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UBC Theses and Dissertations

End-of-life planning and care for patients with heart failure and their family members : why nurses and… Gibson, Jennifer Ann 2019

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  END-OF-LIFE PLANNING AND CARE FOR PATIENTS WITH HEART FAILURE AND THEIR FAMILY MEMBERS: WHY NURSES AND OTHER HEALTH CARE PROFESSIONALS’ KNOWLEDGE, WORDS, AND FEELINGS MATTER    by   Jennifer Ann Gibson  B.S.N., Kwantlen University-College, 2003 M.S.N., The University of British Columbia, 2011        A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES  (Nursing)         THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)    November 2019   © Jennifer Ann Gibson, 2019   ii  The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled:   END-OF-LIFE PLANNING AND CARE FOR PATIENTS WITH HEART FAILURE AND THEIR FAMILY MEMBERS: WHY NURSES AND OTHER HEALTH CARE PROFESSIONALS’ KNOWLEDGE, WORDS, AND FEELINGS MATTER  submitted by Jennifer Ann Gibson  in partial fulfillment of the requirements for the degree of Doctor of Philosophy in  Nursing  Examining Committee: Dr. Patricia (Paddy) Rodney Supervisor Dr. Colleen Varcoe Supervisory Committee Member Dr. Shauna Butterwick University Examiner Dr. Leanne Currie University Examiner  Additional Supervisory Committee Members: Dr. Kelli Stajduhar Supervisory Committee Member Dr. Bashir Jiwani Supervisory Committee Member Dr. Jeff Kirby Supervisory Committee Member    iii Abstract Heart failure (HF) is a progressive, chronic illness characterized by decompensation episodes and hospitalizations. Life expectancy is only 2 years following HF-related hospitalizations; when complicated by frailty and comorbidities, prognosis worsens. Compared to patients with malignancies, HF patients receive less end-of-life (EOL) planning and specialist palliative care. Patients with HF often die in hospitals, where prolonged dying, inadequately managed symptoms, and worsened suffering for patients/families are commonly reported. Hospital environments have been described as having influence on EOL planning and care. Thus, the purpose of this study was to understand how hospital environments influence healthcare professionals’ (HCPs) thinking about HF-EOL care and structure their approach and practices. The concept of structure was defined within a theoretical framework and informed the study design and research questions. Ethnographic methods and interpretive description guided data collection and analysis. A sample of twenty-two HCPs from various disciplines experienced in acute care and HF-EOL participated from two study sites; data were collected over 250 observation hours and through eighteen semi-structured individual interviews.  Data analysis produced three main areas of findings: practice knowledge and notions of expertise; uses and meanings of EOL-related words and phrases; and, emotional and value-based dimensions. Participants commonly framed EOL planning and care as the work of clinical experts and framed expertise in relation to perceptions about the knowledge required for clinical    iv practice in hospitals. Findings about HCPs’ knowledge also related to understandings and interpretations of frequently used EOL-related words such as “palliative.” These EOL-related words were used within interprofessional communications; however, differing interpretations existed. Findings about emotional and value-based dimensions of EOL planning and care work were identified. Emotions and values related to HCPs’ uses of strategies, such as avoiding particular words in order to manage emotion in EOL-related work.  Discussion of the findings in this research highlight several implications including the need to more intentionally situate EOL planning and care for patients with HF-EOL as being within all professionals’ scopes of practice. The need to prioritize development of communication competencies for HCPs is also supported. Overall, this study adds new insights about how EOL practices are structured within hospital environments.        v Lay Summary Heart failure (HF) is a serious chronic illness. After a HF-related hospitalization, a person’s lifespan can be only 2 years. People with HF frequently die in hospitals and the quality of their end of life (EOL) care experiences can be poor. This study examined ways hospitals influence HF and EOL planning and care. Study findings related to three areas: what clinicians knew, said, and felt. What clinicians thought about the knowledge needed to work in hospitals shaped how they learned about HF and EOL. Clinicians’ HF-EOL knowledge also shaped uses of words such as “palliative.” Feelings also mattered and influenced word uses. For example, sometimes words such as “palliative” were avoided.  To better improve HF-EOL planning and care in hospitals for patients and their family members, developing clinicians’ communication skills and emotions awareness are recommended. Clinicians also need clearer definition of their roles in supporting patients’ HF-EOL issues in hospitals.             vi Preface This dissertation is original, unpublished, independent work by the author, J.A. Gibson.   I note the following disclosures:  A. The research design and related methods were approved by the University of British Columbia’s Research Ethics Board [certificate #H15-01648]. B. Figures 2-2, 2-3, and 2-4 are used with permission from applicable sources. C. Portions of Sections 2.5 were published with modifications as Gibson, J.A. and Crowe, S. (2018). Frailty in critical care: Identifying patients, understanding risks, and examining implications for current clinical practices. Critical Care Nurse, 38(3), 29-35. doi:10.4037/ccn2018336. Crowe and I collaborated equally in the conceptual development and organization of this publication and co-wrote the content. As the lead author, I lead the overall composition, manuscript edits, and publication.  D. Portions of Sections 2.5 were also published with modifications as Gibson, J. A., & Nordby, D. (2014). Managing hemodynamics: Using medications to influence the sympathetic nervous system. Nursing Critical Care, 9(4), 13-16. Norby and I collaborated equally in the conceptual development and organization of this publication and co-wrote the content. As the lead author, I lead the overall composition, manuscript edits, and publication.  E. Portions of this dissertation including the theoretical framework and preliminary findings were presented and published in various sources:  Gibson, J.A. (May, 2019). Unpacking implicit narratives in language about end-of-life    vii care: The valuable action of disrupting assumptions about the words we use in clinical practice. Presentation, Canadian Bioethics Society Annual Conference. Banff, AB.  Gibson, J.A. (Apr, 2017). Understanding the clinical contexts where patients and families with heart failure access end-of-life care: The HF-EOL Study. Poster, Canadian Frailty Network (CFN) Annual Conference. Toronto, ON.  Gibson, J.A. (Oct, 2016). Frailty in heart failure: Exploring implications for current acute care clinical practices. Canadian Journal of Critical Care Nursing, 27(10), S317. Presentation, Canadian Cardiovascular Nurse’s conference, Canadian Cardiovascular Congress. Toronto, ON.  Gibson, J.A. (Oct, 2016). Examining the clinical contexts where patients with heart failure access end-of-life care: The HF-EOL Study. Canadian Journal of Cardiology, 32(10), S317- 318. Presentation, Canadian Cardiovascular Nurse’s conference, Canadian Cardiovascular Congress. Toronto, ON.  Gibson J.A. (May, 2015). Fostering ethical end-of-life care for patients and families with heart failure: Using a theory of structure to examine complex ethical challenges in clinical practice contexts. Presentation, Canadian Bioethics Society Annual Conference. Winnipeg, MB.  Gibson J.A. (May, 2014). Integrating the palliative approach into heart failure management: Enacting a relational ethic in clinical practice. Presentation, Canadian Bioethics Society Annual Conference. Vancouver, BC.     viii Table of Contents  ABSTRACT ............................................................................................................................... iii LAY SUMMARY ......................................................................................................................... v PREFACE ................................................................................................................................. vi TABLE OF CONTENTS .......................................................................................................... viii LIST OF TABLES ................................................................................................................... xvii LIST OF FIGURES ................................................................................................................ xviii LIST OF ABBREVIATIONS ..................................................................................................... xix ACKNOWLEDGEMENTS......................................................................................................... xx CHAPTER 1 ............................................................................................................................... 1 THE HF-EOL STUDY: INTRODUCTION, PURPOSE, AND OVERVIEW ................................... 1 1.1. OVERVIEW OF CHAPTER ONE ........................................................................................ 3 1.1.2. Defining my uses of EOL-related terms. ................................................................ 4 1.2. BACKGROUND: HEART FAILURE, CHRONIC ILLNESS, AND MORTALITY ............................... 6 1.3. RESEARCH PROBLEM: HEART FAILURE, HOSPITALIZATIONS, AND REPORTEDLY POOR-   QUALITY EXPERIENCES AT END OF LIFE  ........................................................................ 8 1.3.1. Poor quality HF-EOL experiences. ......................................................................... 8 1.3.2. Hospitalizations and HF. ...................................................................................... 10 1.4. RESEARCH PURPOSE: UNDERSTANDING HOW ACUTE CARE CONTEXTS SHAPE HCPS’ APPROACHES TO HF-EOL PLANNING AND CARE............................................................ 13 1.4.1. A brief explanation of “structure.” ......................................................................... 13 1.5. RESEARCH QUESTIONS ............................................................................................... 17 1.6. SIGNIFICANCE TO NURSING AND PATIENT/FAMILY OUTCOMES ....................................... 18 1.7. OVERVIEW OF DISSERTATION CHAPTERS ..................................................................... 20 CHAPTER 2 ............................................................................................................................. 24 LIVING AND DYING WITH HEART FAILURE: CHRONICITY, HETEROGENEITY, COMORBIDITY, UNCERTAINTY, AND MORTALITY .............................................................. 24 2.1. OVERVIEW OF CHAPTER TWO ...................................................................................... 26 2.2. HOSPITALIZATION AND MORTALITY: PROGNOSTIC IMPLICATIONS OF ACUTE DECOMPENSATION EVENTS AND CURRENT DYING EXPERIENCES .................................. 28 2.3. DYING IN HOSPITALS AND THE CARE AT END OF LIFE: WHAT IS KNOWN ABOUT CARING FOR PATIENTS AND THEIR FAMILIES WITH LIFE-LIMITING ILLNESSES ...................................... 29    ix 2.3.1. Dying in acute care settings: General and specialty areas/units in hospitals. ....... 30 2.3.1.1. The cardiac specialty. ................................................................................ 32 2.3.1.2. The critical care specialty ........................................................................... 34 2.3.1.2.1. The experiences of dying in critical care. ........................................ 36 2.3.1.2.2. Impacts on HCPs who support patients at EOL and their families in critical care settings. ...................................................................... 38 2.3.2. The care needs for patients with life-limiting illnesses and their families. ............. 40 2.3.2.1. The traditional palliative care model. .......................................................... 42 2.3.2.2. The palliative approach to care. ................................................................. 46 2.3.2.3. Distinguishing the palliative approach from palliative care specialist programs and clinicians. ........................................................................... 51 2.4. CHRONIC ILLNESS MANAGEMENT: EXPLORING THE UNIQUE CARE NEEDS FOR PATIENTS WITH CHRONIC ILLNESSES SUCH AS HF ....................................................................... 54 2.4.1. Models of care for people with chronic illnesses. ................................................. 56 2.4.2. Self-management: A key chronic illness management strategy for patients with HF. ..................................................................................................................... 59 2.5. HETEROGENEITY IN HEART FAILURE: COMORBIDITIES AND FRAILTY, AND ILLNESS TRAJECTORY .............................................................................................................. 62 2.5.1. Etiology and pathophysiology. ............................................................................. 64 2.5.2. Comorbidities and frailty. ..................................................................................... 66 2.5.2.1. Frailty and mortality. ................................................................................... 69 2.5.2.2. NYHA classification and mortality............................................................... 70 2.5.3. Therapeutic options: Treatment-focused care for patients with HF. ..................... 71 2.5.3.1. Pharmacological therapy in HF. ................................................................. 72 2.5.3.2. Biomedical technologies and interventions in HF. ...................................... 73 2.6. CHAPTER SUMMARY ................................................................................................... 76 CHAPTER 3 ............................................................................................................................. 79 A THEORY OF STRUCTURE AND CRITICAL THEORY PERSPECTIVES: PHILOSOPHICAL AND METHODOLOGICAL IMPLICATIONS OF THE THEORETICAL FRAMEWORK ............ 79 3.1. OVERVIEW OF CHAPTER THREE ................................................................................... 81 3.2. STRUCTURE: IMPLICIT REPRODUCTION OF SOCIAL CONDITIONS..................................... 82 3.2.1. Strengths in Sewell’s theory. ................................................................................ 85 3.2.1.1. Foregrounding agency: Duality in structures. ............................................. 86 3.2.1.2. Social transformation and structural change. ............................................. 88    x 3.3. CRITICAL THEORY ....................................................................................................... 90 3.3.1. Critical theory: Historical shifts. ............................................................................ 91 3.4. PHILOSOPHICAL CONGRUENCE: CONSIDERATIONS ACROSS THE THEORETICAL FRAMEWORK .............................................................................................................. 94 3.4.1. Ontological commitments: Modified realism. ........................................................ 94 3.4.2. Epistemological assumptions: Knowledge as situated and constructed. .............. 98 3.4.3. Methodology. ..................................................................................................... 101 3.5. CHAPTER SUMMARY ................................................................................................. 102 CHAPTER 4 ........................................................................................................................... 104 STUDY METHODOLOGY, METHODS, DATA ANALYSIS, AND QUALITY .......................... 104 4.1. OVERVIEW OF CHAPTER FOUR .................................................................................. 106 4.2. BACKGROUND TO METHODOLOGY: QUALITATIVE RESEARCH ....................................... 106 4.2.1. Ethnography: Origins and historical shifts. ......................................................... 107 4.2.2. Critical ethnography: Power within social structures and epistemological considerations. ................................................................................................. 110 4.3. STUDY SITES: IDENTIFYING THE RELEVANT CLINICAL CONTEXTS FOR DATA COLLECTION ............................................................................................................................... 111 4.3.1. Explanation of my two study sites: Site A and Site B. ........................................ 112 4.3.2. Organization and layout of the acute general medical units. .............................. 114 4.3.3.  Advantages to using multiple study sites. ......................................................... 115 4.4. SAMPLE: INVITING STUDY PARTICIPANTS .................................................................... 116 4.4.1 Sample design: Estimating my sample size and fieldwork hours. ........................ 118 4.4.2. Entering the field: First experiences recruiting study participants. ...................... 120 4.4.3. Reaching the final sample of twenty-two interdisciplinary study participants: Characteristics and recruitment insights. .......................................................... 123 4.5. ETHICAL RESEARCH: PROTECTIONS FOR STUDY PARTICIPANTS................................... 128 4.5.1. The principle of respect for persons. .................................................................. 129 4.5.2. The principle of concern for welfare. .................................................................. 131 4.5.3. The principle of justice. ...................................................................................... 133 4.6. METHODS: COLLECTING DATA FROM DIALOGIC INTERACTIONS AND REFLEXIVITY .......... 133 4.6.1. Data collection with participant observations and fieldwork. ............................... 134 4.6.1.1. Evolutions in understanding of what it meant to “do” fieldwork. ................ 138 4.6.1.2. The value of observations and fieldwork: Accessing implicit and non-verbal data ......................................................................................................... 139    xi 4.6.1.3. How I used fieldnotes. .............................................................................. 140 4.6.2. Data collection with in-depth, semi-structured interviews. .................................. 142 4.6.3. Data collection and reflexive journaling. ............................................................. 144 4.6.3.1. How I used journaling as a reflexive tool. ................................................. 145 4.6.4. Data collection from documents and other text-based content. .......................... 146 4.6.5. The nature of data gathered through dialogic methods. ..................................... 148 4.7. DATA ANALYSIS: HOW I CONSTRUCTED INTERPRETATIONS .......................................... 149 4.7.1. The initial phase of data analysis. ...................................................................... 151 4.7.2. The use of generic codes................................................................................... 153 4.7.3. The final understanding: Knowing the data. ....................................................... 155 4.8. RESEARCHING WITH QUALITY: STRATEGIES I USED TO ENSURE INTEGRITY, CREDIBILITY, LOGIC, AND AUTHORITY ............................................................................................ 