and Synthesis Methods In total, twenty-five articles were selected for the literature review. The basic information of each study including author, publication, purpose, data collection methods, analysis, statistical significance, clinical implications, and appraisal strengths and limitations was extracted and placed in a Matrix Table in Microsoft Excel, following guidelines by Garrard (2014). Extraction questions were created to encapsulate data relevant to my research objectives. The following were used to guide the process of extracting additional relevant information from each article: 1. What are the emotions critical care nurses/physicians experience in EOL care? 2. What represents a “good death” experience for nurses and physicians in intensive care? 3. What represents a “bad death” experience for nurses and physicians in intensive care? 4. What roles do nurses/physicians take on in EOL care? 5. How do nurses/physicians experience decision making in EOL care? AVOIDING FUTILITY 25 6. What is the experience of professional relationships among nurses and physicians during EOL decision making? 7. What do nurses/physicians consider to be the best practices in collaborative transition to EOL care? 8. What obstacles do nurses/physicians experience in collaborative transitions to EOL care? These extraction questions were developed to obtain relevant findings in the current existing literature related to my research objectives, as well as to identify gaps in knowledge in order to develop a rationale for this thesis. Refer to Appendix C for a summary of the most relevant articles pertaining to this project. Included Studies The majority of the studies sought to describe, identify, or explore the experiences and perspectives of nurses and physicians surrounding EOL decisions (Langley, Schmollgruber, Fulbrook, Albarran, & Latour, 2014). Three studies sought to investigate the variability in physician EOL decision making through investigating associations between education, beliefs, and practices, and evaluating physicians’ reasoning and communicative timing in decision making (Gutierrez, 2013; Sprung et al., 2008). Several studies investigated the relationship of cultural context to EOL decision making, including one qualitative study that looked at ICU nurse experiences with EOL decision making across five countries (Brazil, Germany, England, Ireland, and Palestine) (Gallagher et al., 2015), and a larger quantitative study that looked at the experiences and attitudes of critical care nurses across Europe (Langley et al., 2014; Latour, Fullbrook & Albarran, 2009). Challenges, stressors, and obstacles for nurses and medical staff in transition to a patient’s EOL trajectory for nurses and medical staff were reviewed by multiple studies (Bach, Ploeg, & Black, 2009; Espinosa, Young, & Walsh, 2008; Gélinas et al., 2012; AVOIDING FUTILITY 26 Jensen et al., 2013; Schwarzkopf et al., 2015), while others focused on the individual roles played by nurses and physicians in the decision making process (Bach et al., 2009; McMillen, 2008). Finally, two recent studies looked specifically at emotion, with Laurent et al. (2017) seeking to better understand how emotional dimensions influence EOL decision making in ICUs, and Kozlowski et al. (2017) undertaking a literature review to identify and synthesize empirical evidence regarding the role of emotion in clinical decision making. While the literature review by Kozlowski et al. (2017), unlike all other studies in the present literature review, includes clinical decision making contexts outside of intensive care, due to its relevance regarding the role of emotion it was considered important to include in this review (2017). While every attempt has been made in this thesis to offer a fair representation using the available material, when looking through the articles included in the review, representative sampling is a concern. Articles that sampled both nurses and physicians consistently included more nurses than physicians, with only two studies having equal representation of physicians and nurses. Ethnicity and religious affiliations of participants were rarely presented in any of the studies. However, length of critical care experience was emphasized in almost every study. Besides Robichaux and Clark’s (2006) study, which looked at “expert” critical care nurses, most studies included professionals with a wide range of experience from one year to over thirty years. While gender was not reported in every study, it appears that overall females are more represented in this literature review than male participants. The methodology of the studies reviewed for this thesis proposal varied, the majority being qualitative in nature, reflecting a variety of methodologies. The breakdown is as follows: seven used description, four used grounded theory, three employed phenomenology, one narrative analysis, and five used questionnaires that were analyzed using quantitative methods. Three of AVOIDING FUTILITY 27 the articles were integrated literature reviews representing both qualitative and quantitative studies. One article reviewed was an ethical analysis which examined sustaining intensive care measures as a moral practice (Mohammed & Peter, 2009). Most research studies had a small sample size (many due to the qualitative methodology chosen) or were geographically or contextually isolated, limiting transferability or generalizability of the results. Literature Review This synthesis is organized and presented as systematically arranged data filtered through the extraction questions. The core concepts of the extraction questions such as emotion, the concept of a good death versus a bad death, individual roles, and psychosocial factors will be reviewed. These core concepts will then be further broken down to look at the unique experiences of the nursing and physician groups. Emotion The role of “emotion” was a chief aim of only two of the studies in this literature review. The lack of studies that address emotion is consistent with Kozlowski et al.’s literature review (2017), which looked at clinical decision making across a variety of settings and was only able to include five studies regarding emotion in relation to clinical decision making. Despite this limited finding of specific research, the concept and expression of emotion is still prominent, as emotions were identified or discussed in some capacity by more than twenty of the twenty-five articles in this literature review. Kozlowski et al. (2017) notes a unique challenge of this topic in that EOL literature generally discusses emotion with prominence, whereas decision making is assumed by most models to be an objective and rational process. Furthermore, a high-intensity setting, such as an ICU that relies heavily on objective data, would likely further understate acknowledgement of the subjective in decision making. This is confirmed by the literature, AVOIDING FUTILITY 28 which demonstrates clinicians in practice discussing their need to separate and exclude emotional responses from clinical situations and decisions in order to achieve beneficial outcomes (Hov, Hedelin, & Athlin, 2007; McAndrew & Leske, 2015). While there are distinctly different responses from nurses and physicians related to emotion, as discussed below, the literature acknowledges there are some shared emotions between these two groups of health professionals. The EOL decision making process in intensive care is described by both groups as “challenging and rewarding” (McAndrew & Leske, 2015). The challenging emotions include anxiety, stress, fear, frustration, and distress, and these seem to be related to communication difficulties, poor collaboration, and poor timing of discussions (Flannery et al., 2016; McAndrew & Leske, 2015). While the literature discusses moral distress extensively for nurses in relation to EOL decision making, McAndrew and Leske (2015) acknowledge that moral distress is present in both groups and that both nurses and physicians feel a sense of failure if an intensive care patient does not survive (Espinosa et al., 2008). Decision making and facilitation of the transition from intensive-care curative treatment to EOL care were seen in the literature as demanding and emotionally laborious due to the ultimate outcome (Brooks, Manias & Nicholson, 2017). A heavy responsibility was felt by intensive care teams because these decisions were “no longer made on the wards” meaning that EOL discussions and advance care planning were perceived to be not occurring in less acute areas (Coombs et al., 2012, p. 523). Limited positive mutual emotions are described in regards to EOL decision making, other than mutually experienced satisfaction when cohesive collaborative approaches were used (Flannery et al., 2016). Nurses’ emotions. The emotions specifically experienced by nurses in the EOL decision making process are rich and substantive and have entangled roots. Overall, nurses’ emotions are AVOIDING FUTILITY 29 profoundly negative, with expressions of fear, sadness, frustration, discomfort, confusion, helplessness (Bach et al., 2009; Espinosa et al., 2008; Gallagher et al., 2015; Hov et al., 2007; Robichaux & Clark, 2006). The EOL decision making process and carrying out care left nurses feeling emotionally drained, overcome by mixed feelings of privilege and suffering, as well as feeling unsupported in the emotions experienced (Calvin et al., 2007 & Gélinas et al., 2012). This resulted in tremendous energy expenditure by nurses. Gélinas et al., (2012) acknowledges that nurses are at great risk for coping problems and intense suffering during decision making at EOL in intensive care (Calvin et al., 2007; Espinosa et al., 2008). Additional negative emotion was expressed in nurses’ experiences of working with physicians through the EOL decision making process. Nurses in two of the articles described feeling unheard, frustrated, ignored, angry, powerless, lacking control, and tense while collaborating (Espinosa et al., 2008; Gallagher et al., 2015). Their perception of exclusion from decision making left them with feelings of anxiety, anger, and frustration, and it is these feelings that are associated with burnout (Espinosa et al., 2008; Gallagher et al., 2015). Even when nurses are included in the decision making process, they report continuing to experience frustration when their views are not taken seriously (Gallagher et al., 2015). When the nurses who were interviewed disagreed with EOL decisions made by physicians, they spoke of feeling isolated (Flannery et al., 2016). Feelings of isolation and loneliness emerged again when they were expected to carry out the decision that had been made despite their objections (Flannery et al., 2016; Hov et al., 2007). While nurses acknowledge the divergent spheres of knowledge and activity between medicine and nursing, this often leaves them feeling cautious and fearful (Calvin et al., 2007). They describe not wanting to deviate from what a physician has communicated, or hesitant to venture into discussions for fear of crossing AVOIDING FUTILITY 30 into what is considered the “medical domain” (Calvin et al., 2007; Gallagher et al., 2015). However, nurses openly express frustrations when EOL conversations are focused solely on what they perceive to be medical priorities with discussions fixated primarily on mortality and morbidity. In these experiences, nurses feel passionate about the need to minimize suffering and manage symptoms of the patient and family (Bach et al., 2009). It is clear that nurses have a reverential view of the medical perspective as they admit their personal feelings, reactions, and confidence are often based on how the comprehensive picture they present of a patient’s situation was judged by physicians (Hov et al., 2007). Overall, challenging interpersonal relations with physicians leave nurses afraid to give input in decision making and a lack of consensus and collaboration creates great stress for nurses caring for patients during this EOL decision making process (Calvin et al., 2007; Gélinas et al., 2012). While nurses experience different emotional connections to individual patients and families, nurses overall appear to feel an increasingly intimate relationship with the patient during EOL decision making. This strong identification with the patient leads to a sense of ownership and that “they alone” understand the patient’s feelings (Calvin et al., 2007). Nurses are “anxious” to provide high quality care for families and to manage symptoms, relieving suffering and distress (Gallagher et al., 2015). If a nurse disagrees with a patient’s or family’s beliefs, their strong identification with the patient can generate feelings of indifference and emotional difficulty, leading to the nurse taking on an objective, stoic and methodical approach (Flannery et al., 2016). Nurses additionally experience frustration in the decision making process with families when the loss of personhood and the imminence of death appears obvious to nursing staff but not to the families. However, nurses also experience personal heartbreak, AVOIDING FUTILITY 31 emotional pain, and suffering while watching families grieve (Calvin et al., 2007; Hov et al., 2007). Nurses’ judgement in decision making was also described as being affected by emotive elements such as “feelings” of therapeutic obstinacy and futility. These feelings were reinforced by practicing in a technologically dominant environment (Laurent et al., 2017). Lack of knowledge and experience reduced confidence and led to feelings of discomfort in EOL discussions. Although nurses overall express a lack of confidence in the initiation of EOL discussions and feel constrained at times to communicate with families around this topic, it is acknowledged that the combined effect of experience, education, and maturity may mitigate these feelings (Espinosa et al., 2008). While it is recognized amongst nurses that discussions regarding EOL care are not easy, and nurses understand the need for consensus amongst parties, they experience frustration during slower transitions to EOL care related to a strong feeling of needing to minimize suffering (Bach et al., 2009; Flannery et al., 2016; Gallagher et al., 2015). Despite internal conflict between nurses’ feelings and desires during the decision making process, nurses often describe feelings of relief once the decision has been made (Espinosa et al., 2008). “Ethical suffering” is reported by nurses in the EOL decision making process (Gélinas et al., 2012, p. 32). Examples of this across the examined literature included times when nurses experienced going against their own values, feeling morally responsible but powerless to change what was happening, perceiving prolongation of unnecessary treatment, not being able to provide optimal care, and dealing with conflicting demands of intensive care and EOL occurring simultaneously (Espinosa et al., 2008; Gélinas et al., 2012; Robichaux & Clark, 2006). It is of note that nurses experienced greater emotional burden with feelings of medical futility than AVOIDING FUTILITY 32 physicians, and that this may contribute to moral distress (Espinosa et al., 2008; Mohammed & Peter, 2009). Nurses believe that the dissociation, personal grief, and depersonalization that they experience is invisible to their peers and superiors, and it is well documented that unrecognized suffering experienced by nurses can lead to disengagement, silence, and permanent changes in ethical values (Espinosa et al., 2008; Robichaux & Clark, 2006). Negative emotion is undoubtedly prominent and profoundly negative across the literature as described above. However, some positive emotion during the decision making process is described by Calvin et al. (2007) where nurses admit that while it is challenging, it can also be considered “worthwhile” and a “privilege” to engage in the EOL decision making process. When engaging in the EOL decision making process, the patient’s status may still be in limbo, and positive emotions occur as well in relation to the positive prognosis of the patient, for example, when a patient shows signs of recovery, or, when nurses recall patients who survived. Involvement of nurses in EOL decision making was shown to positively influence their feelings of job satisfaction (Latour et al., 2009). Nurses undoubtedly experience a myriad of emotions in EOL decision making, and while descriptions of nurses’ experiences are prominent across the literature, the question regarding the degree of influence these emotions have on the decision making process remains unanswered. Physicians’ emotions. The literature regarding emotions of physicians was scanty compared to that of nurses. However, this small quantity, along with the nature of the descriptions of emotions and the unique differences between these descriptions and those of the nurses, is significant. Like nurses, physicians admit to emotional exhaustion and isolation in EOL decision making in intensive care settings. In contrast, however, to the experiences of nurses, this isolation appears related to a sense of responsibility and the perception of being AVOIDING FUTILITY 33 undermined by having to carry multiple roles beyond their capacity such as “notary, lawyer, and family psychologist” (Laurent et al., 2017). In one study, physicians describe the overall process of EOL decision making in intensive care as an “emotional tug of war” (McAndrew & Leske, 2015, p. 5). Regarding interpersonal relationships, physicians recognize that there are tensions between physicians and nurses, but they also experience tensions among the various other physicians who may have different roles in a patient’s care during an intensive care stay (Laurent et al., 2017). Emotions for intensive care physicians are associated with inexperience (Flannery et al., 2016). EOL decision making forces physicians to confront the limitations of medicine, and a junior physician in one study self-reflects that until that happens, one can feel all-powerful and able to “save everybody” (McAndrew & Leske, 2015, p.6; Laurent et al., 2017). The tension that physicians experience internally has an external impact as well, with physicians expressing that they feel worn out and tired when poor collaboration occurs with nurses and families (McAndrew & Leske, 2015). While nurses possess a rich vocabulary of negative emotions experienced, overall physicians simply express a sense of “difficulty” related to decision making (Westphal & McKee, 2009). This sense can be attributed to a variety of situations that arise in EOL decision making in intensive care contexts, such as determining where to draw the line in deciding whether to continue or discontinue treatments, and disagreements with family members. These difficulties influence the process of decision making, as physicians admit they may continue to treat a patient rather than spend time speaking with a challenging family or requesting an ethics consultation (Westphal & McKee, 2009). AVOIDING FUTILITY 34 Physicians display unease when asked to define medical futility. According to Jox et al. (2012), personal emotions such as fear or guilt are the most frequently cited reasons why lifesustaining treatment is continued. The scant literature describing the emotional experience of physicians during EOL decision making may be related to the intentional blocking of emotions that occurs, as Kozlowski (2017) states that physicians required facilitation to be made aware of the emotional aspect of their response to patients after they denied they were influenced. Finally, Kozlowski (2017) found in one study that some physicians were convinced that an emotional bias did not exist in their clinical reasoning and decision making. A Good Death The extraction questions looking at a “good” versus “bad” death were meant to flesh out the philosophical and sociocultural underpinnings held by nurses and physicians around death and dying, and the paradox of pursuing this path in an environment with an intense life-saving, curative focus. There was limited data garnered from this literature review regarding this question, which may be due to the search strategy. However, it is my belief that this lack of information also represents a relevant gap in the discussion on differing “moral interests” and “missions” that nurses and physicians seek to uphold as professional participants in the EOL decision making process (Laurent et al., 2017, p. 2029). Nurses view a good death as one that is gentle and without suffering and this mission is supported by the roles they enact as well as the emotions they identify experiencing (Laurent et al., 2017). For nurses, then, a bad death that they seek to avoid is one that Laurent et al. (2017) suggests is “ultra-technicized” and increases the patient’s suffering through prolonging the dying process or delaying the EOL decision making process (p. 2025; Gallagher et al., 2015; McAndrew & Leske, 2015; Robichaux & Clark, 2006). Timing is also considered key for nurses AVOIDING FUTILITY 35 in the delineation between a good and bad death. While timing is not critically defined by the literature, it would seem that “timely” relates to a moment in time for the EOL decision making as occurring as close as possible to the moment when curative efforts stop having their intended effects. Nurses consider it successful if a timely de-escalation of treatment occurs and if timely discussions with families are included and according to Robichaux & Clark (2006), they consider a prolonged death to be torturous and ugly (Brooks et al., 2017; Gallgher et al., 2015; McMillen, 2008; Robichaux & Clark, 2006). Physicians’ representation of a good death in intensive care is largely concerned with the family, including being available for them for discussions, and protecting them from the sudden death of their loved one (Laurent et al., 2017; McAndrew & Leske, 2015). This concern could lead them to delay decisions to withdraw treatment. Representations of a bad death for physicians are not explored (Laurent et al., 2017, McAndrew & Leske, 2015). Mohammed and Peter (2009), in their ethical analysis, acknowledge that sudden deaths may derail the idea of a good or peaceful death for both families and health professionals, and may cause family members to view the medical staff as the “killers” of the patient (p. 297). These snapshots of health professionals’ experiences of good and bad deaths, and their separate concerns shed light on the underlying interests and goals of each group. This understanding will be relevant when seeking to determine the psychosocial experiences of nurses and physicians. Roles in End-of-Life Decision Making While reviewing roles in decision making may seem rather concrete in a study looking at psychosocial and subjective factors influencing EOL decision making, Mohammed and Peter (2009) acknowledge that the way in which “we assign, accept, or deflect responsibilities reveal AVOIDING FUTILITY 36 our understandings of our own and others’ identities, relationships, and values” (p. 296). The roles in EOL decision making for nurses in intensive care have been extensively explored in the literature; however, there remains a lack of understanding of the mutual roles played by nurses and physicians (Flannery et al., 2016; Schwarzkopf et al., 2015). Roles appear to be self-assigned by professional title; however, there also appears to be assumed and perceived roles that nurses and physicians assign to one another. Multiple studies confirm that health professionals generally agree that the role of the physician is a fundamentally authoritative position, bearing overall responsibility for the EOL decision making process (Brooks et al., 2017; Coombs et al., 2012; Flannery et al., 2016; Laurent et al., 2017; McMillen, 2008). However, nurses, while recognizing a submissive role, desire to provide input into the decision making process, and they express in the literature a sense of moral obligation to ‘act’ even when the doctors are perceived to have sole authority (Brooks et al., 2017; Flannery et al., 2016; Gallagher et al., 2015; Laurent et al., 2017; McAndrew & Leske, 2015; McMillen, 2008). Furthermore, nurses and physicians agree that it is nurses who spend the most time with the patient and are therefore in a unique position to discuss EOL wishes. Both parties recognize that nurses should ideally be involved in the decision making process, yet there is noted to be inconsistent inclusion of nurses (Flannery et al., 2016). Reduction in role ambiguity was alleviated with EOL care plans and standardized procedures that clearly identified responsibilities. However, values and opinions of medical staff were the primary determining factors for the implementation of these protocols (Brooks et al., 2017; Espinosa et al., 2008). Overall, the role of supporting patients and family was a priority for both nurses and physicians; however, the carrying out of this priority was divided between the groups, with medical staff giving intermittent updates to patients and families regarding prognosis and AVOIDING FUTILITY 37 treatment plan, and nursing staff providing ongoing bedside care (Coombs et al., 2012). The role of families and patients being directly involved in decision making was identified by both groups as necessary. Nurses role in end-of-life decision making. Nurses’ roles were consistently identified across the literature as advocates and educators, primarily for the patient, and secondarily to the family (Bach et al., 2009; Calvin et al., 2007; Jox et al., 2012; McAndrew & Leske, 2015; McMillen, 2008; Robichaux & Clark, 2006). Laurent et al. (2017) found that this role may even extend to the point of forming an alliance with the family against the physician, rather than striving for consensus amongst health professionals. Advocacy occurs through journeying with patients and families, through active listening and emotional support, and by assuming an advisory role of sharing information and questioning decisions of family members that may prolong suffering of the patient (Bach et al., 2009; Calvin et al., 2007; Gallagher et al., 2015; Latour et al., 2009; McAndrew & Leske, 2015; Mohammed & Peter, 2009; McMillen, 2008; Robichaux & Clark, 2006). An informal role of being the one who alerts the physician when EOL decisions are needed in intensive care is also described by nurses (Flannery et al., 2016). This role in the subtle coaxing of the physician denotes an under-acknowledged and yet active participation in the transition from narrow intensive measures to broader holistic support, which requires that nurses have strong emotional reasoning and management skills (Flannery et al., 2016; Gallagher et al., 2015; Kozlowski et al., 2017). Facilitating this transition from a curative to a comfort focus takes place between nurses and physicians as well as nurses and families, leaving nurses in the middle. Nurses fulfill a complex role, navigating multiple social landscapes and contextual factors (Flannery et al., 2016; Gallagher et al., 2015; Gélinas et al., 2012). The ability to alert physicians AVOIDING FUTILITY 38 comes from the tasks performed by intensive care nurses, which include constant observation, attentiveness, and diligence, generating a unique holistic knowledge of the patient (Hov et al., 2007). This knowledge, plus expertise in the integration of clinical, relational, and ethical assessments demonstrated by intensive care nurses, is a pre-requisite to taking action during the decision making process (Robichaux & Clark, 2006). While nursing’s role in EOL decision making appears robustly defined with terms such as advocate, educator, and supporter, the actualization of their role is in fact, variable, and appears from the literature to be dependent on physician inclusion, and the individual nurse’s level of experience (Flannery et al., 2016; Robichaux & Clark, 2006). Furthermore, the way in which they perceive their role warrants further considerations. Multiple studies recognize that nurses at times view their role of advocacy for a vulnerable patient and enabling involvement of family members as an obligation that is stressful, demanding, and burdensome, and a role that requires extensive nursing knowledge (Bach et al., 2009; Gallagher et al., 2015; Hov et al., 2007; Robichaux & Clark, 2006). Noticeable tension is seen in the literature for nurses attempting to balance their submissive role of following physician orders with the advocacy role for patients and families (Laurent et al., 2017; Calvin et al., 2007; Gallagher et al., 2015). When nurses experience disagreement with the beliefs of the patient or family there is noticeable distancing, resulting in a self-removal from the decision making process and a lack of advocacy. This leaves the nurse at times, simply providing basic care and performing only necessary tasks for the patient (Calvin et al., 2007; Gallagher et al., 2015; Hov et al., 2007; McAndrew & Leske, 2015). This stoic approach is associated with “feelings of inner conflict, anxiety, and stress” due to disagreement with EOL decisions, and it is apparent that these emotions of frustration impact the nurses’ role in EOL decision making (Flannery et al., 2016, p. 101). AVOIDING FUTILITY 39 Physicians’ role in end-of-life decision making. Physicians have a clearly identified responsibility for being the ultimate authority in the EOL decision making process, yet, they face the significant challenge of navigating a shared decision making process with families. They identify families simultaneously as being at the heart of the process as well as an obstacle to be avoided (Calvin et al., 2007; Laurent et al., 2017). According to the literature, physicians perceive themselves as advocates for patients by taking on an advisory role to families. However, they also avoid interactions with families (Westphal & McKee 2009) for fear of confrontation and subsequent legal repercussion. In a study of European intensive care units, the primary reason cited for physicians pursuing EOL decision making was that the patient was unresponsive to therapy, yet physicians acknowledge that it can take time to discern prognostication and arrive at this conclusion (Gutierrez, 2013; Sprung et al., 2008). In this European context of health care, as well as in Australian contexts, physicians continue to excessively dominate the EOL decision making process in paternalistic patterns of unilateral decision making and may be unaware of the difficulties seen by other participants in the decision making process (Flannery et al., 2016; Sprung et al., 2008). However, many European physicians also see EOL decisions as part of everyday life in intensive care, requiring mainly medical judgement, and in Jensen et al.’s (2013) study of Danish intensive care units, physicians expressed general satisfaction with the decision making process (Sprung et al., 2008). Psychosocial Factors When exploring the roles and experiences of nurses and physicians in EOL decision making across the literature, several psychosocial influential factors were discussed. Personal beliefs and knowledge about quality of life and EOL care, and personal and professional AVOIDING FUTILITY 40 experiences with death and dying appear in the literature to in some way influence the experiences of nurses and physicians in decision making (Flannery et al., 2016). Furthermore, feelings of connection to patients and families, are also significant in shaping the decision making process (Flannery et al., 2016). Personal beliefs. “The authority to make a diagnosis of dying”, although a responsibility readily bestowed to physicians by other health professionals, appears to be informed by numerous factors beyond objective clinical data (Coombs et al., 2012, p. 523). Even with objective clinical data, it has been seen previously that depending on the condition of the patient in ICU, prognostication and subsequent initiation of an EOL transition can be incredibly problematic. Further complicating this decision making process for physicians are the extraneous influences of individual physician viewpoints, beliefs, experiences, values, specific knowledge bases, and longevity of relationships with colleagues and families (Flannery et al., 2016; Hov et al., 2007). The impact of personal beliefs on EOL decision making were significant in creating internal conflict amongst nurses, especially if physicians made decisions primarily in line with their own personal beliefs (Flannery et al., 2016). Much of the variability in the nature and frequency of intensive care physicians’ EOL decisions remains unexplained, although the literature seems to highlight the importance of subjective considerations (Poulton et al., 2005). Regarding the impact of personal beliefs for nurses, overall religious beliefs of healthcare professionals are identified in two studies as playing a role in EOL decision making; however, in Latour et al.’s (2009) study nurses rated this to be an unimportant factor (Flannery et al., 2016). Ethical and moral awareness. Nurses express a high level of moral awareness, despite an inability to name ethical principles (Hov et al., 2007; Robichaux & Clark, 2006). Throughout the literature, nurses consistently identify and recognize the suffering of patients and family AVOIDING FUTILITY 41 members, which could conceivably be traced back to their ethical professional mandate to uphold the principles of beneficence and non-maleficence (Hov et al., 2007). Many times, this identification of suffering and futility occurs earlier in nurses than in physicians. This identification by nurses is often expressed with a great degree of confidence and appears to be based largely on intuition, as if at times the nurses possessed an anticipatory assuredness that a patient was at the EOL (Jensen et al., 2013; McAndrew & Leske, 2015; McMillen, 2008). Nurses also possess a strong sense of the moral implications of the outcome of withdrawing or withholding treatment in the decision making process in intensive care, and at times appear morally compelled to initiate family discussions in intensive care around EOL issues (Gallagher et al., 2015; Hov et al., 2007; McMillen, 2008; Robichaux & Clark, 2006). The moral awareness of physicians during this process is lacking evidence and discussion in the literature. Levels of experience. Inexperience was highlighted as a barrier by both nurses and physicians in conducting difficult conversations around EOL issues, as well as the ability to incorporate varying points of view despite a shared value of decision making (Brooks et al., 2017). Competency concerns for nurses in providing an EOL approach in intensive care are related to the social, emotional, spiritual, and practical domains, and remain a consistent barrier for nurses to feel confident in participating in EOL care (Espinosa, Young, Symes, Haile, & Walsh, 2010; Espinosa et al., 2008; Gélinas et al., 2012). Physicians have varied perceptions of their personal