Continuous Deep Palliative Sedation: An Ethical Analysis Dr Lalit Kumar Radha Krishna Senior Consultant in Palliative Medicine MBChB Liverpool, MRCP (London), MA in Ethics in Cancer and Palliative Care (Keele) A thesis submitted For the degree of Doctor of Philosophy Centre for Biomedical Ethics National University of Singapore 2013 i ii Acknowledgements For those who have inspired me, guided me, stood with me and supported me For my parents who made me the man I am & For my wife and son who inspire me to be more ~ words fail iii iv Table of Contents Declaration ................................................................................................................... i Acknowledgement ....................................................................................................... iii Summary ................................................................................................................... xiii List of Tables.............................................................................................................xvii List of Figures............................................................................................................xix Acronyms....................................................................................................................xxi INTRODUCTION ......................................................................................................1 Controversies surrounding the application of palliative sedation and terminal sedation ...............................................................................................2 Objectives of this thesis ................................................................................................7 References...................................................................................................................14 Chapter 1 THE PRACTICE OF SEDATION AT THE END OF LIFE ...............................18 1.1 Introduction.....................................................................................................18 1.2 Continuous deep palliative sedation (CDPS)..................................................22 1.2.1 Goals of CDPS ....................................................................................22 1.2.1.1 Distinctive option of last resort.............................................23 1.2.1.2 Relief of physical symptoms.................................................23 1.2.2 Prerequisites for applying CDPS.........................................................26 1.2.2.1 Intractability ..........................................................................27 1.2.2.2 Terminality............................................................................29 1.2.2.3 Futility...................................................................................29 1.2.3 Treatment decision-making in CDPS..................................................30 1.2.4 Patient consent to CDPS .....................................................................32 1.2.5 Treatment procedure in CDPS ............................................................37 1.2.6 CDPS and clinically assisted artificial nutrition and hydration (CANH)........................................................................40 1.2.7 Intentions in CDPS..............................................................................41 v 1.3 Terminal sedation (TS)................................................................................... 45 1.3.1 The term TS ........................................................................................ 46 1.3.2 Goals of TS......................................................................................... 48 1.3.2.1 Distinctive option of last resort ............................................ 48 1.3.2.2 Relief of physical and psychological symptoms .................. 48 1.3.3 Prerequisites........................................................................................ 48 1.3.4 Treatment decisions............................................................................ 49 1.3.5 Consent ............................................................................................... 50 1.3.6 Treatment procedure........................................................................... 50 1.3.7 Clinically assisted artificial nutrition and hydration (CANH)............ 51 1.3.8 Intentions ............................................................................................ 51 1.3.9 Evaluating TS ..................................................................................... 52 1.4 Palliative sedation (PS)................................................................................... 55 1.4.1 Goals................................................................................................... 55 1.4.1.1 Distinctive option of last resort ............................................ 55 1.4.1.2 Relief of physical, existential and psychological suffering................................................................................ 56 1.4.2 Prerequisites........................................................................................ 56 1.4.3 Treatment decisions............................................................................ 57 1.4.4 Consent ............................................................................................... 58 1.4.5 Treatment procedure........................................................................... 58 1.4.6 Intentions ............................................................................................ 59 1.4.7 Evaluating PS...................................................................................... 60 1.5 Suffering and distress ..................................................................................... 61 1.5.1 Defining suffering and distress........................................................... 61 1.5.2 Identifying suffering and distress ....................................................... 63 1.5.3 Justifying an “inclusive” idea of suffering ......................................... 64 1.6 Standards of care ............................................................................................ 69 1.7 Treatment decisions........................................................................................ 69 1.8 Conclusion...................................................................................................... 72 References .................................................................................................................. 73 vi Chapter 2 GOALS OF CARE....................................................................................................90 2.1 Introduction.....................................................................................................90 2.2 The Jansen and Sulmasy position ...................................................................96 2.2.1 The physical-existential approach to the treatment of suffering.........96 2.3 The Cassell and Rich position.......................................................................109 2.4 The position of CDPS ...................................................................................119 2.4.1 View on suffering..............................................................................119 2.4.2 Assessment and diagnosis .................................................................123 2.4.3 Treatment and reviews ......................................................................125 2.5 The goals of medicine ...................................................................................127 2.5.1 The Duty of Palliative Care (DoPC) .................................................128 2.5.2 The Duty of Palliative Care in practice.............................................129 2.6 Conclusion ....................................................................................................131 References.................................................................................................................133 Chapter 3 DECISION-MAKING PROCESS.........................................................................137 3.1 Introduction...................................................................................................137 3.2 The multidisciplinary team ...........................................................................138 3.3 Jaafar’s case ..................................................................................................141 3.4 The issue of intractability..............................................................................144 3.4.1 The determination of intractability....................................................146 3.4.2 Patient-related or subjective factors in the determination of intractability ..................................................................................148 3.4.2.1 Treatment that is in keeping with the patient’s goals, values and beliefs ................................................................148 3.4.2.2 Other subjective elements in the determination of intractability....................................................................150 3.4.3 Professional factors in the determination of intractability ................151 3.4.3.1 The social workers’ concerns..............................................153 3.4.3.2 The religious workers’ concerns .........................................154 3.4.3.3 The concerns of Sharizah,