Seminar 6: Advance decision-making: the European dimension
Date: 17 January 2017, 10:00 - 15:30
Location: Liberty Building, University of Leeds.
Presentations
Tamara Hervey “Advance-Decision Making in European Union Law: problems and potential”
Stefania Negri, Associate professor of International Law, Jean Monnet Chair in European Health, Environmental and Food Safety Law , University of Salerno: "Searching for common grounds and principles for the regulation of advance directives in Europe: the contribution of the Council of Europe"
Oliver Lewis, Professor of Law & Social Justice, University of Leeds: "Does the CRPD advance advance directives in mental healthcare?"
Programme
The seminar will focus on the ways in which advance decisions might be promoted and regulated at European and international levels. The key relevant international/regional institutions are the Council of Europe (particularly its European Convention on Human Rights and Fundamental Freedoms and Convention on Biomedicine); the European Union; and the UN Convention on the Rights of Persons with Disabilities. These legal instruments and institutions interact in important and under-researched ways, both with each other, and with national regulatory structures, as well as with ethical codes and other approaches to regulation, for instance through professional gate-keeping.
10.00
Coffee and registration.
10.20
Welcome, opening remarks and introductions.
10.30
Tamara Hervey, Jean Monnet Professor of EU Law, University of Sheffield: "Advance-Decision Making in European Union Law: problems and potential"
Followed by time for discussion and questions.
11.30
Stefania Negri, Associate professor of International Law, Jean Monnet Chair in European Health, Environmental and Food Safety Law , University of Salerno: "Searching for common grounds and principles for the regulation of advance directives in Europe: the contribution of the Council of Europe"
Followed by time for discussion and questions.
12.30
Lunch
13.30
Oliver Lewis, Professor of Law & Social Justice, University of Leeds: "Does the CRPD advance advance directives in mental healthcare?"
Followed by time for discussion and questions.
15.00
Closing remarks.
Speakers
Professor Tamara Hervey
Tamara K Hervey, LLB, PhD, FAcSS, PFHEA is Jean Monnet Professor of EU Law at the University of Sheffield. She researches, teaches, and writes on EU social and constitutional law, in particular its application in health fields; on equality law; on interfaces between biosciences and (European) law; on social rights; and on legal pedagogy.
Tamara is author/editor of 15 books/edited collections and over 80 articles and book chapters, including T Hervey and C Young with L Bishop, Research Handbook in European Union Health Law and Policy (Edward Elgar, 2017 forthcoming); T Hervey and J McHale, European Union Health Law: Themes and Implications (Cambridge: Cambridge University Press, Law in Context, 2015); S Peers, T Hervey, J Kenner, A Ward, eds, Commentary on the European Union Charter of Fundamental Rights (Hart 2014); M Flear, AM Farrell, T Hervey, T Murphy, eds, European Law and New Health Technologies, (Oxford University Press 2013); AM Farrell, S Davaney, T Hervey, T Murphy, eds, ‘Regulatory “Desirables” for Health Technologies’ 21 (1) Special issue of Medical Law Review (2013); AM Farrell, S Davaney, T Hervey, T Murphy, eds, ‘Contextualising the Regulation of Health Technologies’ – Special issue of Law, Innovation and Technology 4 (2) (2012).
Professor Stefania Negri
Stefania Negri is associate professor of International Law and Jean Monnet Chair in “European Health, Environmental and Food Safety Law” at the School of Law of the University of Salerno (Italy). She is also the founder and director of the Observatory on Human Rights: Bioethics, Health, Environment, and the academic director of the “International Summer School on Law, Bioethics and Health” and of the “ELSA Summer Law School on International and European Environmental Law”.
Stefania has been visiting professor at the Universities Queen Mary of London, Strasbourg, La Coruña, Murcia and Porto Alegre, as well as visiting research fellow at the Graduate Institute of International and Development Studies in Geneva, at the Institute for German, European and International Medical Law, Public Health Law and Bioethics of the Universities of Mannheim-Heidelberg, at the Centre d'Etudes et de Recherches Internationales et Communautaires of Aix-Marseille University. She is the principal investigator of international research projects financed by the Italian Ministry for University and Research, the Italo-French University (Galileo Programme) and DAAD (Vigoni Programme).
Her research interests and publications are mainly focused on human rights, international and European health and biomedical law, international and European environmental law, international criminal law and international procedural law. She is the editor of Self-Determination, Dignity and End-of-Life Care. Regulating Advance Directives in International and Comparative Perspective, Brill, 2011; Advance Care Decision Making in Germany and Italy. A Comparative, European and International Law Perspective. Springer-Verlag, 2013 (with J. Taupitz et al.); Environmental Protection and Sustainable Development from Rio to Rio+20 / Protection de l’environnement et développement durable de Rio à Rio+20, Brill, 2014 (with M. Fitzmaurice and S. Maljean-Dubois); Ethical, Legal and Social Issues related to Organ Trafficking and Transplant Tourism (with J.A. Seoane), Special issue 2017 of the “Journal of Trafficking and Human Exploitation”.