157 4.9. CHAPTER SUMMARY ................................................................................................. 160 CHAPTER 5 ........................................................................................................................... 161 WHAT HEALTH CARE PROFESSIONALS SAW AND KNEW: ACUTE CARE PRACTICE KNOWLEDGE, DISCIPLINARY SCOPE, AND POSITIONING EOL PLANNING AND CARE AS THE WORK OF EXPERTS. .............................................................................................. 161 5.1. OVERVIEW OF CHAPTER FIVE .................................................................................... 162 5.2. AWARENESS OF HF AND EOL PLANNING AND CARE IN ACUTE CARE CONTEXTS: CHALLENGES AND COMPLEXITIES SEEING EOL ISSUES AS RELEVANT IN HF, AND SEEING HF AT ALL ................................................................................................................ 163 5.2.1. Acuity, workload, staff mix, and diverse patient populations: Resource-related complexities of seeing HF in acute practice settings. ....................................... 165 5.2.1.1. Challenges responding to the needs of diverse patient populations in general medical units. ............................................................................. 167 5.2.1.2. Staff experience in general medical units: Impacts of collective clinical experience in the context of many newly graduated nurses. ................... 170 5.2.1.3. Participants’ experiences accessing patient information: Physical layout of acute environments, organization of work duties, and multidisciplinary demands for patient charts. ..................................................................... 173 5.2.1.4. Resources in acute care units in hospitals that point to structured practices. ............................................................................................................... 181    xii 5.2.2. Clinicians’ understandings of HF illness concepts and recognizing HF as a life-limiting illness: Issues of awareness and invisibility around HF-EOL planning and care. ................................................................................................................. 182 5.2.2.1. It’s not cancer: The substantial impact of hearing “cancer” as compared to hearing “heart failure.” ............................................................................. 185 5.2.2.1.1. The impact of hearing “cancer”: How implicit assumptions about cancer obscured concurrent comorbidities. .................................. 189 5.2.2.2. Relevance and appropriateness as a necessary and foundational schema for HCPs to engage in EOL planning and care. ....................................... 191 5.2.3. A summary of findings about issues of awareness and invisibility of HF in acute care settings. .................................................................................................... 195 5.3. KNOWLEDGE, SKILLS, AND COMPETENCIES IN ACUTE CONTEXTS: PERCEPTIONS ABOUT DISCIPLINARY SCOPE AND ROLE AND THE POSITIONING OF EXPERTS FOR EOL PLANNING AND CARE ................................................................................................................ 197 5.3.1. Interpretations of self-assessed knowledge deficits in relation to perceptions about practice expectations........................................................................................ 203 5.3.2. Why HF is a “big problem”: Perceptions about the knowledge needed and beliefs about permissions. ........................................................................................... 207 5.3.2.1. Permissions and authorities: Implicit and explicit understandings about disciplinary scope and roles. ................................................................... 208 5.3.3. Perceptions about scope and role and relationship to decisions and enacted practices........................................................................................................... 212 5.3.4. Structured practices from need-to-know schemas: How knowledge was prioritized in acute care. ................................................................................................... 214 5.4. CHAPTER SUMMARY ................................................................................................. 216 CHAPTER 6 ........................................................................................................................... 218 WHAT HEALTH CARE PROFESSIONALS SAID AND HEARD ABOUT END OF LIFE IN ACUTE CARE SETTINGS: IMPLICIT AND SHIFTING NARRATIVES WITHIN COMMONLY WORDS USED TO TALK ABOUT END OF LIFE PLANNING AND CARE AND STRUCTURED PRACTICES ........................................................................................................................... 218 6.1. HOW I AM USING THE TERM “NARRATIVE” ................................................................... 220 6.2. OVERVIEW OF CHAPTER SIX ...................................................................................... 222 6.3. WHAT IS END-OF-LIFE CARE? CONSIDERING MY OWN NARRATIVE .............................. 224 6.4. SEWELL’S CONCEPTUALIZATION OF LANGUAGE WITHIN STRUCTURES .......................... 227    xiii 6.5. NARRATIVE DIMENSIONS OF COMMON WORDS AND PHRASES USED BY HCPS TO DISCUSS EOL IN ACUTE SETTINGS .......................................................................................... 229 6.5.1. What did it mean to “be” palliative? Explicating implicit schemas and narratives. ......................................................................................................................... 229 6.5.1.1. Managing others’ understandings and reactions to what it meant to be palliative: Strategies to clarify and control others’ interpretations............. 234 6.5.1.2. Shifting narratives: Dissemination of the concept of a palliative approach and concomitant influences on schemas and narrative meanings. .......... 238 6.5.2. What does it mean to “be” a particular resuscitation direction? Explicating schemas and narratives associated with preferences for resuscitation or code status. .............................................................................................................. 245 6.5.2.1. Explaining “code status”: A descriptive account of resuscitation directions. ............................................................................................................... 246 6.5.2.1.1. A disconnect between theory and practice: How the forms were actually used in practice............................................................... 249 6.5.3. What it meant to “be” a resuscitation direction: Explicating schemas and implicit narratives. ........................................................................................................ 251 6.6. HOW CLINICAL DECISIONS AND ENACTED PRACTICES WERE STRUCTURED FROM IMPLICIT SCHEMAS AND NARRATIVES ...................................................................................... 257 6.6.1. A prism effect: Illustrating how different words can result in an array of meanings. ......................................................................................................................... 262 6.7. CHAPTER SUMMARY ................................................................................................. 266 CHAPTER 7 ........................................................................................................................... 268 HOW HEALTH CARE PROFESSIONALS FELT AND ACTED: COPING WITH DIFFICULT EMOTIONS AND VALUE INCONGRUENCE IN THE WORK OF EOL PLANNING AND CARE ............................................................................................................................................... 268 7.1. OVERVIEW OF CHAPTER SEVEN ................................................................................. 270 7.2. EMOTIONAL DIMENSIONS OF EOL PLANNING AND CARE .............................................. 271 7.2.1. Navigating HCP’s own and others’ emotions in EOL planning and care. ............ 274 7.2.1.1. EOL planning and care as “awkward” and “hard.” .................................... 274 7.2.1.2. Directly addressing mortality is a “hard” aspect of EOL planning and care. ............................................................................................................... 276 7.2.1.3. How EOL planning and care elicited participants’ and others’ emotions. .. 277    xiv 7.2.1.4. Fears and worries about making mistakes, giving wrong information, and provoking interprofessional conflict. ........................................................ 279 7.2.1.5. Being outside a comfort zone. .................................................................. 282 7.3. VALUES-BASED DIMENSIONS OF EOL PLANNING AND CARE: PERCEPTIONS, PREFERENCES AND INCONGRUENCE WITH OTHERS’ DECISIONS .................................. 284 7.3.1. How the interface of other values and tensions can reconcile incongruences. ... 289 7.4. MITIGATING COMPLEX EMOTIONAL DIMENSIONS OF EOL PLANNING AND CARE: STRATEGIES HCPS USE TO MANAGE DISCOMFORT AND HOW THESE STRATEGIES STRUCTURED PRACTICES ......................................................................................... 292 7.4.1. Careful words: Controlling emotions with softer language. ................................. 296 7.4.2. Truncating or avoiding EOL planning and care: Full code as the default. ........... 300 7.5. CHAPTER SUMMARY ................................................................................................. 305 CHAPTER 8 ........................................................................................................................... 307 DISCUSSION OF THE THREE MAJOR AREAS OF MY FINDINGS...................................... 307 8.1. OVERVIEW OF CHAPTER EIGHT .................................................................................. 310 8.2. POSITIONING EOL PLANNING AND CARE AS THE WORK OF EXPERTS: REFRAMING NURSES AND HCPS’ ROLES IN EOL PLANNING AND CARE IN ACUTE CARE SETTINGS ................ 312 8.2.1. “Need-to-know” schema and defining expectations for nurses and all HCPs in HF-EOL planning and care..................................................................................... 316 8.2.2. Addressing the devaluation and under-prioritization of communication skills and the hidden curriculum. ...................................................................................... 318 8.2.2.1. The lessons taught and learned in a hidden curriculum. ................................. 320 8.3. ACHIEVING MUTUAL UNDERSTANDINGS WHEN NARRATIVES ARE IMPLICIT AND SHIFTING ............................................................................................................................... 323 8.3.1. Differences in how clinicians understand EOL-related words. ............................ 324 8.3.2. The concepts of narrative nursing and narrative medicine: Practices of hearing, understanding, and responding to others’ illness stories. ................................. 327 8.3.2.1. Narrative knowledge and narrative competencies. ................................... 332 8.4. CONSIDERATIONS FOR THE EMOTIONAL AND VALUES-BASED DIMENSIONS OF EOL PLANNING AND CARE ................................................................................................ 333 8.4.1. “Bad news” and the nature of situations that evoke difficult emotions. ............... 334 8.4.2. The nature of health care work as emotional and the strategies to control it. ..... 336 8.4.3. Emotional labor: Managing emotions in professional contexts. .......................... 339    xv 8.4.4. Value-based dimensions of health care work: Relationship between values and emotions and related concepts. ........................................................................ 342 8.5. CHAPTER SUMMARY ................................................................................................. 346 CHAPTER 9 ........................................................................................................................... 348 CLINICAL PRACTICE IMPLICATIONS, STUDY LIMITATIONS, AND FUTURE RESEARCH ............................................................................................................................................... 348 9.1. OVERVIEW OF CHAPTER NINE ................................................................................... 348 9.2. A BRIEF OVERVIEW AND SUMMARY OF THE HF-EOL STUDY ........................................ 349 9.3. PROVINCIAL AND NATIONAL-LEVEL END-OF-LIFE CARE QUALITY IMPROVEMENT INITIATIVES THAT ARE CURRENTLY UNDERWAY ............................................................................ 351 9.4. CLINICAL PRACTICE IMPLICATIONS AND RECOMMENDATIONS: STRENGTHENING THE SUCCESS OF EOL CARE INITIATIVES BY ADDRESSING INFLUENTIAL ASPECTS OF ACUTE CARE CONTEXTS AND STRUCTURED PRACTICES ........................................................ 355 9.4.1. Awareness in HF and EOL planning and care: Addressing environmental issues that relate to HF invisibility and improving how HCPs see and know HF in acute care. ................................................................................................................. 356 9.4.1.1. Addressing issues such as workload, workflow, staffing, and other large-scale structural changes. ........................................................................ 357 9.4.1.2 Improving HCPs’ access to patient information. ........................................ 359 9.4.1.3. Re-visiting the prioritization of patient information in relation to the ED admission. ............................................................................................... 362 9.4.2. Knowledge, skills, and competencies and perceptions and positioning of EOL planning and care experts: Addressing clinicians’ perceptions about the prioritization and value of knowledge domains related to EOL planning and care. ......................................................................................................................... 364 9.4.2.1. Reframing HF-EOL knowledge, skills, and competencies within acute care practices and addressing the “need-to-know.” ......................................... 366 9.4.2.2. Understanding the hidden curriculum and addressing the devaluation of communication skills and other knowledge and competencies related to EOL planning and care. .......................................................................... 369 9.4.2.3. Addressing issues of HF-EOL awareness and changing practices: Implications for stakeholder engagement and change management. ...... 371    xvi 9.4.3. Addressing the narrative dimensions of EOL-related words and phrases: Clarifying and understanding what we saying in clinical practice and recognizing the narratives underpinnings. ................................................................................. 373 9.4.3.1. Developing awareness of how narratives shape practice. ........................ 374 9.4.3.2. Supporting clinicians towards mutual understandings: Communication skills and narrative competency. ...................................................................... 377 9.4.4. Supporting HCPs to manage the emotional and value-based dimensions of EOL planning and care. ............................................................................................ 379 9.5. STUDY LIMITATIONS .................................................................................................. 381 9.6. OPPORTUNITIES FOR FUTURE STUDY ......................................................................... 383 9.7. REFLECTIONS AND CONCLUSIONS .............................................................................. 385 BIBLIOGRAPHY .................................................................................................................... 389 APPENDIX A: STUDY POSTER ............................................................................................ 429 APPENDIX B: INFORMATION FOR HCPS............................................................................ 430 APPENDIX C: INFORMATION FOR PATIENTS/FAMILIES .................................................. 433 APPENDIX D: STUDY CONSENT ......................................................................................... 434 APPENDIX E: INTERVIEW GUIDE ........................................................................................ 441     xvii List of Tables Table 2-1: The New York Heart Association (NYHA) Functional Classifications ........................ 62 Table 2-2: Heart Failure Staging ............................................................................................... 63 Table 4-1: Study sample characteristics .................................................................................. 125     xviii List of Figures Figure 2-1: Acute care practice areas, general and specialty areas .......................................... 31 Figure 2-2: The traditional palliative care model. ....................................................................... 43 Figure 2-3: Illness trajectories ................................................................................................... 45 Figure 2-4: The palliative approach to care, new model ............................................................ 48 Figure 3-1: Dual, recursive relationship ..................................................................................... 83 Figure 4-1: Study participant, recruitment flow chart ............................................................... 120 Figure 4-2: Study sample (N=22), with clinical expertise ......................................................... 124 Figure 4-3: Proportions of HCPs in Canada ............................................................................ 126 Figure 4-4: Final study sample, professional disciplines .......................................................... 127 Figure 5-1: Fieldnote (recreated), illustration of Site A unit and Site B unit .............................. 174 Figure 5-2: Fieldnote (recreated), need-to-know, simple illustration ........................................ 215 Figure 6-1: Fieldnote (recreated from sketch), code status and ACP relationships ................. 247 Figure 6-4: Palliative prism and the traditional concept of palliative care (dominant narrative) 263 Figure 6-5: Palliative prism and the palliative approach to care (shifting narrative) ................. 264 Figure 6-6: Scattered narratives, unpredictable interpretations. .............................................. 265      xix List of Abbreviations  ACP Advance care planning EOL End of life ED Emergency Department HCPs Health care professionals HF Heart failure HF-EOL Heart failure and end of life QOL  Quality of life  RN  Registered Nurse SICG Serious Illness Conversation Guide VS Vital signs            xx Acknowledgements  I first wish to acknowledge and express gratitude to the health care professionals who joined this study as participants. Your warmth, wisdom, dedication, and honesty were consistent sources of inspiration and made this research possible. I am so thankful to each of you for supporting me to do this study and for offering so much encouragement while I was a guest alongside you. I will be forever grateful for the unwavering support and encouragement I received from my supervisory committee: Dr. Patricia (Paddy) Rodney (chair), Dr. Colleen Varcoe, Dr. Kelli Stajduhar, and Dr. Bashir Jiwani. I am so appreciative of the endless opportunities to seek and receive feedback on countless versions of this dissertation. I recognize how much time and thought each of you have given to me—thank you all so much.   