End of Life Decisions and Practices: The Experiences of Doctors in Australia Steven A Trankle 2013 A Thesis submitted for the degree of Doctor of Philosophy University of Western Sydney February, 2013 Dedication This thesis was written in loving memory of Victoria May Miller, 18 May 1927 – 30 January 2011, my beloved mother in-law, who lost her protracted battle with cancer, and with gratitude for the dedicated and compassionate palliative staff of Calvary who helped care for her. Acknowledgements I wish to express a heartfelt thank you to my participants who so enthusiastically engaged with my research and so generously referred their colleagues to me. Their contribution lies at the heart of this thesis. In acknowledging my supervisors, I especially thank Associate Professor Janette Perz, who always showed confidence in me as a researcher and helped me find my true potential. Through her supportive but insightful critique, she sometimes challenged my thinking and I felt privileged to benefit from the experience and knowledge (and suggestions) she offered. I am also very grateful to Dr Emilee Gilbert who read sections of the thesis as it progressed and provided valuable feedback. It was comforting to know I could also draw on her expertise with qualitative research. Finally, I wish to deeply thank Dr John Haw who I often look upon as a mentor. In this and previous research his support and confidence has been empowering for me. To say that this PhD journey would not have been possible without the support of my beloved family is a gross understatement. I can never adequately thank my lovely wife Candy and my sons Jake and Sam who encouraged me in this passion and sacrificed so much “husband” and “dad time” in that journey with me. Albeit with rolled eyes sometimes, they persevered as my sounding boards and politely listened to me when I (frequently) climbed aboard my soapbox to debate end-of-life matters. Never once did they question the importance of what I was doing, and I consider this thesis as much their effort as it is mine. Through all its ups and downs, the support shown to me in this journey has been a humbling experience, but also a sustaining experience that bolstered my confidence when I felt it waning. I look forward to the journey yet to come. Statement of Authentication The work presented in this thesis is, to the best of my knowledge and belief, original except as acknowledged in the text. I hereby declare that I have not submitted this material, either in full or in part, for a degree at this or any other institution. Steven A Trankle i Table of Contents Abstract x Preface xi Chapter 1: End-of-Life Care: The State of Play 1 1.1. Summary 13 Chapter 2: A Critical Window into the Complex World of End-of Life Care 15 2.1. A Critical Realist View 16 2.1.1. The reality of a “structured” social world. 18 2.1.1.1. The dualism problem: Structure/action (causality vs. agency). 21 2.1.2. A critical realist ontology. 22 2.1.2.1. Identity and coping. 24 2.2. An Explanatory Lens 26 2.2.1. A multilevel systemic approach. 28 2.2.1.1. Complexity theory. 30 2.3. Summary 33 Chapter 3: Macro Level Considerations in End-of-Life Care 36 3.1. Religion 36 ii 3.1.1. Sanctity of life. 38 3.2. Mass Media 40 3.3. Philosophical and Bioethical Aspects to End-of-Life Care 43 3.3.1. Manipulating life and death. 43 3.3.2. Clinical definitions of death. 45 3.3.2.1. Organ donation. 46 3.3.3. Terminating life. 47 3.3.4. Killing versus letting die. 49 3.3.4.1. The concept of force majeure. 51 3.3.5. Moral guidance. 52 3.4. Egalitarian Expectations of End-of-Life Care in Australia 54 3.4.1. Neoliberalism. 57 3.5. Summary 59 Chapter 4: Meso Level Considerations for End-of-Life Care: The Bedside 60 4.1. The Hippocratic Oath 61 4.2. The Palliative Care Model 62 4.2.1. Dignity at the end-of-life. 64 4.2.2. Palliative care in paediatrics. 67 iii 4.3. Care Goal Transition 70 4.4. The Critical/Acute Care Model 72 4.5. Evidence-based Integrated Practice Guidelines for End-of-Life Care 76 4.6. The Medico-Legal Interface at the Bedside 79 4.6.1. Professional and legal guidance. 82 4.6.2. Principle of double effect. 85 4.6.2.1. Terminal sedation. 