competence and confidence with which they conduct necessary EOL discussions (Brooks et al., 2017). Lack of experience in junior physicians led them to avoid making decisions, focus solely on disease processes, and prolong life despite evidence that treatment was no longer effective (Flannery et al., 2016). These outcomes lead to a wide expression of variability in EOL decision making. Overall, variability in decision making tended to decrease AVOIDING FUTILITY 42 amongst experienced physicians, and their EOL judgments in decision making often did not align with those of junior physicians (Flannery et al., 2016). Organizational factors. The nature of undertaking EOL decision making in this intensive environment leaves nurses in a constant ethical dilemma filled with paradox between life-saving efforts and accepting natural death (Hov et al., 2007). According to Hov et al. (2007), this tension is exacerbated by hospital bureaucracy and nurses’ dependence on physicians. Organizational demands, such as availability of beds, were considered the least important factor in the decision making process by nurses and physicians, although health professionals do mention feeling constrained by institutional culture and clinical protocols in EOL decision making (Langley et al., 2014; Mohammed & Peter, 2009; Sprung et al., 2008). Nurses appear divided at times between acting for “institutionalized medicine” and the patient (Mohammed & Peter, 2009, p. 484). With the intensive care environment having a contextual goal of saving lives, and considering nurses’ perceived lack of time, the stressful demands of caring for a patient with EOL care needs may not be prioritized (Calvin et al., 2007; Espinosa et al., 2008; Gélinas et al., 2012). Physicians also feel constrained by the environmental context of the critical care setting. The paradox of providing EOL care in this setting is, at times, felt to be too great for physicians, with some expressing that EOL decisions are decidedly against the meaning of professional practice and the medical ethos of an intensive care setting (Jox et al., 2012; Laurent et al., 2017; McAndrew & Leske, 2015). ICU dynamics are indeed complex, with multiple physicians and nurses involved in the care of a single patient. Organizational shift-working culture also creates challenges (Espinosa et al., 2010). In the literature, nurses and physicians describe how the lack of continuity among AVOIDING FUTILITY 43 staff resulted in changes or postponements to EOL decision making, and the subsequent emotions that arise have already been discussed (Gélinas et al., 2012; Jensen et al., 2013). Collaboration. Collaboration in EOL decision making across the literature is complex, with consensus difficult and time-consuming to achieve even though it is recognized being foundational to EOL decision making (Brooks et al., 2017; Coombs et al, 2012; Espinosa et al., 2008; Gelinas et al., 2012). A chief aim of EOL decision making is to achieve consensus, and a key criterion for consensus is the recognition and judgement of impending death by all health professionals (Laurent et al., 2017; Brooks et al., 2017). Decision making on behalf of the patient appeared to be undertaken by both nurses and physicians who experienced the process as very challenging (Jensen et al., 2013). The value of collaboration is seen not only in the practical outworkings of positive professional relationships, but is a necessity in appreciating the values and beliefs that nursing and medical professionals bring to the decision making process (Coombs et al., 2012; Latour et al., 2009). Largely, physicians and intensivists report good or adequate satisfaction with collaboration in EOL decision making, while nurses describe their relationship with physicians as ambivalent at best (Jensen et al., 2013). Involvement of nurses in the decision making process is acknowledged to be necessary, and their role has been expounded upon previously. However, their involvement appears heavily determined by the request of individual medical colleagues to a statistically significant degree, according to a quantitative study by Langley et al. (2014). Physicians perspectives on nurses’ involvement vary, with some considering nurses as irrelevant to the process, and other physicians valuing inclusion of nurses and the perspectives they have to offer (Espinosa et al., 2008; Flannery et al., 2016). Nurses viewed their involvement as dependent on physicians’ subjective decision to include them (Brooks et al., 2017). This inconsistency in involvement is AVOIDING FUTILITY 44 perceived by nurses as a lack of recognition of their professional skills and knowledge (Brooks et al., 2017). Junior nurses especially felt discounted, as seniority appeared to be a determining factor of inclusion noted by both nurses and physicians (Flannery et al., 2016). Physicians in Jensen et al.’s (2013) study describe nurses as lacking understanding of the complexity of decisions, view nurses as pessimistic because of their questioning attitude, and experienced them as supercilious. Limited inclusion of nurses by physicians was reported to be an international phenomenon (Forte et al., 2012). While nurses admit to greater uncertainty than physicians related to patient prognostication and discomfort with decisions, they also bring pivotal knowledge to EOL decision making discussions from their constant bedside care, and they expressed a desire to be involved in decision making (Calvin et al., 2007; Espinosa et al., 2008; Gallagher et al., 2015; Gélinas et al., 2012). Nurses reported attempts to convince physicians through expression of their opinions and factual reporting of patient’s response or lack of response to treatment, however, they often describe their approach as cautious and guarded, with fears of missing something important (Calvin et al., 2007; Gallagher et al., 2015; Hov et al., 2007). Reactions of the physician is largely dependent on the physician’s individual personality or their individual relationship with the nurse, which results in variability in a nurse’s confidence to engage in the EOL decision making process (Calvin et al., 2007; Gallagher et al., 2015; Hov et al., 2007). Ways of knowing. Nurses’ assessments of futility and impending death described earlier in this review appear to arise from an anticipatory, intuitive knowing stance. However, nurses also employ empirical knowledge in describing their constant observations of nuanced changes in a patient’s condition. Physicians describe using primarily empirical knowledge with some element of intuitive knowing; however, they describe a lack of confidence in the accuracy of AVOIDING FUTILITY 45 relying on this intuitive knowledge (Hov et al., 2007). Physicians often prefer to wait for empirical evidence before discussing prognosis or initiating EOL discussions, and nurses describe difficulty conveying their intuitive knowledge to physicians (Gutierrez, 2013; Hov et al., 2007; Mohammed & Peter, 2009). Despite concerns by the physicians around possible errors, physicians and nurses communicate regularly about shared intuitive knowledge regarding patients amongst themselves (Gutierrez, 2013). Conflict does arise, however, when nurses’ intuitive knowledge is not shared with family members by physicians (Gutierrez, 2013). Mutual agreement regarding the authority of the physician as the ultimately responsible decision-maker fails to negate tensions around power differentials in clinical decision making, as certain ways of knowing appear to carry dominance in the EOL decision making process (Kozlowski, 2017). The conflict between nurses and physicians stems from dissenting narratives, with the physician focusing on a biomedical, disease-focused model, and nurses carrying a holistic interpretation (Espinosa et al., 2010; Robichaux & Clark, 2006). Nurses feel that despite working alongside physicians, their holistic knowledge is unvalued by physicians and that this contributes to a lack of collaboration in EOL decisions (Coombs et al., 2012; Latour et al., 2009). Their holistic knowledge and professional competency as critical care nurses leads nurses to believe that they have the best knowledge overall of the patient, and this creates extreme frustration when they are not included in decision making (Espinosa et al., 2010; Hov et al., 2007). The inherent tensions between the medical and nursing model is a barrier to nurses in the EOL decision making process (Espinosa et al., 2010). Awareness of self and others is a key strategy of nurses in collaborative clinical decision making; however, in another study reviewed by Kozlowski (2017) 40% of clinicians agree that other clinicians experience negative effects on AVOIDING FUTILITY 46 clinical decisions as a result of emotions, while only 21.1% think the same applies to themselves demonstrating a lack of self-awareness. Chapter Summary Chapter Two presented a review of the literature, including a summary of the search strategy employed. Although there were numerous articles discussing EOL care, literature specifically focusing on the decision making process in a critical care setting was limited. This Chapter provided pertinent background information for this study, and identified a definitive gap in theory and knowledge regarding the impact of emotion on EOL decision making processes (Kozlowski et al., 2017). It is clear from this exposition of the literature that EOL decision making in a critical care context is not always or primarily a rational, cognitive exercise of health professionals in partnership and collaboration with patients, families, and each other through balanced discussion. Rather it appears to also be a subjective, value-laden process shaped by psychological and emotional responses of nurses and physicians as well as by the socio-cultural milieu, demonstrating a clear need for this research project. Despite recognition of the subjective nature of the EOL decision making process, there remains a gap in understanding as to how subjective forces such as emotions, psychosocial factors and professional roles are experienced by nurses and physicians as influencing the EOL decision making process. It is the goal of this thesis to seek to better understand how these factors may influence the process of EOL decision making in critical care. The next chapter will discuss the research design, method, and procedures implemented for this thesis. AVOIDING FUTILITY 47 CHAPTER THREE: RESEARCH DESIGN, METHOD AND PROCEDURES The research design and subsequent methodology used by this study to address the research purpose and objectives are described below. Scientific quality and ethical considerations are also presented providing the reader a foundation from which to evaluate the research findings to be presented in Chapter Four. Research Design A qualitative approach, more specifically, the method of interpretive description as described by Thorne’s (2016) most recent book, Interpretive description: Qualitative research for applied practice (2nd ed.), was chosen as the research methodology for this thesis in order to garner an in-depth understanding of the experiences and perceptions of both nurses and physicians during the EOL decision making process. This inductive approach was utilized for its ability to elicit themes that have previously not been fully explored and allow for greater understanding of the motivations and influences experienced by nurses and physicians in decision making. Thorne (2016) describes interpretive description as a method which provides an “organizing logic with which to generate meaningful scholarly products that have an application and knowledge translation built into them from the outset for the specific needs of applied fields” (p. 37). Interpretive description is particularly useful for undertaking qualitative research that focuses on interpreting subjective perceptions and “generating an interpretive description capable of informing clinical understanding,” and thus was considered a valuable choice for my research questions, especially those related to subjective factors like emotions (Thorne et al., 2004, para 6). The experiential data was obtained through a series of semistructured interviews with critical care nurses and physicians. AVOIDING FUTILITY 48 Sampling Upon project approval from Trinity Western University’s Research Ethics Board (REB) (refer to Appendix D), recruitment of study participants commenced. Network sampling, the “sampling of participants based on referrals from others already in the sample,” was used in the recruitment of participants in this qualitative investigation (Polit & Beck, 2017, p. 736). Initial participants, found through personal contacts of myself and my thesis supervisor, led me to future participants by provision of my contact information. All participants were asked to contact me directly by phone or email. The initial goals were to recruit at least five nurses and five physicians for interviews from a variety of intensive care sites of varying acuity. This sample size was chosen to aim for equal representation across the professional groupings and hopefully acquire an adequate saturation of data. Sampling across these varying types of intensive care units provided a broad perspective and diverse responses. Network sampling proved to be a useful method of recruitment and included a critical personal contact who distributed a letter of information via email to critical care physicians in a large health authority within British Columbia (refer to Appendix E). Nearing the end of recruitment, there were more nurse volunteer participants than necessary. However, the physician recruitment remained challenging and below my initial hopes of at least five physicians. Varying site acuity was achieved, with several participants being from urban intensive care/high acuity units, and others being from smaller community intensive care settings. A ten-dollar gift card to Starbucks Coffee Company© funded by the researcher was provided as an honorarium to each of the nine participants. Inclusion criteria for this study included nurses who have completed formal or in-house training to prepare them to work in a critical care setting. Nursing students or those completing AVOIDING FUTILITY 49 practicums in these areas were excluded. Physicians or intensivists were those who work primarily in the ICU, or were completing a fellowship in intensive care. Residents were excluded. Five nurses and four physicians were interviewed for this research project for the purpose of comparative data analysis. All were recruited from the province of British Columbia. The nurses were from two metropolitan urban hospitals, containing both intensive care units and high acuity units under their umbrellas of critical care environments. The physicians were distributed across two urban sites and one community intensive care setting. The nurses ranged in age from 25-53 years old, and physicians ranged in age from 34-64 years old. All nurse participants were female, and physician participants included three males and one female. All nurses possessed a Bachelor’s of Science in Nursing, as well as a subsequent required specialization to work in their respective critical care areas, either High Acuity Training or Intensive Care Training. One nurse also possessed her Master’s Degree in Nursing. Two of the physicians identified as internal medicine physicians, and the other two physicians identified their level of training as ICU intensivists. Eight participants self-identified as Caucasian and one self-identified as Pakistani. Out of the nine participants, three identified as non-religious, three identified as Christian/Catholic, and two individuals identified as Ismaili Muslim and Jewish respectively. Regarding professional experience, the nurses had an average of 15.4 years of experience in the nursing profession and an average of 12.6 years in critical care. Physicians had an average of 19.4 years of experience as physicians and an average of 17.3 years as critical care physicians. Refer to Table 1 for complete participant demographics (p. 50). AVOIDING FUTILITY 50 Table 1 Participant Demographics Age of Nurse Participants, mean (range) Age of Physician Participants, mean (range) Gender of Nurse Participants (n1) Male Female Gender of Physician Participants (n2) Male Female Ethnic/Cultural Background (n3) Caucasian Pakistani Religious Affiliation (n3) Christian/Catholic Muslim Jewish Non-affiliated Highest Level of Education (n3) Bachelor’s Degree Bachelor’s Degree with critical care specialization Master’s Degree Medical Degree Medical Degree (M.D.) with intensivist specialization Years of Professional Experience of Nurses, mean (range) Years of Professional Experience of Physicians, mean (range) Years of Critical Care Experience of Nurses, mean (range) Years of Critical Care Experience of Physicians, mean (range) Note. n1=5, n2=4, n3=9 39.8 (25-53) 48.8 (34-64) 0 5 3 1 8 1 3 1 1 4 1 3 1 2 2 15.4 (3-30) 19.4 (3-40) 12.6 (1-23) 17.3 (3-34) Procedures Data Collection Ta Qualitative data was obtained via semi-structured interviews with nurses and physicians working in critical care settings, either Intensive Care or High Acuity (High Dependency Units) from April 23, 2018 to June 25, 2018. Interviews lasted 35-60 minutes and were carried out in a Table 1. Participant Demographics mutually agreed face-to-face location or via telephone. Prior to the initiation of the interview, AVOIDING FUTILITY 51 informed consent was acquired (refer to Appendix F), and a demographics questionnaire was completed by participants including age, ethnicity, religious background, years of critical care and professional experience (Refer to Table 1, p. 50). The opening interview question asked participants to provide an example of a time they participated in the EOL decision making process and found it to be either exemplary or particularly troubling. This was followed by more specific questions pertaining to each of the five research objectives, with prompting questions or comments used as needed. To obtain insight to assist future health professionals, the closing question was, “What would you see as being the most beneficial change in how you experience EOL decisions being made on your unit?” After the completion of seven interviews, it was noted that participants were struggling to identify questions related to organizational pressures, and so the interview guide was amended after consultation with the project supervisor. The question was broadened to consider all aspects of the work environment in order to elicit richer data regarding participants’ experiences of shaping forces in the decision making process. The original interview guide, amended guide, and prompts can be found in Appendix G and Appendix H. The first four interviews were with nurses and conducted face-to-face with the participants in various settings including public parks and local coffee shops in British Columbia, chosen by participants. After an analytic pause, the final five interviews were conducted via telephone as I returned to my home province, Alberta. Interviews were audio-recorded using a digital recording device and transcribed verbatim post interview by myself. Quick jottings were written during each interview and then were expanded to be more comprehensive, combining both observational field notes and reflexive journaling. The jottings and journaling considered my own influence on the interview as researcher, as well as consideration of influences on the AVOIDING FUTILITY 52 participant to respond in certain ways including contextual factors, through reflection on participant tone, body language, and emphasized words or phrases. Data Analysis Data analysis is considered by Thorne (2016) to be a “marvelous intellectual adventure,” and despite the enormity of effort that occurs prior to this stage, it is the investment of time spent on the analysis that is critical to achieving transformation of the data (p.173). Analysis and full immersion was ongoing throughout the data collection phase, including the transcription process completed after each interview and the analytic pause during which recordings were re-listened to and reading and re-reading of transcripts occurred. Coding is a process utilized by a variety of qualitative traditions during data analysis and is primarily considered to be the process of “finding pattern among the pieces” of data (Thorne, 2016, p. 155). While coding can consist of a line-by-line approach in order to organize data into more manageable concepts, early excessive coding was avoided in order to remain open to alternatives and envision possibilities (Thorne, 2016). Nvivo™ software was utilized to assist with data analysis (Nvivo Qualitative Data Analysis Software, 2012). Each individual transcript was coded separately, and each professional grouping of nurses and physicians was coded in a separate project in NVivo™, initially producing intimate individual case knowledge with which to compare the cases for recurring themes and patterns (NVivo Qualitative Data Analysis Software, 2012). This procedure produced a “species of knowledge” that can be applied back to individual cases (Thorne et al., 1997, p. 175). The two independent projects looking specifically at nurses and physicians as individual groupings in NVivo™ were later merged to develop the larger themes found further on in the analysis (NVivo Qualitative Data Analysis Software, 2012). AVOIDING FUTILITY 53 Coding began with initially looking for broad categories such as “end-of-life experiences,” and was then further defined into more specific categories of influencing factors such as “emotions experienced,” “roles,” “legal,” and “personal beliefs.” These represented “the initial basket into which the laundry” of data was sorted (Thorne, 2016, p. 158). This technique allowed for the gathering of “meaning units” that appeared to have similar properties while considering them in contrast to groupings with differing properties (Thorne, 2016). Unfortunately, the “meticulous technique of data coding” can “get in the way of good interpretive thinking” at times, and for this reason the purpose statement and objectives remained at my side at each time the coding process was undertaken (Thorne, 2016, p. 164). This allowed for critical reflection and awareness, making the analytic process a meaningful lens with which I was able to “distinguish relevant patterns within the data” (Thorne, 2016, p. 165). The pitfall of succumbing to memorable phrases spoken by interviewed participants as a dominant focal point during analysis was avoided through the creation of a “memorable quotes” coding bucket. While these quotes contained powerful messages, if coded too “in vivo,” or too prematurely they could have been detracting to credibility. Review of the coding process was ongoing with thesis supervisor Dr. Rick Sawatzky, and second reader, Dr. Sheryl Reimer-Kirkham, who is an expert in interpretive description methodology. Both of these individuals provided guidance in developing a codebook around emerging themes from the data. After the data was organized into various groupings, further analysis was undertaken to understand the meaning and relationship of the data within that grouping. For example, while “Emotions of Nurses” was initially considered as a primary code, it was further developed into sub-codes of “emotional management as distancing,” “negative emotion at futility,”, and emotions as “inherent and relational”. These sub-codes were a form of AVOIDING FUTILITY 54 analysis in and of themselves, and allowed me to see how emotions were handled by nurses as they related to my overarching themes. Eventually the two separate NVivo™ projects of physician data and nurse data were merged into a singular project, and adjustments were made to the codebook following this amalgamation. With each new transcript coded, minor adjustments were made to the codebook as insight was gained. The codebook was created to focus analysis across the transcripts in order to arrive at a shared, constructed understanding of the experience of the EOL decision making process (refer to Appendix I). Finally, the use of visualizations of the data through diagrams helped to articulate the relationships between the data sets and move beyond the content of the data to greater levels of abstraction leading ultimately to the visual thematic presentation seen in Figure 1 (p. 60). Preliminary analytic frameworks were then constructed. For example, the three sub-phases identified in the decision making process were considered originally as a framework unto themselves; however, it was felt that this did not fully encapsulate the tension and ambiguities in the process as a result of the influencing factors. The goal of interpretive description as yielding “constructed truths” that make aspects of the phenomenon shine in a new and useful way allowing for “shared realities” while recognizing the “constructed and contextual nature of human experiences” was kept in mind during the analytic process (Thorne et al., 2004, para 4). Thematic analysis was the constructionist analytical method utilized to capture and unify the nature or basis of the nurses and physician’s experiences into meaningful wholes, seeking not only commonalities but natural variations (Polit & Beck, 2017). These thematic pieces were then woven into an integrated whole providing an overall structure to the data seen in Figure 1 (p. 60). AVOIDING FUTILITY 55 Ethics Ethical consent for the study was obtained from the Trinity Western Research Ethics Board prior to recruitment and data collection (refer to Appendix D). Participants were asked to contact me directly if they wished to volunteer for the study. After the purpose of the study was explained with a letter of information, and comprehension of the information was ensured with opportunities for participants to ask questions and engage in verbal or email dialogue with the researcher, each participant was asked to sign a written consent form a (refer to Appendix E & F). The potentials for harm or discomfort due to participation were addressed in the Informed Consent Form (refer to Appendix F), and plans for addressing discomfort including emotional distress by having the contact information for the Employee Assistance Program for each participant’s hospital available to be distributed by the researcher. Precautions to ensure comfort of participants were considered, including location of interviews being at the participant’s choice, and the acknowledgement of the participant’s ability to refuse to answer questions if uncomfortable. All participants were informed and aware that they could withdraw from the study at any time. Participants were identified using pseudonyms, which appear in the transcripts and in the following chapters of this thesis document. Any identifiable information was removed from the transcripts, including names of people and places. All data was stored on a password protected and encrypted computer, with only myself aware of the password. The data will be retained for five years in case of secondary analysis or audit, while all paper materials containing data will be shredded at the conclusion of the analysis. Throughout the research process, access to data was limited to the thesis committee, and was securely shared through use of TWU’s Owncloud (a secured cloud storage). AVOIDING FUTILITY 56 Scientific Quality: Trustworthiness and Integrity It is crucial that the credibility of the research was established and built into the research project, ensuring epistemological integrity (Thorne, 2016). While subjectivity is a tremendous asset, Thorne asserts that nursing as a caring discipline has a “special obligation” to ensure that the scientific quality of the findings is above reproach (Thorne et al., 1997, p. 176). Qualitative research, and specifically the method of interpretive description, employs the researcher as instrument. The researcher’s influence is not restricted or discounted but is instead considered a benefit. However, this influence must also be accounted for. An audit trail was commenced at the outset to document decisions as I moved through the research process, including the development of a reflexive journal and field notes to assist in attaching context to the study (Thorne et al., 1997). The audit trail includes the interview transcript, theoretical notes, working hypothesis, reflexive notes, pilot interview guide forms, NVivo analysis query tools, and data reconstruction products such as multiple drafts of the final report (Polit & Beck, 2017). The reflexive journal not only documented the foundation from which I oriented myself, but helped me to analyze my underlying assumptions and values, increasing interpretive authority and authenticity (Polit & Beck, 2017; Thorne, 2016). Personal biases must also be accounted for as much as possible, including the inherent bias that I as the researcher have developed while working in both critical care and palliative care settings, and as a former employee at one of the primary observation sites. However, participants who understood my familiarity with their context appeared more apt to share more personal and intimate examples of how they experienced the decision making process. Credibility and dependability has been further enhanced by using data triangulation Through interviewing both nurses and physicians in critical care person triangulation was used AVOIDING FUTILITY 57 with the aim of “validating the data through multiple perspectives on the phenomenon” (Polit & Beck, 2017, p. 563). Space triangulation occurred through the collection of data to identify the same phenomenon at a variety of sites, allowing for cross-site consistency in the findings (Polit & Beck, 2017). The thick description to be displayed in the upcoming chapter of findings and subsequent discussion contains judiciously chosen inclusion of verbatim quotes as well as contextual understanding the participants of the study contributing to the authenticity and vividness of this qualitative study. The findings and subsequent discussion were generated with considerable thought and immersion by the researcher in order to avoid “lachrymal validity” or opposingly, “bloodless findings” (Polit & Beck, 2017, p. 569). Chapter Summary This chapter presented the research foundations and design for this thesis project, which explored the experiences of critical care nurses and physicians in the EOL decision making process. Interpretive description was selected as the qualitative method that was best suited to obtain this information and construct a meaningful understanding with a focus on practical application to nursing. The project was approved by Trinity Western University’s Research Ethics Board. Recruitment of both nurses and physicians was initiated following approval and, after informed consent was obtained, face-to-face and telephone semi-structured interviews were conducted. Analysis was conducted with the assistance of NVivoTM software and time was spent sifting through verbatim transcription and subsequent re-reading of transcripts (NVivo Qualitative Data Analysis Software, 2012). Codes were developed with ongoing codebook adjustments made throughout the analysis, leading to the development of a thematic analytical AVOIDING FUTILITY 58 framework. Ongoing discussion with the thesis supervisor occurred throughout this process, and measures were taken to ensure scientific quality. AVOIDING FUTILITY 59 CHAPTER 4: FINDINGS The aim of this thesis was to understand the difference in emotions and psychosocial factors experienced by intensive care nurses and physicians, as well as how they understand their individual professional roles in regards to the process of EOL decision making. The intent was to gain insight into the process in order to better equip intensive care nurses and physicians during this transitionary stage. Data analysis included time spent reading and re-reading the nine transcripts, the creation of codes, and thematic analysis through interpretive description. In this chapter, these themes are presented in sequence. Presentation of Findings The analytic process revealed a shared underlying mission and ultimate goal of both nurses and physicians to avoid futility. This theme represents both the foundation and the climax of the ambiguous EOL decision making process experienced by both nurses and physicians. Another theme that arose is that the decision making process itself is found to be ambiguous, with every participant acknowledging the lack of structure and protocol surrounding this process. Despite this ambiguity, three key phases were almost universally present in the data including: identifying that “things aren’t working,” health professionals getting on the “same page,” and meeting with family with the goal of getting the family “on board.” The three categorical themes of individual philosophy of approach, moral weightiness, and family receptiveness represent the most significant influencers, each with their own accompanying variabilities, in shaping the EOL decision making process. Refer to the schematic diagram (Figure 1, p. 60) for a visual depiction of the relationship between these themes and the EOL decision making process as experienced by nurses and physicians. AVOIDING FUTILITY Individual Philosophy of Approach 60 Moral Weightiness Family Receptiveness Ambiguous Decision making Process Identifying "things aren't working" Health Professionals getting on the "same page" Meeting with Family getting the family "on board" Nurses End-of-Life Decision Making as AVOIDING FUTILITY Physicians Figure 1: The End-of-Life Decision making Process Thematic Design The first categorical theme, the individual philosophy of approach, refers to the large amount of intra- and inter- variability experienced by both nurses and physicians during the EOL AVOIDING FUTILITY 61 decision making process. The second theme, moral weightiness, refers to the responsibility felt by both physicians and nurses when they acknowledge the life-and-death nature of this decision, despite their varying roles. The third theme, family receptiveness is seen as highly influential, with family being one of the most frequently cited words in the data. How families react to information provided by physicians and nurses is critical to the individual emotional and psychosocial experiences of the health professionals. These three themes encapsulate the emotions, psychosocial factors, and professional roles that influence each moment of the ambiguous end-of-life decision making process. Unequivocally, the decision making process was experienced by the nurses and physicians as lacking empirical structures or formalized protocols. Despite this, most participants described consistent phases that were moved through each time the process was undertaken, although the timing and experience of these are highly influenced by the previously discussed categorical themes. The