I wish to sincerely thank and acknowledge my extraordinary colleagues and mentors including Ms. Janis McGladrey, Ms. Amanda Harvey, Dr. Christopher De Bono, and Ms. Jenny Young for their support. I had the true privilege of building a professional clinical and leadership career while I traversed through this academic journey and I could not have done so without the encouragement and help of these colleagues. I am also so thankful for the training funding I received in 2016 for the Interdisciplinary Fellowship Program from the Canadian Frailty Network (known previously as Technology Evaluation in the Elderly Network, TVN), supported by Government of Canada through Networks of Centres of Excellence (NCE) Program, in partnership with The Heart Center at St. Paul’s Hospital (Providence Health Care).     xxi Lastly, I wish to thank Jason who, showing patience and resilience beyond imagine, cooked countless dinners and encouraged me to nurture my love of the mountains over all the years.     1 Chapter 1 The HF-EOL Study: Introduction, Purpose, and Overview In this dissertation, I present and discuss a research study that I carried out which adds new knowledge to the growing body of literature about end-of-life (EOL) planning and care1 for patients and their families experiencing heart failure (HF). As I will describe over the course of the forthcoming chapters, I examined the problem of reportedly poor quality EOL experiences for patients with HF. As many HF-related EOL experiences are known to occur in hospitals, I focused my inquiry on acute care inpatient settings in hospitals, which included general medical units and cardiac units2.  As I will show in Chapter Two where I examine and discuss the body of HF and EOL-related literature, other authors have situated the problem of reportedly poor-quality HF-EOL                                                   1  I use the phrase “EOL planning and care” in a particular way throughout this dissertation. I define this usage below on page 4.   2 Inpatient units in hospitals are often organized by the nature of the admission and have different names and descriptors. For example, “acute medicine” is a common descriptor for inpatient medical units where patients with many different medical issues are admitted. “Acute surgery” is a descriptor for units where patients are admitted for care after surgical procedures. “Acute cardiology” is a descriptor for units where patients are admitted with cardiac issues. I delve into more detail about the types of acute inpatient units that were involved in this study in Chapters Two and Four.      2 care experiences in relation to hospital contexts3 and acute care settings where patients with HF access care. As I will also show, aspects of these contexts have been described as having some problematic influence on the quality of HF-EOL care; however, specific and intentional explication of these influences and interrelationships was not available. As aspects of the context were named but not necessarily well understood, a knowledge gap was apparent. As many HF-related EOL experiences take place in hospitals, I designed my research study with the purpose of better understanding how the contexts and cultures4 of acute care hospital settings shape or structure5 health care professionals’ (HCPs’) related beliefs and values, and subsequent decisions and actions about HF and EOL care (HF-EOL care).                                                    3  I am using the word context in way that aligns with general understandings of the word. For example, the dictionary describes context as “the circumstances that form the setting for an event, statement, or idea, and in terms of which it can be fully understood and assessed” (Oxford Reference, 2019, para. 1). This definition distinguishes the notion of context from setting in that context is capturing a broader thinking about circumstances while setting is referring to the more physical and observable aspects of context.     4  As I will return to in Chapter Three, Sewell (1992) defined culture simply as “what people know.” He states, “after all, the usual social scientific term for ‘what people know’ is ‘culture’” (p. 7). I build from this simple definition and explore culture in more detail in Chapter Three.  5  I used Sewell’s (1992) Theory of structure to define “structure.” As is explained in the coming chapters and particularly in Chapter Three, there are different conceptualizations of the term. According to Sewell, “structure” explains why social conditions are reproduced even when the agents who are affected by them do not desire them (or acknowledge them). I explicate this idea more fully where I discuss the theoretical framework informing my research in Chapter Three.    3 Given my study purpose, I was seeking to address an important knowledge gap that existed about the relationships between HF, hospitalizations, and EOL experiences. Using a qualitative design and ethnographic methods, I collected and analyzed data with the aim of producing greater understandings about relationships between acute care contexts and HF-EOL experiences. Overall, I aimed to identify ways the quality of HF-EOL experiences might be improved for patients with HF and their family members. In the chapters forthcoming, I explain and discuss how I designed and carried out my study and I present what I learned about HF-EOL planning and care in acute care settings in hospitals. 1.1. Overview of Chapter One Chapter One is an introduction and overview of my research study, which I called: “The Heart Failure End of Life (HF-EOL) Study” (see Appendix A). This first chapter opens with an introduction and background to HF, chronic illness, and mortality followed by a discussion about my research problem and the reportedly poor-quality HF-EOL in acute care. I briefly explain HF in relation to reported EOL and dying experiences, discuss characteristics of acute care hospitalization encounters, and summarize what is already known about the cultural and contextual features that structure EOL planning and care for patients with HF and their families in hospitals.  Following my initial presentation of the research problem I investigated, I outline my study purpose and define the three research questions that guided my inquiry. I also touch on    4 the methodological approach that I used to collect and analyze my study data. I close with a general overview and layout of what follows in this dissertation. 1.1.2. Defining my uses of EOL-related terms. As I proceed, it is important that I clarify my use of EOL-related terms6 including “EOL planning and care.” “EOL care” describes the care provided during the final stage of life, usually referring to the weeks and days immediately preceding death. This definition aligns with a joint position statement from the Canadian Nurses Association, Canadian Hospice Palliative Care Association, and the Canadian Hospice Palliative Care Nurses Group: “EOL care begins when a person is actively dying, and then continues until death and into family bereavement and care of the body” (Canadian Nurses Association, Canadian Hospice Palliative Care Association, & Canadian Hospice Palliative Care Nurses, 2015, p. 7). The aim of EOL care should be to relieve suffering and improve the quality of living in all care settings and is broadly applicable to many illnesses, including HF (Canadian Nurses Association, Canadian Hospice Palliative Care Association, & Canadian Hospice Palliative Care Nurses).                                                   6  The words and phrases used by clinicians to talk about advanced illness stages including active dying and death (i.e. “EOL-related words”) were identified as a predominant feature of acute care with considerable influence on HCPs’ thinking, decisions, and clinical care activities. I explain this study finding in detail in Chapter Six where I also reflect on the strengths and drawbacks that I encountered with how I used the phrase “EOL planning and care.”    5 As is evident in the literature, end-of-life care experiences should be shaped by upstream EOL planning activities including EOL-oriented communication (e.g. HF illness education, goals of care), and integration of palliative care principles (e.g. interdisciplinary approach, optimization of QOL, symptom management, holistic approach). For some patients, EOL planning and care should also involve the inclusion of palliative care specialist HCPs (Howlett et al., 2010). To encompass this upstream relationship, Howlett et al. used the phrase “EOL planning and care” to include the activities (or the lack thereof) that have influence on EOL care experiences. I similarly use the encompassing phrase “EOL planning and care” to reflect the relationship between upstream efforts and downstream EOL care experiences. As Howlett et al. emphasize, communication about illness and EOL issues is foundational to EOL planning and care. And as I will explain in Chapter Two, with HF specifically, “EOL planning” should also include conversations about HF-specific illness issues such as self-management. Self-management is important in HF-EOL planning because it creates opportunities for patients to recognize early signs of deterioration and prevent acute decompensation events, which are associated with increased morbidity and mortality. Throughout my study I focused on understanding how HCPs in hospitals approached the planning aspects of EOL as well as EOL care.    6 1.2. Background: Heart Failure, Chronic Illness, and Mortality Heart failure is a chronic, progressive, and life-limiting7 disease8 with multiple etiological causes (Beattie, 2015; Butler & Kalogeropoulos, 2008; Johansen, Strauss, Arnold, Moe, & Liu, 2003; Kheirbek et al., 2013; Strachan et al.). Heart failure is also a disease that deteriorates towards death along a variable and largely unpredictable trajectory (Goebel et al., 2009; Goldfinger & Adler, 2010; Goldstein & Lynn, 2006; Goodlin et al., 2004; Goodlin, 2009; Gott et al., 2007; Howlett et al., 2010; Jaarsma et al., 2009; Lynn & Adamson, 2003; Murray et al., 2005; Ryder et al., 2011; Strachan et al., 2009; Wotton et al., 2005). In Canada, an estimated 600,000 people are living with HF; an additional 50,000 are newly diagnosed annually (Butrous & Hummel, 2016; Heart and Stroke Foundation, 2016; Public Health Agency of Canada, 2009).                                                    7  According to the British Columbia Ministry of Health (2013) the term “life-limiting” describes: “illnesses that can be reasonably expected to cause the death of the individual within a foreseeable future. This definition is inclusive of both malignant and non-malignant illnesses that are expected to shorten an individual’s life” (p.  2).  8  Helman (1981) distinguished the terms “disease” and “illness.” According to Helman, “disease” is based in the medical model and describes pathological aspects; disease can be distinguished by biological or chemical evidence. In contrast, “illness” is based within the individuals experience of the disease; illness includes both the experiences of illness and the meaning given to the experience (Helman). I recognize the value in this conceptual distinction, particularly with respect to discussions about each. However, in practice (and in much of the writing cited through this dissertation), the terms are used synonymously and thus I do not distinguish between the two.     7 Heart failure is associated with significant morbidity and mortality. In many cases, mortality outcomes for patients with HF surpass those related to many cancers (Howlett et al., 2010; Jessup & Brozena, 2003; Ko et al., 2008; Mamas et al., 2017). At five years, the mortality rate of HF is approximately 50 percent (Beattie, 2015; Cacciatore et al., 2005; Ho, Anderson, Kannel, Grossman, & Levy, 1993; Stewart, MacIntyre, Hole, Capewell, & McMurray, 2001). Following a HF-related hospitalization, a person’s life expectancy declines to only two years (Howlett, 2011). When complicated by frailty, comorbidities, and other-organ dysfunction, prognosis deteriorates considerably (Afilalo, 2009; Afilalo, 2011; Cacciatore et al., 2005; Lee et al., 2003; Mosterd et al., 2001).  Heart failure is also a chronic illness and this chronicity characteristic is associated with unique health care and EOL planning and care needs (Holman & Lorig, 2004; Thorne, Roberts, & Sawatzky, 2016). In acute pathologies, the illness usually manifests suddenly from a distinguishable origin and efforts to diagnose, treat, and cure are beneficial. In contrast, chronic illness and disease processes are less linear and often appear gradually, progress over time, and originate from multivariate etiological causes (Holman & Lorig, 2004; Penning, 2002; Wagner et al., 1996). The diagnose, treat, and cure goals for acute-pathologies are not necessarily applicable or beneficial in chronic pathologies; instead, goals such as slowing the illness progression and supporting symptom self-management may be more relevant for patients with HF (Bergethon et al., 2015; Howlett et al., 2016). In HF specifically, slowing the    8 illness progression and preventing decompensation events are key goals. Despite various therapy options, the HF illness course is unpredictable, uncertain, and ultimately terminal.  1.3. Research Problem: Heart Failure, Hospitalizations, and Reportedly Poor-Quality Experiences at End of Life  Patients and their families with HF reportedly experience poor-quality EOL. This patient/family member group also characteristically endures multiple hospitalization encounters over the course of their illness(es). As I proceed, I explore and discuss both the reported quality issues of HF-EOL as well as HF-related hospitalizations. The introductory content serves as a background for the research problem and highlights what is known, and where there are gaps in understandings about the relationships between HF, EOL experiences, and hospitalizations.  1.3.1. Poor quality HF-EOL experiences. Patients with HF have reportedly poor-quality EOL experiences. In the final month of life, more than half of the people who die from HF experience uncontrolled pain (Alemzadeh-Ansari, Ansari-Ramandi & Naderi, 2017; Godfrey et al., 2006; Goebel et al., 2009; Setoguchi et al., 2010; Zambroski, 2004). Many patients also experience a wide range of other poorly controlled symptoms associated with dying including anxiety, breathlessness, pruritus, and delirium (Goldfinger & Adler, 2010; Howlett, 2011; Jaarsma et al., 2009; LeMond & Goodlin, 2015; Setoguchi et al., 2010; Walthall & Floegel, 2019). Family members may also be affected; depression and anxiety are more common when patients' EOL experiences are poor (Coombs, 2010; Cypress, 2010; Hwang et al., 2014; Kavalieratos, Mitchell, Carey et al., 2014; Wright et al., 2008). Compared to patient groups with    9 similar morbidity and mortality outcomes, including patients with cancer, patients with HF also have less access to specialist palliative services (Beattie, 2015; Cunningham, Hanley, & Morgan, 2011; Howlett et al., 2010; Howlett, 2011; Meyers & Goodlin, 2016; Strachan et al., 2009). As palliative care specialist clinicians have expertise in symptom management, this lowered referral rate and access to palliative services may relate to the symptom issues (e.g. uncontrolled pain) associated with advanced HF and HF-EOL experiences. Communication and planning about EOL is also reportedly poor for patients with HF and their family members (Beattie, 2015; Dunlay, Swetz, Mueller, & Roger, 2012; Howlett et al., 2010; Howlett, 2011; Meyers & Goodlin, 2016; Strachan, Ross, Rocker, Dodek, & Heyland, 2009). Heyland et al. (2013) have established relatedness between upstream EOL-related planning activities and downstream EOL care experiences. Quality upstream EOL planning involves effective and ongoing communication between HCPs and patients and their families about EOL issues such as HF disease progression and illness expectations, the individual’s goals of care, and emergent intervention preferences (e.g. resuscitation)—such communications promote alignment between what patients want and what is provided (Goodlin et al., 2004; Kelley & Morrison, 2015; World Health Organization, 2017). According to Heyland et al. (2013), a lack of EOL-related planning communication, for example, can lead to intensification of medical treatments before death, which may be unwanted by patients and may also diminish the quality of EOL experiences. In the absence of previously expressed wishes for advanced-illness and EOL care preferences, hospitalization and acute care experiences    10 become default (Goldstein & Lynn, 2006). Another consequence of this under-emphasis on EOL-related conversations and planning is that death from HF can seem sudden, which can be difficult for both patients and families and may diminish the quality of HF-EOL experiences (Mamas et al, 2017; Flynn, Connolly, & Booth, 2008).  1.3.2. Hospitalizations and HF.  Patients with HF and their family members commonly endure multiple hospitalizations over the course of a HF illness trajectory, including at EOL. Acute care settings such as medical units, cardiology units, and critical care areas are frequently utilized to provide the complex care needs for patients with HF who experience acute decompensation events, advanced illness stages, dying, and death (Chan, 2014; Cook & Rocker, 2014; Fowler & Hammer, 2013; Heyland, Lavery, Tranmer, Shortt, & Taylor, 2000; Heyland et al., 2013; Hopkinson, Hallett, & Luker, 2003; Kheirbek et al., 2013; Kelley & Morrison, 2015; Komajda et al., 2007; Komajda et al., 2009; van Diepen et al., 2014). Acute HF decompensations that require hospitalization are significant because they may indicate a deteriorating prognosis and nearness to death (Dharmarajan et al., 2015; van Diepen, 2014).  As I will explore further in Chapter Two, HF-related hospitalizations are also significant because they can contribute to poor-quality EOL care. Acute care areas in hospitals are not necessarily equipped to support patients with HF and their family members plan or experience EOL; this mismatch in what is needed versus what is offered has an impact on how EOL planning and care is delivered and experienced (Andresen et al. 2015; Gries et al, 2010; Hopkinson, Hallett, & Luker, 2003; Safavi et al., 2013; Thorne, Roberts, & Sawatzky, 2016). For    11 example, patients’ HF-EOL experiences in hospitals have been reported as including inadequately managed symptoms (e.g. pain, dyspnea), inappropriate (i.e. unwanted) escalation of medical interventions at EOL, prolonged dying, and worsened suffering for patients and their families (Godfrey et al., 2006; Goebel et al., 2009; Goldfinger & Adler, 2010; Howlett et al., 2010; Kavalieratos, Mitchell, Carey et al., 2014; Setoguchi et al., 2010; Strachan et al., 2009; Zambroski, 2004). In many cases, the acute treatment focus of hospitals and related acute care approaches misalign with what patients actually want and need to prepare for and experience EOL (Andresen et al., 2015; Baggs et al., 2007; Thorne, Roberts, & Sawatzky, 2016; Wright et al., 2008). The mismatch in services—that is, between what hospitals provide and what patients actually want and need to plan for and endure EOL—makes up an important aspect of the context of hospitals and structures HF-EOL planning and care experiences. Other structural aspects of hospital contexts have been identified and described including a dominant “cure” culture in both general acute care and cardiac care (Hauptman & Havranek; Howlett et al., 2010; Tucker, 2009). The care for patients with HF in hospitals can also be technologically-focused; unlike some other life-limiting chronic illnesses, in HF there is a range of biomedical technologies and pharmacological management options that can effectively improve patients’ prognoses (Hauptman & Havranek, 2005; Howlett et al., 2010; Howlett, 2011). While these technologies and pharmacology options can improve HF prognosis, they can also add complexity and uncertainty to the overall illness trajectory.     