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The Concept of Autonomy in End-Of-Life Decisions: Ethical and Legal Regulation Regarding Advance Directives

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The Concept of Autonomy in End-Of-Life Decisions: Ethical and Legal Regulation Regarding Advance Directives Alma Mater Studiorum – Università di Bologna In collaborazione con LAST-JD consortium: Università degli studi di Torino Universitat Autonoma de Barcelona Mykolas Romeris University of Vilnius Università di Lussemburgo Tilburg University DOTTORATO DI RICERCA IN Erasmus Mundus Joint International Doctoral Degree in Law, Science and Technology Ciclo 28 – A.Y. 2012/2013 Settore Concorsuale di afferenza: 12H3 Settore Scientifico disciplinare: IUS20 The Concept of Autonomy in End-of-Life Decisions: Ethical and Legal Regulation regarding Advance Directives Presentata da: Denard Veshi Esame finale anno 2016 Introduction ………………………………………………………………………………………………… p. 5 Chapter 1. End-of-Life Decisions and the Right to Autonomy Abstract ..…………………………………….……………………………………………………………… p. 10 1. The connection between ethics and law in end-of-life decisions ……. p. 12 2. The European legal models analysed …………………………...…………………... p. 18 3. Moving beyond the limits of the individualism model of autonomy: the concept of relational autonomy ……………………………………………....………... p. 26 4. The significance of advance directives ………………………………….………….. p. 33 4.1. The main critiques regarding the recognition of advance directives ……………………………………………………..…………….………….. p. 35 5. The two forms of advance directives ………………………………….…………….. p. 37 5.1. Moral reasons for supporting the role of the legal proxy in end- of-life decisions …………………………………………..…………….………….. p. 42 6. The position of national courts in some of the most important case law …………………………………………..…………….……………………………………………..…….. p. 47 6.1. Withdrawing treatment from incompetent patients in Italy: the case of Eluana Englaro …………………………………..……………………...….. p. 50 Summary …………………………..…………….………………..…………………………………….….. p. 57 References …………………………..…………………………..…………………………………………. p. 59 Chapter 2. Advance Directives in Some Western European Countries Abstract …………………………..…………….………………..………...……………………………….. p. 70 1. The Council of Europe on the right to refuse medical treatment: the European Convention on Human Rights and Biomedicine of April 1997........................................................................………………….………………...….. p. 72 1.1. The interpretation of the right to refuse medical treatments by the European Court of Human Rights ………….………………...…... p. 80 i 1.1.1. Comments on the case law in Vincent Lambert: the rulings of the Conseil d’État and the European Court of Human Rights ………….………………………………...….. p. 85 1.2. Recommendation CM/Rec (2009) 11 of the Council of Europe ...................................................................................................................... p. 94 1.2.1. Provisions regarding the power of attorney for health, welfare, and other personal matters ...... p. 103 1.3. The May 2014 guide on the decision-making process regarding medical treatment in end-of-life situations ……………….......... p. 118 1.3.1. Guidelines regarding the main parties in the decision-making process ………………………….......... p. 115 2. Advance directives in English-, German-, and Romance-speaking countries: similarities and differences ……………………………………........... p. 118 3. Advance directives in Romance-speaking countries ………………........... p. 127 3.1. Advance directives in Spain ………………………………….................. p. 129 3.2. Advance directives in France ………….…………………….................p. 132 4. Advance directives in English-speaking countries …………..................... p. 135 4.1. Advance directives in England ……................................................. p. 136 5. Advance directives in German-speaking countries ….............................. p. 140 5.1. Advance directives in Germany ...................................................... p. 141 Summary ............................................................................................................................. p. 144 References .......................................................................................................................... p. 146 Chapter 3. Advance Directives in Italy: Comparative Approaches, Ethical and Legal Abstract ............................................................................................................................... p. 153 1. The current situation in Italy: The position of the bioethical and medical community......................................................................................... p. 155 ii 2. The Italian bill on advance directives: The problem of their limitation …………..................................................................................................................... p. 165 2.1. The problem of withdrawing alimentation and hydration through advance directives .............................................................. p. 173 3. The Italian bill on advance directives: Their form and content ....... p. 183 4. The appointment of a surrogate in Italy: legal comparison with the Mental Capacity Act of 2005 .................................................................................... p. 190 4.1. Cases involving the absence of a surrogate .................. p. 196 5. The application of Italian Law no. 6 of 9 January 2004 in Italian jurisprudence: the appointment of a support guardian for healthcare decisions .............................................................................................................................. p. 201 Summary ............................................................................................................................ p. 212 References .......................................................................................................................... p. 214 Chapter 4. Conclusions 1. The importance of advance directives in end-of-life decisions ....... p. 222 2. Advance directives within the Council of Europe ................................. p. 225 2.1. The application of Recommendation CM/Rec (2009) 11 of the Council of Europe as a source of law .............................. p. 227 2.2. Comments regarding the May 2014 guide on the decision- making process regarding medical treatment in end-of-life situations .......................................................................................... p. 229 3. Comparison between English-, German-, and Romance-speaking countries ............................................................................................................... p. 231 4. Possible modification of the Italian bill regarding advance directives .................................................................................................................................................... p. 234 4.1. Possible modification of the Italian bill regarding surrogate wills ................................................................................ p. 239 5. Final remarks .................................................................................................................... p. 241 iii Bibliography ...................................................................................................................... p. 247 Notes .................................................................................................................................... p. 268 Acknowledgments ............................................................................................................ p. 269 Annex ................................................................................................................................... p. 271 (Bill 2350, “Provisions relating to therapeutic alliance, informed consent, and advance directives for treatment”, translated into English by the author) iv Introduction In this thesis the concept of autonomy in end-of-life decisions is analyzed through ethical and legal comparative approaches in view of the fact that this field is one of the main fields where law and ethics are so closely intertwined. The definition of advance directives – living wills and the appointment of a legal proxy – is studied. In addition, Recommendation CM/Rec (2009) 11 and the “Guide on the decision-making process regarding medical treatment in end-of-life situations” is analysed. Currently, end-of-life decisions are part of the exclusive competence of national parliaments. Thus, different parliaments have adopted different policies underpinned by different moral principles. What follows is an absence of a common European legal framework. National laws on advance directives in various Western European countries – such as Romance-speaKing countries (Italy, France, Portugal, and Spain), English-speaKing countries (Ireland and the United Kingdom of Great Britain and Northern Ireland), and German- speaKing countries (Austria, Germany, and Switzerland) – are examined. This thesis seeks to analyse national norms governing advance directives by hypothesising the reasons for the lack of a common attitude towards end-of- life decisions and to identify similarities and differences between countries, in addition to advancing some proposals for the future regarding end-of-life decisions. Particular attention is paid to the current Italian situation regarding end-of-life decisions, since – within our survey, which includes the analysis of national laws in the Romance-, English-, and German-speaKing countries – Italy, in addition to Northern Ireland and the Republic of Ireland, is one of the few Western European countries being analysed that does not have a specific law governing end-of-life situations. While in Northern Ireland the biomedical community adopts the Mental Capacity
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