Assisted dying A state of knowledge report The Swedish National Council on Medical Ethics (Smer) September 2018 Smer 2017:2 Preface One of the tasks of the Swedish National Council on Medical Eth- ics (Smer) is to stimulate societal debate on important issues of medical ethics. Smer also acts as the mediating authority between academia, citizens and policy makers. The Council has taken the initiative in creating this systematic review of assisted dying, with a focus on the “Oregon Model” practised in a number of American states, which has dominated Swedish debate in recent years. The aim of the review is to create a knowledge base for the on- going societal discussion on assisted dying. It discusses the central terms and definitions and describes the various models for legal assisted dying. A review is given of research and public statistics concerning assisted dying, where the focus is on the Oregon Mod- el, but information from other countries is also presented. Follow- ing the description of the most common arguments for and against assisted dying, the report concludes with an analysis of the evi- dence to support the various factual arguments for and against as- sisted dying, based on the details that have emerged during the review process. The report does not contain any stance on whether assisted dy- ing should be allowed or not. Smer will continue to analyse the ethical questions on assisted dying. As part of the work, the council has obtained opinions and facts from different organisations and people (see Appendix). A working group comprising council members Kjell Asplund, Ingemar Engström and Elisabet Wennlund have worked to produce this report. Smer’s Head of Secretariat Lotta Eriksson (until July 2017) and acting Head of Secretariat Karin Mossler (as of August 2017) also participated in the work. The main author of the report was research officer Michael Lövtrup. The decision to publish this report was made at the Smer meet- ing on 2017, October 27. The report was published on 2017, No- vember 20. In the present English translation, aspects that are specific to the Swedish context have been left out. The English text contains a few updates since the publication of the Swedish version, primarily concerning the jurisdictions where assisted dying is legal. The translation was carried out by the translation agency Se- mantix, and has been revised by the secretariat of Smer. Stockholm, September 2018 Kjell Asplund Chairman, Swedish National Council on Medical Ethics Table of Contents Preface ............................................................................... 3 Summary .......................................................................... 11 1 Introduction .............................................................. 23 1.1 Why compile information on assisted dying? ....................... 23 1.2 Limitations and methods ........................................................ 25 1.3 Structure of the report ............................................................ 26 2 Terms and definitions ................................................ 27 2.1 Terms used in the report ........................................................ 27 2.2 Some important definitions .................................................... 28 2.3 Definition of assisted dying ................................................... 30 3 Models for legalised assisted dying .............................. 33 3.1 The Oregon Model ................................................................. 34 3.1.1 Oregon ..................................................................... 34 3.1.2 Other American states that have implemented the Oregon Model ................................................... 36 3.1.3 Montana ................................................................... 37 3.2 The Benelux Model ................................................................. 37 3.2.1 The Netherlands ...................................................... 37 3.2.2 Belgium .................................................................... 40 3.2.3 Luxembourg ............................................................. 42 3.3 Other models .......................................................................... 43 5 Smer 2017:2 3.3.1 Switzerland .............................................................. 43 3.3.2 Canada ..................................................................... 45 3.3.3 Colombia ................................................................. 46 3.3.4 Victoria (Australia) ................................................. 47 4 Self-administered assisted dying following the Oregon Model – what do we know? ......................................... 49 4.1 Sources .................................................................................... 49 4.2 Incidence ................................................................................. 52 4.3 The patients ............................................................................ 58 4.3.1 Diagnoses................................................................. 58 4.3.2 Demographics and socioeconomics ....................... 62 4.3.3 Grounds for requesting assisted dying .................. 68 4.3.4 Personality characteristics and outlook on life ..... 73 4.4 The practical application ........................................................ 76 4.4.1 Where and how does a person die? ........................ 77 4.4.2 Predictions of survival ............................................ 80 4.4.3 Assisted dying outside the regulations .................. 81 4.5 Depressed patients.................................................................. 84 4.5.1 The correlation between depression and a wish for assisted dying ............................................ 85 4.5.2 Are depressed patients identified? ......................... 88 4.5.3 Assessing effects on judgement ............................. 90 4.6 Assisted dying and palliative care .......................................... 91 4.6.1 Access to palliative care .......................................... 92 4.6.2 The relationship between demand for assisted dying and availability of palliative care .................. 94 4.6.3 When assisted dying meets palliative care ............. 96 4.7 Suicide ..................................................................................... 99 4.8 Experiences of and attitudes to self-administered assisted dying ........................................................................ 101 4.8.1 Patients .................................................................. 102 4.8.2 Relatives ................................................................. 103 4.8.3 Physicians .............................................................. 106 4.8.4 Population ............................................................. 111 6 Smer 2017:2 5 Arguments for and against assisted dying ................... 113 5.1 Value-based arguments and fact-based arguments ............. 113 5.2 Value-based arguments in favour of permitting assisted dying ...................................................................................... 115 5.2.1 The self-determination argument ......................... 115 5.2.2 The democracy argument ...................................... 116 5.2.3 The justice argument ............................................. 116 5.2.4 We should regulate a practice that already exists ....................................................................... 116 5.2.5 The dignity argument ............................................ 117 5.3 Value-based arguments against permitting assisted dying ...................................................................................... 117 5.3.1 The argument about the sanctity of life ............... 117 5.3.2 Assisted dying goes against medical ethics .......... 117 5.3.3 Assisted dying means the patient misses out on an important phase of life ................................ 118 5.3.4 The dignity argument ............................................ 118 5.4 Fact-based arguments in favour of permitting assisted dying ...................................................................................... 118 5.4.1 Assisted dying can be a final way out when symptom management is insufficient .................. 118 5.4.2 The compassion argument .................................... 119 5.4.3 Assisted dying can counteract low quality of life and loss of dignity in the end of life............... 119 5.4.4 Assisted dying gives patients security and control at the end of life ........................................ 119 5.4.5 Assisted dying can lead to fewer suicides ............ 120 5.5 Fact-based arguments against permitting assisted dying ... 120 5.5.1 Where there is good access to palliative care, there is no need for assisted dying ....................... 120 5.5.2 The question of assisted dying is discussed by healthy people, whereas those who are ill do not request it .......................................................... 120 5.5.3 The care of other patients may deteriorate .......... 121 5.5.4 Confidence in the healthcare system may decline..................................................................... 121 7 Smer 2017:2 5.5.5 Medical assessments are uncertain ....................... 121 5.5.6 Patients who request assisted dying are often depressed ............................................................... 122 5.5.7 It is difficult to guarantee that the patient is capable ...................................................................