12 Though HF prognosis improves with effective illness management, uncertainty and chronicity remain. Such uncertainty can obscure HCPs’ sense of the “right” timing for EOL planning (Goebel et al., 2009; Goldfinger & Adler, 2010; Goldstein & Lynn, 2006; Goodlin, 2009; Gott et al., 2007; Howlett et al., 2010; Jaarsma et al., 2009; Kavalieratos, Mitchell, Carey et al., 2014; Ryder, Beattie, O'Hanlon, & McDonald, 2011; Strachan et al., 2009; Wotton, Borbasi, & Redden, 2005), which shapes EOL planning and care experiences. As Hauptman and Havranek (2005) have noted, “the array of treatment options is particularly broad in HF and includes a number of technologically invasive therapies. Because there is frequently ‘one more thing to try’, shifting the focus of care from life extension to symptom relief can be particularly difficult” (p. 375).       The interrelated issues of reportedly poor-quality HF-EOL experiences, limited access to EOL planning activities (e.g. EOL-related communication) and palliative specialists, frequent hospitalization experiences, and the influence of hospital contexts on HF-EOL planning and care, are significant and is an important problem. This problem of reportedly poor-quality HF-EOL experience is important because it effects a large number of people who currently have HF and will continue to be important as the prevalence of HF is expected to rise (Bleumink et al., 2004; Boutrous & Hummel, 2016; Heart and Stroke Foundation, 2016; Public Health Agency of Canada, 2009; Strachan et al., 2009; van Diepen et al., 2014). Poor-quality HF-EOL experiences should also be a concern for nurses and all HCPs.     13 1.4. Research Purpose: Understanding how acute care contexts shape HCPs’ approaches to HF-EOL planning and care  Given the challenges noted above, the purpose of this study was to examine the problem of reportedly poor-quality EOL planning and care for patients with HF and their families by producing new knowledge about how acute care settings in hospital contexts shapes or structures HCPs’ approaches to HF-EOL planning and care. As I presented in the section above, when I began my study, there was some evolving understandings within the existing literature where other researchers had described structured relationships and impacts of hospital contexts and EOL planning and care experiences. For example, the dominant “cure culture” shapes the care in hospitals by driving health service focus on diagnosing, treating, and curing (Hauptman & Havranek; Howlett et al., 2010; Tucker, 2009). However, to my knowledge, no researcher had undertaken a purposeful and intentional study of these contexts and the relationships regarding HF-EOL planning and care experiences. Further, significant knowledge gaps were apparent in the literature regarding HF-EOL planning and care. I therefore designed my research study with a theoretical framework and methodological approach that enabled me to examine aspects of hospital contexts and acute care settings where patients with HF and their family members access EOL planning and care with the goal of explicating, interpreting, and understanding structured HF-EOL planning and care practices.  1.4.1. A brief explanation of “structure.” The terms “structure”, “structural”, and “structuring” are commonly used in nursing discourse and scholarship and the idea of structure    14 as a concept exists with a range of theoretical roots. Structure is often used to describe ways in which elements of complex socio-political-historical contexts shape, pattern, or influence people’s lives—contexts also include, for example, aspects or features within the settings/environments of acute care hospitals and influences on EOL and death experiences. Sewell’s (1992) Theory of structure aligns well within the broader theoretical and philosophical commitments in this study; thus, I used Sewell’s work for definitional support and to build a theoretical framework for this dissertation.  Sewell (1992) described structures as composed simultaneously of the schemas (i.e. things that exist virtually but may not be objectively observable) and resources (i.e. things that are actual and are usually observable), which are influential in shaping and reproducing social relations. The notion of “schema”—that is, preconceptions and patterned ways of thinking—describes virtual social features (e.g. constructs of culture, etiquette rules, aesthetic norms). Schemas encompass notions such as collective beliefs9 (e.g. the biomedical model), discourse (e.g. “evidence-based medicine”, “patient-centered care”), and values (e.g. professional values                                                   9  Jiwani (2017) describes beliefs as having two dimensions: the stories consciously developed from subconscious experiences; and, the actions or consequences that these beliefs are thought to bring. According to Jiwani, beliefs inform how we perceive the world and how we think. Beliefs can also change as a result from different experiences, including interaction with others.    15 and biomedical ethical principles). Importantly, schemas belong to agents—that is, schemas exist exclusively in the human experience. Sewell also described structures as composed of resources; that is, in most cases, features that are actual and observable10. Resources are used to enhance or maintain power11 within social contexts (Sewell, p. 9). For example, in hospitals and in acute care settings, professional designations are resources that are associated with considerable power and influence in how patient care decisions and actions unfold. In general, resources make up the observable and discernable constituents of health care environments. For instance, a cardiac program in a tertiary hospital with components including cardiac specialty wards and critical care services; extensive cardiac imaging, intervention services, and biomedical technologies; as well as cardiac specialty physicians, nurses, surgeons and allied HCPs; is a compilation of appreciable, observable, actual, resources. Using Sewell’s (1992) notion of resources and schemas, I found that hospitals, acute medical units, and cardiac specialty units, can be understood as having structured practice                                                   10  In Chapter Three, I more fully explicate the definitional issues of structure. In that discussion I will also argue that resources may be both actual and virtual (e.g. coping, resilience, knowledge, words).   11  Giddens (1984) also wrote about the concept of structure and indeed, Sewell (1992) builds on Giddens’ work. According to Giddens, power should be defined in relation to agents’ intent or will and their capacity to achieve desired and intended outcomes (p. 15). Sewell called this aspect of power the “capacity” of agency—meaning, the efficacy of human action.    16 conditions because the actual resources—such as medications and biomedical equipment—are continually interfacing with multiple, simultaneously functioning schemas such as “cure culture” which influence actions. Berwick (2002) has argued that understanding structuring can be difficult because structural relationships are complicated; to untangle such complexity, Sewell’s development on the theory of structure formed an integral part of the overall theoretical framework. As I discovered from reviewing the body of HF and EOL-related literature, there was limited explanation of hospital and acute care contexts and culture regarding HF-EOL planning and care, and no explicit and intentional study of their structured relationships. The research purpose for my study was therefore to address this knowledge gap and add new insights towards understanding how micro, meso, and macro-level12 hospital contexts and acute care settings interrelate to shape or structure actions and HF-EOL planning and care. Indeed,                                                   12  I am using the terms micro-, meso-, and macro- to describe different levels of social organization. For example, Rodney, Buckley, Street, Serrano, and Martin (2013) describe micro- as the individual and interpersonal level; meso- refers to the organizational or regional influence; and macro- applies at the societal level (p. 201). Micro-level can refer to individual HCPs; meso-level encompasses hospital- and organizational-level; and macro-level captures influences at societal level.    17 consistent with my theoretical framing, this emphasis on interrelations points not only to greater understandings of how context shapes practice but also to how agents shape contexts.  1.5. Research Questions  In order to address my research problem and achieve my study purpose, my inquiry was informed by my theoretical framing and guided by three research questions: 1) What are the relationships between agents, schemas, and resources within acute care practice contexts where patients with HF and their family members experience care and how can such relationships be said to structure HCPs’ clinical practices specifically concerning EOL planning and care?  2) How is power operating within these practice contexts to preserve (or sustain) some structural configurations, and limit (or constrain) others?  3) What are the implications for nursing and interprofessional practice, research, and policy? To answer these three research questions, I used a qualitative ethnographic methodological approach with complementary interpretive description methods. As I explain in Chapter Four, this combined methodological approach provided a way to answer my three research questions because it created access to relevant types of data within particular practice contexts. In Chapter Four, I more fully discuss methodological considerations including data collection methods, study sample design, and the analytical process.    18 1.6. Significance to Nursing and Patient/Family Outcomes The problem of poor-quality HF-EOL planning and care constitutes an important clinical issue for nurses and all HCPs. As Strachan, Kryworuchko, Nouvet et al. (2018) have argued, “nurses [have] a key role in advocating that patient wishes and preferences remain at the center of serious illness communication, especially in goals of care13 discussions and decision-making” (p. 29). Thus, the findings and implications described in this dissertation are aimed largely at nursing practices and systems-levels issues that influence nursing and interprofessional practices.  Structural relationships are important to understand because they can create and reinforce ways of being; as Waitzkin (1989) stated, “structures of society help generate the specific context in which patients and doctors find themselves…” (p. 221). The aim of studies such as mine is to reveal implicit schemas (e.g. assumptions, principles), which are usually tacit, unquestioned, and taken-for-granted. The aim is also to understand how schemas interface with resources (e.g. cardiac biomedical technologies, patient education materials) to shape decisions                                                   13  Strachan, Kryworuchko, Nouvet et al. (2018) defined “goals of care” conversations as what is important for patients and their families to accomplish. Simply, “goals of care communication refer to the process of discussion that ideally informs and occurs prior to shared decision-making processes about EOL care options” (p. 27).     19 and actions and to make recommendations for changes in structures and practices. This type of structural inquiry addresses HCPs’ collective ethical, professional, and disciplinary responsibilities to understand and act on inequitable social relations via research and policy development at the micro-, meso-, and macro-levels (Reimer-Kirkham & Anderson, 2010). As Anderson and Reimer-Kirkham (1998) have cautioned, “unless we recognize and unmask the unquestioned and taken-for-granted notions that are embedded in our institutions, health reform may build on the ideological structures that form the substratum of our current theorizing, policy decisions, and health care practices” (p. 250). Ideological structures, for example, may include implicit and taken-for-granted schemas that can undermine professional, ethical, and disciplinary imperatives such as health, fairness, social justice, and the common good (Rodney & Varcoe, 2012; Peter, 2013). As I will present in Chapters Five, Six, and Seven, I uncovered implicit schemas that would not necessarily reflect these professional and disciplinary imperatives and thus should be reconsidered. Pursuing explication of the implicit is also foundational in ethical practice. As Jiwani (2017) has argued, the process of undergoing ethical justification of any health care decision depends in part in how “accurately and comprehensively contexts are understood and how carefully relevant values have been thought through” (p. ix). As such, identifying and understanding these implicit schemas within the context of HF-EOL care in hospitals, were central aims in this research. Indeed, as I will show as I present my findings in subsequent chapters, the structures in acute care hospitals do have influence on patients and their families’    20 HF-EOL planning and care experiences. As I will also show, there are opportunities to alter these structures through supporting HCPs to develop communication skills, which may improve HF-EOL care. 1.7. Overview of Dissertation Chapters  The research study carried out for this dissertation is presented in nine chapters. In this first chapter, existing problems with EOL planning and care for patients with HF and their families were introduced. The research problem and purpose were explained with a short description of the supporting theoretical framework. Sewell’s (1992) theory of structure was introduced with definitional explanations for how I am using the word “structure” throughout this dissertation. Three research questions were laid out with an overview to my methodological approach. Chapter Two contains is a discussion about the literature I reviewed to substantiate my research focus. I discuss four related substantive areas: HF-related hospitalization and mortality; dying in hospitals and care needs at EOL; chronic illness management concepts and HF: and, the complex issue of heterogeneity in the HF-patient population. Building on the introductory content above, I begin Chapter Two by more fully delving into the linkage between HF-related hospitalizations and mortality. I review literature about experiences of dying in Canada more generally; I also look more specifically at the care needs of patients and their families at EOL and explain and discuss both the palliative care philosophy and the palliative approach to care. Following this general discussion about dying in Canada and about quality-   21 EOL care and palliative principles, I shift focus and explore concepts in the management of chronic, life-limiting conditions. I emphasize illness education and self-management as aspects that should be considered within how I have defined “EOL planning and care” in the HF patient population. To close Chapter Two, I explicate the complex issue of heterogeneity in the HF patient population and illuminate the substantial amount of clinical knowledge that clinicians utilize to support this patient population. In Chapter Three, I elaborate on the theoretical framework, which supported all aspects of my study. I present and discuss Sewell’s (1992) Theory of structure and Kincheloe and McLaren’s (2011) Reconceptualized critical theory14 in detail. In doing so, I articulate how Sewell’s particular conceptualization of structure emphasizes two key strengths: the foregrounding and presentation of agency, and social transformation (i.e. change) as possible. Sewell points to issues of power within social relations (for example, when explaining why some structures remain and others do not); however, he does not explicitly identify a theoretical underpinning for power. Thus, after introducing Sewell’s work, I also address ideas of power in social structures in relation to Kincheloe and McLaren’s (2005) writings on critical theory. I                                                   14  Kincheloe and McLaren’s work was first published in 1994. I reviewed a 2005 (Kincheloe & McLaren, 2005) version and a 2011 version. The 2011 version is cited through this dissertation.    22 explain how I addressed philosophical congruence throughout the study design with these two theories. I close Chapter Three by discussing implications of research and knowledge production within the theoretical framework described.          In Chapter Four, I open with a brief review of key philosophical issues concerning methodology. I situate qualitative research within what has been called the “emerging” paradigm. I then explain how my research questions, the implications of such questions, and the purpose of this inquiry, required a qualitative methodology. I locate this study within a particular methodological style called critical ethnography. I describe my complementary use of ethnographic methods and interpretive description and how they informed my study sample design and data collection methods (observations, interviewing, fieldnotes, and reflexive journaling). I close Chapter Four by explicating my analytic processes and described how I maintained quality and integrity throughout the study process. I present my study findings in Chapters Five, Six, and Seven. Each of these three chapters are focused around a particular area of findings. In Chapter Five, I explore the area of findings about what HCPs saw and knew, which addresses issues of practice knowledge and notions of expertise, as well as acute care clinicians’ perceptions of knowledge needs and competencies in acute care. In Chapter Six, I examine the area of findings about what HCPs said and heard. This second major area of findings illuminates uses and meanings of particular EOL-related phrases. I explore how EOL-related words were used beyond their definitions and instead, reflected what I interpreted as narrative. Chapter Seven is a presentation of the third    23 major areas of findings, how HCPs felt and acted. Here, I focus on what I recognized as the emotional and value-base dimensions of EOL planning and care. I explore aspects of how EOL planning and care work can be emotionally difficult for HCPs; for example, when HCPs’ own values are misaligned with what a HCP perceives the patient/family wants.  In Chapter Eight, I discuss all three areas of my dissertation findings in relation to the current literature and related concepts. For example, in the first section of discussion, I examine my findings about What HCPs saw and knew and explore the topic of knowledge, skills, and competencies in acute care. I also examine and discuss other areas including the use of language in practice, and emotions in health care work. Chapter Nine is my final chapter; in it, I discuss the micro-, meso-, and macro-level implications of the findings from Chapter Five, Six, and Seven. I also highlight limitations in the study design and opportunities for future research. I close this last chapter with an overall summary of this dissertation and some concluding remarks. I emphasize how my study adds new knowledge to the growing body of literature about HF-EOL care for patients and their family members. I also discuss how my findings may improve EOL planning and care experiences for this patient population and other similar patient groups and inform future policy and research.  