first phase, identifying that “things aren’t working,” was the initial recognition by individual participants of the need to begin an EOL decision making process. The second phase, health professionals “getting on the same page,” was frequently described as a positive, collaborative process; however, variability is noted at an individual level by PN2, who states: It depends on the nurse, it depends on the physician, it depends on the respect between the two and the level of listening, it depends on rapport, and it also depends on who else is all there from the critical care team. The third phase, meeting with family and getting the family “on board,” was done on individual occasions, informally, by nurses to prepare, assess readiness, and “lay the groundwork” (PN5). The formalized family meetings were a collaborative effort led by the physician to provide recommendations regarding the outcome of the decision making process. AVOIDING FUTILITY 62 Cumulatively, these themes depict how emotions, psychosocial factors, and professional roles colour the EOL decision making process as individually experienced by nurses and physicians. In the next section, there will be a discussion of the overarching theme of avoiding futility, the main concept of the decision making process as ambiguous, with its three identified sub-phases. Then there will be a presentation of the three themes seen as most significantly influencing the process: individual philosophy of approach, moral weightiness and family receptiveness. Finally, a summary of key findings will conclude this chapter. Avoiding Futility Engagement in the EOL decision making process for critical care physicians and nurses was primarily motivated by a desire to avoid futility. It is represented in the visual as both the foundation at the bottom of the diagram and the climax moving through the diagram (refer to Figure 1, p. 60). The Venn diagram demonstrates avoiding futility as a shared mission of nurses and physicians; however, the individual circles express how nurses and physicians may view this goal from different vantage points due to their individual emotions, professional roles, and experience of psychosocial factors. The concept of futility has multiple definitions throughout the literature; however, in the case of the data presented in this research, it refers to situations when interventions or treatments are continued or prolonged when death is unavoidable. Interestingly, the words futile and futility are only mentioned a handful of times across the data set. However, the concept of prolongation and concerns around prolongation are discussed extensively by participants. Participants frequently expressed concerns that prolonged use of life-sustaining interventions are ultimately pointless, and needlessly contribute to a decrease in the patient’s quality of life and an increase in the patient’s suffering. AVOIDING FUTILITY 63 For nurses, avoiding futility was an in-the-moment concern focused on avoiding current or anticipated harm or indignity for the patient. “You see him suffering, is basically the end of the story. You see a patient that’s very uncomfortable and you start to ask yourself, ‘How much more can we try before this suffering is just cruel, right?’” (PN2). Avoiding futility was enacted through the nurses’ self-identified roles of advocate, helper, initiator, and relational connector with families. The desire to avoid futility behaves as an internal force, driving nurses’ outward actions to allow “people to die in a dignified way instead of after we’ve tortured them for months on end…and still come to the same conclusion where their diseases are fatal and inevitable” (PN5). Physicians, in comparison with nurses, approach avoiding futility from a more futureoriented perspective of the overall patient outcome connected to the “end game” (PN4), with a lesser focus on the present suffering of the patient. As such, avoiding futility did not result in a direct correlation with external roles, but rather acted as an invisible value driver. Intrinsic tension arose for physicians where their ability to avoid futility was threatened as it clashed with core philosophic values of “what I am doing as a doctor” (PP1). The mission of avoiding futility gained visibility only when futility was perceived by physicians to be occurring. Almost all negative emotive responses voiced by physicians in the data, including stress, fear, unease, and annoyance, were related to the perception of providing futile care. These moments in the decision making process were acknowledged as the most difficult moments of the decision making process for the physicians. “I would say that as the duration of what’s perceived as futile care goes further…. I would say there becomes more physician unease” (PP3). Nurses viewed avoiding futility as an imperative, immediate concern for the patient, while physicians experienced futility as an overall patient outcome to be avoided. These AVOIDING FUTILITY 64 opposing vantage points of this shared mission created an uneven sense of urgency between nurses and physicians, and altered the timing of engagement with the EOL decision making process, contributing to tensions between colleagues. The tensions and subsequent emotions experienced, around the quest to avoid futility may also be exacerbated by the proximity and nature of the hands-on care provided by the nursing staff. In situations where prolongation or futility is in question, one physician recognized those experiences to be “much more traumatic for [nurses], than it is for the physician [who can] just sort of breeze in, say ‘This is helpless!’, make some sort of snide comment, and then, move on to the next patient” (PP2). The inherent professional roles taken on by each professional group create different vantage points from which to view futility concerns and this contributes to collegial tensions and varied timing in emotions experienced by physicians and nurses. Ways of knowing futility. Ways of knowing and assessing futility arose from a variety of sources for both nurses and physicians including past experiences, clinical assessment, intuition, as well as moral judgements. While objective clinical evaluation appeared to be a primary source of knowledge for the physician, the physician’s subjective moral judgements and personal values undeniably played a role in determining futility. PP1 acknowledged a professional and personal association with the mission to avoid futility: “my…value is to respect the person I’m caring for, and so that’s what I’m trying to do….so that’s a driver if you will….”. The nurses also admitted that the personal distress experienced from the perception of providing futile care subjectively influenced their interactions in the EOL decision making process, with PN5 admitting “I guess it is sort of geared by my own values because I don’t like futile care and it causes such moral distress for me, so I like to guide people to a dignified death.” AVOIDING FUTILITY 65 Avoiding futility as influenced by environment. This overarching goal to avoid futility, mutually shared by nurses and physicians, may be highly influenced by the contextual environment of the critical care setting. The availability and access to the highest levels of technology provides the “tools to sustain…organs in bodies” seemingly indefinitely, but as PP1 continued, “that doesn’t mean that the person’s going to ever have a life.” The ability to prolong life created an unrealistic expectation that this would consistently occur “at any cost” (PP1). The idea of promoting palliation as an outcome of the EOL decision making process appeared foreign and at odds with the goals of a critical care context. PN2 shared her perception that: Often it seems like critical care is the antithesis to palliative care. Like it’s the complete opposite. And so there is overlying this question over…wherever we have a situation where palliation is raised, you’re automatically in a situation where the family is gonna be, like, ‘What! Like, pardon, excuse me! I thought we came here to be saved! To be rescued!’ and so even to open that discussion is difficult because you’re in an environment that seems so opposite to everything that palliative care stands for. The intensive care unit represents a challenging environmental context within which to initiate the EOL decision making process. Intent to be patient-centered. The overarching theme of avoiding futility remains the primary location in the data where a focus on respect and dignity of the patient is expressed: “the last thing I want is to put someone through, you know, a painful course of care that, uh, is futile” (PP2). In their interviews, nurses utilize the word patient or person almost twice as often as physicians, yet, there remains a shared consideration of the humanity and personhood of the patient in the quest to avoid futility. Consideration of true patient-centeredness is notably absent throughout the overall data set. However, at minimum, decisions were experienced by AVOIDING FUTILITY 66 participants as being made on behalf of the patient out of concern for the patient’s quality of life, even if these decisions were based on assumptions made by the health professionals about what is best for the patient. The intent to be patient-centered in decision making appeared, at very least, to be an ideal quest for both nurses and physicians: It is a good experience when everybody is recognizing what the patient’s wishes would be and what the limitations are on what can be offered and what the expectations of benefit are. So if things are fairly clear and everybody’s on the same page, that’s great. We can make decisions. (PP4) Overall, positive experiences with EOL decision making appear to occur in the presence of a respect and consideration for the patient’s wishes and desires, even if the patient may be unable to express them during the process. Summary of avoiding futility. The shared mission of nurses and physicians to avoid futility was foundational as a driving goal and desired outcome of the EOL decision making process. This mission was influenced by nurse’s and physicians’ individual professional and philosophic orientations, as well as their subjective personal beliefs. The emotive experiences related to avoiding futility drove nurses in enacting their professional roles as advocates. Pressure and inability to prevent futility resulted in strong negative emotional expressions for physicians. Avoiding futility as a shared mission of the EOL decision making process may be considered unique to the highly technological context of the critical care environment. Despite a shared mission, there is variation in the vantage points with which this mission is viewed between nurses and physicians, with nurses seeing this as an immediate concern to prevent prolongation of current patient suffering, while physicians desired to prevent an ultimate outcome resulting in poor quality of life. AVOIDING FUTILITY 67 Ambiguous Decision making Process Discerning the degree of influence emotions, psychosocial factors, and professional roles had on the EOL decision making process was made much more complex by the inability of participants to clearly identify the process itself. Despite the intensive care unit being a highly technical and structured setting, each participant acknowledged the lack of structure and protocols guiding this particular process on their individual units, with PP2 admitting, “we don’t really have an empirical way of approaching it and each doc is different.” PN1 said, “I don’t think we have any protocol around to decide, ‘OK this guy has reached this point.” A desire for the presence of a structured approach, common and familiar to the critical care setting was expressed by PN2: “there should be….when you see X,Y and Z, when you decide these three things, then it’s clear that the decision should be made towards palliation or end-of-life care,” rather than a seemingly subjective and informalized, “we could do this or we could do that” approach. Acknowledgement of protocols and structures arose only once a decision had been made, for example, to move towards withdrawal of care. Evidently, policies and protocols were in use including, “pre-printed orders for actively dying protocols” (PP4). However, largely the decision making process leading up to this point was experienced by intensive care nurses and physicians as ambiguous, with PP4 describing the process as: “that sort of grey zone where you’re transitioning…. your intensive care nursing is wearing a different hat and everybody’s shifting directions” (PP4). Nevertheless, despite this high level of haziness, when participants were asked in interview to describe how EOL decision making occurs on their individual unit, there was unanimous consensus on three phases that are moved through in the process: AVOIDING FUTILITY 68 identifying that ‘things aren’t working,’ health professionals getting ‘on the same page,’ and meeting with the family as getting the family ‘on board.’ Identifying that ‘things aren’t working.’ First, the EOL decision making process was initiated by the individual nurse or physician after a recognition that ‘things aren’t working’ (PP4). A variety of knowledge sources were used to identify the fact that, “it’s looking like, despite our best efforts, the patient is still deteriorating, it’s time to have a discussion” (PN5). Offering a physician perspective, PP1 gave a nearly identical response: “is the patient dying, despite our best attempts to make them better?” It is interesting to note that, for the physicians especially, there appeared to be a hesitation to make this identification. It was often viewed as an admission of failure or defeat. PP2 adamantly explained that, as a critical care physician, he believed it was his duty to present and demonstrate to patients and families that, “we’re doing everything we can and if it’s not gonna work, the only reason we stop is if it’s not going to work.” For physicians with myriads of tools, technology, and expertise at their fingertips, a sense of helplessness emerged: There’s no way we can actually fix this situation…like we either have to sedate her and make her worse on the bipap which is going to make her chance of survival even less, or we intubate her which is against her wishes, but there’s no options. (PP3) Rather than be merely an objective decision, this feeling of failure indicated a personal, emotional response for physicians, as reflected in this comment: “my job is to be humble enough when shit’s just not working, right?” (PP2). Nurses’ proximity to the bedside of the patient contributed to a sense of early identification that “things [weren’t] working” compared to physicians. This early identification left PN2 anticipating collaborative tension regarding consensus: “you’re never sure at the AVOIDING FUTILITY 69 beginning if the physicians are on the same page as you.” Despite this, nurses appeared to have confidence in their ability to make this identification, “I think that we know when...like when people are that sick” (PN1). PN3 credited their judgement to a comprehensive clinical assessment of “certain objective signs and symptoms we look at,” as well as an intimate personal knowledge of the patient. This personal knowledge was developed out of their proximity and relational connection, prompting the nurse to confidently recognize the need for the initiation of an EOL decision making process because “I actually saw it in their eyes” (PN3). The difference in timing of identifying things aren’t working contributed to collaborative tension between nurses and physicians in the EOL decision making process. I think, um, if anything, sometimes, the nurses may feel not supported, if they feel like, they’re saying, ‘Look I feel, like, this is hopeless.’ And the doc may say, ‘Well I don’t really feel comfortable engaging this right now’ (PP2). The verbal articulation by either nurses or physicians that “things aren’t working,” began the crucial transition to the next phase: health professionals getting “on the same page.” Health professionals getting “on the same page.” Consensus in the EOL decision making process was viewed by nurses and physicians as that which ideally reflected a “meeting of the minds” because “by that time, most of the health care people are already on the same page” (PN5). It is important to acknowledge that this phase represents a larger inter-professional group than merely the nurses and physicians. PN2 stated that her early identification and initiation of this discussion with the interdisciplinary team was a powerful moment of engaging her professional role: And then, you, as a nurse, have the power, to turn the whole conversation in the report towards, ‘What would this look like for this patient?’ And then the doctors obviously AVOIDING FUTILITY 70 discuss it, and the social worker’s there, and OT and PT is there, and there is all this, like, inter-professional communication where everyone is pitching in, saying, like ‘Yeah, the other day this patient was in so much pain that they refused to mobilize, they didn’t want to get up to the chair.’ Because they’re so uncomfortable, we can’t give them anything else. ‘Pharmacy, can we give them anything for pain control?’ and pharmacy says, ‘No, we’re kind of maxed out right now with our RASS goals or with our goal for like, not over-sedating this patient.” And then, like, ‘Anybody else have anything else to say?’ And the social worker [said], ‘I was talking to the family and the family says the patient has just been totally exhausted and has said to them on the multiple occasions that they’re done, that they’re kind of exhausted.’ Health professionals getting ‘on the same page’ is seen as a valuable phase of the process that at times clarifies some of the ambiguity experienced because “everybody has a piece of the puzzle which creates a big picture” (PN3). Timing, once again, was acknowledged as contributing to the experience of achieving team consensus. Nurses experience the overall decision making process as happening “slowly…[and] that’s why there’s no clash between the nurses and the doctors…because in the last few days, it has been progressing to that” (PN1). Overall, collaboration between nurses and physicians was viewed by participants as largely positive. They rarely reported experiencing “dissension about making the decision. I think that we always agree that it’s time to make a decision about the patient” (PN4). Achieving consensus in the albeit ambiguous decision making process was critical to enabling “a measured shift in direction of care” (PP4), and it was acknowledged by nurses and physicians to occur largely without “friction in the team” (PP4). AVOIDING FUTILITY 71 Meeting with family – getting the family “on board.” Once the professional health team had achieved consensus, the next phase in the process involved approaching the patient’s family, usually in the form of a formalized family meeting. PN5 described the transition to the phase: “when we are sitting around that desk, and all the things we’ve tried, and we sort of look at each other and say, “OK, we’ve got to talk to the family.” Once again, the process and experience of a family meeting was ambiguous and highly variable for the individual nurses and physicians interviewed. For the nurses, the therapeutic relationship and sense of relational connection developed with families was crucial to influencing the outcome of the decision at the family meeting. PN4 described it as a necessity to “have that relationship with the family…to be comfortable with them, to be able to come to that consensus.” This relational connection is inherently ingrained in the nursing profession, which, was viewed as a “hybrid” between the “psychosocial model,” the “medical model and the caring model” (PN5). However, this relational connection was also recognized to not necessarily be universally experienced by nurses with all patients and families, with PN3 acknowledging, “sometimes you don’t have the connection with families, so that’s OK…(laughs)….but…. It can change the process…because if they don’t trust you…then they just think your just not looking out for them, right?” Relationship appeared to be developed in informal moments between the nurse and the family, independent of the physician, rather than through formalized team meetings. Nurses regularly spoke of these informal meetings as discussions where nurses were: Introducing ideas of death and dying to families and what their thoughts and feelings are on death and dying…you know how they would like to see their parent or what they know AVOIDING FUTILITY 72 about what their parent’s wishes are….and sort of guiding them to the right choice and the right decision” (PN5). This initiation was a pre-cursor to the official meeting but was also a preliminary step of probing the expectations of the family. We lay the groundwork for the conversation and find out what the needs and the desires are of the patients and the families, and let the doctors come in and have the discussion about what the care plan has been so far (PN5). While the importance of relational and emotional connection with the family was discussed by every nurse I interviewed as crucial to the outcome of the family meeting, the concept of relational connection is noticeably absent from the data received from the physicians. PN5 described the lack of relational connection she noticed between physicians and families: I actually don’t feel that the physicians really…. they haven’t really created a relationship with the patient. At least, I feel that they are very removed emotionally from the situation. I feel like, whenever I bring a physician into these conversations, it’s mostly an annoyance for them…. They just want to get it done and over with. For physicians, exploring expectations in a family meeting took on an altered connotation of providing options and recommendations of what care they, themselves, as practitioners are willing to provide or not provide, thus attempting to get the family “on board”(PP4). While the individual philosophical approach of the practitioner will be discussed in greater depth later in this chapter, it appeared that family meetings happened using varying approaches. Some physicians provide a gentle guidance regarding “what the outcomes are with [a] particular disease” (PP3). However, other physicians tend to enter family meetings with a more assertive slant to “come to a recommendation (clears throat)…without you know, imposing…but a AVOIDING FUTILITY 73 recommendation to the family asking them to understand, accept that recommendation and if not, to have, you know, kind of ongoing conversations.”(PP1). Physicians repeatedly reported experiencing, a sense of burden and tension during family meetings with a family’s “expectation to prolong life.” Only one physician discussed the purpose of the family meeting from a neutral stance of “exploring their expectations about how things are going to go” (PP2). The family meeting may be a singular conversation where consensus is reached or it may take many ongoing conversations. This means that it may be subjected to the psychosocial factor of rotating health professional schedules. One nurse described how the physician “doesn’t have a meeting with the family till Saturday and he only can just introduce the topic because he is going to be off on Monday, so then the new doctor will start…” (PN1), and that at times this break in relational connection can delay the decision making process. For physicians who worked in the intensive care unit for one-week stints, PN4 acknowledged that “with the physicians switching over on the Monday…they probably wouldn’t be eager to be making those the decisions on the first day…” and this could result in delays. The rotational schedule of the critical care nurses was not discussed by any of the participants as having an impact on the EOL decision making process. Summary of ambiguous decision making process. In summary, while the process is ambiguous, the three general phases of the decision making process are identified by participants: identifying things “aren’t working,” health professionals getting on the “same page,” and meeting with family as getting the family “on board.” The phases of this process are not articulated in the same sequence by the participants; however, they are echoed across the interviews as phases consistently moved through. These phases all represent crucial moments in AVOIDING FUTILITY 74 the EOL decision making process that are subject to high amounts of variability related to emotions, psychosocial factors, and the various roles undertaken by nurses and physicians. These phases are consistently identified despite a lack of protocol and structure and subsequent ambiguity of this process as a major theme recognized by all participants. The identified forces most influencing this ambiguous EOL decision making process will now be discussed. Individual Philosophy of Approach The individual philosophy of approach is representative of the subjective humanness and innate variability of each individual and their way of thinking and existing in the world. While training amongst professional groupings and specific contexts can generate a uniformity of practices and thought, it is clear that there remains distinctiveness both between the intensive care nurses and intensive care physicians, as well as within the groupings of each profession. The amount of individual variability in the data is substantially influential, in quantity and mass effect, on the EOL decision making process. The individual philosophy of approach as a theme represents a tension exacerbated by the intensive care context which traditionally relies heavily on logical, rational, empirical decision making tools. This theme demonstrates the departure from the EOL decision making process in critical care as a predominantly objective exercise to a more subjectively-influenced experience. PN2 summarized: It’s so impossible to make a completely rational decision. There is no such thing as a completely objective decision in medical care. It’s impossible, really. Because every single one of us are subjects. Every single one of us are ‘I’ within a body…And as much as sometimes, critical care can give the illusion that it’s algorithms or it’s all AVOIDING FUTILITY 75 empirical…it’s all evidence-based, peer reviewed, so much of it also is what do you see with your eyes, and how do you interpret that with your heart. Inter-variability between nurses and physicians. While a team of health professionals may appear to be a collaborative unified team working for the best interest of the patient, the variation in training, education, philosophic foundations, and professional responsibilities can lead to distinctive missions and moral interests. PN5 explained: “we sort of deal with the medical model and we also deal with the caring model, and so, you know, that is something that physicians don’t do. They don’t deal with the caring model at all.” Nurses and physicians experienced divergent perceptions of their individual professional roles in the EOL decision making process as a result of these distinctive philosophic models. Nurses were chiefly concerned with the unique humanness of the patient, echoing the previously discussed overarching theme of avoiding futility. But if we’re doing something, and it’s causing suffering, and the patients say, are not, cognizant, and they aren’t able to make their own decisions and things like that, and it’s clear people are just suffering then we really have to sort of advocate for what’s best for the patient, right? So that’s why I think it’s really important that we have these discussions with family around the patient’s values - what they feel [the patient] would want. (PN3). Nurses attempted to prevent suffering and preserve the patient’s dignity through advocacy for what the nurse perceived or assumed to be the patient’s best interest. In contrast to the nurses, physicians rely heavily on the medical model to inform their decision making process. Physicians described an added legal component attached to the medical model, and this combination often resulted in physicians concluding things are not working AVOIDING FUTILITY 76 much later than the nurses. This medical-legal integration resulted not only from an apparent self-interest to protect their licensure, but as maintaining alignment with their chief mission as intensive care physicians to evaluate reversibility of all possible causes of the patient’s illness and promote life-saving measures. Variability between the mission and moral interests of physicians and nurses created tensions influencing the timing and process of how the EOL decision making process was carried out in a critical care. PN3 summarized her perspective on the differing philosophical approaches between nurses and physicians: When the physician comes to the conclusion… they do take a bit of experience from it…. but they’re trying to use more the clinical decision tools to come to that consensus… trying to define multiple organ dysfunction based on multiple parameters… Whereas I think when the nurses see it, they sort of see, the person in front of them…. I think what I experience often is that the nurses come to the conclusion a bit earlier than the physicians. [The physicians are] waiting for the criteria so that way they can medicallylegally justify themselves. In EOL scenarios in intensive care settings, prognoses are often not as predictable as in those illnesses often seen in palliative care settings, such as cancer. Even the PPS score, it was designed around cancer patients and so you can actually predict death with a fairly good degree of certainty based on PPS score, but things like dementia, COPD, and CHF, you never know, if that episode is ever a reversible one, or if it’s the final one.” (PP3) Evaluation criteria for physicians was experienced from a predominately objective, factual, medical measured lens. PP3 described how the dependency on diagnostic testing and objective AVOIDING FUTILITY 77 criteria once led to him delaying identification of a possible need for an EOL decision making process: We just need to give it a good 24 to 48 hours before the patient would come around and see if we could give it the best chance we could. We got the CT scan up front and unfortunately the CT scan showed catastrophic intracranial hemorrhage. And so, the conversation, went, immediately, from a discussion about, giving the 24 to 48 hours to...there’s…absolutely no hope. The primary sources for physicians and nurses in evaluating the need for an EOL decision making process differed due to their varying philosophic foundations, training and professional duties. Finally, the difference in philosophic orientation and education meant that nurses and physicians experienced variability in the power of their individual professional roles to influence the EOL decision making process. Nurses found limitations in their role in the decision making process, for example, experiencing their advocacy role as influential but not ultimately determining. PN3 commented: “You know, I’m not here to say, you know, ‘take them on or off life support.’” This limitation was experienced emotively as frustration: “it’s hard because…the medical order needs to come from the doctors” (PN4). Nurses perceive the physician as having “a lot more power than we do….[because] they can actually determine what they will or will not offer in regards to treatment.” Physicians articulated their role to primarily be one of facilitator and leader, but do not articulate a specific sense of a powerful or authoritative position. Intra-variability of nurses. Regarding the individual philosophy of approach within nurses as a professional grouping, they were largely cohesive and interchangeable in their role and assignment with little influence on the EOL decision making process. Nurses gave examples AVOIDING FUTILITY 78 of transitioning seamlessly between patients, whether because of unit routines or to support colleagues who may have been experiencing distress. PN5 described difficulty coping during a particularly distressing EOL situation where a patient became agitated and appeared to be suffering while waiting for family to arrive to complete the EOL decision making process: I couldn’t go back into that room. I just…I had to…I had to hand him over, because I was actually covering for a nurse at this time, and she was on her break and it was an extended break, and I had to hand him over to another nurse, once we got him sedated, because I couldn’t go back in there. PN3 disclosed that intra-group collaborative support between nurses ranged from sharing simple tasks, or garnering feedback and advice, to complete alteration of patient assignment due to emotional distress: It can be a lot. So, sometimes…and I hate to say it, for continuity of care, it’s really good to be with your patients consistently throughout your set, but sometimes you need to ask for a different assignment, if it’s too much. Because we still have to get through the day, and you know, try and be the best you can for your patients and families and if it’s impacting you, you just have to be able to recognize that in yourself, and have a bit of self-care, and then, say to your charge nurse, or whoever, like, ‘I can’t be…with this…with this… this assignment tomorrow’ or something….Usually work’s pretty accommodating with that (PN3). Variability in the emotional distress of nurses in the EOL decision making process appeared to be dependent on numerous factors including: contextual factors, the nature of the situation leading to EOL, and relational connection with the family and patient. Nevertheless, the nurses interviewed consistently recognized the need to acknowledge this emotion and to distance AVOIDING FUTILITY 79 themselves, either from the emotion itself, or from the situation by allowing another nurse to take over interchangeably. While several individual nurses interviewed experienced wrestling with their personal beliefs in the EOL decision making process, they are adamant that this did not change the care that they provided. PN3 acknowledged that personal beliefs and values “colour” the EOL decision making process for herself, but PN1 was much more reserved, stating: I don’t know if it influences or not. Because “influences” means that it affects their nursing care…. I don’t want to say it influences them because then I am saying they are not doing the job they are supposed to do… I mean…I’ve never gone and talked to somebody about God and what they would want or anything like that. Physicians interviewed did not comment on individual nurse intra-variability as influencing their experiences as physicians during the EOL decision making process. The language used by physicians consistently referred to nurses as a whole cohesive team, rather than singling out or describing individual experiences with specific nurses. This suggests that nurses are viewed with cohesive interchangeable unity not individually influencing the process. Intra-variability of physicians. Physician participants openly confessed to a wide range of individuality in philosophy of approach during the EOL decision making process, with PP2 acknowledging: Absolutely…there’s some docs that will usually phrase it…’What do you want us to do?’ And others who are a lot more heavy-handed and say, ‘This is what’s appropriate and possible’…and this is what will be offered and this is what will not be offered. Within the ICU, it is conceded by multiple physicians that one physician may be completely “inattentive” (PP1) to the EOL realities of a patient, leaving difficult conversations and AVOIDING FUTILITY 80 discussions for the next physician. For example: “I do know that sometimes we take over the service for another physician and…. see that no discussions have occurred through the entire week and so then we have a whole series of conversations and withdrawals of care”(PP3). The isolative nature of critical care physician practice influences the differences between a critical care physician’s individual practice and the practice of their other ICU physician colleagues. After describing the leading of the health care team and family through an EOL decision making process, PP1 states, “That’s how I did it…but you know…I don’t know how everybody else does it… because I only watched.... that’s one of the things about the way we work in ICU’s…we don’t generally watch other people… doing critical care.” There is very little feedback or support from other physicians. Beyond this, there is little explanation, articulation, or selfreflection in the physician data about why this extensive individual variability occurs amongst physicians. Overall, the physician’s philosophical approach to the EOL decision making process appears to be dictated by individual philosophy rather than prescribed professional responsibilities or duties. Physician-physician variability and subsequent tension occurs not only within the ICU context itself, but between physicians who share patients across hospital services or back and forth between community and acute care. Blame is placed by ICU physicians onto other physicians for failing to begin advance care planning and EOL conversations. This apparent neglected responsibility burdens ICU physicians with having intensified and problematic conversations with patients and families. PP2, when discussing his role in the EOL decision making process says that, “probably the biggest barrier for us…would actually be that other services don’t do it and so it makes us sort of the bad people.” PP3 gives a case study example: AVOIDING FUTILITY 81 One case I had...88-year-old female with end-stage heart failure, end-stage chronic kidney disease that came into the ICU.…she came in with heart failure…she had come in with 3 or 4 episodes of heart failure in the last six months and longer and longer hospital stays every time. For whatever reason, there was never a conversation about end-of-life with this patient. This patient was actually full code when they arrived in the ICU…for the fourth time. So we tried heavy duty Lasix and heavy duty Lasix really didn’t work. So then we tried a Dopamine and Dobutamine strategies with Lasix and that didn’t work and all we did was make her confused and she was bipap dependent and it was just terrible. The family… kept wanting to push harder and harder and we kept having conversation after conversation basically saying that there really is no way to push harder. ICU physicians experienced the variability in practice of physician colleagues both internally and externally to critical care to have a large impact on the EOL decision making process. Finally, the mission of ICU physicians to constantly be evaluating reversibility while having access to the highest levels of advanced technology, led to physicians conducting individualized cost-benefit analysis regarding treatment options for a deteriorating patient. Personal experiences and personal values shaped physician decision making, creating variation in their individual thresholds of willingness to limit life-sustaining therapy. However, when asked directly in the interview about how their personal beliefs may influence the EOL decision making process, all physicians interviewed denied any significant influence. The tension between the available technology in the critical context and the moral and ethical implications of employing that technology in EOL situations remains a challenging decision, which physicians experienced subjectively and with variability. PP3 said: AVOIDING FUTILITY 82 And I think that’s really the issue is….yes we can fix this. Yes we can. But how many times should we? ….And so, I think that’s why there’s the variability. Is because we technically can re-bipap and re-bipap and re-bipap over and over again. And then, it’s easier just to provide the medical care than it is actually, to deal with, should we be doing this? Beyond intrinsic personal values, one physician acknowledged that variability amongst physicians in philosophy of approach may be influenced by external financial incentive, albeit he does so with an abstract tone: I can imagine financial pressure impacting some physicians because cost-benefit analysis, we get paid more to run a code blue than we are to, have a… family meeting…. So, I could imagine that having an implication with… if I look at my own practice that doesn’t feel like it sets in to my practice very much. So I think for some physicians, like, if you just look at economics, it doesn’t make sense to engage in family conversations. Nurses experienced extensive variability between individual physicians in their philosophical approach. One nurse accredited this with being the greatest shaping force on the EOL decision making process. Whenever the nurses referred to physicians in their interviews, they were clear to delineate their experiences during the process with specific, individual physicians either positively or negatively, rather than referring to physicians as a general grouping. For nurses, the individuality in physicians’ philosophical approaches contributed to an outworking of diverse experiences and emotional responses in collaboration with these individual physicians, and continual adjustments in their role as advocates. PN5 explained the collaborative tension with physicians who present as subjectively variable in their individualized approaches: AVOIDING FUTILITY 83 I think having a conversation with a physician who doesn’t take it as seriously as you do, or is not as emotionally connected to that person as you are and wants to put it off or doesn’t want to do it. Yeah, I think, I really, inside, have felt quite awful about those moments, and wanted to get into a fight with the doctor. The individual philosophy of approach by the physician required nurses to adjust their role of advocate for the best interest of the patient, aligning themselves with either the physician or the family. One of the physicians acknowledged that nurses waver in allegiance when discussing his perception of the nurse’s role: The nurse’s role is to advocate for the patient when they feel that the patient is suffering, and by advocate, not only do I mean, regarding the physician may be pushing the patient too hard, but, also, if the family is pushing the patient too hard (PP3). This fluctuating alignment created and contributed to tension and ambiguity in the decision making process, especially during the phases of achieving consensus in the health care team and meeting with family. Throughout the examples given by all the nurse participants, physicians were characterized as avoiders, fixers, assertive, or paternalistic in their approach. The physicians’ subsequent choice of approach heavily influenced the direction and form of the EOL decision making process because of their perceived professional role as authoritative determiner. Juxtaposing descriptions are given by nurses who describe individual physicians as “good” or “not so good” (PN1), “excellent” or “struggling” (PN2) at initiating and engaging in the EOL decision making process. Other descriptions more vaguely hint at the variability, “we have different physicians that have different ways of managing how these discussions happened” (PN4), or simply describe individual intensive care physicians as “not the type” (PN1) to engage AVOIDING FUTILITY 84 in the process. PN1 portrayed a variety of these approaches she has observed: “some physicians are very comfortable bringing it up,” but one physician “doesn’t approach end-of-life until it probably hits you in the….so we are going to do everything and we were continuing,” while still others “in their brain…they can take care of everything….they have that feeling, ‘we can fix everything, we can do this right?’” The wide variety in individual philosophy of approach taken by the physicians in engagement of the EOL decision making process was discussed by each nurse participant. PN2 described a specific physician assertively interacting with a family and indicated that his approach was the crucial determining factor in why she would describe that EOL decision making process as a positive experience: Like in the morning, when the patient was more clear… the doctor had a conversation with the patient and was super upfront with him about like, ‘Hey, the way that your kidneys are reacting and your lungs are reacting, it’s not looking good. And I want to be upfront with you. This is a difficult conversation for us to have but I cannot lie to you. Things aren’t looking good and I want us to be open with you and I want us to be open with you about some of our options here.’ So there was this authenticity and straight-up communication with the patient directly when the patient was able, and then also with the family directly. Avoidance in approach by physicians was also characterized by nurses as resulting in passivity and indirect communication to families. This approach is well-portrayed in an example from PN5 who described: “doctors who are very wishy-washy and not direct at all, and really leave families with more questions than they have answers, and not really understanding the true trajectory of somebody’s health and the end, what it’s going to look like.” AVOIDING FUTILITY 85 Negative characterizations of physician approaches were described by nurses as outliers, such as “one specific physician at work that has a harder time letting go of patients than other physicians” (PN5). Having said that, each nurse participant identified approaches of physicians that they found challenging to interact with. PN3 described her experience of a specific physician she perceived to be avoiding engagement in the EOL decision making process: Like, when you have that kind of, like bullheadedness…I hate to say that…there’s usually only one or two in the flock of sheep of physicians who are like this, but you can feel the presence when they’re on…because it’s when you aren’t heard. Paternalistic approaches by physicians were also specifically described as rare and yet, once again, every nurse participant gave an example of at least one physician they had encountered that fit this label of approach. PN4 recalled a physician speaking during a family meeting: “I know your family is struggling with this decision. I’m taking the decision...so you don’t have to make the decision. I’ll be making the decision for you.’” PN5 said that her impression of certain physicians is that “They want to be back in the days were the doctors were God, and that…the patients and families just did what the doctors told them to do.” Despite a characterization of these physician approaches as outliers, the consistent identification of this experience suggests that these approaches may be more common amongst physicians than initially described by nurse participants. Summary of individual philosophy of approach. Overall, a wide-range of variability in individual practice was observed, especially amongst physicians in the EOL decision making process. This is considered to be one of the greatest shaping forces in the decision making process experienced by nurses. Variation amongst physicians was characterized predominantly in the philosophy of their approach and is admitted by the physicians interviewed, at times, to AVOIDING FUTILITY 86 contribute to frustration within their own professional grouping. Individual philosophy of approach also occurred between the nurses and physicians as professional groupings despite a previously shared mission identified as avoiding futility. This contributed to collaborative tensions in the EOL decision making process. Intra-nurse variability was not considered to be a significant factor. Psychosocial factors such as environmental context, the nature of shift-work scheduling, and even financial considerations are all observed to contribute to this variability. Moral Weightiness Making an EOL decision in critical care is not something to be taken lightly; it comes with a moral weight for all stakeholders. There is a subjective experience of burdensomeness that is felt when responsibility is taken on at any point in the process. Of note, is the glaring absence of clarity from my data, regarding who is ultimately responsible for making the decision. Physician as ‘quarterback.’ Overall, physicians appear to absorb this moral weight and responsibility individually in their self-perceived role as “quarterback” (PP2). They described the “burden of making end-of-life plans” as “pretty lonely, and you’re always worried that you might be wrong” (PP5). Experiential understanding of this role stemmed out of the mission of physicians to “mop up medical-legal risk” (PP2). Specific professional responsibilities included having the professional role of signing their name to orders signalling a decision and direction of care. Physicians shoulder the subsequent moral responsibility exclusively, “ultimately, the ethical burden is on me to, as the doc, like, make that call” and PP4 stated this felt “like you’re the only one holding the bag, as the physician.” One critical care physician argued that as a professional grouping, physicians possessed the education and preparedness to absorb the moral burden inherent in EOL decision making: AVOIDING FUTILITY 87 We are the ones that are, like, educated and equipped to bear that burden, that moral burden in the sense of saying, that, at this point I think this is no longer beneficial to the patient, in terms of them as a whole person (PP2). Critical care physicians appear to experience a large burden of moral weightiness in the EOL decision making process. Deference to Families. Considering the large burden of moral weight held by physicians, as well as the perceived power and authority that they possess and are assigned due to their professional role, they continued to experience a sense of powerlessness at times against futility. All the physicians interviewed describe situations they have been involved with that contained prolongation and potential futility, despite their attempts at engaging the EOL decision making process, and that these occurred often at the request of family. This demonstrates that while physicians may be perceived by both nurses and physicians as having the largest influence on the EOL decision making process, they were not always the sole bearers of the moral weight or the ultimate authority in this process. Families, although their voices are not represented in this study, also have a large influence in decision making, and there appeared to be grave concern from both nurses and physicians around the level of responsibility assigned to families during this process. All the nurses who were interviewed reported family as a heavyweight in decision making, with PN3 specifically stating that families were “the ones making the decision, so we defer to them.” Although the physicians were considered by the same nurse to be the determiners, there was an inherent tension experienced because, “overall, [physicians] don’t usually take the power out of the family’s hands ever.” Appeasement of family requests to continue life-sustaining intervention occurred, according to nurses, although one physician stated AVOIDING FUTILITY 88 that when this did occur then the moral weight was inherently transferred to the family: “in fact, if they refuse to consent to withdrawal of life support, the moral burden for suffering, is in fact on them” (PP2). Multiple nurses in the data recognized the overall transference of moral weight during the EOL decision making process to family members as being unfairly assigned: No family member wants to live their life with the knowledge that ‘I was the one that told the doctor to take the patient’s bipap off’. Nobody wants to live with that for the rest of their life, if the patient dies afterwards. (PN2). In a poignant moment, a physician also voiced concerns that continual attempts to try and equip families during a family meeting may be an inappropriate delegation of the moral burden: The thing that I don’t like that is when it’s phrased as a question…when we’re like [to families], ‘What do you want us to do?’ That’s when we’re asking the wrong question, because most of us…we don’t have the tools to answer that, like if my mechanic asks me what [I want] done with my car…like, I don’t know…what do you think? Do you think its reparable? Do you think it’s worth the money?...et cetera. So, I, you know…I had a colleague once say, when my car is broken, my car is damaged, I take it to the mechanic, I don’t expect my mechanic to ask what I want done, I certainly don’t expect him to ask my daughter. (PP2) PN3 ultimately concluded that, in an effort to avoid futility and protect families from moral burdening, “boundaries have to be set with families dictating care. Because that’s not their job” (PN3). Nurses carrying-out. Nurses experienced a moral responsibility throughout the process in their recognition of the life-and-death nature of this decision. While they don’t have a directly AVOIDING FUTILITY 89 determining role in the decision making process, PN2 illustrated the sizeable moral weight they still experienced: It seems like so much of the conversation can be opened or closed based on what your assessment is, depending on how receptive the physician is to your assessment. There’s like, a moral and emotional weight on that, knowing, ‘If I start to open the door, this could be opened entirely and this could change the course of this patient’s future.’ Right? So you, bear a bit of the moral responsibility for opening the conversation on palliative care. In a way, that can sometimes be a bit scary, because you’re realizing that you’re part of making a decision, one piece of a huge puzzle, making a decision about a patient’s future…that is life or death? The nurses are the ones who will ultimately carry-out the result of the EOL decision making process, either to continue curative efforts and thus cause perceived “suffering,” or to withdraw care, determining the time of death for another life. This represents the distinct moral weight experienced in the decision making process by nurses. Moral weightiness created a profound amount of emotion for the nurses, and their fear of futility drove them in their role to advocate. One critical care nurse saw her role in intensive care as completely dichotomous: “I either help people die with dignity or I help them live” (PP3). Nurses very rarely displayed their emotions to families or patients at bedside. There was a strong desire to be seen as a calm and competent professional, meaning that emotions are often “put in the back,” or compartmentalized during the perceived duties of the professional role. One nurse described her experience of hiding these emotions as the weight of the EOL decision making process descended on her: AVOIDING FUTILITY 90 I will have an emotional response to the actual conversation and the actual process, particularly if we do go through with full palliation, particularly if I’m the one who goes in the room and turns off the pressors or takes off the bipap, or gives the first dose of palliative medications, that we know are going to relieve the pain and suffering but are also, like, going to cause the patient to be, like, sedated, like, incredibly sedated, right? And so, I find that in the moment, often I will be in the med room and I will be, like tearing up…because it’s a really hard thing! (PN2) This emotion, privately experienced away from the bedside, was often shared with other nurse colleagues as a way to distribute the moral weightiness experienced. Nurses described sharing each other’s tasks when they were aware one nurse may be struggling with the emotional and moral intensity. “‘I’ll go in and do that blood sugar check…you just go’….and even something as small as that is enough to sort of people, just to have that sort of breather…because you do…it’s so emotional” (PN3). Patient as burden relieving. Finally, it appeared that health professionals occasionally considered a decline in the patient’s status as a self-declaration by the patient, thus relieving them of the moral burden of EOL decision making. It is not that the moral weight was taken on by the patient, who is often unable to verbally or consciously participate in the EOL decision making process in critical care, but that the burden was relieved or removed because “the decision has already been made by the patient’s physical health” (PP5). Physicians used this language at times in order to relieve the moral burden for the family: And the way that the physician actually phrased it…was he sort of said, to them, “I’m letting you know that this isn’t your decision….the patient’s body has made the decision for us.” And that helped a lot in the decision making for the family, because they realized AVOIDING FUTILITY 91 that nothing that they do could actually change the outcome now. Like, they said, the patient…the physician said, ‘The patient’s taken the decision out of your hands, because his body is telling us…his body has already told us. You know, it’s showing us the signs that he’s not gonna survive this and that…his life is already coming to an end, despite all of our intervention’ (PN3). This concept that “the patient’s body has decided for us” (PN3) was a philosophical lens of approach that resulted in relief of moral weightiness experienced by nurses, physicians and families. Summary of moral weightiness. Unlike many of the technical and objective decisions made in a critical care context, EOL decision making carries with it a moral weight that has a large subjective influence on the process. For nurses, this moral weightiness played heavily into the emotional experience and drove them in their role to advocate during this process, while for physicians their role as “quarterback” led them to often bear this burden in isolation. As the nature of who ultimately makes the decision in an EOL decision making process remained ambiguous, it appeared that all major players in the decision making process including the nurse, physician, family, and patient were shaped by the concept of moral weightiness, whether perceived, ascribed, or offering relief from this weight. Family Receptiveness Family receptiveness refers to the family of the critical care patient and their willingness to engage in EOL decision making with the health professionals. Receptiveness seemed to be characterized as a dichotomy by interview participants, who identified families as either accepting or unaccepting. However, receptiveness was also seen as a dynamic process that took time. Ideally, nurses and physicians regularly hoped for families to move towards acceptance, AVOIDING FUTILITY 92 most often towards palliation and EOL care. Variability amongst families regarding receptiveness was observed and anticipated “because every family is different and every person is different in terms of their philosophies” (PP4). Family receptiveness was considered a key determinant in the decision–making process. PN1 stated that the EOL decision making process was highly variable “depending on how the family is.” The family was perceived to have a powerful impact on the timing and outcome of the decision making process: “until the family is ready, you can’t do anything about it” (PN1). Family was one of the most frequently cited words in the entire data set, and a bird’s eye view of the data demonstrated that for all participants, the acceptance or unacceptance of family was a critical influence of the physician or nurse’s experience of the EOL decision making process as positive or negative. Assessment of receptivity. Receptiveness of families was primarily assessed and judged by critical care nurses, rather than physicians, during the EOL decision making process. As alluded to previously in this chapter, nurses are highly relational, and their philosophical orientation appears to include a greater consideration for the “psychosocial model when it comes to patients and families” (PN5). Nurses experienced their role of developing a relationship with family and laying the groundwork of initial conversations to be crucial to the direction of the EOL process. However, the degree of engagement of the nurse in approaching families was dependent on the nurse’s assessment and subsequent judgment of a family’s receptivity. PN1 talked about initiating EOL conversations with families “only when the family is very receptive” and acknowledged that “some of our families are not receptive.” Physicians acknowledged that nurses’ proximity to the bedside, due to the nature of their professional role, resulted in greater exposure to family: AVOIDING FUTILITY 93 [Nurses] hear what the family says, they actually hear the raw feelings of the family. Whereas a physician will often get more of a distilled version of what the family is experiencing…. [nurses] see sub-conversations between family members which is often protected from the physician (PP3). Nurses not only assessed receptivity, but also influenced future family receptivity through giving clarity to family members. PN2 described how “the family is potentially open to the thought of palliation, because by then usually the nurses have brought it up.” However, if nurses deem families as unreceptive, they may not consider themselves to be the appropriate professional grouping to initiate EOL discussions. PN1 explained: Some nurses…do bring it up, but I think it has to be depending, like, I’ve brought it up a few times, but I have… I know that the family would receive it…. it’s very important to judge where the family is coming from, who the participants are, and who is the best person to, initiate that conversation. Unacceptance of families as experienced by physicians. Unacceptance of the reality of the patient’s deteriorating situation by family is experienced by nurses and physicians, unequivocally with prolongation and provision of futile care. Physicians described almost exclusively negative emotions of stress, unease, anger, and fear at both the anticipated and actual reality of confrontation with a family who is not accepting of the proposed EOL reality of their loved one. Despite denying any influence of personal emotion on the decision making process when directly asked in the interviews, it appeared that the negative emotional expressions from physicians when engaging with challenging families correlated to their ensuing responsiveness to continue engaging in the EOL decision making process. PP3 disclosed that when faced with unaccepting families, certain physicians could: AVOIDING FUTILITY 94 Stop tackling the problem head on, and start trying to ally themselves with the family… I would say that, probably the longer it goes on…the whole process, the less….initiative and interest there is in withdrawal care. Like there is, still, everyone knows that’s the end outcome, but because the family has been so militant, no one is pushing as hard as they used to be. Emotional memories carried by physicians from previous negative family experiences also appeared to shape future experiences of engagement with families, as well as the outcome of the EOL decision making process: So our recall bias tends to be these people who have these really turbulent courses in critical care who don’t do well, and we remember families as being crazy and unrealistic and entitled and all these things. So we tend to go in kind of gun shy to these situations where we think we see this coming a mile away and I think that emotionally charged, foundation can certainly, set the stage for, perhaps, premature limitation (PP2). Unreceptive families appeared to generate negative emotional experiences and memories for physicians impacting their engagement with the EOL decision making process. Furthermore, if unaccepting families were also perceived to be intimidating, such as threatening legal action, this led to a change in the way delivery of care during an EOL process was experienced. It exacerbated the emotional tensions of physicians’ interactions with families. PP4 stated that, “if families are threatening legal action…then the whole step-by-step thing…we’re pretty careful. And that can lead to angry interactions.” The threat of legal action also decreased physician responsiveness and engagement, because according to PP2, families threatening to pursue a legal route are perceived to be: AVOIDING FUTILITY 95 Looking for every single little detail to find a mistake if there’s a bad outcome. And those are the families where people walk away and don’t want to engage with them because these families are just looking for someone to blame, for something bad to happen, and that was sort of my nightmare scenario. In summary, while receptive families are considered ideal, the lived experience of unaccepting families is a critical influence that is highlighted by every physician interviewed as a particularly stressful aspect within the EOL decision making process. Unacceptance of families as experienced by nurses. Nurses, who considered care of families as part of their mission and professional mandate, albeit a secondary priority in comparison to the patient, experienced tension and emotional distress when faced with an unaccepting family. PN1 described this tension of duty to the patient in the face of an family that she experienced as unaccepting: So that is when I have issues with...when they are being kind of certified dead...like with an angiogram we know that they are clinically dead and the family is not accepting it and they are prolonging it and then prolonging it….sometimes we become so much familycentered care that we are doing things to appease the family, not the patient and sometimes, and I….sometimes I have trouble...I have a hard time with that…. Because we forgot who the patient is. That means we are kind of giving into a bully right?.... I mean…like we listen to the family, we let them intimidate us, we cont…continue, continue, when we know that the end result is the same. Tensions are experienced in the nurse’s professional mandate to establish a “therapeutic relationship with the family as well, while not prolonging suffering” (PN3). The patient’s best interest remained central to the critical care nurse, and while ideally it is assumed that the family AVOIDING FUTILITY 96 would act in the best interests of the patient, nurses were concerned that this may not be happening with a family judged to be unreceptive. In describing a difficult EOL decision of a young patient, PN1 highlighted this tension: Because the mother is not accepting...they are continuing with all the care and do everything that is possible but it is just prolonging the person's pain. We are just prolonging the family's wishes. We are not taking care of the patient. The nurse’s interest in avoiding futility is repeatedly acknowledged as coming into conflict with a family who may require time to process an EOL decision and may initially not be receptive to moving towards an EOL decision. The tension between the professional mandate for a therapeutic relationship with the family and the nurse’s mission to avoid futility in the context of a seemingly unreceptive family is summarized by PN3: Because if they’re not coping, you’re not going to go ahead and do the inevitable, right? You still want them to be on board. So if family are very, very set and they’re asking for another 24 hours or 48 hours, or, to even make a decision…like say they don’t even want to think about it…then we do that. Right? So, it just depends… you know, you don’t want to be mean. You don’t want to be unfeeling…. because this is something that’s kind of, literally…going to affect them the rest of their life. Acceptance as critical to positive experience. Families deemed to be receptive or accepting of the EOL decision making process in terms of an awareness that the ultimate outcome may be the death of the patient are not frequently described by participants. The receptive and accepting family does appear to be of critical importance to the nurse, but especially to the physician experiencing the decision making process as positive. PP3 describes a positive EOL decision making experience: “And so, it was a very, very, like it was a very sudden AVOIDING FUTILITY 97 episode, …the family just really seemed to have a good sense to in that situation…they all had a voice. I would say that situation went very well.” While experiences of a smooth process may be less memorable than distressing experiences, it is undeniable that the progression of family’s acceptance remained critical to both nurses and physicians as a necessary outcome in the decision making process. PN1 described a situation in which family acceptance facilitated an outcome: “MRI shows…anoxic brain injury. The family was ok with that… and… in three, four days all the family kind of got on board, and, you know, we ended up end-of-life.” Acceptance by families was crucial because of the role of family in the decision making process in critical care. The contextual environment and nature of serious illness results in patients often unable to articulate their wishes, and thus dependent on family to act as substitute decision-makers representing the patient’s best interests. PN3 described the legal process set out by the province to determine which family member becomes the official temporary substitutedecision maker and stated, “we defer to their opinion, and that’s… they’re the ones making the decision, so we defer to them.” PN4 also expressed a sense of powerlessness and deference to family: “you basically have to do what the family wants. And…. accept that. See…because you won’t be able to change…. you just kind of have to go with it.” As discussed previously who makes the EOL decision remains ambiguous and undefined in the data, but families are a powerful influence and the reason behind why a physician may refute their own ultimate goal of avoiding futility in attempting to balance the interests of the family: In terms of end-of-life, I find, you know, I think it’s…sometimes families really want to push on, push on, push on, you know, ‘Mom would have wanted that!’ And I know that it’s futile, but…often we end up doing things because of the family’s request that are not…medically helpful. I guess what I try and do then, I kind of sort of, put my… try and AVOIDING FUTILITY 98 keep the patient comfortable while we fulfill the family’s wishes, but that’s a difficult line to walk. Deference to families appears to occur out of a desire to generate a positive experience for the family during the EOL decision making process, as their acceptance is critical to a health professional having a positive experience. Receptiveness as realistic. While early acceptance by families was critical to a positive experience of the EOL decision making process for nurses and physicians, there are varying perspectives as to why variability in family acceptance occurs. Receptiveness appeared to be dictated by the apparent realistic-ness of family’s expectations about the outcome of the critically ill patient. These expectations were influenced primarily by a variety of psychosocial factors, including the family’s knowledge and understanding, societal and ethnic or cultural views, as well as the nature of the intensive care environment. With previously acknowledged variability in advance care planning resulting from variability in individual physician practice, the intensive care context may be the first exposure for family members to death and dying, and more specifically, the potential reality of death and dying for their specific loved one. If the family meeting was the initial exposure to EOL conversations the discussion is often much more difficult. Particularly we find often the case when it’s family who are coming in from out of town who haven’t been directly involved in the day-to-day care of the patient. There was an example of that, was probably a couple years ago, we had a very elderly lady with very severe aortic stenosis which was palliative and family were insisting on full code and couldn’t grasp that…. like from a medical point of view, that would actually be bad….like, it wouldn’t have any positive effect at all (PP4). AVOIDING FUTILITY 99 Families’ inability to grasp the reality of the extent of critical illness may also influence the realistic-ness of expectations. Nurses questioned the family’s comprehension: “Do they know what’s happening? Do you they know…. the disease process? Or what the actual problem is? (PN4). Another nurse stated: I find in ICU, sometimes, people don’t even know their loved ones are on life support. They don’t realize that. They don’t realize the ventilator is life support. They don’t realize that Levophed and Dopamine and Dobutamine are all forms of life support, supporting their vital organs” (PN3). The contextual environment of the intensive care unit, with its mandate to provide lifesaving intervention to the most critically ill patients, can also influence families’ receptivity to engagement in the EOL decision making process. Furthermore, the critical care context has intensive patient demands, often requiring 1:1 or 2:1 nursing care of patients, whose technological management can require extreme focus for the nurses. The EOL decision making process required a shift in attention by nurses towards the family in order to determine and promote family receptivity. PN1 recognized that as nurses, their professional mission obliges them to care for families’ needs, but that as a critical care nurse “sometimes you don’t have that time and support to give them because your patient needs more at that time.” Family care was not often described as being prioritized in the intensive care setting, with the physical spaces and layout for families described by nurses and physicians as uncomfortable, cramped and less than ideal. Furthermore, PN2 pointed out that regarding EOL discussions: There’s also not as much support for those conversations in critical care. Because they say, ‘No! Your primary job is to know how to titrate Levo, and titrate Precedex and how to help with an RSI, and how to…like…help with all these different procedures.’ AVOIDING FUTILITY 100 On limited occasions, the intensive care environment was considered helpful to furthering families’ acceptance and receptivity to the need to engage in the EOL decision making process. Despite previously acknowledged concerns from nurses and physicians regarding comprehension, PN3 stated: I think that, it’s such a serious environment, and it’s very intimidating…that people when they’re there…they realize that their family member is….dying. Like, for the most part, they realize, it’s very serious. Finally, societal and cultural expectations of individual families may contribute to receptivity and influence the EOL decision making process. PP2 provided a commentary on the impact of societal understandings of modern medicine: I think a lot of the entitlement and expectations we have are not the person’s fault individually, it’s just this kind of culture, where we are led to believe that anything is possible, and if somebody doesn’t survive an illness, particularly if they come into hospital for something that doesn’t feel like a big deal, it must be somebody’s fault. Receptivity may also be affected by a family’s particular cultural beliefs and values. In discussing an especially troubling EOL decision making process, PP1 expressed, “I think there may have been, you know, some cultural issues, as I mentioned, where the family was expected to maintain life support and any form of life at any cost.” Nurses also discussed receptivity to their initiation of EOL discussions to be culturally impacted, because certain cultural traditions may have greater acceptance “when the doctor mentions it rather than the nurse.” Summary of family receptiveness. Family receptiveness is a dynamic part of the EOL decision making process that has significant influence in shaping the experiences of nurses and physicians in the process. Family receptiveness is experienced uniquely in this decision making AVOIDING FUTILITY 101 process as a psychosocial factor in and of itself that remains a wildcard, largely external and independent of the control of critical care health professionals. While families are experienced by nurses, at times, to be a distraction from their chief concern for the patient in the life-saving critical care context, they recognized care of the family as vital to their role and philosophic orientation. Great tension is experienced by nurses and physicians with families who are perceived to be unaccepting, and this lack of acceptance appears to have considerable influence on the timing, direction of care, and physician responsiveness in the EOL decision making process. Chapter Summary Critical care nurses and physicians shared many examples of their perspectives and experiences of the EOL decision making process in their individual unit contexts. The influence of the high level of ambiguity of the process was evident, as was the shared mission to uphold dignity through trying to avoid futile care at all costs. Despite a lack of provided organizational structure or guidelines, discernible phases are seen and experienced by participants – identifying that things are not working, followed by achieving consensus of health professionals. Once this occur, a collaborative team meets with the family to explore expectations. This ambiguous process, through the rich descriptions of participants’ roles, emotions, and felt psychosocial factors, was noted be influenced by three major subjective forces. First, the individual philosophy of approach by health professionals contributed to a highly variable experience and outcome of the process. Secondly, a subjective moral weightiness was individually felt and acknowledged to be present by nurses and physicians, as well as deferred to family and at times relieved by the patient’s decline. Finally, family receptiveness, a factor external to the control of AVOIDING FUTILITY 102 the nurses and physicians was a highly influential aspect that contributed heavily to the emotional responses and subsequent actions of nurses and physicians. In all of this, the impression is that EOL decision making is increasingly complex in settings with advanced technology, and remains increasingly relevant in light of a population with advancing age and chronic co-morbidities. The process evidently requires the participation of both nurses and physicians to provide an optimal, high-quality EOL transition from a lifesaving focus. EOL care is no longer relegated to palliative areas, rather its philosophy and approach must be incorporated across settings of increasing acuity. The ethical and value-laden decision surrounding living and dying is naturally likely to arouse emotions and psychosocial dimensions. These are highlighted in a paradoxical environment such as intensive care that persists as being technical, objective, and at times distanced from an often unresponsive patient. Health professionals remain human, subject to emotions, tensions, and communication challenges in this process, and this chapter sheds light on the magnitude of the impact this has on the decision making process. Nurses and physicians, despite a recognition and protection of their own missions and moral interests which create tensions between them, have an intent to promote the patient’s best interest in their shared mission to avoid futility. Chapter 5 will revisit the findings, situating them within the existing field of literature. Chapter 6 will provide recommendations for the development of improved EOL care in critical care settings as well as governmental policies and research possibilities so as to better address the gaps experienced by nurses and physicians in this area. AVOIDING FUTILITY 103 CHAPTER FIVE: DISCUSSION This chapter discusses the findings in relation to current literature as well as the research questions this study sought to answer. The approach for gaining insights in this chapter is guided by Thorne (2016) who asks the following questions: 1. What are the main messages here for the practice field? 2. What is it that I know now, having done this study, that I did not know before? 3. Or, perhaps that I did not know in quite the same way? (p. 221) The study’s purpose was to develop a meaningful understanding of how intensive care nurses and physicians experience individual differences in emotions, psychosocial factors, and professional roles within the process of EOL decision making. The primary objectives of this research were: 1. To explore presumed and perceived roles and responsibilities in EOL care delivery for physicians and nurses; 2. To explore personal beliefs and attitudes that may shape nurses’ and physicians’ delivery of EOL care; 3. To explore the impact of psychosocial factors on shared decision making in EOL care; 4. To explore the role of emotion in clinical decision making around EOL care for nurses and physicians; and 5. To explore how the underlying “mission and moral interests” of each group (nurses and physicians) shape the decision making process. In answering the research questions, it was noted that the depth and breadth of the participants’ responses to engaging in the EOL decision making process were more involved AVOIDING FUTILITY 104 than the initial questions. Although the findings from the data analysis answered the research questions, the themes suggested that the interplay between emotions, roles, and psychosocial factors are much more complex in the way they subjectively influence the ambiguous process than was originally anticipated early in the study. In the discussion that follows, articles from the literature review (presented in Chapter 2) are primarily considered; however, additional literature was also located to better support the analyses of the themes. Chapter 5 will begin with a brief overview of the findings which will be followed by discussing the salient motifs that shed new insights or offer new perspectives on the current literature. The discussion of these key findings will be structured in the same manner that the findings were presented in Chapter 4, moving topically through the themes from the overarching theme of futility, through the ambiguous decision making process and the three influential themes of the process (portrayed in Figure 1 on p. 60). Discussion of Findings An overall striking feature of the findings is the dynamic and subjective nature of the EOL decision making process portrayed. As a depiction of how the EOL decision making process is experienced by nurses and physicians, it confirms that in a critical care context this process is not simply a rational, cognitive, objective exercise (Kozlowski et al., 2017). For nurses and physicians, the process appears heavily influenced by individual philosophies subject to psychological and emotional responses, the socio-cultural milieu of the intensive care context, and broader cultural, ethnic, and historical understandings of values of all stakeholders. Though the participants discussed an overwhelming desire to remain professional through a personal distancing or compartmentalization of personal beliefs, attitudes, and emotions, the findings and literature support that this hazy, ill-defined process is fraught with these same individuals AVOIDING FUTILITY 105 navigating these emotions and psychosocial factors stemming from both personal and professional missions and moral interests (Coombs et al., 2012; Espinosa et al., 2010; Kozlowski & J., 2017; Laurent et al., 2017). This is only further escalated by the intensive care setting, seemingly antithetical environment of intensive care in which to initiate EOL. This process happens frequently in Canadian intensive care settings, presenting unique challenges to the transition (Bach, Ploeg, & Black, 2009). Avoiding Futility Futility as Construct. The concept of futility in relation to EOL care transitions in intensive care settings is not a novel one; however, having it revealed as an overarching theme was a surprising finding, given that in Chapter 1 it was identified as not being primary focus of this research. While futility remains vague and ill-defined throughout the literature, and as such, will not be too strictly defined in this thesis, it is shown in the literature to be on the minds of both nurses and physicians (Flannery, Ramjan, & Peters, 2016; Jox, Schaider, Marckmann, & Borasio, 2012; Palda, Bowman, McLean, & Chapman, 2005; Wilkinson & Savulescu, 2011). In Jox et al.’s (2012) study which reviewed German medical cases under ethics consultation, the majority of cases that were retrospectively analyzed concerned instances in intensive care where the physicians perceived futility. This demonstrates the relevance and perception of the clinical problem of futility despite critiques from the literature that caution health professionals against using futility terminology because it “blurs medical and ethical justifications of treatment and contains negative overtones” (p. 540). Wilkinson and Savulescu (2011) argue from an American perspective, that progress in the area of futility would be to have greater definition, usage, and consistency in the terminology. While their study was primarily directed towards physicians, I would argue that this would hold true as a necessity for the entire interdisciplinary team AVOIDING FUTILITY 106 including nurses, who from my findings clearly struggle with concerns about unnecessary prolongation. Wilkinson and Savulescu (2011) suggest the term “medically inappropriate” as oppose to futility, and provide a simple definition of “treatment that is of sufficiently low efficacy that doctors [or nurses] believe it should not be provided even if the patient or his/her surrogates request it” (para 17). The terminology “medically inappropriate” is also encouraged by Wilkinson and Savulescu (2011) because it provides a stronger suggestion that this judgement arises from an informed position as a factual, objective health professional, rather than a personal stance. Futility, however, is acknowledged by the literature to be both a factual and subjective judgement, and my findings offer corroboration that it is indeed informed by both factual assessment and subjective personal judgements (Laurent et al., 2017; Mohammed & Peter, 2009; Palda et al., 2005). In the literature, nurses appear to make the decision almost exclusively subjectively, largely using intuition and prior experiences. Intuitive knowing is defined by Chinn and Kramer (2015) as “the immediate knowing of something without conscious use of reason” (p. 117). This perception was validated by the impressions physicians gave regarding nurses’ assessment of futility in my data (Gallagher et al., 2015; Gutierrez, 2013; Jensen, Ammentorp, Johannessen, & Ørding, 2013). However, in speaking with the nurse participants of my research, they utilized various ways of knowing, including clinical assessment, upon which to base their conclusion. Palda et al. (2005), offering a Canadian perspective acknowledges that there is a great deal of literature written by nurses reflecting “their important role in the bioethical care of the patient” (p. 208) in recognizing futility; and Jensen et al. (2013) who studied Danish intensive care nurses suggested that nurses “first and foremost were influenced by what they saw in the patient” (p.99). This literature supports my finding that avoiding futility is a foundational concern not just AVOIDING FUTILITY 107 for physicians, but nurses as well. It also supports the nursing endeavour of preventing the immediate, in-the-moment suffering of the patient, and acknowledges their consideration of futility not as primarily an emotional response, but one based out of an ethical stance. For physicians, the literature recognizes that concerns regarding futile care is indeed experienced by physicians, but argues that futile care may also be perpetuated by physicians in their role as determiner of decision making (Gutierrez, 2013). This stands in contrast to my findings from physicians, who demonstrated a strong aversion towards providing futile care, and expressed significant negative emotions if they were unable to avoid futility. The perception of physicians who pursue a futile course of action, often presented in nursing literature, may be a misunderstanding created by the physicians enacting their role of evaluating reversibility and of taking extended time in attempting to make a factual judgement. The idea that physicians’ decisions of futility are influenced by the subjective concern for the patients’ ultimate quality of life and future overall outcome is supported by Palda et al. (2005) who argue that “what is futile for one health care provider may not be for another” and that “recall bias may play a role” in determining futility (para 1). Overcoming differing vantage points. Concerns regarding avoidance of futility may explain the strong emotional experiences and, at times, moral distress experienced by nurses and physicians (Mohammed & Peter, 2009). The focus for nurses on avoiding futility to alleviate inthe-moment suffering of a patient, and concerns that further intervention will create more suffering than benefit, are well-established in the literature as critical to the nurses’ experience of a ‘good death’ in intensive care (Gallagher et al., 2015; Jensen et al., 2013; Laurent et al., 2017; McAndrew & Leske, 2015; Robichaux & Clark, 2006). The outflowing role of nurses in influencing the process as advocate, helper, and relational connector with families are also all AVOIDING FUTILITY 108 identified and described in the literature and are consistent with my findings (Bach et al., 2009; Calvin, Kite-Powell, & Hickey, 2007; Gallagher et al., 2015; Hov, Hedelin, & Athlin, 2007; McAndrew & Leske, 2015; Robichaux & Clark, 2006). However, what is unique to my findings is the conceptual understanding that avoiding futility is the positive driving force and foundational motivator to ensure these roles are undertaken and have a shaping influence on the EOL decision making process. The conceptualization of a good vs. bad deaths as perceived by physicians has limited exploration in the literature, which may contribute to the lack of findings regarding a shared mission. Jox et al. (2012) does identify and support, however, that assessing whether treatment is medically futile is a primary duty of physicians in the EOL decision making process. The negative emotional experiences voiced by physicians in my data appear to be inextricably connected to concerns around futility. Discussion of emotional experience of physicians in the EOL decision making process is unfortunately also limited in the literature, although acknowledgement of moral distress around futility does occur and is noted to be at its peak for physicians when they perceive themselves to be enacting futile care (Flannery et al., 2016; Hamric & Blackhall, 2007; Jox et al., 2012; McAndrew & Leske, 2015; Mohammed & Peter, 2009). Kozlowski et al. (2017) discusses how participants had to be stimulated to talk about emotion, and my findings are consistent with this finding in that physician participants discussed professionally distancing themselves from emotion and denied its influence on the process. My findings indicate that despite these efforts on the part of physicians, emotion still seeps in and has resultant effects on engagement in the process. Kozlowski et al.’s (2017) critical literature review supports that the “anxiety and stress associated with health care provision…[was] consciously or unconsciously impacting on clinicians and, hence, on the decisions they make and AVOIDING FUTILITY 109 on how they communicate those decisions” (p. 10). Given this lack of literature, the emotion experienced by physicians warrants further exploration, especially if its expression represents the underlying missions and moral interests of the physician and may have unconscious or conscious determination of the outcome of the process. Avoiding futility as a shared mission. What remains to be explored in detail by the literature is my finding of avoiding futility as a foundational motivator to initiating and engaging in the EOL decision making process as a mission shared by both nurses and physicians. Laurent et al. (2017) suggested that collegial decision making in intensive care EOL situations is difficult because nurses and physicians defend different moral interests and undertake missions with conflicting ideals of: “avoid[ing] making the family suffer and avoid[ing] making the patient suffer” (p.2029). As described in Chapter 4, the differing professional missions of nurses and physicians are characterized not as being in complete conflict, but as providing differing vantage points through which both groups attempt to avoid futility. While my findings acknowledge that other differences do exist regarding philosophic orientation between nurses and physicians, to be discussed later in the chapter, those presented by Laurent (2017) were not the conflicting ideals that emerged in this study. Rather, avoiding futility as a shared mission reflects a new way of thinking about how intensive care physicians and nurses may approach the EOL decision making process. McAndrew and Leske (2013) hint at a shared reality with differing vantage points when they acknowledge that minimizing or avoiding patient suffering was the primary motivator for advocacy for both nurses and physicians; however, they acknowledge this advocacy was displayed differently because of nurses’ and physicians’ respective “scopes of practice” (p. 7). Avoiding futility as a shared mission demonstrates a collaborative way for each health AVOIDING FUTILITY 110 professional to enact and protect their intent to promote the patient’s best interest in a highly technologically dependent context. Furthermore, avoiding futility may represent a starting place of unity in beginning to mitigate collegial tensions between nurses and physicians. Westphal and McKee (2009) contend that strong interdisciplinary collaboration in the EOL decision making process in the intensive care unit “is ethically desirable and improves clinical outcomes,” and avoiding futility as a shared mission may represent a starting point for this (p. 223). Social Context. Avoiding medical futility as a shared mission was revealed by both nurses and physicians through a mutual desire to consider the patient’s best interest and uphold patient dignity. Participant values of both nurses and physicians revealed consistent and repetitive concerns of wanting to ensure the dignity of the patient in the dying process, and that this was in danger of violation if futility was felt to be a potential outcome. One must consider the current historical landscape of Canadian context given the prominence of the language of “dignity” used by participants in their shared concerns about prolongation. Cook and Rocker (2014), in their article on “Dying With Dignity in the Intensive Care Unit,” define “dying with dignity” as recognizing “the intrinsic, unconditional quality of human worth but also external qualities of physical comfort, autonomy, meaningfulness, preparedness, and interpersonal connection” (p. 2506). Dignity in dying is a phrase that has been widely taken up by those promoting Medical Assistance in Dying (MAiD), which became a legislated process in Canada in 2016. Organizations that advocated strongly for this movement and continue to defend this now legal right included those such as non-profit “Dying with Dignity Canada.” The name of their organization in and of itself accentuates the association of these terms, dignity and death. The shift from MAiD as an advocacy movement to a Supreme Court Ruling and introduction of AVOIDING FUTILITY 111 Bill C-14 to a legal right in 2016 furthered the association and created new understandings of what it means to die a dignified death in the context of medical assistance. While MAiD is unlikely to occur in an intensive care setting due to the legislated need for the patient to have adequate cognition and provide consent, the larger societal conversation is relevant in understanding participants’ perceptions of what a ‘good’ and ‘bad’ deaths means. In summary, medical futility is considered to be, philosophically, both an objective and morally subjective judgement. However, there is limited literature on the input of the health professional’s personal values and moral judgements entering clinical decision making models and frameworks, which primarily conceive the clinical decision making process to be “cognitive, rational and technical” (Kozlowski et al., 2017, p. 2). Overall, the quest of avoiding futility arouses an emotional response from both nurses and physicians in my data. While occurring from differing vantage points because of their differing professional responsibilities, both nurses’ and physician’s viewpoints are needed in the value-laden and complex process that is EOL decision making. I would conclude that my findings support Laurent et al.’s (2017) conclusion that these emotional and psychosocial dimensions must be given the acknowledgement they deserve by being validated as a “professional stance” and shared more between groups rather than distanced and compartmentalized (p. 2029). The idea of avoiding futility as a shared mission may represent an opportunity for improved inter-professional collegiality. It may assist in overcoming the current lack of understanding of the mutual roles played and unique perspectives held by nurses and physicians (Jensen et al., 2013). The identification of avoiding futility as a shared mission undertaken by all health professionals represents a new vantage point in the data and a departure from previous literature suggesting that physicians are drivers of futile care (Palda et al., 2005). AVOIDING FUTILITY 112 Ambiguity of the Decision making Process The lack of structure or protocol in the EOL decision making process in critical care is mentioned by all participants in my data. This subject was initially a question in the interview designed to gain a greater contextualization in which to situate the experiences of nurses and physicians, but the emphasis on the ambiguity surrounding the decision making process that rose to the surface is a significant finding. There is limited literature articulating what an EOL decision making process looks like in an intensive care context, and Townsend and Hardy (2008) acknowledge that “there is little international agreement on a uniform approach to end‐of‐life care” (para 1). Indeed, conceptual models depicting the EOL decision making process are limited and those that do exist vary in their scope and boundaries. Coombs et al. (2012) conclude that there is “currently limited guidance on how to manage transition from cure to EOL discussions amongst teams” and that wider acknowledgment and understanding needs to occur regarding the “emotional and cognitive demands made on all team members when transitioning” (p. 526). The literature is also variable in its reference to EOL decision making, oscillating between describing it as a singular event and identifying its occurrence as a multi-phasic process. Furthermore, while the literature idealistically promotes the concept of a shared decision making process, there is lack of consensus regarding clearly defined boundaries of how and when this ought to occur (Coombs et al., 2012; Flannery et al., 2016; Thelen, 2005; Townsend & Hardy, 2008). Thelen (2005), in a case-study article, does describe the EOL decision making process as occurring in a “step-wise” fashion validating the visual of the phases of decision making developed from my data in Figure 1 (p. 30; refer to p.60). Thelen’s (2005) steps also include as a major emphasis an outcome of the decision making process of foregoing resuscitation, followed by outlining steps AVOIDING FUTILITY 113 on how to withdraw various forms of life support. However, from my data it seems clear that in the experience of health professionals interviewed, there are several pre-steps before a decision to withdraw treatment, including the recognition that things “aren’t working” and achieving consensus of the health care team. Once an EOL decision has occurred, there is some semblance of noted structure and protocol; however, it is the process to arrive at the decision that remains ambiguous in my findings. Despite a lack of process, the three phases of the process, namely identifying ‘things aren’t working’, health professionals getting ‘on the same page’, and family meeting as getting the family ‘on board’, were articulated by participants in their descriptions as needing to occur before an outcome can be confirmed. Coombs et al. (2012) validates these phases, not as steps in a process but as critical challenges occurring for health professionals. Discussion by Coombs et al. (2012) contains language noticeably similar to my participants’, including the challenge the “identification of those who will not survive” and that a key point of transition “occurred when consensus from the whole clinical team occurred” (Coombs et al., 2012, p.523). Finally, they report that “family members were also involved in these discussions, although this usually occurred once consensus from the health care team had been reached” (p. 525), further validating my finding that the family meeting occurred after health professional consensus had been reached. However, for Coombs et al. (2012) the first stage is a more solid judgement, perhaps containing an identification of futility or, at the very least, a stronger association with dying, rather than an ambiguous trajectory in identifying that the patient is not recovering as expected from the life-supporting therapies. It is possible that the phases described by my participants represent a new theoretical construct for understanding how the EOL decision making process is AVOIDING FUTILITY 114 carried out in intensive care. These findings warrant further investigation in order to ensure clarity of thought when one is discussing the EOL decision making process. Ambiguity and subsequent collegial tensions between nurses and physicians within the EOL decision making process are apparent, and discussed extensively throughout the literature. In regards to the noted phase of identifying ‘that things aren’t working’, the timing of this admission does generate significant tension, and the fact that nurses often precede physicians in arriving at this conclusion is well-documented by the literature (Brooks et al., 2017; Espinosa, Young, & Walsh, 2008; Langley, Schmollgruber, Fulbrook, Albarran, & Latour, 2014; Laurent et al., 2017; McMillen, 2008). The reasons for this difference in timing, including nurses’ proximity to the bedside, often providing 1:1 or 2:1 around the clock care, and experiential emotions of perceiving the suffering patient up close, are also well validated by the literature (Gallagher et al., 2015; Gélinas et al., 2012). Furthermore, Espinosa et al. (2008) confirm the finding that during this phase, physicians viewed “death as a failure” (p. 90). However, my analysis builds on this recognition demonstrating that this personal judgement can contribute to the perceived delay in a physician’s identification that things aren’t working and compounding collegial tensions between nurses and physicians. Laurent et al. (2017) discuss how, for physicians, the EOL decision making process goes “against the very meaning of professional practice…. forcing physicians to abandon the possibilities that medicine provides” (p.2025). However, the emotional experience of helplessness and powerlessness that is experienced by physicians in this personal admission of failure and how their own willingness to admit this defeat may influence the introduction of the process, as seen in my findings, have not been fully considered by the current literature. Emotive experiences of helplessness and powerlessness are voiced in the literature predominantly by nurses when they are discounted from the process or AVOIDING FUTILITY 115 forced to carry out the results of decisions they were not included in (Calvin et al., 2007; Espinosa et al., 2010; Laurent et al., 2017). Once again there is limited description of these emotions from physicians. However, as will be further discussed later on in this chapter, the emotional response of physicians correlates with their responsiveness and engagement in this process, and may be at the root of their unwillingness to even admit that this process is occurring. Reflecting widespread consensus across the literature, Brooks et al. (2017) found that “conflict between health care teams often contributed to poor timing of EOL care discussions, affecting timely commencement of EOL care