86 4.7. Summary 91 Chapter 5: Micro Level Considerations for End-of-Life Care: The Personal World of Experience 92 5.1. The Intrapersonal and Interpersonal Experience 93 5.2. Physician Skills and Training: Challenging Requirements of End-of-Life Care 98 5.2.1. Existential distress in dying patients. 99 5.2.1.1. The demoralisation syndrome in terminally ill patients. 102 5.3. The Impact to Physicians Providing End-of-Life Care 103 5.3.1. Religion and physician spirituality. 104 5.3.2. Physician burnout. 105 iv 5.3.2.1. Organisational influences to burnout. 110 5.3.3. Coping with difficult experiences when providing end-of-life care. 113 5.4. Summary 116 Chapter 6: The Method of Investigation 117 6.1. Research Aims 119 6.2. Research Questions 119 6.3. Design 119 6.4. Recruitment 121 6.4.1. The participants. 122 6.5. Procedure 126 6.5.1. Data analysis. 126 6.5.1.1. Familiarising with the data. 127 6.5.1.1.1. Transcription. 128 6.5.1.2. Generating initial codes. 128 6.5.1.3. Searching for themes. 129 6.5.1.4. Reviewing themes. 129 6.5.1.5. Defining and naming themes. 129 6.5.1.6. Write-up and presentation (producing the report). 130 v 6.5.2. Reflexivity. 130 6.6. Ethical Considerations 132 6.7. Summary 133 Chapter 7: A Focus on Meaning: End-of-Life Care as Understood by Physicians 134 7.1. Control in End-of-Life Care and the Timing of Death 135 7.1.1. Religion and sanctity of life. 136 7.1.2. The active/passive distinction and double effect. 141 7.1.2.2. Sedation helps the process of dying. 143 7.1.3. Requesting death: The influence of others. 146 7.1.3.1. Waiting to die: Gaining control over uncertainty. 148 7.1.3.2. Pre-emptive/anticipatory motives. 150 7.1.3.3. Dogs die a better death: Requests as control over vicarious suffering. 155 7.2. Understanding Death and Dying 157 7.2.1. “Rightness” of death. 158 7.2.1.1. A greater purpose in death. 159 7.2.1.2. A place to die. 161 7.2.2. Death is about living. 163 vi 7.2.3. Death as medical failure. 164 7.2.3.1. Non-acceptance of death. 166 7.3. A Good Death: One of Peace and Comfort 168 7.3.1. Symptom control. 170 7.3.2. Planning for death (and care goal transition). 172 7.3.2.1. Communication. 175 7.3.3. Patient control (and input to end-of-life decisions). 176 7.3.4. Individualising end-of-life care. 179 7.3.4.1. Existential considerations. 181 7.3.5. Healing relationships. 183 7.4. A Bad Death 184 7.4.1. Poor symptom management. 185 7.4.2. Inadequate care goal transition. 186 7.4.2.1. Professional conflict. 187 7.4.2.2. Family conflict. 191 7.4.3. Death is unfair. 193 7.5. Discussion 196 7.6. Summary 208 vii Chapter 8: Positive Experiences of Physicians in End-of-Life Care 209 8.1. Privileged Relationships in End-of-Life Care 211 8.1.1. Trust and connecting emotionally. 211 8.1.2. Enduring relationships. 214 8.1.3. Professional relationships. 216 8.2. Doing What They Love 220 8.2.1. Helping others and making a difference. 222 8.2.1.1. Holistically focused care. 224 8.2.2. Technology. 225 8.2.3. Intellectual challenges of complex illness. 228 8.2.3.1. Research and academic interest. 229 8.2.3.2. The uncertainty of intensive medicine. 230 8.3. Doing a Good Job: Providing the Good Death 234 8.3.1. Personalising death and dying. 236 8.3.2. Affecting the timing of death. 240 8.4. Discussion 247 8.5. Summary 255 viii Chapter 9: Negative Experiences of Physicians in End-of-Life Care 257 9.1. Working with Socio-cultural Constraints and Difficulties 259 9.1.1. Young patients shouldn’t be dying. 260 9.1.2. Family conflict. 261 9.1.2.1. Religion. 264 9.2. Up against the “System”: Professional Constraints to Care 266 9.2.1. Self-sacrifice: Meeting demands of the job/setting. 267 9.2.2. Resourcing challenges. 268 9.2.2.1. Juggling patients. 270 9.2.2.2. Time is the enemy. 271 9.2.2.3. Inadequate training and expertise. 273 9.2.3. Collegial (Professional) conflict. 277 9.2.3.1. Professional paternalism. 279 9.2.4. Negotiating an authoritarian system. 282 9.2.4.1. Double effect: An ambiguous scaffold. 284 9.3. The Intrapsychic Burden 287 9.3.1. Feeling emotional pressure. 287 9.3.2. Identifying with patients. 289 9.3.3. Self-recrimination. 291 ix 9.4. Coping with Aversive Experience 297 9.4.1. Self-reflection. 298 9.4.2. Rationalising decisions and actions.