24 Chapter 2  Living and Dying with Heart Failure: Chronicity, Heterogeneity, Comorbidity, Uncertainty, and Mortality Throughout my own experiences working in diverse clinical roles, and being involved in countless HF-EOL planning and care experiences with patients with HF and their families, I have been cognizant of the complexity of this patient/family population. The complexity of this patient population is in part related to the prevalence of HF and the pathophysiological heterogeneity, which results in significant prognostic differences from one person with HF to another. Though HF is an illness that impacts many patients in hospitals, individuals’ outcomes differ, as do etiologies, treatments, illness trajectories, and so on. In practice, this means it can be hard to identify what any one individual might need because while there are guidelines, there is no single treatment and care approach for this patient population. Patients’ individual illness journeys are unique. The complexity of the HF patient population, the diversity and uncertainty of the illness trajectory, and the multitude of treatment and care options relates, in part, to the array and availability of therapeutic options in cardiac care. Cardiac therapies are sophisticated and continually evolving. These therapies further complicate and confound prognostic differences and also underpin some of the challenges both HCPs and patients/families can have understanding illness expectations. For example, even though HF is a life-limiting illness, therapies can be effective at both prolonging life and improving symptoms, which can obscure    25 the therapies aims (e.g. to prolong life versus to control and manage symptoms). Complexity is also related to differences in care settings where patients with HF access hospital services. Indeed, thinking about HF-EOL planning and care involves explicating aspects of complexity in this particular patient population. Thus, my overall purpose in this empirical review is to summarize what is currently known about the significance of these complex HF patient characteristics and to situate my research problem, purpose, and research questions.  As the HF patient population is growing, I also discuss the importance of understanding EOL care experiences. Unlike any other cardiovascular disease (CVD), HF prevalence continues to rise (Bleumink et al., 2004; Boutrous & Hummel, 2016; Heart and Stroke Foundation, 2016; Public Health Agency of Canada, 2009; Strachan et al., 2009; van Diepen et al., 2014). The prevalence of HF is increasing in part due to improved treatment and survival of precedent etiological causes including coronary artery disease (CAD) and hypertension (HTN) (Beattie, 2015; Butler & Kalogeropoulos, 2008; Johansen, Strauss, Arnold, Moe, & Liu, 2003; Kheirbek et al., 2013; Strachan et al.). As Kheirbek et al. (2013) have explained: “survival rates of patients with myocardial infarction (MI) continue to improve, but with that advance [in MI survival,] comes a rise in disabling heart failure; within 6 years of a MI 22% of men and 46% of women are disabled with HF” (p. 478).  Growth in the HF patient population is also expanding because HF prevalence increases with age (Butrous & Hummel, 2016). The population incidence of HF approaches 10 per 1000 by 65 years of age (Jessup & Brozena, 2003; Mozaffarian et al., 2016). By 80 years of age,    26 approximately 10 to 20 (meaning 100-200 per 1000) percent of people are affected (Campbell & McMurray, 2014; Chow et al., 2005; Howlett, 2011; Komajda et al., 2009; Lloyd-Jones et al., 2002; Mahjoub et al., 2008; Mozaffarian et al., 2014; Rutten, Grobbee, & Hoes, 2003). In Canada, older adults make up the fastest growing age demographic (Pesut et al., 2014); 2.2% of the population is aged 85 and older and about 13% are aged 65 and older (Statistics Canada, 2017). Together, the improved survival of CVDs, coupled with aging population trends, are expected to lead to continued increases in the prevalence of HF (Butler & Kalogeropoulos, 2008; Dunlay & Roger, 2014; Mosterd et al., 2001). These continued increases undergird why it is critical to understand more about the problem of reportedly poor-quality HF-EOL planning and care—indeed, many more people will be affected by HF and EOL planning and care issues will become increasingly important to this growing patient/family group.  2.1. Overview of Chapter Two The linkage between acute HF exacerbations, hospitalization, and mortality is important. As others have suggested, HF-exacerbation-related hospitalization and mortality outcomes indicate HCPs should be considering EOL planning and care—that is, HCPs working in acute settings should have a role in EOL planning and care. Thus, at the outset of this chapter, I review literature where HCPs roles in HF-related hospitalizations are explained.  The majority of deaths from most illnesses, including HF, take place in hospitals. Hence, in the second section of this chapter I discuss literature about dying and death in hospitals. I also explain EOL-related concepts including palliative care philosophy and the palliative    27 approach to care. In hospitals and elsewhere, palliative philosophy has had considerable influence on what is presently known about how best to care for patients with HF and their families facing life-limiting illnesses and EOL. Following this discussion about hospitals, mortality, and care for the dying in this chapter, I shift to the broader topic of chronic illnesses. Chronic illness management strategies are important in the care of many chronic illnesses; in the setting of HF in particular however, I argue that these strategies are critically important. This critical importance relates to a linkage between self-management and acute exacerbation events that may require hospitalizations (Booth, Fallon, & Hollis, 2016). And as HF hospitalizations relate to increased mortality, these management strategies also matter in the “EOL planning” domain of EOL planning and care. To fully explicate and understand this linkage, I present and discuss literature about chronic illness theory generally and HF-self-management concepts more specifically.  To close this chapter, I examine the especially complex issue of heterogeneity in the HF patient population. Heterogeneity relates to several factors including multiple etiological causes, illness stage and symptom burden, comorbidity and frailty burden, and therapy options. While I recognize much of this content is medically-focused and technically-oriented, my purpose is to bring to light to two ideas: the nuances of “knowing” this patient population; and, the inherent difficulties that clinicians face as they navigate the heterogeneity.     28 2.2. Hospitalization and Mortality: Prognostic Implications of Acute Decompensation Events and Current Dying Experiences   Hospitalizations for acute HF decompensation are indicative of poor prognoses (Howlett et al. 2010; Scrutinio et al., 2015; van Diepen et al., 2014). van Diepen et al. examined outcomes for n=5094 patients admitted to 224 hospitals and reported a 30% 1-year mortality for patients with HF who survive to discharge following admission for acute exacerbation. Scrutinio et al. reported similarly poor survival outcomes: “approximately 12-15% of the patients hospitalized for acute HF die within 12 weeks, and 30% within 12 months of admission” (p. 1076).  The association of HF-related hospitalization and mortality should be significant for HCPs working in acute care settings and indeed, may indicate the need to think about engaging patients in conversations about their wishes in relation to possible shifts their care goals and aims. For example, Howlett et al. (2010) argued that admissions to hospital (for decompensated HF) may signify the need to transition from “Stage I” management to “Stage II” (p. 137). In Stage I, Howlett et al. proposed that HCPs should offer patients with HF and their family members opportunities to participate in goals-of-care conversations, discuss expectations about their disease, and learn how to self-manage their chronic disease(s). In Stage 2, HCPs should engage patients and their family members in opportunities to re-visit and possibly renegotiate goals of care, discuss changes in their illness stage and prognosis, and support patients and their families prepare for subsequent deteriorations. In Stage II, patients and their family    29 members may also benefit from consultation and inclusion of specialty services when needed (e.g. specialist palliative care clinicians and teams). Recognizing that patients with HF commonly die in hospitals, Howlett et al. (2010) illuminate the role HCPs in acute hospital settings have in HF-EOL planning and care and transitions from Stage I to Stage II. Hospitals are complex settings that encompass a range of acute inpatient services and have influence on dying experiences and the care of patients with HF and their families with life-limiting illnesses at EOL.  2.3. Dying in Hospitals and the Care at End of Life: What is Known about Caring for Patients and their Families with Life-limiting Illnesses   In Canada, most people die in hospitals (Chan, 2014; Heyland, Lavery, Tranmer, Shortt, & Taylor, 2000; Kelley & Morrison, 2015; Komajda et al., 2007; Komajda et al., 2009; Wilson, Hewitt, Thomas, & Woytowich, 2014; Statistics Canada, 2019). Acute care settings (e.g. general medical units, cardiac units) are frequent locations for these in-hospital deaths (Chan, Macdonald, Carnevale & Cohen, 2017; Chan, 2014; Cross, 2013; Heyland et al., 2000). Critical care15 admissions are also common settings where patients receive EOL care (e.g. medical                                                   15 “Critical care” refers to hospital units that specialize in the provision of intensive, often invasive, treatment-focused care (Andresen, Guic, Orellana, Diaz, & Castro, 2015; Huynh et al., 2013). I explain these settings in more detail in section 2.3.1. below.    30 intensive care units (ICU), cardiothoracic ICU, cardiac care unit (CCU). For example, between one-fifth and one-third of people who die in hospitals receive some treatment and care in a critical care area (Bach, Ploeg, & Black, 2009; Canadian Institute for Health Information, 2016; Cook & Rocker, 2014; Cypress, 2010; Fowler & Hammer, 2013; Heyland et al., 2013; Kheirbek et al., 2013). As I will discuss in Chapter Four where I explain methodological considerations including study sites and sample, the diversity of the locations where patients and their family members access EOL planning and care (i.e. medical units, cardiac units, critical care) underscored why I aimed to include a range of perspectives that reflected the care in these locations and how this goal was supported by the design of my sample and study participant recruitment. 2.3.1. Dying in acute care settings: General and specialty areas/units in hospitals.  In hospitals, acute care practice areas (also called “units”) include both general settings such as general medicine and general surgery units, as well as specialty practice settings such as cardiac units, critical care units, and palliative care units. Conceptually, both general and    31 specialty settings are situated within broader, macro-level societal contexts, as I illustrated below (see Figure 2-1).  Figure 2-1: Acute care practice areas, general and specialty areas In general units, patient populations are diverse and are often admitted with “all-organ” causes. In contrast, specialty settings commonly focus on single organs (e.g. kidney, heart), groups of diseases (e.g. cancer, CVD), or particular HCP skills or expertise (e.g. critical care). In response to the complex pathophysiology of many chronic diseases, specialty practices have proliferated (Rothman & Wagner, 2003).  Each of these areas (i.e. general and specialist) has a role in both general illness management and in HF-EOL planning and care. While many patients receive care from generalists throughout their illness, in most instances where patients have complex medical conditions, specialists are also included. Gott, Seymour, Ingleton, Gardiner, and Bellamy (2011) explained how this decision is often made: “the specialist role...focuses on management of    32 ‘complex’ cases and providing support for generalist colleagues through partnership working” (p. 233). Generalists also deliver the majority of patient care in hospitals (Tu, Gong, Austin, Jaakimanian, & Tu, 2004) and throughout an entire illness trajectory, including HF-EOL planning and care. In partnership, specialist teams are consulted in situations where there is clinical complexity and greater expertise on a particular clinical issue is required, which is often the case in the HF patient population. I return to this point at the end of this chapter where I discuss heterogeneity and complexity in HF. 2.3.1.1. The cardiac specialty. The cardiac specialty is well established and a multitude of cardiac-focused services exist, especially in highly populated centers. In British Columbia, cardiac-specific services include both inpatient and outpatient resources. For example, cardiac medical units and cardiac intensive care units exist at several of the tertiary and quaternary hospitals. Outpatient services are also available and include programs such as cardiac rehabilitation, arrhythmia clinics, heart function clinics, and heart transplant clinics (Cardiac Services BC, 2011; Provincial Health Services Authority, 2018). These cardiac specialty settings also host a range of HCPs with specialty and sub-specialty training (e.g. HF and transplant physicians and nurses, cardiac pharmacists, cardiac dieticians, cardiac critical care physicians and nurses, cardiovascular surgeons, interventional physicians, etc.). Access agreements are in place throughout the province to promote access to these specialists.  While specialist cardiac services may be available, access and involvement of cardiac specialist clinicians is not automatic for all patients with cardiac disease. For example, having a    33 medical history that includes a serious cardiac illness does not secure acceptance of patients into specialty cardiac care units. In practice, admissions to specialty cardiac areas are typically for patients who present with primary cardiac issues such as new or decompensated HF requiring complex care (e.g. HF exacerbation requiring specific up-titration of cardiac medications). Individuals who may have complex cardiac disease histories including HF, who require hospitalization for non-cardiac causes (e.g. infection, sepsis, delirium), are more often admitted to general practice areas/units (e.g. acute medicine units)16. Admission processes vary with institutional procedures, physician preferences, and bed capacity management functions (Chang & Shapiro, 2016; Safavi, Dharmarjaran, Kim, Strait, Li et al., 2013). Other factors may also influence admission processes and decisions; for example, Komajda et al. (2007) found that octogenarians, who make up a considerable proportion of patients with HF, are more likely to be admitted to medical units and less likely to be referred to cardiac specialty units. While this age-related trend may align with patients’ care preferences, this trend may also be illuminating possible implicit age-related drivers—that is, where medical decisions may be based on HCPs’                                                   16 Of note, in my review of the literature, I found only limited published information about exactly how patients are admitted into specialty units. The admission trends described here reflect my understanding of what I have witnessed over the course of my own years of clinical practice.    34 assumptions and beliefs about patients’ care needs based on their age, rather than on the patient’s clinical indications or preferences. 2.3.1.2. The critical care specialty. Critical care areas specialize in the provision of intensive, often invasive, treatment-focused care (Andresen, Guic, Orellana, Diaz, & Castro, 2015; Huynh et al., 2013). The medical treatment and goals in critical care are commonly life-sustaining and saving and use invasive biomedical technologies. Chang and Shapiro (2016), for example, looked retrospectively at critical care admission data from 156,824 patient admissions in 94 different hospitals in Washington and Maryland, USA. Four admission diagnoses were examined: diabetic ketoacidosis, pulmonary embolism, upper gastrointestinal bleeding, and HF. Uses of invasive diagnostic and interventions were examined in relation to hospital-level ICU utilization (i.e. high ICU utilization hospitals compared to low ICU utilization hospitals). Chang and Shapiro found institutions using ICUs more frequently were also more likely to perform invasive procedures and use central venous catheters. Subsequently, costs in higher ICU utilization hospitals were also greater. Interestingly, despite the critical care procedures deployed, mortality rates were not improved in the higher ICU utilization group. Huynh et al. recommended critical care be considered a “therapeutic trial” with a plan to transition to from treatment-focus to support-focus when return to an acceptable health state is not expected (though in practice, this does not always happen).  Overall, patients with HF and their families experience high critical care admission rates; for example, van Diepen et al. (2014) found that approximately one-quarter of patients    35 hospitalized with acute decompensated HF are admitted to critical care. Safavi et al. (2013) reported that “one in five patients hospitalized with HF in the US are admitted to [critical care]” (p. 923). At EOL, Howlett (2011) noted that patients with HF are twice as likely to be admitted to critical care compared to patients with cancer. Critical care admissions may occur in part because the HF illness trajectory is typically characterized by periods of stability interrupted by episodes of acute exacerbation (Kheirbek et al. 2013). In some instances, these exacerbation episodes are treated with therapies where critical care expertise are needed (e.g. intravenous inotropes and vasopressors, mechanical ventilation, temporary dialysis systems, cardiac pacing, heart assist devices)(Vanderspank-Wright, Fothergill-Bourbonnais, Brajtman, & Gagnon, 2011). Patients’ needs for specialized monitoring equipment including cardiac telemetry or continuous blood pressure, may also contribute to critical care admissions.   Much like the admission processes described above about patients’ acceptance into cardiac specialty units, having critical illness does not automatically mean patients are admitted to critical care. For example, Chang and Shapiro (2016) described critical care utilization for several patient groups including those with HF: “systemic institutional factors” such as bed capacity, nurse-to-patient ratios, hospital protocols, and physician practice preferences influence critical care admission and utilization (p. 1497). Similarly, Safavi et al. (2013) reported: “the decision to admit patients to [critical care] may be a result of multiple factors, including the patients’ clinical status, practitioner discretion, institutional policies and procedures, and hospital capacity” (p. 923).     36 Both the systemic institutional factors (including practitioner discretion, institutional policies, etc.), and the patient-related related factors described above (e.g. age-related drivers), point at decision-making within structural aspects in the hospital and critical care contexts. For example, HCPs may view older patients as less likely to achieve the “cure” goal that is sought in the critical care and cardiac specialty settings. In scenarios where schemas include assumptions about a patients’ deserving or appropriateness for critical care and thus admission is denied, under-treatment might occur. Likewise, the intensity of care within specialty settings such as critical care, which are designed with treatment and cure-focused aims, may exceed what HCPs think ought to be achieved for people with chronic illnesses, including HF. This notion illuminates a possible schema—that is, a HCP’s belief—about the value or appropriateness of a “cure” goal for a particular patient; this notion also illuminates how schemas interface with resources such as the specialty areas to structure the care. In this example, the structured practice might result in admission to a general medical setting and exclusion from a specialty or critical care setting.   