plans” (p. 340; Espinosa et al., 2010; Espinosa et al., 2008; Kozlowski et al., 2017; Laurent et al., 2017). Collaborative tensions during the EOL decision making process in the literature reviewed were often related to the exclusion of nurses by physicians who did not appear to validate them as contributory, valued members in the decision making process. For example, Espinosa et al (2008) suggested that nurses’ experience of being excluded by the physicians from the decision making process altogether led to significant experiences of moral distress for nurses. Thus, a remarkable finding of my study was the repeated description of positive inter-professional collaborative experiences by participants, both nurses and physicians. While nurses occasionally discussed feeling unheard by a physician, depending on the physician’s individual philosophy of approach, most nurses in my findings did not report being excluded or discounted from the process. Across the literature, there is a desired goal for improved collaboration between the two groups, so it is significant that in this study positive collaborative experiences were repeatedly identified by both nurses and physicians. AVOIDING FUTILITY 116 Individual Philosophy of Approach Kozlowski et al. (2017) and Laurent et al. (2017) discuss clinical decision making to be a theoretically cognitive, objective, empirical process, often discounting the role of emotion, especially when encountered in critical care settings. The heavyweight influence of the subjectivity of individual philosophy of approach and its subsequent emotional impact on the EOL decision making process in intensive care as a finding in my data resonates with and builds on this previous work. It is clear from the findings presented in this thesis that emotions, psychosocial factors, and professional roles all influence the widespread intra- and intervariability experienced by nurses and physicians in the EOL decision making process. Inter-variability between nurses and physicians. The difference in the influence of inter-variability between nurse and physician groupings must be considered in terms of their underlying missions, moral interests, organizational set-up, and professional roles. Physicians’ experiences of their challenging role, including legal responsibilities, evaluating reversibility, medical prognostication and subsequent communication of this information, is well discussed in the literature (Gutierrez, 2013; McAndrew & Leske, 2015; Westphal & McKee, 2009). For nurses, their mission to represent the patient’s best interest as well as their philosophic orientation toward a biomedical model carrying a holistic interpretation, are considered in the literature to be undervalued by physicians (Espinosa et al., 2010). The difference in timing of the initiation of EOL care discussions between nurses and physicians also primarily stems out of these varying missions, with many of physicians not initiating until “prognosis is poor” according to Westphal and McKee (2009, p. 222). The inherent tension between the philosophic foundations of medicine and nursing results in dissenting narratives and contributes to the intervariability and individual philosophies of approach between the two groups. While distinctive AVOIDING FUTILITY 117 professional roles of nurses and physicians are easily recognized by health professionals in the literature, recognition of the underlying philosophic missions as contributing to collaborative tensions is less common and deserving of greater research (Espinosa et al., 2010). Shift-work as organizational factor. The impact of shift-work and rotational schedules proved to be relevant in my findings as influencing the EOL decision making process; however, in my literature review it was not identified as an organizational or psychosocial factor of relevant study. Organizationally, a single physician, often on a weekly rotation as described in the data by participants, is responsible for all intensive care patients in a single unit. This is in contrast to the large number of nurses present simultaneously in an intensive care unit, who may be assigned to patients individually or on a 2:1 basis, and are rotating often every twelve hours. The difference in scheduling between these two professional groups may impact perceived roles. For example, the physician’s role, as determiner of direction of care for the week they are singlehandedly in charge of the intensive care unit may give greater license for enacting personal judgement, while nurses, who are working more collaboratively in their constant rotation where they may only be present for a single day, may feel more constrained by hospital policy and professional standards to perform within professional boundaries. Nevertheless, the question as to why nurses appear to behave and are treated as a cohesive professional group, while physicians appear to act more upon an individual code or philosophy of approach resulting in collaborative tension remains unanswered by the literature and warrants further investigation. Intra-variability of Physicians. While nurse intra-variability shows interchangeability and unity with little variability or influence on the EOL decision making process, intravariability amongst physicians is dramatic in its variance, and is palpably felt as a determinant in this process. The sheer weight demonstrated by the critical mass of findings regarding the AVOIDING FUTILITY 118 extensive influence of individual philosophy of approach by the physicians is a critical finding. While single studies across the literature acknowledge certain variable individual physician factors, such as personality, personal beliefs, previous experiences, relationship with the nurse, or personal choice of nurse involvement in decision making, there is no single study in my literature review studying this phenomenon with any specific focus (Calvin et al., 2007; Flannery et al., 2016; Gallagher et al., 2015; Gélinas et al., 2012; Hov et al., 2007). Much of the variability in the nature and frequency of intensive care physicians’ EOL decisions remains unexplained, although the literature seems to highlight the importance of individual physicians as an overall subjective consideration (Poulton et al., 2005). Variability in individual philosophy of approach amongst physicians also contributes to physician-physician tensions, and this is validated by Laurent et al. (2017), who describes similar findings. However, in my findings, physician-physician tension is distinctly attached to a perceived lack of advance care planning. Regarding advance care planning in the literature, participants in Brooks et al.’s (2017) study noted the increased difficulty of EOL conversations in intensive care and “recommended that these discussions should take place in the community, in the general care areas, or in the emergency department before being admitted to the ICU” (p.338). However, this comment did not appear to be made in relationship to physician-physician tensions, nor was it articulated with a sense of blaming, as seen in my findings, but was rather an optimistic request deemed to be helpful, primarily for families to better “understand the wishes of their loved ones” (Brookes et al., 2017, p.338). Advance care planning or lack thereof, remains an under-explored psychosocial factor that contributes specifically to physicianphysician collegial tensions and subsequent emotion in the EOL decision making process. AVOIDING FUTILITY 119 Moral Weightiness Mohammed and Peter (2009) in their consideration of Rituals, Death and the Moral Practice of Medical Futility, examine CPR and other life-sustaining intensive care measures as moral practices. Morality is not merely theoretical in construct, but considered to be a “family of social practices…mediating important social meanings” (Mohammed & Peter, 2009, p. 296). Notable in their study is the assertion that healthcare providers have clear and predefined roles in resuscitation efforts, providing them with “a social script of how to act, feel and make sense of the health care team’s shared responsibilities when medical interventions fail” (Mohammed & Peter, 2009). This social scripting and shared responsibilities depict a scenario where there is an apparent mutual understanding and comprehension between nurses and physicians, concepts that appear largely absent in the EOL decision making process. If the EOL decision making process is to be considered a moral practice, there is an obvious lack of inter-professional understanding about the moral weightiness of the process as a shared experience. Rather, moral weightiness in the literature and in my findings is experienced in silos, with physicians feeling high levels of responsibility in isolation, leading to emotional exhaustion, and nurses feeling alone in ownership of the care they are enacting and the potential suffering they are causing in not moving through the process in a timely manner (Gallagher et al., 2015; Laurent et al., 2017). Furthermore, the literature on nursing advocacy, according to Mohammed and Peter (2009) “frequently depicts physicians as autonomous moral agents who are often not burdened when deciding treatment options,” rather than recognizing them as individuals of a shared, collaborative team navigating “complex social landscapes and balancing multiple contextual factors” (p.300). The apparent blinders of each group in seeing the other contribute to collegial tensions and an inter-professional breakdown in communication. While role distinctions between AVOIDING FUTILITY 120 nurses and physicians are clearly identified by both respective groups regarding one another in the decision making process, it is not clear whether either nurses or physicians possess a robust understanding of the moral weight carried by their respective colleagues. Deference to families. Regarding the moral weight as being deferred to families, Cook and Rocker (2014) acknowledge that, “[the] decision making burden is postulate[d] as a salient source of strain among family members of patients who are dying in the ICU” (p. 2506). While family members’ voices were not represented in this study, it appears from my data that nurses and physicians may be cognizant of this reality and perceive the moral weight of decision making at EOL to be unfairly assigned to ill-equipped families. This leads nurses and physicians to become protective of families regarding the moral burden placed on them. While the literature recognizes nurses’ roles as supporting, advising, helping and guiding families, and facilitating the process of shared decision making, this concept of shielding families from the moral burden of decision making is not discussed by the reviewed literature (Calvin et al., 2007; Bach, Ploeg & Black, 2009; Coombs et al., 2012; Gallagher et al., 2015; Latour et al., 2009; McAndrew & Leske, 2015). For physicians, this protectiveness is considered by Laurent at al (2017) to be a part of the underlying mission experienced by physicians, which can “lead [them] to delay the decision to withdraw treatment” (p.2026). However, in my findings, the sense of unfair transference of the moral weight to families led not to delay by physicians, but to enactment of a paternalistic approach to care with the physician at times taking the decision out of the family’s hands completely. Patient as relieving. However, the most unique finding in considering moral weightiness as heavily influencing the EOL decision making process was the discussion by both nurses and physicians of experiencing relief from the moral burden through the patient’s physical health AVOIDING FUTILITY 121 status. The deterioration of the patient appeared in the data to assist in relieving all the other stakeholders of the moral burden experienced. Furthermore, it appears to be a method of communication used by nurses and physicians with families to ease the moral burden handed to families inherent in decision making. Similar language is seen in a finding by Brooks et al. (2017) as an example of exemplary physician communication: “Unfortunately, their loved one has made the decision for us or the disease has made the decision for us and we wish we could have done more” (p. 338). Finally, it may be seen as a not so obvious attempt by nurses and physicians at bringing about patient centeredness in a decision making process where, due to situational factors such as lack of consciousness, the patient may not be able to participate. Overall, the ambiguity surrounding who ultimately makes an EOL decision is not identified in my findings or in the literature reviewed, and this absence of clarity contributes to health professionals holding inaccurate perceptions of moral weightiness. This finding is deserving of further consideration by the literature. Family Receptiveness The finding of family receptiveness as one of the largest shaping influencers on the EOL decision making process was surprising based on the lack of emphasis on families as influencing forces in the preliminary literature review. However, it can and should be considered as an important influencing psychosocial factor, as families represent a considerable stakeholder present in the EOL decision making process in critical care. Culture. One explanation for the surprising nature of this finding may be the consideration of the context and location of this study. Several of the participants were located in one of the most culturally and ethnically diverse health care centres across Canada. A large Asian and South-Asian population is present in the geographical area studied, which may result AVOIDING FUTILITY 122 in interactions where “families and health care providers held different expectations about the care of the family member” who may be dying (Anderson, Tang, & Blue, 2007). In a review of EOL decision making in critical care in India, there were acknowledged societal barriers including the fact that “foregoing of life support towards the EOL, as a concept is unfamiliar,” and while it was acknowledged that the timing from initial EOL discussion with family to decision outcome was not recorded, “the data from this study seemed to indicate that decision making was not rushed, providing sufficient opportunity for a considered opinion by the family” (Mani et al., 2009, p. 1713; 1718). While not a Canadian study, it may provide a small amount of background knowledge and understanding of expectations of care held by immigrant families now present in Canadian society, particularly in the geographical area examined in this thesis. The critical nature of family receptiveness, and the frequently voiced tension regarding families who are perceived to be unaccepting, may be amplified in the context of a wide mosaic of beliefs and cultures represented by patient and family populations. Unfortunately, as Anderson, Tang and Blue (2007) highlight in their article regarding multiculturalism in healthcare with research also drawn from Western Canadian institutions: discourses of culture are embedded in the histories of both those who are constructed as Other and those whose cultures are taken as the norm, in the relations of power that accrue from histories, and in the background knowledge and understanding that each brings to an encounter (p. 297). The widespread effect of culture clashing, even between ethnic cultures and institutional cultures, may shed light onto the overwhelming sense from participants that the variability of “how the family is” (PN1) is a heavyweight influencer experienced by health professional as an AVOIDING FUTILITY 123 external, psychosocial, and subjective influence on the EOL decision making process in critical care. Role of Nurses. Another unique insight from my data was the impact of family receptiveness as shaping the role taken on by nurses in the study. The preliminary literature review suggested that the nurses’ engagement with family in initiating conversations around the EOL decision making process, as well as their alignment in their advocacy role, was primarily dictated by their relationship with the physician (Calvin, 2007; Flannery et al., 2016; Langley et al., 2014). While it was considered by Flannery et al.’s (2016) study to be best practice for the physician and the nurse to guide the family through EOL decision making, in practice nurse inclusion and involvement with families was “contingent on physician preference” (p. 99). However, in my findings, the role and degree of engagement with families was primarily shaped by the nurses’ judgment of the family’s receptiveness. This finding demonstrates a departure from current literature and demonstrates a new understanding of the tension nurses experience in their role in the EOL decision making process. Physicians’ and Families’ Relational Connection. While Laurent et al.’s (2017) study finds that for physicians, “the family was at the heart of the decision making process and is a genuine partner” (p. 2026), my findings suggest that physicians, at times, experience families as an interruption, annoyance, and a group that they need to convince of their perspective. While briefly acknowledging that family expectations can create ethical tensions leading to physician exhaustion, Laurent et al. (2017) depicts a major theme of her findings to be that of physicians viewing family interactions as valuable and a mutually desired relationship of balanced discussions with a “privileged partner” (p. 2026). My findings do not align the physician as identifying with the family, nor developing strong relational connection with the family. Rather, AVOIDING FUTILITY 124 the variability of family receptiveness appears to be critical in influencing the emotions, responsiveness, and engagement of the physician. In summary, this discussion demonstrates the highly subjective nature of the EOL decision making process and sheds light on new understandings about how emotions, psychosocial forces, and individual understandings of professional roles, based out of philosophic foundations and underlying missions and moral interests, influence the process. First, futility is recognized as a shared mission able to be identified by both nurses and physicians through multiple ways of knowing. Despite discrepancies in timing of this identification, it emerged as a driving force and foundational motivator for health professionals in engaging in their professional roles during the EOL decision making process, although it is recognized this may be influenced by current political and societal conversations regarding introduction of MAiD legislation in Canada in 2016. The ambiguity surrounding the process of decision making as a finding was reinforced by the literature, and yet the identification of three sub-phases occurring during the decision making process may indeed represent a new theoretical construct useful for garnering greater understanding of how the EOL decision making process occurs. The individual philosophy of approach, especially amongst physicians, is acknowledged in the literature; however, the heavyweight of its influence in my findings, combined with the lack of explanation of why this variability occurs, represents a newly identified gap in knowledge deserving of further explanation and greater focus in further research. Another key finding is the perspective of the EOL decision making process as a moral practice and the lack of understanding between health professionals regarding moral weightiness as a shared experience across their professional roles. Finally, family receptiveness as a significant psychosocial factor influencing the EOL decision making process in its own right, as seen in this discussion may be AVOIDING FUTILITY 125 amplified in the context of a wide mosaic of cultures and beliefs. Across all of these findings, the emotional experiences of health professionals emerged and consistently demonstrated their effect on the clinical EOL decision making process for both nurses and physicians. Limitations There are several limitations to this project. First, although there are “no fixed rules for sample size in qualitative research,” the sample size of nine participants is relatively small and fell below my desired goal of ten to sixteen participants (Polit & Beck, 2017, p. 497). However, the data yields thick, rich description, and achieves a balance between the representation of nurses with five participants and physicians with four participants. Regarding the data of the nurses, the themes were largely developed after the first four interviews; and the data obtained from the final nurse interview was consistent with the previously developed themes and only further assisted in the organization and clarification of the final themes in the analytic framework. Regarding the physicians, a similar process occurred after the first two interviews, with the final two physician interviews confirming previous findings. With the final interviews of both nurses and physicians confirming previous notions, as well as the richness of the data received in the final interviews and considering the need for management of the existent data, the decision was made to close recruitment. Given the focus of this study on the subjective nature of EOL decision making and the impact of personal beliefs and attitudes, there would be value in developing further research ensuring that health professionals with diverse backgrounds, perspectives, or contexts are represented in order to “invite enrichments of and challenges to emerging conceptualizations” (Polit & Beck, 2017, p. 493). All but one participant identified as Caucasian, limiting the ethnic diversity of the sample. Most participants also expressed their belief in the importance of AVOIDING FUTILITY 126 integrating palliative care into critical care contexts. This may have been what attracted them to participate in my study; however, it may not represent all perspectives held by nurses and physicians employed in these contexts. Furthermore, the sample is highly gendered with the majority of the physicians identifying as male, and the nurses all identifying as female. While gender was not a consideration identified in the literature review, and the sample results may be due to the historically engendered nature of these professions, it is difficult to distinguish whether the differences noted between professional groups were due to their professional nature or a gendered influence. Further research would be beneficial to ensure a more representative sample, as well as to consider gender as a psychosocial factor of influence on the experiences of nurses and physicians. Pre-existing relationships with participants may have influenced participation in the study. However, as I am not currently employed at any of the proposed sites of study, there is no power differential in relationships with participants at this time. Furthermore, while offering an incentive is useful to encourage participants, I recognize the ethical dangers that come with this. The coffee card incentive discussed above is not considered to be large or attractive enough to impact voluntariness. Finally, the novice nature of myself as researcher represents a limitation. I have limited experience in conducting formal interviews and lack the expertise that comes with time and exposure. Self-reflection, critical reflection with my thesis supervisor, and performing verbatim transcription of my interviews shortly after conduction allowed me to improve my interview skills throughout the research process as I reviewed my responses, prompting, and use of silences. AVOIDING FUTILITY 127 Chapter Summary The purpose of this project was to explore the individual experiences of critical care nurses and physicians, and their perception of emotions, roles, and psychosocial factors as influencers of the EOL decision making process. This chapter discussed the study findings in the context of the current literature organized around the themes of analysis: avoiding futility; ambiguous decision making process; and the three influential forces of individual philosophy of approach, moral weightiness, and family receptiveness. The depth of the findings allowed for a thorough discussion and consideration of the writer’s findings that represent a departure from what is currently known about this topic. The findings were also considered from cultural, political, and societal perspectives including families and participants as likely representing a diverse multicultural context, as well as recent historic events, such as the adoption of the MAiD legislation in Canada in 2016. Limitations to the study were also reviewed in this chapter. Chapter 6 will summarize the important messages obtained from the project and make recommendations related to nursing education, practice, leadership, policy, and research. AVOIDING FUTILITY 128 CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS The purpose of this project has been to gather a meaningful understanding of the experiences of both nurses and physicians in the EOL decision making process within a critical care context, and provide some insight into how emotions, psychosocial forces, and professional roles shape that process. This sixth and final chapter will summarize the study, present conclusions from the findings, and discuss implications and recommendations for nursing practice, nursing leadership, nursing policy, nursing research, and nursing education. Summary (including conclusions) In this qualitative study, five critical care nurses and four critical care physicians from three British Columbian hospitals, representing both community and urban centers, were interviewed about their experiences of the EOL decision making process in intensive care. All study participants shared previous experiences where they participated in this process. For both professional groups, although operating from distinctly different vantage points, a shared mission and desire to avoid futility was affirmed as being foundational to undertaking the process, as well as the climactic goal to be achieved. This desire heavily shaped initiation and engagement of what was presented as a largely ambiguous process lacking formalized structures, protocols, and timelines, problems that are exacerbated by the highly empirical, technological environment of critical care. Finally, three themes emerged through the nurses’ and physicians’ descriptions of elements that most influenced their variable experiences of the EOL decision making process: moral weightiness, family receptiveness, and the individual philosophy of approach. These findings emphasize and provide greater explanation to the wide amount of subjective variability experienced in this value-laden decision making process, and shed light on the competing AVOIDING FUTILITY 129 emotional, psychological, and social interests that are both protected and made vulnerable for ICU nurses and physicians in the EOL decision making process. The findings highlight the potential impact of further research to better understand this decision making process, as well as the potential impact of healthcare and government policies to support nurse and physicians in providing patient-centered decision making in EOL situations. Further research could be conducted to come up with a more comprehensive theoretical model of how EOL decision making occurs that could effectively be applied to this contextual environment of critical care. The following conclusions were drawn from this study: 1. The EOL decision making process in intensive care is fraught with ambiguity regarding both how the process occurs and who makes the decision. 2. Nurses and physicians demonstrated a deep emotional response related to concerns of prolongation or futility of care. 3. Personal beliefs, attitudes, values, and emotions were considered mostly to be nonimpactful and intentionally excluded from the decision making process by participants when directly asked. However, throughout the thematic analysis these elements arise to show considerable influence on the experience and judgements made in the decision making process. 4. The distinctive professional roles undertaken by nurses and physicians in the EOL decision making process are shaped by the underlying philosophic foundations, missions and moral interests of their respective professional grouping. 5. The intensive care context provides a paradoxical environment in which to study the EOL decision making process, revealing a unique tension in the transition from a curative to consideration of an EOL focus. AVOIDING FUTILITY 130 6. Nurses and physicians experience the degree of family receptiveness as a psychosocial factor, largely external to their control, as influential to the EOL decision making process. 7. The individual philosophy of approach to EOL decision making, especially that of physicians, was critical in influencing the nurses’ experience of the process. Each of these conclusions leads to the recommendations that are discussed in the following section. Recommendations While this study did garner the perspectives of both critical care nurses and physicians, because this thesis is for the completion of a Master of Science in Nursing, these recommendations, while considering physicians, will be primarily directed towards a professional nursing audience. The recommendations of this study are divided into the five domains: practice, policy, leadership, education, and research. The recommendations are based on the study findings and subsequent discussion, integrating the current health literature as seen in Chapters 4 and 5. Recommendations for Nursing Practice The findings of this study add new insights into the perspectives of nurses in their professional practice at the point-of-care. Overall, the data demonstrates a greater need for mutual understanding from both nurses and physicians, of the professional roles undertaken and greater communication of shared mission within the health professional team. Flannery et al. (2016) support that improved approaches to EOL decision making in practice are necessary to ensure “that it is optimal for all key stakeholders” (p. 102). Therefore, the practice recommendations are focused on improving the collaboration, collegiality, and self-care of AVOIDING FUTILITY 131 nurses and physicians in their endeavour to provide patient-centered care in the EOL decision making process. The first recommendation to ensure the positive experience of EOL decision making for nurses is to promote continued inclusion of nurses in the EOL decision making process. While multiple studies in the literature express concern about the lack of inclusion of nurses by physicians and the subsequent emotional and moral distress it causes nurses, my findings demonstrate strong and overall positive collaborative relationships between nurses and physicians, especially when attempting to achieve consensus regarding a decision making process. This recommendation will require nurses to continue advancing their role of advocacy, presence, and care for the patient and family through continued participation in family meetings and the strengthening of working relationships with their inter-professional team (Bach et al., 2009). The second recommendation is to provide resources accessible in the practice setting to facilitate self-care for nurses and physicians. Considering the deeply held concerns about preventing suffering and avoiding futility, as well as the subsequent emotional toll taken when engaging in the EOL decision making process as expressed by nurse and physician participants, awareness of access to counselling and other emotionally supportive resources would be beneficial. When asked about how emotions were managed, my findings demonstrated that participants often reported personal, private processing, or turning to families, friends or colleagues; accessing professionally available emotionally supports did not emerge in my data. Cook and Rocker (2014) advocate that these resources can be valuable not only for personal and professional development of coping strategies, but also for enhanced awareness of the “vicarious traumatization” resultant “from repeated empathic engagement with sadness and loss” (p. 2510). AVOIDING FUTILITY 132 Nurse participants described the safe, collegial work environments they experienced amongst their nurse colleagues and the support they received, from sharing tasks to the relief of patient assignments, as contributing to their self-care. Additionally, while continuity of care was acknowledged to be important to the nurses, the interchangeability of nurses was not experienced to have a major impact on influencing the EOL decision making process. Continued provision of modified work assignments as was suggested by nurse participants in my findings may be of benefit in light of the emotional and moral distress experienced at times by nurses during the EOL decision making process. Physicians, however, appeared to be much more isolated than nurses, and in difficult cases or events, the emotional burden did not appear to be shared amongst physician teams. As suggested by one physician participant in my study, there is likely untapped potential opportunity for physicians to be more collaborative and improve feedback provision within their professional grouping. The third recommendation for practice is the exploration of greater relationship, improved collegiality, and communication between the interdisciplinary team during the EOL decision making process. While nurses and physicians operate from differing vantage points based on their training and philosophic orientation, they also both highlighted similar shared concerns regarding prolongation and futility. Furthermore, both groups experienced the process and their subsequent engagement to be influenced by the emotions that they experienced. Provision of opportunities to debrief EOL situations, both formally and informally, with the interdisciplinary team could be useful in assisting in “building the emotion capabilities” of health professionals (Kozlowski et al., 2017, p. 10). Laurent et al. (2017) highlights that moments of informal sharing are considered facilitators of the best experiences during EOL decision making, as they allowed for a collective sense of belonging. Since it was highlighted in the findings that EOL care and the AVOIDING FUTILITY 133 emotional investment of engagement with families was not often felt to be valued by the critical care environment, these opportunities may promote a culture that values this aspect of necessary care in intensive care contexts. Kozlowski et al. (2017) also say that the expansion of emotional intelligence of health professionals is likely an effective step towards not only increasing “clinicians’ feelings of self-efficacy,” but also important in “increasing patient safety” (p. 10). Finally, the exploration of the shared experiences of the interdisciplinary team, and specifically the emotional dimensions, will