2.3.1.2.1. The experiences of dying in critical care. The nature of critical care as intense, intervention-focused settings can have detrimental effects for the patients and families who experience this type of care in late illness and at EOL. Dying in critical care areas is thought to be a difficult experience for patients (i.e. patients with HF and non-HF alike), families, HCPs, and the health care system more broadly. For example, Safavi et al. (2013) described decisions to triage admissions to critical care as having “high cost” for patients with HF, their families, and    37 the health care system. This “high cost” stretched beyond finances; for patients, Safavi et al. explicated several risks inherently associated with critical care admission including medication errors, delirium, hospital-acquired infections, and posttraumatic stress disorder. Sleep deprivation, painful procedures, fear, and disrupted light-dark cycles associated with critical care can also considerable sources of stress for patients (Andresen et al., 2015). In critical care, some patients with HF may face a death experience that they may not want, or may not have chosen, if given the opportunity to state their individual preferences in advance. In Goldstein and Lynn’s (2006) view, these preferences need to be considered well before an acute event that requires hospitalization. Indeed, Goldstein and Lynn claim that the existing lack of comprehensive advance care planning in the HF patient group “ensures that patients routinely receive life-sustaining treatments such as intensive care and mechanical ventilation, even if they would have preferred otherwise” (p. 12). Family members and caregivers are also thought to experience difficulty when patients die in critical care and may endure additional stress and worsened emotional consequences from experiences in critical care. Anxiety, depression, and posttraumatic stress disorder have been recognized in family survivors (Andresen et al. 2015; Gries et al, 2010). Wright et al. (2008) reported, “caregivers of patients who received any aggressive care [at the EOL] were at higher risk for developing a major depressive disorder, experiencing regret, and feeling unprepared for the patient’s death… they also had worse QOL outcomes” (p. 1668). In general, critical care admission experiences, particularly for patients who are dying and at the HF-EOL,    38 can be associated with negative outcomes for both patients and families (Andresen et al.; Coombs 2010; Gries et al.; Wright et al.).  2.3.1.2.2. Impacts on HCPs who support patients at EOL and their families in critical care settings. Health care professionals can also be affected when HCPs perceive the treatments and interventions given to patients with HF at EOL in critical care as inappropriate or unwanted. For example, Baggs et al. (2007) have found that HCPs have described uses of biomedical technologies in critical care as excessive at the EOL. For some HCPs, critical care areas are also seen to be inadequately equipped to support patients and their families due to inadequate focus on symptom management and fewer opportunities to involve families and ensure open visiting and access (Baggs et al.). Burnout, sadness, frustration, anger, withdrawal from patient/family care, work place attrition, and moral distress have all been identified as consequences of HCPs’ perceptions of poor quality EOL care (Hamric & Blackhall, 2007; Huynh et al, 2013; Lamiani, Setti, Barlascini, Vegni, & Argentero, 2017).    39 To further illustrate, Huynh et al. (2013) examined notion of “futile”17 treatments in critical care and looked at HCPs’ beliefs about the “futility” of the care they were providing. The researchers surveyed 36 critical care clinicians in 5 critical care units about the care of n=1193 patients. Clinicians were asked to assess instances of futile care. Clinicians were asked to make determinations of futility based several factors: burden of treatment outweighing benefit, treatment unable to achieve patients’ goals, treatments used when death seen to be imminent, or treatment used when survival outside of critical care was unlikely. From Huynh et al.’s findings, clinicians reported that 8.6% of patients “probably” received futile treatment and 11% “did” receive futile treatment, suggesting that HCPs working in critical care perceive nearly 20% of all care to have some degree of futility. Huynh et al. also calculated mortality outcomes for patients seen to be receiving futile care: “as expected, the hospital and 6-month mortality rates were significantly higher for patients perceived as receiving “futile” and “probably futile”18 treatment compared with patients perceived as receiving no futile treatment (p<.001)” (p. 1892).                                                   17 “Futility” is a value-laden word used in health care culture as an attempt to describe interventions or treatments that fail to meet a particular goal. In practice however, this word is commonly used without explication or clarification of what the goal actually is (e.g. “quality of life” or “length of life”?) and whose goals should be considered in evaluating a particular goal (e.g. a health care team or patients/families?). In recognition of this problematic underpinning, Truong and White (2013) suggested the term “potentially inappropriate” as an alternative.   18 Quotation marks added.     40 These findings point to the intensity of treatments and interventions used in critical care. The findings also point to a lack of clarity about patients’ goals and what they wanted in their care.  In summary, hospital settings generally, and critical care environments specifically, do not necessarily meet the needs of patients at the EOL. “Studies of the care dying people receive in acute hospitals provide evidence that hospital nurses experience difficulties meeting their needs and those of their families” (Hopkinson, Hallett, & Luker, 2003, p. 526). Commonplace attributes such as restricted visiting hours, excessive noise, space restrictions, heavy nursing workloads, limited nurse-patient interactions, and inflexible schedules often mismatch care with patients’ and family members’ needs during the EOL and may erode the quality of death (Andresen et al., 2015). Difficulties meeting patients and their families’ needs in hospitals is in part related to the focus of these settings; that is, acute and treatable illnesses (Thorne, Roberts, & Sawatzky, 2016). Indeed, many patients facing EOL, including those with HF, express a preference to die in non-hospital settings. This preference to die in non-hospital settings is one example of what is currently known about how to support patients and their family members plan, prepare for, and experience EOL. 2.3.2. The care needs for patients with life-limiting illnesses and their families. The needs of dying patients EOL and their family members are well described in the literature (Coombs, 2010; Curtis & Engelberg, 2006; Hamric & Blackhall, 2007; Heyland et al., 2000; Heyland et al., 2006; Howlett, 2011; Stajduhar, 2011; Steinhauser et al., 2000). In general, excellent quality EOL care is care that aligns with a patient’s own preferences and involves early    41 incorporation of palliative care principles, including quality of life (QOL) emphases (as defined by the patient), symptom management, relief of suffering, an individualized whole-person approach throughout the illness trajectory, and family support. In HF specifically, symptoms can be severe. Many patients endure anxiety, breathlessness, pruritus, and delirium (Goldfinger & Adler, 2010; Howlett, 2011; Jaarsma et al., 2009; Setoguchi et al., 2010). Other symptoms for patients with late-stage HF include profound activity intolerance; loss of independence and social isolation; fatigue and malaise; and fluid retention (Godfrey, Harrison, Medves, & Tranmer, 2006; Goebel et al., 2009; Goldfinger & Adler, 2010; Jaarsma et al., 2009; Low, Pattenden, Candy, Beattie, & Jones, 2011; O'Leary, Murphy, O'Loughlin, Tiernan, & McDonald, 2009; Setoguchi et al., 2010; Shah et al., 2013; Zambroski, Combs, Cronin, & Pfeffer, 2009).  Beyond symptom control, care needs at EOL also include retaining some control; participating in opportunities to strengthen or resolve familial relationships; ongoing and honest communication with HCPs; engaging in planning and goal-setting; attending to psychosocial and spiritual needs; and preparing for death (Detering, Hancock, Reade, & Silverster, 2010; Heart Failure Society of America, 2010; Heyland et al. 2013; McKelvie et al., 2011; Sinuff et al. 2015; Steinhauser et al., 2000; Zambroski, 2004). The palliative care model is a conceptual framework that outlines several core principles to support patients and their families prepare for EOL and address the complex array of needs associated with dying, death, and bereavement. While the palliative care model and related principles aligns with what patients and family members need at EOL, for patients with HF, access to this care model is limited.    42 2.3.2.1. The traditional palliative care model. Traditionally, the term “palliative care” has been used to describe a holistic care model based on a set of principles that have been evolving since the late 1960s (“palliative care” often also refers to specialist clinicians, which I will explain below). Palliative care principles were originally intended to meet the needs of patients/families with life-limiting malignancies (Clark, 2008; Kelley & Morrison, 2015). Palliative care principles include: a whole-person approach to care that includes psychological, spiritual, and logistical support; interdisciplinary involvement, planning and preparations for EOL, supportive decision-making and goal setting, and coordination of complex care; and attention to ameliorating suffering and treating the range of symptoms associated with the end-stages of disease progression (Carstairs, 2010; Goldfinger & Adler, 2010; Kavalieratos, Mitchell, Carey et al., 2014; Kelley & Morrison, 2015; Low et al., 2011; McKelvie et al., 2011; Mino & Lert, 2005; Meyers & Goodlin, 2016; World Health Organization, 2017). Increasingly, these palliative care principles are seen as appropriate for many more people with life-limiting illnesses regardless of the disease etiology or illness course (Kelley & Morrison). Integration of palliative care principles has shown to improve symptoms, QOL, and satisfaction across a range of populations with life-limiting illnesses including cancer, lung disease, multiple comorbidities, and frailty (Kelley & Morrison; Kristjanson, 2005).     43 As is reflected in Figure 2-2 below, the traditional model of palliative care largely reflects what was previously thought to be an expected illness trajectory for patients with cancer (Clark, 2008; Kelley & Morrison, 2015) (see Figure 2-2).  Figure 2-2: The traditional palliative care model. From “Living Well at the End of Life Adapting Health Care to Serious Chronic Illness in Old Age” by J. Lynn and D. Adamson (2003). Copyright 2003 by RAND. Reprinted with permission. The illness course illustrated in the palliative care model in Figure 2-2 represents patients who retain a fairly high level of functioning from the point of diagnosis. During this period of high functioning, goals of care are “treatment” and “aggressive medical care” is provided. The patient’s illness course is then abruptly interrupted by a marked deterioration point (indicated on Figure 2-2 by the shift from light gray to dark gray), followed by a period of rapid decline until death. During the period of rapid decline, care goals shift from “treatment” to “hospice care” (i.e.    44 non-curative, not aimed at treatment, support-focused) (Goodlin, 2009; Lunney, Lynn, Foley, Lipson, & Guralnik, 2003; Murray et al., 2005).   Patients with HF do not easily fit within the traditional palliative care model because the illness often lacks the distinguishable deterioration point. Lunney, Lynn, and Hogan (2002) and Lunney et al. (2003) proposed four models of dying trajectories: sudden death, terminal illness, frailty, and organ failure. The trajectory of organ failure (includes HF) is pictured below (see Figure 2-3):    45 Figure 2-3: Illness trajectories  The illness trajectories of cancer, organ failure (including heart), and frailty and dementia. From “Living Well at the End of Life Adapting Health Care to Serious Chronic Illness in Old Age” by J. Lynn and D. Adamson (2003). Copyright 2003 by RAND. Reprinted with permission.    46 As is illustrated Figure 2-3 above, from the time of diagnosis, patients with HF have diminished functional capacity. Episodes of acute exacerbation occur repeatedly throughout the illness course. Following each acute event, a patient with organ failure may regain some recovery; however, they return to a new, diminished baseline with less functional capacity. Death from HF is not necessarily predictable and is often perceived to be sudden. Patients do not necessarily experience a marked moment of decline that signifies the beginning of the EOL period. In Gott, Seymour, Ingleton et al.’s (2011) view, palliative care was previously synonymous with the term “terminal care”19 for patients with cancer but has come to be seen as an approach that is relevant for any patient where death from illness is anticipated; that is, the palliative care model has evolved to better support non-cancer illness trajectories (i.e. the terminal illness model). Stajduhar (2011) named this evolution and expanded application of palliative principles the palliative approach to care. 2.3.2.2. The palliative approach to care. The palliative approach differs from the palliative care model and may better match patients’ and family members’ needs in organ failure                                                   19 There are many different terms that are used to described EOL care and experiences—Collectively, I came to call these terms “EOL-related words and phrases.” The understandings and meanings of these words differs, depending on the individual. Indeed, this is a major theme of findings in this dissertation, which I explore in Chapter Six.     47 (e.g. HF) illness trajectories. Chronic illness self-management, integration of palliative care principles, effective and ongoing communication about illness issues and EOL planning, and specialist palliative care services when appropriate, underpin quality care through an entire life-limiting illness trajectory, including the final EOL stage. Collectively, these elements have been described within a framework called the palliative approach to care (Canadian Nurses Association, Canadian Hospice Palliative Care Association & Canadian Hospice Palliative Care Nurses, 2015; Kristjanson, 2005; Reimer-Kirkham et al., 2015; Sawatzky et al., 2016, Stajduhar, 2011). The palliative approach expands the application of palliative knowledge to a wider range of patients, to be delivered by all HCPs regardless of practice area or specialty expertise, and irrespective of patients’ diagnosis and stage of disease progression:  A palliative approach does not closely link the provision of care with prognosis, but focuses on conversations with patients/families about their needs and wishes; comfort measures; support for psychosocial, spiritual, and cultural issues; information requirements; and provisions for death and for care after death (Stajduhar, 2011, p. 10). As illustrated below (see Figure 2-4), the diagnosis of any life-limiting illness begins with treatment-focused (i.e. “disease modifying or potentially curative” focus) care (Gott, Seymour, Ingleton, Gardiner, & Bellamy, 2011). The palliative approach however differs from the    48 traditional palliative care model because it simultaneously involves “symptom management, palliative” through the early “curative” phases of the illness trajectory.  Figure 2-4: The palliative approach to care, new model From “Living Well at the End of Life Adapting Health Care to Serious Chronic Illness in Old Age” by J. Lynn and D. Adamson (2003). Copyright 2003 by RAND. Reprinted with permission.  As the illness progresses, the emphasis on treatment-focused care wanes, and supportive/palliative care increases. The palliative approach also emphasizes “family bereavement” care after death (Goodlin, 2009; Lunney et al., 2003; Lynn & Adamson, 2003; Murray et al., 2005). Communication is one of the pillars of the palliative approach to care. Stajduhar (2011) articulated this point by describing the palliative approach as a relational, communication-based health care strategy appropriate for all people with any life-limiting illness through the entire    49 disease trajectory. Pesut et al. (2014) built on Stajduhar’s work to describe the palliative approach similarly, focusing on conversations: “the term palliative approach refer[s] to a philosophy of care that includes conversations about goals of care and the supportive principles of palliative care in an upstream approach in any care setting where people with life-limiting conditions are cared for” (p. 47). Indeed, in Bernacki et al.’s (2015) view, the provision of EOL care that is consistent with individuals’ values, preferences and care goals is a “critical component of high-quality care” (p. 1)—and communication is a foundational aspect of how these values, preferences and care goals come to be known. As I introduced in Chapter One and noted in an earlier section of this chapter, this upstream communication (i.e. “EOL planning”) is under-utilized in the HF patient/family population and is likely related to the frequency of hospitalization in HF and associated poor-quality EOL experiences.  Three core characteristics distinguish the concept of the palliative approach to care from the traditional palliative care concept. First, there is upstream integration and intentional focus on understanding and addressing the needs of patients with life-limiting illnesses. Secondly, there is a broader application of palliative care principles to all individuals with life-limiting illness, regardless of diagnosis. And thirdly, there is engagement and inclusion of all HCPs in all areas where patients and their families access care, and inclusion of palliative care specialists, when appropriate (Reimer-Kirkham et al., 2015; Sawatzky et al., 2016). The successful integration of the palliative approach seeks to achieve three key goals: first, it may improve EOL planning and care experiences overall. Secondly, it may begin to address the widespread issue    50 of limited access to palliative care specialty services and thus bring into focus issues and care needs related to advanced illness and death (e.g. symptoms, grief, bereavement). And lastly, and perhaps most importantly, because it is communication-focused, integration of the palliative approach may ensure that the EOL care provided aligns with patients’ preferences. The Honorable Sharon Carstairs (2018) summarized this shift in understanding about what palliative care means in a short video: “People tend to think that palliative care is about dying. I think it’s about living. And I think it’s about living well until the very end” (Pallium Foundation of Canada, 2018). Clinical leaders and cardiac expert consensus statements from nursing and medicine support broad applications of palliative care knowledge and ACP and EOL communication via the integration of a palliative approach for patients with HF (and their family members) from all HCPs regardless of clinical specialty (Canadian Council of Cardiovascular Nurses, 2015; Canadian Hospice Palliative Care Association, 2015; Canadian Nurses Association, 2015; Canadian Nurses Association, Canadian Hospice Palliative Care Association & Canadian Hospice Palliative Care Nurses, 2015; Jaarsma et al., 2009; McKelvie et al., 2011). The benefits of improved communication via early integration of the palliative approach, consideration and incorporation of palliative care principles, and the involvement of specialist interdisciplinary palliative care clinicians (when needed), are well established. Importantly, upstream communication and planning activities emphasize identification of patients’/families’ individual preferences, wishes, and goals and thus promote the delivery of EOL care that is aligned with    51 patients’ actual wishes. For example, HF-EOL-focused care can include conversations about ongoing care such as reevaluating pharmacological management and redefining the patients’ goals of care, planning for future acute exacerbations (e.g. identifying substitute decision-makers), discussing disease expectations and prognosis, and consultation with palliative specialist clinicians (Ezekowitz, O'Meara, McDonald, Abrams, Chan et al., 2017; Jaarsma, Beattie, Ryder, Frans, McDonagh et al., 2009; Kavalieratos, Gelfman, Tycon, Riegel, Bekelman et al. 2017; Ryder, Beattie, O’Hanlon, McDonald, 2011). Incorporation of palliative care principles and involvement of palliative care specialists are also beneficial and may lead to improved QOL and mood for patients, fewer uses of unwanted aggressive treatment-focused medical interventions prior to death (e.g. better documentation of resuscitation preferences), and lengthened survival (Kavalieratos, Mitchell, Carey et al., 2014; Temel et al., 2010; Wong et al., 2016). Families’ experiences are also improved. Indeed, early integration of palliative care principles and specialists are associated with improved depression scores and QOL for family caregivers (El-Jawahri et al., 2017; Dionne-Odom et al. 2015; Fuerst, 2016).  2.3.2.3. Distinguishing the palliative approach from palliative care specialist programs and clinicians. In addition to the two models described above (i.e. the palliative care model and the palliative approach), palliative care is also a term that is used to describe a specialty program (similar to the cardiac and critical care specialties described above). Palliative care programs are commonly made up of specialist palliative care clinicians and practice    52 settings (e.g. specialty palliative care units, specialty palliative care outpatient services) (Nordgren & Olsson, 2004; Kavalieratos, Mitchell, Carey, Dev, Biddle et al., 2014; Quill & Abernethy, 2013). Palliative care services may also include government and social programs such as palliative care tax benefits, caregiver benefits, and/or access to home care supports. Specialty palliative care programs and clinicians were established in the late 1960s primarily to address the care needs for patients with life-limiting malignancies; palliative care programs continue to remain tightly aligned with oncology (Clark, 2008; Quill & Abernethy; Twycross, 2002). In the last ten years, palliative care specialist programs have grown by more than 150 percent (Kelley & Morrison, 2015). In the United States for example, ninety percent of large hospitals (more than 300 beds) and around two-third of smaller hospitals (more than 50 beds) have some type of palliative care specialty service (Kelley & Morrison; National Palliative Care Registry, 2015). In Canada, “except for Yukon and the Northwest Territories, all jurisdictions have beds or units in hospitals dedicated to providing palliative care services. In some areas, the bulk of palliative care services are located in hospitals” (Canadian Institute for Health Information, 2018, p. 18) Palliative services are commonly delivered by interdisciplinary outreach consult teams; occasionally, care is provided in specialist palliative care inpatient units. Most patients with HF do not die in these specialty palliative care settings (e.g. palliative care units, hospice). Compared to patients with cancer, patients with HF have less access to palliative specialty settings such as hospice (20% vs. 51%). Overall, Howlett et al. (2010) noted that patients with    53 cancer constitute more than 90 percent of the patients who receive EOL planning and care but malignancies only account for approximately one-quarter of the total deaths in Canada20 (p. 138). In contrast, CVDs contribute to one-third of the overall mortality, yet equivalent delivery of both important preparations for EOL care, and the delivery of palliative-oriented EOL care, are remarkably lacking (Hauptman et al., 2008; Howlett, 2011; Setoguchi et al., 2010). As Storch, Starzomski, and Rodney (2013) have explained:  Despite numerous calls for greater access to palliative care across Canada, many Canadians do not have access to such care as they enter their final months and days... at this time for instance, only a small majority are admitted to hospice, while thousands die waiting to get into hospice or other programs of palliative care (p. 349).  As I described above, greater integration of a palliative approach has been suggested as one strategy to both improve HF-EOL planning and care experiences overall, and to address the widespread issue of limited access to palliative care specialty services and programs. The palliative approach promotes the integration of the principles of palliative care to a wider patient                                                   20  I am not suggesting that the total existing palliative-oriented EOL care services are sufficient to meet the needs of all patients and families facing death. Indeed, reports suggest that many people lack coordinated, quality EOL care and have limited access to palliative specialty services (Howlett et al., 2010; Kelley & Morrison, 2015).    54 population and regardless of disease etiology. The palliative approach can also be applied in all care settings including acute care in hospitals, and by all HCPs including non-palliative specialist clinicians. For the HF patient population, integration of the palliative approach guides HCPs (non-palliative specialists and palliative specialists alike) to attend to the diversity of individual patient/family needs, address issues of EOL planning and care early and repeatedly throughout disease trajectory, and co-create differentiated and tailored programs of care through the course of the chronic illness, including EOL and death. Indeed, the palliative approach may be a goal toward which HCPs in hospital settings can work.  The palliative approach to care also aligns well with the chronic illness management theory and principles. Chronic disease/illness management is a term that has been used to describe helpful approaches for people with chronic illnesses, including HF. I will therefore move next to this broader topic of chronic illnesses and I will situate HF in relation to the notion of chronic illness management. In the section forthcoming, I emphasize how self-management aligns with chronic illness management and in the HF patient population, also uniquely aligns within EOL planning and care.  2.4. Chronic Illness Management: Exploring the Unique Care Needs for Patients with Chronic Illnesses such as HF Chronic illnesses are defined as conditions that exceed three-months duration and do not self-limit (Institute of Medicine, 2001). Chronic illnesses including HF impact a substantial number of people in Canada. Diseases such as cancer, diabetes, and respiratory and CVD are    55 widely prevalent. Given the demographics of aging presented at the beginning of this chapter, along with other collateral socio-political-environmental changes such as poverty and pollutants, the prevalence of many chronic diseases is expected to grow (Penning, 2002; Rothman & Wagner, 2003; Thorne, 2008a; Thorne, Roberts, & Sawatzky, 2016; Thorpe & Philyaw, 2012; Wagner et al., 2001). In British Columbia specifically, the prevalence of all chronic conditions is forecasted to increase by 58 percent over the next 25 years (British Columbia Ministry of Health, 2013). Many chronic pathologies are life-limiting conditions that will culminate in dying and death (Canadian Institute for Health Information, 2018; Goodlin et al., 2004; Hauptman & Havranek, 2005; Statistics Canada, 2012). While uncertainty permeates most aspects of chronic illness experiences generally, in the setting of many CVDs including HF, there are also particular and significant uncertainties concerning the length of life expectancy, QOL, and the trajectory of death.   Chronic disease processes are characterized by attributes that differ from acute, episodic illnesses (Institute of Medicine, 2001; Thorne, Roberts, & Sawatzky, 2016; Wagner, Austin, & Michael Von Korff, 1996). Acute illnesses usually manifest suddenly from distinguishable origins and health care is treatment-focused and aimed at restoration. Chronic disease processes however, are less linear and often appear gradually; progress and evolve; and are generally brought on by multivariate etiological causes (Holman & Lorig, 2004; Penning, 2002; Wagner et al., 1996). As noted in a section above, individuals and their families who coexist with chronic illnesses endure difficult and multifaceted challenges and must cope with    56 uncertainty amidst a myriad of health and social issues. Such issues may include accessing and navigating health care services; adapting to extensive interpersonal changes in areas such as work and finances, family, and social roles; preventing further disease complications and curtailing illness progression; living with a diverse range of unpleasant physical symptoms (e.g. chronic pain, debilitating fatigue, restricted mobility, dyspnea, and so forth); and managing a multitude of psychological and/or emotional impacts (McKelvie et al., 2013; Wagner et al, 1996; Wager & Groves, 2002). Moreover, the challenges and issues with chronic diseases change and evolve as the disease course unfolds; new issues continually arise with different stages of disease progression (Holman & Lorig, 2004).  2.4.1. Models of care for people with chronic illnesses. Since the 1990s, Wagner and colleagues have written extensively on the particular health care needs of people with chronic illnesses. Wagner et al. (2001) used a helpful metaphor to describe the scope of health care needs, likening the complexity of coordinating and managing chronic illness(es) to piloting a small aircraft. The pilot of the plane is the individual living with a chronic illness. Health care professionals are meant to provide support to the pilot; keeping the aircraft in-flight and assisting the journey by ensuring the pilot has strong flying skills, a safe plane, a mutually understood flight plan, and access to a control tower for regular communications and updates.   Wagner et al.’s (2001) piloting metaphor illuminates three essential components of an effective chronic illness care model: communication and continuity; knowledge and decision-making capacity; and self-management (Rothman & Wagner, 2003; Wagner et al., 1996;    57 Wagner et al., 2001). Communication is typically regarded as the foundation of chronic illness care because patients and their families are instrumental observers of their continually unfolding physical and emotional status. Using communication, information and knowledge about the disease and its impacts, should transfer reciprocally between the patient/family and HCPs. Just as pilots must learn about their aircraft and how to fly, individuals and families experiencing chronic illnesses require varying amounts of information about their unique physiological responses to the disease process (Holman & Lorig, 2004; Lorig et al., 1999). Wagner et al. (2001) called self-management the third essential component of chronic illness care, noting that self-management is built on communication, knowledge, and shared decision-making. In HF in particular, self-management is an essential component of care because many acute exacerbation events that may require hospitalization and be associated with morbidity and mortality can be avoided by HF-specific self-management strategies.        To achieve these three chronic illness care goals—that is, communication and continuity, knowledge and decision-making capacity, and self-management—Wagner et al. (2001) argued that a person living with chronic illness(es) must be strategically supported by    58 HCPs21. For instance, patients and families living with a chronic illness (or illnesses) need to be assisted by HCPs to gain the skills and confidence to self-manage their illness; have access to appropriate treatments and services to prevent disease complications; participate in the development of individualized and evolving health care plans; and receive regular and long-term follow-up with their HCPs (Wagner et al., 2001, p. 66).  Wagner et al.’s (2001) metaphor for coordinating and managing chronic illness issues can be simplified by a chronic illness health care model that is underpinned by two foundational principles: HCP-patient/family relationships must nurture illness knowledge development and foster self-management skills; and health care systems and services ought to reflect, nourish, and facilitate such HCP-patient/family interactions. Goodlin et al. (2004) summarized HF management as “chronic illness care interspersed with hospitalization and aggressive rescue efforts” (p. 201).                                                   21 Thorne, Roberts, and Sawatzky (2016) have articulated critiques about this approach, highlighting the potentially problematic responsibilities placed on patients, with increasingly problematic implications where supports are inadequately available and/or there is failure to address other socioeconomic issues that contribute to chronic illness: “Nurses also began to recognize there were inherent challenges associated with the limited vision of [chronic illness management models] in that it devolved increasing levels of responsibility down to the level of patients and families, often without the necessary community-based infrastructure supports in place” (p. 94).      59 2.4.2. Self-management: A key chronic illness management strategy for patients with HF. One of main focuses in HF management and therapies is to minimize acute exacerbations and prevent rehospitalizations (Bergethon et al., 2015). This focus is central because mortality outcomes are worse for individuals who experience episodes of decompensated HF. Acute HF exacerbations also commonly result in Emergency Department (ED) and hospital-use (Godfrey et al., 2006; Hasegawa, Tsugawa, Camargo, & Brown; 2014; Wan, Terry, Cobb, McKee, Tregerman, et al. 2017). Godfrey attributed such exacerbations directly to breakdowns in the self-management processes. Building self-management skills is particularly important for people with HF because lifestyle modification and careful self-monitoring are cornerstones of effective disease management and are used to prevent episodes of acute, decompensated HF. Self-management is well articulated in HF care and is defined as “the individual’s ability to manage symptoms, treatment, physical and psychological consequences, and the lifestyle changes inherent in living with a chronic condition” (Mikkonen & Hynynen, 2012, p. 397). Cardiac expert guidelines include specific self-care activities and recommendations (Howlett et al., 2016) and emphasize three elements of HF self-care which are: maintenance, monitoring, and management. Beattie (2019) summarized the role of self-management in HF in relation to the broader context of cardiology care:     60 Heart failure care is embedded within a relatively rigid biomedical model22 as enshrined in national and international heart failure societal guidelines. The widely advocated care structure is founded on a clinician-led multidisciplinary team approach, bolstered by patient education to promote self-management, but commonly there is a lack of coordination and poor communication between healthcare professionals, patients, and their families. Yet, much of the everyday care of those with heart failure depends on the support of family members, often their spouses, or other close relatives, or indeed people from their wider social circle. These individuals offer an array of assistance in providing general care, promoting heart failure-related dietary and medication adherence, and straightforward practical support in facilitating clinic attendances (p. 1)                                                   22 The biomedical model is constructed on several assumptions: symptoms and illness relate to a pathological process (e.g. disease); health is the absence of disease; patients are passive recipients of treatment; and compliance with prescriptive regimens is integral (Bolaria, 2002; Borrett, 2013; Fuller, 2017; Noguchi, 2012; Wade & Halligan, 2004; Wagner, Austin, Davis, Hindmarsh, & et al, 2001).   Acute care services reflect the biomedical model because they aim to address acute illnesses, usually in the format of diagnosing, prescribing treatment, and seeking illness resolution (Booth, Fallon & Hollis, 2016; Reuben & Tinette, 2014; Rothman & Wagner, 2003; Steinman & Auerbach, 2014). Likewise, the related clinical competencies expected from HCPs working in acute care hospital settings reflect this biomedical focus, which I show in Chapter Five where I present findings about how particular patient information and tasks are prioritized.     61 To assist with self-care with HF, in British Columbia a large library of patient/family teaching materials is freely available online with information about key topics within the elements of maintenance, monitoring, and management including daily weights, sodium restriction, early warning signs, medications, and many others (BC Heart Failure Network, 2019).  Hospitalizations can result from breaks in self-management; and as I have indicated earlier, hospitalizations are associated with death. This relationship underscores how illness education and self-management fits in with EOL planning and care. This relatedness between self-management, hospitalizations, and mortality aligns within what Howlett et al. (2010) have described as the first stage of HF support: create opportunities for patients and their families to participate in goals-of-care conversations, discuss illness expectations, and learn how to self-manage. Indeed, the particular skills that HCPs need to support patients with self-management are complex. The content I have presented in this section provides a foundation through which to consider the findings I present in Chapter Five. In Chapter Five, I present and discuss study data that illuminates the difficulties that some HCPs in acute care settings have in simply seeing HF—that is, in actually identifying HF from the many concurrent illnesses and admission causes that patients present to hospitals with. As I will also show from my study findings, study participants explicated other aspects of “HF-EOL planning” as difficult, including ascertaining the “timing” of when to start thinking about EOL issues. Such difficulties relate in part to heterogeneity in the HF patient population, which I will explore next.     62 2.5. Heterogeneity in Heart Failure: Comorbidities and Frailty, and Illness Trajectory The HF patient population is heterogeneous. Heterogeneity relates in part to the common presence of concurrent and often multiple chronic illnesses. Other age-related complications including frailty are also common. Coupled with a diverse etiological picture and a substantial range of increasingly effective therapies (e.g. pharmaceuticals, biomedical technologies), the HF patient population is increasingly heterogenous. While the content in this section is technical and largely medically-focused, I provide this detailed overview in order to illuminate the depth and degree of clinical knowledge and expertise that HCPs use to support this patient population. Heterogeneity is also important because it adds to the uncertainty in the illness trajectory and the optimal “timing” of EOL planning and care.  