assist in validating them as a “professional stance.” As discussed repeatedly, the decision making process at EOL in intensive care cannot be considered a merely objective process, but is influenced by numerous subjective factors including emotions and psychosocial elements. Caring and communicating in this way will allow emotions to be viewed as a resource for understanding, shedding light on the EOL decision making process, rather than a private, individually held source of tension between nurses and physicians. The fourth recommendation is the formation of a culture of continued learning around EOL decision making. This recommendation overlaps with several of the other suggestions made in these Chapter 6 recommendations. It is essential for policies, leadership, and education to support professional development for nurses and physicians. On a practice level, my recommendation is for the promotion of best practice and excellence in undertaking the EOL decision making process through the creation of special interest groups that critical care nurses or physicians may volunteer to join and appointment of clinical experts in engaging EOL care. Encouragement to pursue higher education may also be valuable, such as was done by PN3 who completed a Master’s program in which she spent time focusing on and considering EOL care approaches within the critical care context to develop her practice. Exploration of greater relationships between those working in critical care settings and experts working in palliative AVOIDING FUTILITY 134 care, or ethics consultation settings may need to be further explored and developed as a source of expertise or conflict resolution during this process that seems at times to be antithetical to the critical care environment. Recommendations for Nursing Policy The high level of ambiguity identified during the decision making process and confirmed by available literature as a critical finding, substantiates the recommendation for the crucial need for policy development and analysis regarding the EOL decision making process occurring in critical care environments. My recommendation in the area of nursing policy is for the development of standardized and clear organizational processes and structures with which to approach the EOL decision making process. Standardized tools and formalized policies may help reduce the overall sense of ambiguity in the process and guide future health professionals. It may also reduce frustration and tension between interdisciplinary groups regarding the timing differences identified in recognizing when an EOL decision making process may be valuable to a patient’s care. However, it is important to recognize that further research and investigation must be done in order to determine the best approach for designing, developing and implementing standardization whether through checklists, clinical decision support tools, regional, or provincial or national policy development. The finding of moral weightiness demonstrates that the burden of the EOL decision making process does find its home amongst all the major stakeholders, including the nurses, physicians, and families, even though it is often experienced in siloes of isolation. The adoption of a shared and collaborative decision making framework that is built through engagement and contribution of all relevant stakeholders may foster a greater shared experience of this moral burden, as well as a distinction of roles and responsibilities. It may also provide guidance in AVOIDING FUTILITY 135 helping to answer the unanswered question in my findings of who makes the decision. Furthermore, development of structures and policies such as this may reduce inconsistency in approach and, for nurses, may assist in their navigation of their advocacy role, reducing the tensions they are currently experiencing of having to align themselves either with physicians or families and feeling caught in the middle My second recommendation in the area of nursing policy is for the knowledge and expertise of current national and international groups promoting the merge between critical care and palliative care to be more effectively disseminated into practice and education settings. For example, Health Canada has recognized EOL care as a national priority, especially since the MAiD legislation came to pass in 2016. Through consultation with the Canada institute of Health Research, there is continued supported research and exploration of policies guiding best practice in EOL care. iPANEL is a British Columbia-based group funded by a research grant that engages in clinically-relevant research to improve EOL care for Canadians. While they have not performed research specific to critical care settings as yet, they have considered the acute care settings and advocate that the early uptake of a palliative approach that promotes comfortfocused care, and a positive approach to reduction of suffering should not be delayed until the end stages of an illness. In summary, nurses and physicians can advocate for the development of workplace policies that would better support the EOL decision making process and reduce tension between stakeholders. This is a unique time in Canadian history where EOL care is a committed national priority, and as such the case for an improved EOL decision making process and commitment to advance care planning must be advanced on a political level. AVOIDING FUTILITY 136 Recommendations for Nursing Leadership The recommendations for nursing leadership relate to the need for a growing awareness by nurse leaders, educators, and managers of the current research being conducted surrounding EOL decision making in intensive care settings. They must also gain awareness of the emotional impact on frontline staff with repeated engagement in the EOL decision making process. Leaders and nurse managers must consider adjusting the physical and organizational elements that may foster greater family receptiveness and may facilitate health professionals to generate a more positive experience of the EOL decision making process. Nurse leaders are integral in advocating for health framework, policy analysis, and facilitation of change management. This is a necessary role if there is to be uptake of a more formalized, collaborative decision making process. Finally, the moral weightiness of the EOL decision making process discussed in my findings is a reminder of the privilege it is to care for patients and families who may require this type of care, and it is not something to be taken lightly. Nurses were identified in my findings as well as in the literature as recognizing the need for initiation of the EOL decision making process much earlier than physicians. While confidence of their ability to accurately assess this need was questioned in the literature, my findings demonstrate that nurses are able to conduct assessments based on a wide variety of factual and subjective data including clinical assessments, objective signs and symptoms, previous experiences, and intuition. As such, they have the opportunity to adopt a leadership role in the establishment of early planning, discussion, and possible adoption of an EOL decision making process where appropriate (Brooks et al., 2017). AVOIDING FUTILITY 137 Recommendations for Nursing Education The domain of nursing education relates to education that is provided to nurses as well as that which is provided by nurses. My first recommendation is an educational emphasis for nurses on the key components of EOL care from recognition to enactment of the EOL decision making process through the withdrawal of care and bereavement care of the family. Nurses’ key role in this process as relational connectors, and their underlying mission to care not only for the patient but also for the family, are evident in the findings: they are shown to be key factors in influencing family receptiveness. Communication training, whether through scenarios, roleplaying, or hearing from patients and families who may have experienced an EOL decision making process, would require further investigation and research in order to determine the best approach. Nevertheless, interventions to improve the confidence and skills of critical care nurses to engage with families should be prioritized. This may also make nurses feel more supported by their critical care environment in their holistic role of not only being responsible for the technical knowledge required to work in an environment such as intensive care, but in promoting best practices of family and patient-centered care in the dying process. Provision of ongoing support of the development of nursing practice in EOL decision making within critical care is crucial to advancing best practices and excellence in nursing care. It is my recommendation that this education include the importance of “emotional competence” in clinical decision making for nurses, as well as striving to improve understanding surrounding the role of the critical care nurse in the EOL decision making process in navigating the “implications of combining humanistic care with technology” (Bach et al., 2009, p. 509). I would suggest that physicians may also benefit from this education. Robichaux (2006) asserts that expert clinical practice requires mastery not only of skillful clinical performance, but also AVOIDING FUTILITY 138 “mastery of the ethical dimension as well.” Presented earlier in this thesis was the finding that nurses have the ability to recognize themselves as moral agents, as well as facilitate humanization during the EOL decision making process despite the competing technical demands of caring for an acutely ill patient. The second recommendation is the broadened consideration to offer interdisciplinary education regarding EOL care in critical care. Despite an identified shared mission, differing vantage points, underlying missions, and professional responsibilities resulted in continued tensions between nurses and physicians, and these findings are supported by the current literature. Interdisciplinary education provides opportunity for consideration of the philosophic orientation and approach of other professions, as well as opportunities to broaden their perspective beyond their own specialized grouping (Bach et al., 2009). This may set the stage for a more collaborative team approach during EOL decision making and care provision. Interdisciplinary education may also include provision of access to ethical resources and improved approaches to working relationships within a multidisciplinary team to ensure that everyone is communicating and contributing toward a common goal. My finding of a shared mission of avoiding futility is a common desire of nurses and physicians to pursue that which is in the best interest of the patient (Bach et al., 2009). Regarding the evident tensions between nurses and physicians, especially regarding the physician’s individual philosophy of approach, and tensions between health professionals and families who may be deemed as unaccepting, interdisciplinary training in negotiation and mediation may be valuable to ensure more timely dispute resolution. While not all tensions may be able to be completely mitigated, due to foundational differences in professional roles and underlying missions and mandates, and the continued tension between providing comfort care vs. AVOIDING FUTILITY 139 efforts to prolong life in a curative intensive care context, there remains a professional responsibility on the behalf of health professionals to develop the skills necessary to navigate conflict whether that be through “effective mediation resources [or] policies” (Palda et al., 2005, p. 212). Finally, when considering education that may be provided by health professionals, there is evidence in my findings for the need for ongoing education for patients and families. Nurses express concerns regarding the understanding and competency of families to grasp the realities necessary for performing adequate patient-centered substitute decision making. Additionally, nurses express how families are often overwhelmed by the demanding contextual environment of the intensive care unit, exacerbated by societal expectations of the medical system to provide life-saving care, sometimes in spite of all costs. Furthermore, a lack of advance care planning was noted by physicians in this study as a barrier, contributing to more emotionally intensive and difficult discussions with families during EOL decision making. While effective educational strategies would need to be researched for their effectiveness prior to implementation, it is clear that health professionals recognize the need for greater public awareness regarding the nature and importance of advance care planning and EOL discussions in order to improve receptiveness of families. Recommendations for Nursing Research Several significant areas for further research and exploration have emerged in this study. The first recommendation is for further research to explore the factors that facilitate and hinder the experiences of critical care nurses and physicians and their perceived effectiveness during the EOL decision making process (Bach et al., 2009). A noticeable limitation of this study is the lack of patient and family perspectives, despite family receptiveness emerging as a key influencing AVOIDING FUTILITY 140 factor identified by nurses and physicians in my findings. Therefore, the second recommendation is further exploration of patient and family perspectives as relevant stakeholders in the EOL decision making process, as this would be vital in furthering understanding as well as for policy development in critical care contexts. The third recommendation would be further exploration of my study with a larger sample size and greater variability in the geographic location, level of acuity of the intensive care units, as well as types of intensive care units, in order to expand upon the findings of my study. The fourth recommendation for further research is the exploration of the EOL decision making process as a theoretical concept, and potential development of a theoretical model offering greater understanding on the process itself as it occurs in the critical care context. This would be useful in removing the ambiguity and providing direction to inform policy. Critical to this policy development would be a recognizable inclusion of the many identified subjective forces influencing the decision making process as identified by my findings. This recommendation is supported by Kozlowski et al. (2017), who state that “theoretical models of clinical decision making could become more nuanced and externally valid if they incorporated emotional aspects more fully” (p. 10). Finally, my fifth recommendation is for further evaluation of individual physician factors as facilitators or barriers to EOL decision making, care, and communication, as experienced by the nurses in my findings, to bring improvements to the quality of EOL decision making experienced by relevant stakeholders (Palda et al., 2005). While moral distress and recognition of emotion by nurses occurred frequently in my findings, emotional descriptions and admissions of moral distress were more vague from physicians, which was confirmed in the literature. Further understanding of the emotions and moral distress experienced by physicians during the EOL decision making process may assist in developing more effective interdisciplinary interventions targeting potential nurse-physician collaborative AVOIDING FUTILITY 141 tensions. McAndrew and Leske (2015) support the relevance of this physician focused research for nursing: “The physician perspective is important and must be placed in the context of nurses’ views to fully understand professional communication and collaboration as it occurs in practice” (p. 370). Conclusions My project explored the experiences of nurses and physicians during the EOL decision making process. It investigated how they experienced emotions, psychosocial factors, and professional roles as specifically influencing the process of EOL decision making. The results demonstrate that despite differing underlying professional moral interests and mandates, a shared mission of avoiding futility exists between nurses and physicians as a foundational and climactic outcome of the decision making process. Furthermore, the ambiguity of the process contributes to collaborative tensions, and the process was noticeably influenced by the subjective forces of individual philosophies of approach, moral weightiness, and family receptiveness. Emotions were revealed across the themes as arising from the ambiguities and collegial tensions, but also as influencing nurse and physician engagement in the process at certain phases. Psychosocial factors such as family receptiveness emerged as a heavyweight influencer – a new finding not previously explored in the literature review; while other psychosocial factors reviewed in the literature such as bed availability and levels of experience, were not validated as relevant. Overall, despite ongoing tensions, a large degree of positive collaboration during the EOL decision making process was expressed by the nurses and physicians interviewed. Discussion of the study findings included consideration of the political, cultural, and social influences on the EOL decision making process, including recent Canadian historical events such as the legalization of MAiD in 2016, and consideration of the extensive multicultural population AVOIDING FUTILITY 142 present in the geographical area of study. Recommendations for nursing practice, policy, leadership, education, and research centered around providing greater structure and support for health care professionals during the EOL decision making process, while recognizing the need for the inclusion of the patient and family perspective. Nurses and physicians have vital roles within the collaborative team in advancing the EOL decision making process in their specific context of critical care, and both voiced a shared mission to uphold the dignity of the patient by avoiding situations of futility. Cook and Rocker (2014) conclude that “ensuring death with dignity in the ICU epitomizes the art of medicine and reflects the heart of medicine. It demands the best of us” (p. 2513). Ultimately, it is my hope that this entire project as well as these nursing recommendations will promote a high level of quality care throughout the EOL decision making process. AVOIDING FUTILITY 143 References Anderson, J. M., Tang, S., & Blue, C. (2007). Health care reform and the paradox of efficiency: “Writing in” culture. International Journal of Health Services, 37(2), 291-320. Bach, V., Ploeg, J., & Black, M. (2009). Nursing roles in end-of-life decision making in critical care settings. 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Current Opinion in Anesthesiology, 24(2), 160-165. doi:10.1097/ACO.0b013e328343c5af AVOIDING FUTILITY 149 Appendix A: Search Strategy CINAHL SEARCH Critical care nurses and physicians (1) A Emotion/Psyc N hosocial (2) D A N D Decision making (3) A N D EOL (4) “intensive care” n3 nurs* OR “intensive care” n3 physician* OR “intensive care” n3 intensivist* OR A Emotion* OR N Psychosocial D N=292,480 A N D “Decision making” OR “Critical think*” OR “clinical judgement” OR “uncertainty” OR collaborat* OR collegial* OR interprofession* OR teamwork OR “NursePhysician Relations” A N D “EOL” OR “end-oflife” OR “comfort care” OR “comfort measure*” OR “withdraw* care” OR “withhold* care” “critical care” n3 nurs* OR “critical care” n3 physician* OR “critical care” n3 intensivist* OR ICU n3 physician* OR ICU n3 nurs* OR ICU n3 intensivist* n=126,513 OR “palliat*” OR dying OR terminal* N=54,445 n=27, 221 CINAHL HEADINGS (MH “Critical Care Nursing”) OR (MH “Critical Care”) n=34,559 (MH “Emotional Intelligence”) OR (MH “Emotions”) (MH “Decision making, Clinical”) OR (MH “Decision making, Ethical”) OR (MH “Decision making”) OR (MH “Critical Thinking”) OR (MH “Diagnostic Reasoning”) n=69570 n=23, 292 (MH “Terminal Care”) OR (MH “Palliative Care”) OR (MH “Euthanasia, Passive”) OR (MH “Resuscitation Orders”) OR (MH “Health Transition”) OR (MH “Terminal Care, Ethical Issues”) OR (MH “Life Support, Ethical Issues”) OR (MH “Witholding Treatment”) n=41,723 Combined with OR = n=42, 9995 Combined with OR n= 297, 429 Combined with OR = n=190, 613 Combined with OR = n=60, 727 Combined # of articles = 150 Limiters: (scholarly articles = 142), (language = English = 137), (years 2005-2017)= 120 Initial Exclusion Criteria (title and abstract) (pediatric, neonatal, oncology, introduction of new team members, organ donation, non-ICU settings)n = 40 AVOIDING FUTILITY 150 MEDLINE SEARCH Critical care nurses and physicians (1) A N D Emotions and Psychosocial Factors (2) A N D Decision making (3) A N D EOL (4) “intensive care” n3 nurs* OR “intensive care” n3 physician* OR “intensive care” n3 intensivist* OR A N D Emotion* OR Psychosocial A N D “Decision making” OR “Critical think*” OR “clinical judgement” OR “uncertainty” OR collaborat* OR collegial* OR interprofession* OR teamwork OR “Nurse-Physician Relations” A N D “EOL” OR “end-oflife” OR “comfort care” OR “comfort measure*” OR “withdraw* care” OR “withhold* care” N=257,974 “critical care” n3 nurs* OR “critical care” n3 physician* OR “critical care” n3 intensivist* OR ICU n3 physician* OR ICU n3 nurs* OR ICU n3 intensivist* n=12,217 OR “palliat*” OR dying OR terminal* n=102,281 n=279,597 MeSH HEADINGS (MH “Critical Care Nursing”) OR (MH “Critical Care”) n=46,890 A N D (MH “Attitude”) OR (MH “Emotions”) OR (MH “Psychology, Social”) OR (MH “Motivation”) OR (MH “Personality”) A N D n=185, 537 (MH “Decision making, Clinical”) OR (MH “Decision making, Ethical”) OR (MH “Decision making”) OR (MH “Critical Thinking”) OR (MH “Diagnostic Reasoning”) n=81,120 A N D (MH “Terminal Care”) OR (MH “Palliative Care”) OR (MH “Euthanasia, Passive”) OR (MH “Resuscitation Orders”) OR (MH “Health Transition”) OR (MH “Terminal Care, Ethical Issues”) OR (MH “Life Support, Ethical Issues”) OR (MH “Witholding Treatment”) n=69,503 Combined with OR = n=53,783 Combined with OR n=377,390 Combined with OR = n=355,117 Combined with OR = n=117,698 Combined # of articles when terms searched with AND = n=55 Limiters: (scholarly articles, = 14), years 2002- 2017 = 14 Initial Exclusion Criteria (title and abstract) (pediatric, oncology, introduction of new team members, organ donation, family/surrogate perspective, chronic disease)n = 6 AVOIDING FUTILITY 151 PSYC INFO Critical care nurses and physicians (1) AND Decision making (3) AND EOL (4) (nurs* OR physician*) AND (“intensive care” OR “critical care”) AND “Decision making” OR “Critical think*” OR “clinical judgement” OR “uncertainty” OR collaborat* OR collegial* OR interprofessional* AND “end-of-life” OR “palliat*” OR dying OR terminal* n=5,542 n=24,044 n=113,912 THESAURUS MM “Clinical Judgment (Not Diagnosis)” OR MM “Critical Thinking” OR MM “Clinical Practice” OR MM “Collaboration” OR MM “Uncertainty” MM “Palliative Care” OR DE “Terminally Ill Patients” n=12, 637 n= 28,074 Combined with OR = n=129,949 Combined with OR = n=24, 806 Combined # of articles when 3 terms searched with AND = n=81 Limiters: (language = English = 79) (years 2008-2017) = 66 Initial Exclusion Criteria (title and abstract) (pediatric, oncology, introduction of new team members, organ donation, family perspective, chronic disease) n = 24 Evidence-Based Medicine Reviews Critical care nurses and physicians (1) AN D Decision making (2) AND EOL (3) (nurs* OR physician*) AND (critical care OR intensive care or ICU) OR intensivist AN D Decision making OR Critical Thinking OR Clinical Judgement AND EOL or End-of-life OR withdraw care OR 151ithhold care OR withdraw life support OR 151ithhold life support OR palliat* n=3,424 n=11,055 n=6295 Combined # of articles when 3 terms searched with AND = n=46 Exclusion Criteria (relevant articles extracted): 4 AVOIDING FUTILITY 152 Identification Appendix B: PRISMA Diagram Records identified through database searching (CINAHL, Medline, PsycInfo, EBMR, JBI) Additional records identified through other sources (n = 5) (n = 332) Included Eligibility Screening Records after duplicates removed (n = 291) Records screened (n = 291) Records excluded (n = 206) Full-text articles assessed for eligibility (n = 85) Full-text articles excluded, with reasons (n = 60) Studies included in Literature Review (n = 25) AVOIDING FUTILITY 153 Appendix C: Table of Most Relevant Articles for Thesis Author/Citation: Laurent, A., Bonnet, M., Capellier, G., Aslanian, P., & Hebert, P. (2017). Emotional impact of end-of-life decisions on professional relationships in the ICU: An obstacle to collegiality? Critical Care Medicine, 45(12), 2023-2030. doi:10.1097/CCM.0000000000002710 Research Method: Qualitative - interpretive phenomenological analysis Sample: 2 independent ICU's in Montreal - 10 physicians and 10 nurses Research Aim: To identify nurses’ and doctors’ experiences of end-of-life decisions and to better understand how emotional dimensions’ influence end-of-life decision making in ICU. Relevant Findings: Families and patients introduce a strong emotional dimension into the end-of-life decision making process, resulting in new challenges to the decision making process emerging. Collegial decisions are made difficult because healthcare professionals undertake different missions and defend moral interests with conflicting ideals. Professionals appear to have a poor understanding of the emotional dimension of decision making hindering collegiality. Author/Citation: McAndrew, N. S., & Leske, J. S. (2015). A balancing act: Experiences of nurses and physicians when making end-of-life decisions in intensive care units. Clinical Nursing Research, 24(4), 357-374. doi:10.1177/1054773814533791 Research Method: Grounded theory analysis - purposive sample Sample: 7 nurses and 4 physicians Research Aim: To describe end-of-life decision making experiences as understood by critical care nurses and physicians in intensive care units (ICUs). Relevant Findings: The end-of-life decision making process emerged as a balancing act of emotional responsiveness, professional roles and responsibilities and intentional communication and collaboration. The consequence of imbalance was moral distress; however, achieving balance produced positive experiences. Ongoing support is needed for nurses and physicians regarding EOL decision making Author/Citation: Brooks, L. A., Manias, E., & Nicholson, P. (2017). Communication and decision making about end-of-life care in the intensive care unit. American Journal of Critical Care, 26(4), 336-341. Research Method: Interpretative, qualitative inquiry Sample: 24-bed intensive care unit in Australia - 17 nurses, 11 physicians interviewed Research Aim: To explore the experiences and perspectives of nurses and physicians when initiating end-of-life care in the intensive care unit. Relevant Findings: Difficulties emerged surrounding the timing of discussions of EOL care, as well as the lack of competency and experience of having difficult conversations with patients and families. Clear organizational process that support nurses and physicians are needed to optimize outcomes. AVOIDING FUTILITY 154 Author/Citation: Flannery, L., Ramjan, L. M., & Peters, K. (2016). End-of-life decisions in the intensive care unit (ICU)–exploring the experiences of ICU nurses and doctors–a critical literature review. Australian Critical Care, 29(2), 97-103. doi:10.1016/j.aucc.2015.07.004 Research Method: Critical Literature Review Sample: Peer-reviewed qualitative and quantitative studies, January 2006-March 2014. Excluded family/relative perspectives and pediatrics. 12 papers reviewed. Research Aim: To critically review the literature related to end=of-life decision making among ICU doctors and nurses Relevant Findings: There is a clear need for improved approaches to EOL decision making that are optimal for all key stakeholders including improving communication. Key components of this involve staff education and implementation of a shared-decision making framework, especially as nursing’s role in the decision making remains unclear. Author/Citation: Forte, D. N., Vincent, J. L., Velasco, I. T., & Park, M. (2012). Association between education in EOL care and variability in EOL practice: a survey of ICU physicians. Intensive Care Medicine, 38(3), 404-412. Research Method: Questionnaire Sample: 107/188 physicians from 11 ICU's in Brazil returned questionnaire (response rate 89%). Research Aim: This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU Relevant Findings: The characteristics regarding physician education in end-of-life are associated with variability in end-of-life and this may contribute to more refined understanding of the complex process of end-of-life care in ICU. It was found that actual practice may differ from what physicians believe is best for the patient, and legal concerns were found to be the leading cause for this. Author/Citation: Gallagher, A., Bousso, R. S., McCarthy, J., Kohlen, H., Andrews, T., Paganini, M. C., . . . Padilha, K. G. (2015). Negotiated reorienting: A grounded theory of nurses’ end-of-life decision making in the intensive care unit. International Journal of Nursing Studies, 52(4), 794-803. doi:10.1016/j.ijnurstu.2014.12.003 Research Method: Grounded theory - semi structured interviews Sample: Experienced ICU nurses from 5 countries: Brazil, England, Germany, Ireland and Palestine - 51 nurses total. Research Aim: To understand nurses’ end-of-life decision making practices in ICUs in different cultural contexts Relevant Findings: The shift in goals of care creates new fields of activities in intensive care. Nurses have an active role in facilitating the shift from narrower to broader and towards more holistic practices and this occurs through relational practice. While nurses were found to not make the ‘ultimate’ EOL decisions, they engage in two core practices: consensus seeking and emotional holding AVOIDING FUTILITY 155 Author/Citation: Latour, J. M., Fulbrook, P., & Albarran, J. W. (2009). EfCCNa survey: European intensive care nurses’ attitudes and beliefs towards end‐of‐life care. Nursing in Critical Care, 14(3), 110-121. Research Method: survey with structured attitudinal questionnaire Sample: Convenience sample (European critical care nursing conference - 164/419 questionnaire returned (Adult ICU, PICU, NICU, accident and emergency, coronary care, recovery room represented). Research Aim: To understand the experiences and attitudes of European critical care nurses with respect to EOL care in intensive care Relevant Findings: Differences in attitudes occur and are affected by various factors such as ethical beliefs and religious views that influence the decision making process. Involvement in ethical decision making positively influenced job satisfaction in majority of nurses and most nurses felt that quality of life was an important or very important consideration when considering withdrawal or withholding of life support. Author/Citation: Westphal, D. M., & McKee, S. A. (2009). End-of-Life decision making in the intensive care unit: Physician and nurse perspectives. American Journal of Medical Quality, 24(3), 222-228. doi:10.1177/1062860608330825 Research Method: Survey Sample: Nonprofit 400-bed community Hospital (south Florida) - critical care nurses and physicians who care for patients in either SICU or MICU (hospital does not have intensivists) - 53 (12% response rate) physicians and 43 nurses (67% response rate). Research Aim: To determine nurse and physician perceptions and actions regarding end-oflife decision making in the critical care units of a community hospital whose patient population is predominantly medically complex and elderly. Relevant Findings: Physicians were found to be more likely to discuss DNR orders only when prognosis was poor and family dynamics and medical/legal concerns significantly affected decisions to obtain/write a DNR order for a critically ill patient. In general, nurses were more likely to ask if there was a living will and to read it, however most physicians despite a lower reading rate the majority of physicians considered the wishes of the living will when making recommendations to family. Author/Citation: Coombs, M. A., Addington-Hall, J., & Long-Sutehall, T. (2012). Challenges in transition from intervention to EOL care in intensive care: A qualitative study. International Journal of Nursing Studies, 49(5), 519-527. doi:10.1016/j.ijnurstu.2011.10.019 Research Method: Single semi-structured interviews - qualitative methods of inquiry Sample: 2 ICU's in large university-affiliated hospital in England 13 medical staff and 13 nurses associated with 17 decedents who underwent treatment withdrawal Research Aim: To identify the challenges for health care professionals when moving from a recovery trajectory to an EOL trajectory in intensive care. Relevant Findings: Three stages identified in describing the EOL trajectory in intensive care: admission with hope of recovery, transition from intervention to end-of-life care, and a controlled death. Transition stage most problematic and ambiguous with potential for medical AVOIDING FUTILITY 156 team and physician-nurse conflict. There is a need to focus on the transition rather than endof-life care itself so that effective and timely decision making occurs. Author/Citation: Bach, V., Ploeg, J., & Black, M. (2009). Nursing roles in end-of-life decision making in critical care settings. Western Journal of Nursing Research, 31(4), 496512. doi:10.1177/0193945908331178 Research Method: Grounded theory Sample: Fourteen nurses from a ICU and cardio-respiratory care unit in Ontario, Canada Research Aim: To bring to light the role of critical care nurses in decision making at the EOL. Relevant Findings: The role of nurses was primarily characterized as “supporting the journey” and demonstrate the value for nursing care at EOL in critical care settings as an active, knowledgeable and caring force. Recognized educational need for families and patients in order for nurses to enable them to come to terms and help let go of loved one. Author/Citation: Gélinas, C., Fillion, L., Robitaille, M.