There are different types of HF, variable etiologic causes, grades of associated symptoms and disease progression, and divergent degrees of comorbidity burdens. To capture the range of HF symptoms, the New York Heart Association (NYHA) classification 4-point scale is used to convey symptom severity based on patients’ reported limitations  (Dolgin & New York Heart Association. Criteria Committee, 1994)  (see Table 2-1).  Table 2-1: The New York Heart Association (NYHA) Functional Classifications  Class Degree of symptoms with physical activity and at rest I – mild Asymptomatic with ordinal physical activity, no limitations on physical activity, and comfortable at rest  II – mild Symptoms with ordinary activity, slight limitations on physical activity, and comfortable at rest     63 Note: Reprinted directly from British Columbia Ministry of Health (2015)   Disease progression can be estimated using the American Heart Association (AHA) staging system. Stage “A” describes people who are at high risk for HF but do not have cardiac abnormalities (Jessup & Brozena, 2003). Stage “D” represents advanced and end-stage HF and is signified by the occurrence of refractory symptoms despite maximal therapies. Approximately ten percent of people living with HF are classified as advanced (stage D) (American Heart Association, 2018). Hospitalizations for HF often result when patients experience NYHA III and IV. Table 2-2: Heart Failure Staging Note: Reprinted from the AHA and American College of Cardiology’s A-D staging system (American Heart Association, 2018) III – moderate Symptoms with less than ordinary activity, noticeable limitations on physical activity, and comfortable at rest  IV – severe  Symptoms at rest, unable to perform any activity Class Objective Assessment  A No objective evidence of cardiovascular disease. No symptoms and no limitations in ordinary physical activity  B Objective evidence of minimal cardiovascular disease. Mild symptoms and slight limitation during ordinary activity. Comfortable at rest.  C Objective evidence of moderately severe cardiovascular disease. Marked limitation in activity due to symptoms, even during less-than-ordinary activity. Comfortable only at rest.  D  Objective evidence of severe cardiovascular disease. Severe limitations. Experiences symptoms while at rest.     64 2.5.1. Etiology and pathophysiology. Heterogeneity in the HF patient population in part stems from the different etiological origins and concurrent pathophysiological conditions, which are often other chronic illnesses. Heart failure manifests from diverse etiologic causes including HTN, valvular heart disease (e.g. aortic stenosis, mitral regurgitation), ischemic heart disease (IHD), and cardiomyopathies (Ho et al., 2013; Jessup & Brozena, 2003; Johnson, 2014; McMurray et al., 2012). These conditions contribute to hemodynamic abnormalities that stimulate systemic activation of compensatory neurohormonal responses (e.g. sympathetic nervous system, renin-angiotension-aldosterone (RAA) pathway) (Gibson & Nordby, 2014; Gibson & Raphael, 2014; Johnson; Sayer & Bhat, 2014). While initially helpful for improving stroke volume and cardiac output (CO), prolonged neurohormonal activity becomes maladaptive and contributes to a negative process called ventricular remodeling (Udelson & Konstam, 2011). Cardiac cellular changes associated with remodeling result in further deterioration of myocardial function and ventricular dilation, which bring about worsened hemodynamic irregularities (e.g. elevated end-diastolic pressure, tachycardia)  (Jessup & Brozena, 2003; McMurray et al., 2012). Currently, two categories are used to describe HF: HF with reduced ejection failure (HF-REF) and HF with preserved ejection fraction (HF-PEF)(Arnold et al., 2006; Campbell & McMurray, 2014; McMurray et al., 2012; Meta-analysis Global Group in Chronic Heart Failure, 2012). Ejection fraction (EF) impairments seen in HF-REF reflect systolic dysfunction associated with inadequate contractile capacity. In contrast, people with HF-PEF often have    65 adequate systolic function (commonly EF ≥50%) with diastole impairment due to hypertrophic myocardial changes and/or impaired relaxation.  Conditions that contribute to HF-PEF differ from HF-REF. Female sex23, HTN, and atrial fibrillation more commonly precipitate HF-PEF (Campbell & McMurray, 2014; Duca et al., 2018; McMurray et al., 2012; Meta-analysis Global Group in Chronic Heart Failure, 2012; Scantlebury & Bourlaug, 2011). In contrast, ischemic heart disease underlies approximately two-thirds of HF-REFs. Viral, chemical (e.g. alcohol, chemotherapy), and idiopathic causes make up other common etiological origins of HF-REF (McMurray et al., 2012). Though similar one-year mortality outcomes have been described in HF-REF and HF-PEF (Arnold et al., 2007; Jessup & Brozena, 2003), more recent literature has reported worsened mortality outcomes for patients with HF-REF compared to HF-PEF (Meta-analysis Global Group in Chronic Heart Failure, 2012).  Cardiac output (CO) is decreased in both HF-REF and HF-PEF. Inadequate CO triggers the prolonged activation of compensatory neurohormonal responses and remodeling ensues. Tachycardia, sodium and water reabsorption, and vasoconstriction lead to persistently elevated                                                   23 The concentric thickening and stiffening of the left ventricular that occurs in HF-PEF is thought to be a sex-related maladaptive response to aging and HTN in females (Scantlebury & Bourlaug, 2011)     66 filling pressures. Congestive HF symptoms (e.g. pulmonary edema, peripheral edema) and the effects of increased intracardiac pressures (e.g. arrhythmias) result (Sayer & Bhat, 2014). Other common HF symptoms, including diminished activity tolerance and exhaustion also result from continually poor CO. The presence of comorbidities and concurrent frailty also contributes significantly to heterogeneity.  2.5.2. Comorbidities and frailty. Heart failure is commonly complicated by the presence of multiple comorbidities (Butrous & Hummel, 2016; Goodlin et al., 2004; Howlett et al., 2010; Kheirbek et al., 2013; Komajda et al., 2009; Rozzini, Sabatini, Frisoni, Trabucchi, 2003). Up to 80 percent of people with newly diagnosed HF have previous HTN, 40 percent have previous diabetes, and nearly half have previous IHD (British Columbia Ministry of Health, 2015). “Patients with HF-PEF have a higher burden of non-cardiovascular comorbid diagnoses when compared with those having HF-REF” (Butrous & Hummel, 2016, p. 1141). Stroke/transient ischemic attack, impaired renal function, and chronic obstructive pulmonary disease are more seen more frequently in octogenarians with HF (Komajda et al., 2009). “One obvious explanation of why patients with end-stage HF have different [illness trajectories] could be their comorbidities” (Kheirbek et al., 2013, p. 479).  McMurray et al. (2012) described four reasons that comorbidities are important in patients with HF: recommended treatments may be contraindicated in the presence of other-organ illness (e.g. renal dysfunction); therapies used to treat other conditions may worsen HF (e.g. chemotherapy); treatments in HF may counteract treatments used for other illness (e.g.    67 beta-blockers and asthma); and, most comorbidities are indicators of poorer prognosis (e.g. diabetes). Chronic illness and comorbidities have substantial impacts on QOL for patients and their families and involve emotional commitments, altered daily activities and routine, sleep disruptions, financial costs, and changes in social life (Golics, Basra, Salek, & Finlay, 2013). In addition to comorbidities, frailty in HF is also common and may also be a risk factor for developing HF (Afilalo et al., 2014).   Frailty24 is defined as an age-related, multi-system system syndrome characterized by increased risk of adverse events (e.g. deterioration, death) when exposed to stressors (e.g. hospitalization, illness) compared to people the same age (Fried et al., 2001; Gibson & Crowe, 2018; Morley et al., 2013; Rockwood, 2016; Rockwood et al., 1999; Rockwood, Fox, Stolee, Robertson, & Beattie, 1994). Frailty may contribute to the physical heterogeneity seen in older adults and can reflect biological rather than chronological age (Afilalo, 2009). Because the                                                   24 The concept of frailty currently has evolved with considerable definitional debate. A colleague and I published an article explaining this debate in greater detail (see Gibson & Crowe, 2017). There are two “camps” of thinking and two predominant models: The Frailty Phenotype (FP) and the Frailty Index (FI). “Though both of these models recognize aging and disease as contributing factors, and both highlight diminished physical capacity as a major attribute of frailty, the models diverge on how other factors such as comorbid conditions, disabilities, and psychosocial aspects should be considered” (Gibson & Crowe, p. 29). In light of there being different conceptualizations and definitions (and multiple models and screening tools), the “measure” or thresholds of frailty vary. In both models, however, where frailty has been identified, the risk of an adverse event in response to a stressor, should be considered.    68 prevalence of HF increases in older adults, frailty can become a significant component of HF and affects morbidity and mortality (Afilalo, 2016). Afilalo (2011) explained that CVD and aging share causal biologic pathways that accelerate frailty development. Pathological up-regulation of neurohormonal compensatory systems seen in HF contributes to frailty via a complex pathway that includes aging-related insulin resistance, antigen exposure, and chronic inflammation. Maladaptive redistribution of amino acids related to chronic inflammation and insulin resistance leads to sarcopenia, thought to be a significant component of frailty. Continued symptoms and chronic maladaptive responses to physical and physiological states in illnesses such as HF also present risks for both disability and frailty, particularly if symptoms are poorly managed over a long period (Booth, Fallon, & Hollis, 2016). Increased circulating inflammatory markers (e.g. neutrophils, C-reactive protein) and thrombic factors are also present in both frailty and CVD. Problematically, inflammation triggers redistribution of amino acids and results in muscle mass loss. Insulin resistance similarly causes loss of muscle mass via diminished availability of amino acids needed for muscle function and repair. In combination, inflammation and insulin-resistance contribute to sarcopenia and muscle loss, which further alters metabolic ability and reduces intrinsic self-repair functions thus reducing resistance to stressors (Afilalo, 2011; Afilalo et al., 2014; Afilalo, 2016). People with frailty have a 30 percent higher risk of developing HF compared to those without frailty. As Afilalo (2014) explained, this vulnerability relates to the pathological and detrimental impact of frailty on muscle mass and function at the myocardial level. Consequently,    69 the risk of developing HF is also increased for people with frailty and myocardial ischemia, infarct, or abnormally elevated intracardiac pressures because they have diminished myocardial muscle resilience and lowered ability to repair the muscle when injured. 2.5.2.1. Frailty and mortality. Overall, the risk of a negative outcome for patients with frailty and HF can be severe and include worsened clinical symptoms during acute exacerbations and mortality (Afilalo et al., 2014; Goldfarb, Sheppard & Afilalo, 2015). Depending on how frailty is measured, 25 – 50% of people with HF have concurrent frailty (Afilalo, 2011; Uchmanowicz, Łoboz-Rudnicka, Szeląg, Jankowska-Polańska, Łoboz-Grudzień, 2014). People with frailty and HF experience more hospitalizations; endure worse QOL and higher incidence of depressive symptoms; and face worsened mortality outcomes at 1-year (Afilalo et al., 2014; Goldfarb, Sheppard & Afilalo; Lisiak, Uchmanowicz, & Wontor, 2016; Lupón et al., 2008; Volpato, Margherita, Gianluca, & Fotini, 2008).  Cacciatore et al. (2005) compared 12-month mortality in n=120 adults with HF and n=1139 adults without HF. Survival curves illustrated increasing mortality with worsening frailty. The authors measured frailty with the Frailty Staging System, which is an index of functional impairment severity that examines seven domains including disability, cognition, visual and hearing abilities, urinary function, and social support). Cacciatore et al. concluded that frailty was a predictor of mortality in patients with HF compared to those without. Lupón et al. (2008)  reported similar findings in their study of n=622 patients with HF. Mortality at one-year was 3.5 times higher in patients with HF and frailty compared to those without.     70 Frailty is increasingly recognized as a risk factor for worsened outcomes. Recurrent hospitalizations, symptom burden classification, and the patient’s current illness stage are also determinants of poor mortality outcomes (Butrous & Hummel, 2016; Gibson & Crowe, 2018). Goldfarb, Sheppard, and Afilalo (2015) highlighted both emotional and physical impacts of frailty: “frailty is highly prevalent in older adults with HF and has consistently been shown, from stage A to stage D, to deleteriously affect survival, hospitalizations, and quality of life” (p. 92). As I discuss in Chapters Five and Six, these important risk profiles (i.e. illness stage, frailty) are poorly understood and not commonly integrated into decision-making or patient assessments in current clinical practices. Thus, information about mortality risks associated with patients’ frailty, hospitalization history, disease progression (e.g. AHA stage) are rarely foregrounded in clinical interactions. 2.5.2.2. NYHA classification and mortality. The degree of symptoms as determined by the NYHA classification has also been shown to be predictive of mortality in patients with HF-REF (Ahmed, Aronow, & Fleg, 2006; Bouvy, Heerdink, Leufkens, & Hoes, 2003; Muntwyler, Abetel, Gruner, & Follath, 2002; Scrutinio et al., 1994). For patients with HF-PEF, higher NYHA classifications (e.g. III, IV) are similarly associated with higher mortality rates and re-hospitalization events (Ahmed, Aronow, & Fleg). As outlined in the European Society of Cardiology (ESC) guidelines, NYHA class is highly correlated with survival and hospitalization:  Patients in NYHA class I have no symptoms attributable to heart disease; those in NYHA class II, III, or IV are sometimes said to have mild, moderate or severe symptoms    71 respectively. It is important to note, however, that symptom severity correlates poorly with ventricular function, and that although there is a clear relationship between severity of symptoms and survival, patients with mild symptoms may still have a relative high absolute risk of hospitalization and death (McMurray et al., 2012, p. 1793).  Serious adverse outcomes including hospitalization and mortality for patients with HF relate to a range of variables including HF type, illness stage and symptom classification, and concurrent frailty and comorbidities. Such variables illuminate the heterogeneity of the HF patient population and also highlight the need for a consistent approach to HF care that includes considerations for advanced illness and EOL planning and care.  2.5.3. Therapeutic options: Treatment-focused care for patients with HF. The Canadian Cardiovascular Society (CCS), the AHA, and the ESC regularly publish HF consensus guidelines, which are interdisciplinary decision-support tools primarily for physicians (Arnold et al., 2006; Arnold et al., 2007; Howlett et al., 2016; McKelvie et al., 2013; McMurray et al., 2012; Moe et al., 2015). Consensus guidelines promote standardization and maximal utilization of a range of diagnostic criteria (e.g. cardiac imaging, biomarkers) and medical management options including pharmaceuticals, biomedical technologies, and physical rehabilitation and self-management programs. As outlined throughout these expert documents, the goals that guide therapies in HF include minimizing risk factors; impeding disease progression; alleviating HF symptoms; and reducing morbidity, hospitalizations, and mortality     72 (Jessup & Brozena, 2003; McMurray et al., 2012). Adherence to guideline recommendations is a common quality indicator for assessment of HF care.   The multitude of treatment options for patients with HF underpins the heterogeneity of this patient population and adds to the uncertainty that characterizes the disease course. While aimed at managing symptoms, biomedical technologies can also prolong life. Howlett et al. (2010) argued that the nature of cardiac medical technologies “may create confusion in the minds of both the patient and HCPs as to the actual goals of therapy—that the goal may be primarily to prolong life rather than primarily to alleviate symptoms” (p. 136). The range of options also underpins the difficulty HCPs describe about knowing when to shift from treatment-focused to support-focused care, and was evident in my research fieldwork. The following section therefore briefly reviews commonly used pharmacology and biomedical technologies for patients with HF.   2.5.3.1. Pharmacological therapy in HF. Pharmacological therapy is an essential component of HF care. Beta-blockers, angiotensin converting enzyme (ACE) inhibitors, aldosterone receptor agonists, and diuretics are mainstays and are used to manage sympathetic nervous system responses and the RAA axis, which was introduced in a section above. Intended therapeutic responses include reductions in heart rate and myocardial oxygen demands; decreased afterload and lowered systemic blood pressure via counteraction of RAA-mediated vasoconstriction; and reduced preload and circulating fluid volume via control of sodium and water reabsorption (Gibson & Raphael, 2014; Gibson & Nordby, 2014). Such    73 actions help prevent ventricular remodeling while simultaneously mitigating symptoms of congestion (e.g. edema) and sympathetic activity (e.g. tachycardia); pharmacologic therapies slow ventricular remodeling (McMurray et al., 2012). Occurrences of refractory HF are commonly treated with intravenous inotropic agents and vasopressors. These medications are used to increase CO via augmentation of myocardial contractility and vasoconstriction. Biomedical technologies and cardiac surgical procedures including mechanical circulatory support devices may also be considered in refractory HF and in the advanced illness stages (e.g. stage D) (Jessup & Brozena, 2003) .  2.5.3.2. Biomedical technologies and interventions in HF. Biomedical technologies are used in HF to improve symptoms, decrease incidences of acute exacerbations, and reduce the risk of sudden death (Arnold et al., 2006; McKelvie et al., 2011; McKelvie et al., 2013; McMurray et al., 2012). Jessup and Brozena (2003) estimated the rate of sudden death in people with HF to be six to nine times higher than the general population. About half of deaths from HF occur unexpectedly, thought to be largely due to ventricular arrhythmias. Thus, prevention of sudden death via treatment of ventricular arrhythmias is a main goal of therapy (McMurray et al., 2012, p. 1813).  Implantable cardiac defibrillators (ICDs) are used for patients with HF to prevent sudden death associated with life-threatening ventricular arrhythmias (McKelvie et al., 2013). Cardiac resynchronization therapy (CRT) is a different type of implantable pacemaker that is surgically inserted to optimize CO and slow disease progression by improving cardiac e