-A., & Truchon, M. (2012). Stressors experienced by nurses providing end-of-life palliative care in the intensive care unit. Canadian Journal of Nursing Research, 44(1), 19-39. Research Method: Descriptive qualitative design Sample: 42 nurses from 5 ICUs in Quebec, Canada participated in 10 focus groups Research Aim: To describe stressors experienced by nurses in providing end-of-life palliative care in intensive care units Relevant Findings: The major stressors were considered to be categorized as organizational, profession and emotional. The major organizational stressors were lack of a palliative care approach, interprofessional difficulty, lack of continuity in life-support and treatment plans, and conflicting demands. Professional stressors included lack of EOL/PC competencies and difficulty communicating with families and collaborating with the medical team. Emotional stressors were described as value conflicts, lack of emotional support, and dealing with patient and family suffering. Author/Citation: Calvin, A. O., Kite-Powell, D. M., & Hickey, J. V. (2007). The neuroscience ICU nurse's perceptions about end-of-life care. Journal of Neuroscience Nursing, 39(3), 143-150. Research Method: Qualitative descriptive study Sample: 12 neuroscience ICU Registered Nurses Research Aim: To describe neuroscience intensive care unit nurses' perceptions regarding their roles and responsibilities in the decision making process during the change in intensity of care and end-of-life care for patients Relevant Findings: The nurse caring for a patient at the EOL provides guidance from the middle or “hub” of the communication process between family members and physicians. The nurses in this study describe an array of feelings associated with this role, including loneliness, challenge and a sense of reward. Lack of model of interdisciplinary practice contributes to frustrations and ambiguity of nurse’s role. AVOIDING FUTILITY 157 Author/Citation: Espinosa, L., Young, A., Symes, L., Haile, B., & Walsh, T. (2010). ICU nurses' experiences in providing terminal care. Critical Care Nursing Quarterly, 33(3), 273281. doi:10.1097/CNQ.0b013e3181d91424 Research Method: phenomenological study Sample: 18 registered nurses in ICU (individual interviews and focus groups) Research Aim: Explores the experience of intensive care nurses providing care at EOL in the ICU Relevant Findings: Nurses indicated that better education staff support and communication would improve care as currently experienced significant personal and professional struggle. Several barriers to optimal care were identified including 1) lack of involvement in the plan of care, (2) differences between the medical and nursing practice models, (3) disagreement among physicians and other healthcare team members, (4) perception of futile care and unnecessary suffering, (5) unrealistic expectations of the family, and (6) lack of experience and education of the nurse. As well, internal conflict between feelings and desires was identified by nurses in this transition as well as the need for nurses to have coping strategies. Author/Citation: Espinosa, L., Young, A., & Walsh, T. (2008). Barriers to intensive care unit nurses providing terminal care: An integrated literature review. Critical Care Nursing Quarterly, 31(1), 83-93. Research Method: Integrated literature review Sample: 13 quantitative experimental studies and 9 qualitative studies Research Aim: Integrated literature review on the provision of terminal care - identifying specific barriers Relevant Findings: Several common barriers amongst the studies were revealed regarding delivering good terminal care. The transition in care is often not smooth in intensive care and nurses and specific barriers included: lack of involvement in the process, disagreement among physicians and other healthcare team members, unrealistic expectations of families, nurses difficulty coping, lack of experience, education and inappropriate staffing level or environmental circumstances. Author/Citation: Hov, R., Hedelin, B., & Athlin, E. (2007). Being an intensive care nurse related to questions of withholding or withdrawing curative treatment. Journal of Clinical Nursing, 16(1), 203-211. doi:10.1111/j.1365-2702.2006.01427.x Research Method: Qualitative – interpretive phenomenology Sample: Adult ICU in Norway – 14 nurses. Research Aim: To acquire deeper understanding of what it is to be an intensive care nurse related to questions of withholding or withdrawing curative treatment Relevant Findings: Four main themes were found that captured nurses experiences: loneliness in responsibility, alternation between optimism and pessimism, uncertainty – a constant shadow and professional pride despite little formal influence. The essence of being an intensive care nurse in the care of patients when questions were raised concerning curative treatment or not, was understood as being a critical interpreter and a dedicated helper. Demonstrated that nurses experience work as rewarding and burdensome while underpinning the need for physicians and nurse leaders to recognize the burden carried by nurses. AVOIDING FUTILITY 158 Author/Citation: Jox, R. J., Schaider, A., Marckmann, G., & Borasio, G. D. (2012). Medical futility at the end of life: The perspectives of intensive care and palliative care clinicians. Journal of Medical Ethics, 38(9), 540-545. doi:10.1136/medethics-2011-100479 Research Method: Reviewed ethics consultations and conducted semi-structured interviews. Qualitative Content Analysis Sample: 1 physician and 11 nurses from adult intensive and palliative care units tertiary hospital - Germany Research Aim: To elucidate how clinicians define futility when they perceive life-sustaining treatment to be futile, how they communicate, and why LST is sometimes continued Relevant Findings: Participants associated most frequently futility with lack of attainable goals of care and many also regarded treatment to be futile if benefit conferred to the patient by goal of car was surmounted by the burden with all associated risks, harms and expenses. This study validated that while futility is a practically relevant problem, clinicians have difficulties defining and that provision of futile treatment occurs because of their own emotional problems as well as institutional barriers. Author/Citation: McMillen, R. E. (2008). End of life decisions: Nurses perceptions, feelings and experiences. Intensive & Critical Care Nursing, 24(4), 251-259. Research Method: Constructivist grounded theory - purposive sample - semi structured interviews. Sample: 8 ICU nurses. Research Aim: To explore experiences of ICU nurses caring for patients who had their treatment withdraw and answer: what role do nurses play? How does this affect them? Relevant Findings: The role of the nurses as patient advocate and family support but lack of authority in ultimate decision, as well as revealed perceptions about the need to get the timing right regarding withdrawal of care and the emotional labor that occurs for nurses. Nurses have a valid contribution and input into the end-of-life decision making process. Author/Citation: Poulton, B., Ridley, S., Mackenzie‐Ross, R., & Rizvi, S. (2005). Variation in end‐of‐life decision making between critical care consultants. Anaesthesia, 60(11), 11011105. Research Method: Reviewed medical records, personality typing of consultants (72-question online MBTI assessment) Sample: 9 consultants from a Critical Care complex unit – 8 ICU beds and 10 Highdependency Unit Beds Research Aim: To measure the frequency of withdrawal decisions between ICU consultants and explore possible causes of variation Relevant Findings: Number of actual EOL decisions significantly different, with 5/9 making proportionally more than others. Variation was considered to be seasonally pattern – when critical care complex is recognized to be busy. All consultants who made more EOL decisions had scores towards the judging end of the judging/perceiving domain. Important to highlight subjective nature of decision making regarding unexplained variation amongst physicians. AVOIDING FUTILITY 159 Author/Citation: Robichaux, C. M., & Clark, A. P. (2006). Practice of expert critical care nurses in situations of prognostic conflict at the end of life. American Journal of Critical Care, 15(5), 480-491. Research Method: Qualitative design – narrative analysis Sample: 21 expert critical care nurses from 7 facilities in Southwestern United States Research Aim: To explore practice of expert critical care nurses in end of life conflicts and describe actions taken when nurses thought continued aggressive medical interventions not warranted Relevant Findings: Three narrative plots arose: protecting or speaking for the patient, presenting a realistic picture, and nurses experiencing frustration and resignation. Narratives of protecting or speaking for the patient concerned preventing further technological intrusion and thus permitting a dignified death. Presenting a realistic picture involved helping patients’ family members reframe the members’ sense of the potential for recovery. Inability to affect a patient’s situation was expressed in narratives of frustration and resignation. The expert nurses demonstrated the ability and willingness to actively protect and advocate for their vulnerable patients even in situations in which the nurses’ actions did not influence the outcomes. Author/Citation: Sprung, C. L., Woodcock, T., Sjokvist, P., Ricou, B., Bulow, H. H., Lippert, A., . . . Lippert, A. (2008). Reasons, considerations, difficulties and documentation of end-oflife decisions in European intensive care units: The ETHICUS Study. Intensive Care Medicine, 34(2), 271-277. Research Method: Prospective Observational Study Sample: 37 ICUs in 17 European Countries - reviewing life decisions of 3,086 included patients Research Aim: To evaluate physicians' reasoning, considerations and possible difficulties in EOL Decision making for patient in European Intensive care units Relevant Findings: Primary reason for EOL decision given by physicians is consideration of patient’s medical condition, followed by unresponsive to therapy. Primary consideration of why EOL decision making occurred was good medical practice, followed by the patient’s best interests. No difficulty in making decision was reported in 93% of cases. Author/Citation: Gutierrez, K. M. (2013). Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end‐of‐life in an intensive care unit. Nursing Inquiry, 20(3), 232-244. doi:10.1111/j.1440-1800.2012.00604.x Research Method: Descriptive study Sample: Purposive sampling - seven critical care attending’s, 3 critical care fellows, 20 family members Research Aim: Focused on exploring critical care physician’s communication of negative prognoses to families and identifying timing influences Relevant Findings: The timing of prognostic communication driven on physician perception of certainty based on accumulation of empirical data and perceived need for decision making, rather than family’s needs. AVOIDING FUTILITY 160 Author/Citation: Jensen, H. I., Ammentorp, J., Johannessen, H., & Ørding, H. (2013). Challenges in end-of-life decisions in the intensive care unit: An ethical perspective. Journal of Bioethical Inquiry, 10(1), 93-101. doi:10.1007/s11673-012-9416-5 Research Method: Qualitative interviews and focus groups Sample: 2 Danish hospital ICU’s (8 and 11 beds). Two monoprofessional focus groups including total of 11 nurses and 10 intensivists. Research Aim: To examine challenges of Danish nurses, intensivists and primary physicians experience with EOL decisions in ICU and see how these challenges affect the decision making process Relevant Findings: Main challenges identified were associated with interdisciplinary collaboration and future perspectives of the patient. Ethical issues were also connected with these challenges. Challenges included how and when to identify patient’s wishes, suffering caused by treatment and different assessments of treatment potential. Author/Citation: Langley, G., Schmollgruber, S., Fulbrook, P., Albarran, J. W., & Latour, J. M. (2014). South African critical care nurses' views on end‐of‐life decision‐making and practices. Nursing in Critical Care, 19(1), 9-17. doi:10.1111/nicc.12026 Research Method: Cross-sectional survey Sample: 100 South African Critical Care Nurses Research Aim: To investigate South African critical care nurses' experiences and perceptions of EOL care Relevant Findings: For nurses, being involved in EOL decision making positively influenced job satisfaction; however, despite direct involvement in care, they were largely not involved in decision making process. Nurses were committed in their mission to have family involvement in EOL decisions, but less than two-thirds reported this as routine practice. Author/Citation: Mohammed, S., & Peter, E. (2009). Rituals, death and the moral practice of medical futility. Nursing Ethics, 16(3), 292-302. doi:10.1177/0969733009102691 Research Method: Ethical analysis Sample: n/a Research Aim: To examine CPR and life-sustaining intensive care measures as moral practices Relevant Findings: Medical futility may be both physiologic and qualitative in nature and the provision of futile or unnecessary treatment may cause moral distress to health care providers. Nurses may be more burdened by this than physicians. Life-sustaining interventions benefit nurses through moderating the horrors of death and removing responsibility of death away from health care providers. Author/Citation: Kozlowski, D., Hutchinson, M., Hurley, J., Rowley, J., & Sutherland, J. (2017). The role of emotion in clinical decision making: An integrative literature review. BMC Medical Education, 17(1), 255. Research Method: Integrative literature review Sample: 23 papers reviewed AVOIDING FUTILITY 161 Research Aim: To identify and synthesis empirical evidence for role of emotion in clinical decision making Relevant Findings: Clinicians experienced emotions as affecting clinical decision making although acknowledgement is far from universal and occurs in absence of theoretical framework. Educational preparation may not reflect the importance of emotional competence to effective clinical decision making. Emotion can be a response to contextual pressures, or other stakeholders. At times there is intentional exclusion of emotion participants from clinical decision making. AVOIDING FUTILITY 162 Appendix D: REB Approval AVOIDING FUTILITY 163 Appendix E: Letter of Information LETTER OF INFORMATION My name is Melissa De Boer, and I am a graduate student in the Master of Science in Nursing (MSN) program at Trinity Western University (TWU), Langley, British Columbia. In conjunction with my graduate studies, I am conducting a research project that is explore the experiences surrounding the EOL decision making process for intensive care nurses and physicians. Specifically, I am interested in looking at individual different experiences of the shaping forces affecting clinical decision making of this kind including emotion, psychosocial dimensions and professional roles. My research work is being carried out under the supervision of Dr. Rick Sawatzky, Professor at Trinity Western University School of Nursing. This project is pending approval by TWU’s Research Ethics Board as well as Fraser Health’s Research Ethics Board. Also on my committee is Dr. Sheryl Reimer-Kirkham of Trinity Western University. As current practicing health professionals in critical care environments, your experience and insight would be very valuable in this study. Your participation will involve an audio-recorded online or in-person interview lasting approximately 45-60 minutes. Your participation in the interview will result in remuneration consisting of a $10 coffee card. You may keep this token of appreciation even if you should choose to withdraw from this study. Upon completion of the entire study, you will receive a project summary report. You will not be identified by name in any reports associated with this study. Any stories you choose to share, that have the potential to be easily identified will be altered to protect any possible third party identification. If you are interested in participating, or if you would like to find out more about this study, please contact Melissa De Boer by phone at 587-257-8001, or by email at Melissa.Dueck1@mytwu.ca. Thank you for taking the time to consider this request. AVOIDING FUTILITY 164 Appendix F: Informed Consent Interview Consent Form Research Title: The Exploration of Influences Shaping the End-of-life Decision making Process as Individually Experienced by Intensive Care Nurses and Physicians Principal Investigator: Melissa De Boer Master of Science in Nursing (MSN) Student School of Nursing Trinity Western University 7600 Glover Rd. Langley, BC V2Y 1Y1, Canada Melissa.Dueck1@mytwu.ca 587-257-8001 This research is related to Melissa De Boer’s MSN thesis. Thesis Supervisor: Dr. Rick Sawatzky School of Nursing Trinity Western University 7600 Glover Road Langley, B.C. V2Y 1Y1 Canada rick.sawatzky@twu.ca 604-513-2121 ext. 3274 Co-Investigator: Dr. Sheryl Reimer-Kirkham School of Nursing Trinity Western University 7600 Glover Road Langley, B.C. V2Y 1Y1 Canada sheryl.kirkham@twu.ca 604-513-2121 ext. 3239 AVOIDING FUTILITY 165 INTRODUCTION You are invited to participate in this research study because you are a nurse or physician who has experience working in a critical care setting. YOUR PARTICIPATION IS VOLUNTARY Participation in the interview is entirely voluntary. You may decide not to participate or may withdraw at any time without consequences or explanation. You are free to refuse to answer any questions, and may withdraw from answering any specific questions for any reason and without explanation. Participation in this study will in no way affect your role as a health care provider. FUNDING This study is not funded at this time. BACKGROUND Death is commonly experienced in intensive care unit (ICU) settings and both physicians and nurses have a large role to play in the end-of-life (EOL) decision making process. This process can be complex, multifaceted and intensely emotional for health professionals. Much of the literature reviewed advocates that the shaping forces in the decision making process at EOL care warrants further study and that the intensive care setting presents unique challenges to this transition. This qualitative study will endeavor to explore influencers such as emotion, professional role and other psychosocial factors experienced by health professionals in the process of EOL decision making. WHAT IS THE PURPOSE OF THE STUDY? The purpose of this research is to understand how intensive care nurses and physicians experience individual differences in the process of EOL decision making. The purpose of the interview is to gain insights to your experience in EOL decision making in a critical care setting. WHO CAN PARTICIPATE IN THE STUDY? You are eligible to participate in the study if you are a either a registered nurse (RN), physician or completing an ICU fellowship, who is currently employed in a critical care setting (intensive care or high acuity), and are providing care to adult patients with life-threatening illnesses. WHO SHOULD NOT PARTICIPATE IN THE STUDY? You are not eligible to participate in the study if you are not a registered nurse (RN) or physician currently employed in a critical care setting (intensive care or high acuity). You are not eligible if you are a student nurse or currently completing a practicum in intensive care, or if you are a medical resident. AVOIDING FUTILITY 166 WHAT DOES THE STUDY INVOLVE? We are asking for your consent to participate in a face-to-face or phone/online interview. We will also ask you to provide demographic information about yourself before we begin the interview. The interview will last approximately 45 minutes to 1 hour. The interview will include open-ended questions that focus on your experience of the EOL decision making process in intensive care .The interview will be arranged at a time of your convenience and will be audio recorded and transcribed verbatim by the researcher. WHAT ARE MY RESPONSIBILITIES? To participate in the study you must provide consent. This is done by signing a paper consent form. WHAT ARE THE POSSIBLE RISKS OF HARM AND SIDE EFFECTS OF PARTICIPATING? There is a risk that you may become emotionally distressed when recalling experiences with EOL decision making process as it is an inherently emotional and value-laden process. If you become distressed, I will provide you with the contact information for the Employee Assistance Program at your hospital. Every precaution will be taken to ensure your comfort during the interview. You do not have to answer any question you do not wish to answer. WHAT ARE THE BENEFITS OF PARTICIPATING IN THIS STUDY? There may or may not be direct benefits to you from taking part in this study. You may experience the benefit of reflecting on your practice in this interview and discussing it with another health professional. This research will contribute to a growing body of literature looking at the EOL decision making process in intensive care as well as foster greater insight into interdisciplinary collaboration. WHAT HAPPENS IF I DECIDE TO WITHDRAW MY CONSENT TO PARTICIPATE? Your participation in this research is entirely voluntary. You may withdraw from this study at any time without giving a reason or explanation. If you decide to enter the study and to withdraw at any time in the future, there will be no penalty or loss of benefits to which you are otherwise entitled. If you choose to enter the study and then decide to withdraw at a later time, all data collected about you during your enrollment in the study will be retained for analysis unless you specifically ask for it to be removed. If you choose to withdraw from this study, please contact either Melissa De Boer or Dr. Rick Sawatzky (contact information for both persons is provide at the beginning of this consent form). RIGHTS AND COMPENSATION By signing this form, you do not give up any of your legal rights. There will be no costs to you for participation in this study. A $10 honorarium gift card will be provided as a token of appreciation for your participation in the study after the interview has been completed. Should you choose to withdraw from the study, you may keep this honorarium. AVOIDING FUTILITY 167 CAN I BE ASKED TO LEAVE THE STUDY? If you are not complying with the requirements of the study or for any other reason, the study investigator may withdraw you from the study. AFTER THE STUDY IS FINISHED A summary of the study findings will be distributed to all participants. The final report is expected to be completed for November 2018 and will be completed for thesis defense as well as presented at conferences and published in academic journals. No information that discloses your identity will be released or published without your specific consent to the disclosure. WILL MY TAKING PART IN THIS STUDY BE KEPT CONFIDENTIAL? Any information that is obtained in connection with this study and that might identify you, will remain confidential and will only be accessible to the principal investigator (Melissa De Boer) and her thesis supervisor (Rick Sawatzky). Your confidentiality will be respected. However, research records identifying you may be inspected in the presence of the researcher and TWU REB for the purpose of monitoring the research. No information or records that disclose your identity will be published without your consent, nor will any information or records that disclose your identity be removed or released without your consent unless required by law. You will be assigned a unique study number as a subject in this study. Only this number will be used on any research-related information collected about you during the course of this study, so that your identity [i.e. your name or any other information that could identify you] as a subject in this study will be kept confidential. Information that contains your identity will remain only with the research team. Any identifying information will be removed from the transcriptions. The list that matches your name to the unique study number that is used on your research-related information will not be removed or released without your consent unless required by law. Your information will only be disclosed with your permission. All original paper- and audiobased data will be stored in locked filing cabinets in the office of the principal investigator. The audio recordings will be transferred from the recording device to a password protected and encrypted computer. The audio-based data will be anonymized during transcription. All directly identifying participants’ information will be shredded and electronic files will be deleted when the study is completed. Study data will be retained for five years after completion of the study. Your research-related information will not identify you in any way because all identifying information has been removed such that the information is now anonymous and there is no possibility of linking your identity to your information. AVOIDING FUTILITY 168 WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT THE STUDY DURING MY PARTICIPATION? If you have any questions or desire further information with respect to this study, you may contact Melissa De Boer (principal investigator) or Dr. Rick Sawatzky (thesis supervisor) using the contact information provide at the beginning of this consent form. WHO DO I CONTACT IF I HAVE ANY QUESTIONS OR CONCERNS ABOUT MY RIGHTS AS A SUBJECT DURING THE STUDY? If you have any concerns about your treatment or rights as a research participant, you may contact Elizabeth Kreiter in the Office of Research, Trinity Western University at 604-513-2167 or researchethicsboard@twu.ca AVOIDING FUTILITY 169 Research Title: The Exploration of Influences Shaping the End-of-life Decision making Process as Individually Experienced by Intensive Care Nurses and Physicians Principal Investigator: Melissa De Boer, MSN student, Trinity Western University Co-Principal Investigators: Rick Sawatzky, Trinity Western University Sheryl Reimer-Kirkham, Trinity Western University SUBJECT CONSENT TO PARTICIPATE • I have read and understood the subject information and consent form and am consenting to participate in the study “The Exploration of Influences Shaping the End-of-life Decision making Process as Individually Experienced by Intensive Care Nurses and Physicians” • I have had sufficient time to consider the information provided and to ask for advice if necessary. • I have had the opportunity to ask questions and have had satisfactory responses to my questions. • I understand that the interview will be audio recorded. • I understand that all of the information collected will be kept confidential and that the result will only be used for research and evaluation objectives, such as in presentations, and scientific journals. • I understand that my participation in this study is voluntary and that I am completely free to refuse to participate or to withdraw from this study at any time without affecting my employment status in any way. • I understand that I am not waiving any of my legal rights as a result of signing this consent form. • I understand that there is no guarantee that this study will provide any benefits to me. • I have read this form and I freely consent to participate in this study. • I have been told that I can receive a dated and signed copy of this form upon request by contacting Melisas De Boer (Principle Investigator) at Melissa.dueck1@mytwu.ca, 587257-8001, or Rick Sawatzky (Thesis Supervisor) at rick.sawatzky@twu.ca, 604-5132121 ext 3274. Your signature below indicates that you have had your questions about the study answered to your satisfaction and have received a copy of this consent form for your own records. By signing the paper consent form, you are indicating you consent to participate on the study and that your responses may be kept for further use after the completion of this study. Printed name of subject: Date (dd/mm/yy): Signature: AVOIDING FUTILITY Printed name of principal investigator/ designated representative: Date (dd/mm/yy): 170 Signature: AVOIDING FUTILITY 171 Appendix G: Interview Guide Version 1 Interview Guide This study is about exploring the EOL decision making process in ICU, defining EOL decisions as “the process that health providers, patients, and patients’ families go through when considering what treatment will or will not be used to treat a life threatening illness” (Thelen, 2005 as cited in Gallagher, 2015). Recall an example of your involvement in a EOL decision making process that you found exemplary or particularly troubling. Prompt: Why? Can you give an overview or general description of how EOL decisions are made on your unit? a. Prompt: Who is involved? Are there structures or protocols? 2. How do you experience EOL decision making within your unit? a. Is there variability in how EOL decision making occurs on your unit? Have you always felt this way? 3. How do emotions enter into EOL decision making process? a. Prompts: for yourself? With colleagues? With patients? With families? 4. How do you manage your emotions in these situations? Describe their impact, if any, on your decision making process. 5. How would you describe your role in the EOL decision making? a. Prompt: Do you experience specific professional responsibilities unique to your role? 6. How would you describe the role of the other profession (Doctor/Nurse) in EOL decision making? a. Prompt: Does this part of the team possess specific professional responsibilities in EOL decision making? 7. Describe the collaboration (positive or negative) that occurs between the nurses and physicians during EOL decision making on your unit. AVOIDING FUTILITY 172 a. Prompt: How do you experience achieving consensus for EOL decision making on your team? Do you always respond this way? What might make you respond differently? 8. Can you describe a situation of tension between the interdisciplinary team during EOL decision making? 9. What knowledge sources do you rely in making end-of-life decisions? a. What guides you in making a judgement call? b. What guides your internal processing for knowing the timing to initiate an EOL discussion either formal informally? With the patient or family? With the medical team? How does confidence regarding your judgment impact the timing of these decisions? Has your approach changed over time? What motivated this? 10. To what extent do you find that your personal beliefs affect EOL decision making? a. Prompt: To what extent do you experience your personal beliefs coming into conflict with your professional responsibilities in EOL decision making b. Prompt: Do religious beliefs of staff on the team influence EOL decision making? 11. How do you experience other team members (nurses or physicians) navigating their personal beliefs in decision making? 12. How do you experience organizational pressures as impacting EOL decision making? a. Prompts: shift-work culture, bureaucracy, organizational resources, bed availability, financial or legal pressure? b. How do you experience the ICU environment overall as a facilitator or barrier to EOL decision making? 13. What values are most important to you to uphold in EOL decision making? 14. What would you see as being the most beneficial change in how you experience EOL decisions getting made on your unit? AVOIDING FUTILITY 173 Debriefing Script: Thank you so much for your participation in this project? What was it like for you to participate in this study? PROMPTS: Ok Thanks, that’s very interesting…I’m wondering if you can relate your experience to this…. Can you describe an experience…. Wow! Tell me more about that! How did the “x” react when you said that? If I were watching you during this process what would I see? Why does that matter? What was significant about this to you? Why does that stand out in your memory? Why was it important to you? What might make you respond differently? Can you say something about why this issue generated so much emotion? AVOIDING FUTILITY 174 Appendix H: Interview Guide Version 2 Interview Guide Thank you for agreeing to participate in this interview. This study is about exploring the EOL decision making process in ICU, defining EOL decisions as “the process that health providers, patients, and patients’ families go through when considering what treatment will or will not be used to treat a life threatening illness” (Thelen, 2005 as cited in Gallagher, 2015). Recall an example of your involvement in a EOL decision making process that you found exemplary. Please also recall an example you found or particularly troubling. Prompt: Why did you find this experience exemplary or particularly troubling? 1. Can you give an overview or general description of how EOL decisions are made on your unit? a. Prompt: Who is involved? Are there structures or protocols? 2. How do you experience EOL decision making within your unit? 3. How would you describe your role in the EOL decision making? a. Prompt: Do you experience specific professional responsibilities unique to your role? 4. How would you describe the role of the other profession (Doctor/Nurse) in EOL decision making? a. Prompt: Does this part of the team possess specific professional responsibilities in EOL decision making? 5. Describe the collaboration (positive or negative) that occurs between the nurses and physicians during EOL decision making on your unit. AVOIDING FUTILITY 175 6. Are there areas of frequent dissension or tension between the two professional groups during EOL decision making? Please describe. 7. What knowledge sources do you rely on in making end-of-life decisions? a. Prompt: What guides your internal processing to initiate an EOL discussion either formal informally? With the patient or family? With the medical team? 8. How do emotions enter into EOL decision making? a. Prompts: for yourself? With colleagues? With patients? With families? 9. How do you manage your emotions in these situations? Describe their impact, if any, on your decision making process. 10. How do your personal beliefs/attitudes inform your EOL decision making? 11. How do you experience other team members (nurses or physicians) navigating their personal beliefs in decision making? 12. Are there any other aspects of your work environment that you can think of that may contribute as impacting EOL decision making? a. Prompts: shift-work culture, bureaucracy, organizational resources, bed availability, financial or legal pressure? 13. What values are most important to you to uphold in EOL decision making? Debriefing Script: Thank you so much for your participation in this project? What was it like for you to participate in this study? AVOIDING FUTILITY 176 Appendix I: Codebook 1. AVOIDING FUTILITY 1.1. Missions and Moral Interests of Nurses 1.1.1. Role as Advocate 1.1.2. Preserving Dignity 1.2. Missions and Moral Interests of Physicians 1.2.1. Legal Pressure 1.2.2. Evaluate Reversibility 1.3. Antithetical Care 2. AMBIGUOUS PROCESS 2.1. Lack of Structure 2.2. Who Should Make Decision 2.3. Time-Consuming Process 2.4. Collaboration as Meeting of the Minds 2.5. ICU Contextual Environment 3. INDIVIDUAL PHILOSOPHY OF APPROACH 3.1. Individual Physician 3.1.1. Advance care planning 3.2. Role of Nurses as Perceived by Physician 3.3. Role of Physician as Perceived by Nurses 4. MORAL WEIGHTINESS 4.1. Role of Nurses 4.2. Role of Physician 4.3. Shared Moral Burden 5. FAMILY RECEPTIVENESS 5.1. Family Views 5.2. Nurse as Hybrid 5.3. Nurse as Relational Connector 5.4. Physician Responsiveness