Participants
Marion Albers
Lehrstuhl für Öffentliches Recht, Informations- und Kommunikationsrecht, Gesundheitsrecht und Rechtstheorie, Fakultät für Rechtswissenschaft, Universität Hamburg
marion.albers@jura.uni-hamburg.de
Jacqueline Atkinson
Professor of Mental Health Policy at the University of Glasgow
Jacqueline.Atkinson@glasgow.ac.uk
Peter Bartlett
Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law, University of Nottingham
Peter.Bartlett@nottingham.ac.uk
Marike de Boer
Researcher, EMGO Institute for Health and Care Research, VU University Medical Center.
m.deboer@vumc.nl
Louise Bramley
PhD student, University of Nottingham
Louise.Bramley@nottingham.ac.uk
Sharon Burton
GMC Head of Policy, Standards and Ethics
sburton@gmc-uk.org
Martin Eisemann
Professor of Psychology University of Tromsø
martin.eisemann@uit.no
Chris Gastmans
Professor of Medical Ethics President, European Association of Centres of Medical Ethics KU Leuven
Chris.Gastmans@med.kuleuven.be
Samantha Halliday
Associate Professor of Law, University of Leeds
S.Halliday@leeds.ac.uk
Gillian Hundt
Professor of Social Science in Health, University of Warwick
Gillian.Hundt@warwick.ac.uk
Kirstin Jalink
PhD student, VU University Medical Center
k.jalink@vumc.nl
Arnd May
Zentrum für Angewandte Ethik
may@EthikZentrum.de
Alex Pearl
PhD student, School of Law, University of Leeds
A.Pearl@leeds.ac.uk
Andrea Prescott
Court of Protection and Community Care Solicitor Cartwright King Solicitors, Leeds.
Andrea.prescott@cartwrightking.co.uk
Jörg Richter
Professor of psychology, Universität Rostock, SL University of Hull
j.richter@hull.ac.uk
Kevin de Sabbata
PhD student, School of Law, University of Leeds
lwkds@leeds.ac.uk
Sander Welie
Lawyer, Dutch National Foundation of Patient Advocates in Mental Health Care
S.Welie@pvp.nl
Abstracts
Advance-Decision Making in European Union Law: problems and potential
Professor Tamara Hervey, University of Sheffield
The Member States of the EU have adopted a wide range of different legal and regulatory approaches to advance-decision making in medical/end of life contexts. These apply in an equally diverse range of approaches to the assessment of competence of patients with dementia or otherwise incapacitated (European Joint Action on Dementia Synthesis Report, 2013:79). At first sight, EU law appears to have little connection with advance-decision making. Health law is a matter of national competence (Article 168 (7) TFEU), and differences in approach to interpretation of dignity-based human rights in medical and social care contexts, based on different understandings of ethical appropriateness, are recognised by the EU’s legal order (Protocol No 35; SPUC v Grogan; Brüstle; International Stem Cell …). Indeed the CJEU has recognised nationally determined interpretations of the right to human dignity (Omega Spielhallen).
And yet, the EU has become increasingly concerned with advance-decision making. This growing EU interest and involvement takes place in several substantive contexts including: the EU’s 2020 strategy and response to its ageing population, including an increased attention to the needs and desires of the elderly in the EU’s policies; the EU’s signature of the UN’s CRPD; cross-border patient movements; and opportunities arising from an increasingly integrated European market in health services, a market of interest to investors and foreign firms, particularly in the US (as illustrated by the debates surrounding ‘ringfencing’ of health systems from TTIP).
The paper considers the legal and institutional problems and potential of such interest and concern. It will explore the legal position of the EU in terms of its competence to regulate advance-decision making, taking a broad definition of the term ‘regulation’, extending beyond the adoption of harmonising ‘hard law’ in the form of, for instance, a Directive. It will consider the rights, responsibilities and liabilities of patients, health professionals, and health institutions in the context of cross-border health care (in its various meanings) where advance-decision making is involved. In so doing, it will adopt an approach to EU law that does not assume legal hierarchy, but sees EU law within a heterarchical relationship of legal systems including national (human rights) law; CoE law; and UN law.
Searching for common grounds and principles for the regulation of advance directives in Europe: the contribution of the Council of Europe
Dr Stefania Negri, University of Salerno
The Council of Europe is the leading international institution in the development of common European norms relating to human rights and bioethics. Within this broad framework, it has played an important role in providing general guiding principles applicable to advance directives regulation. The most relevant legal instruments in this respect are the European Convention on Human Rights and the Convention on Human Rights and Biomedicine.
As it is known, there is a general consensus, based on Article 8 ECHR on the right to private life, that there can be no intervention affecting a person without his or her consent. From this human right flow the principle of personal autonomy and the patient’s right to self-determination (of which both consent and refusal of consent to medical treatment are expressions). The Council of Europe has included this principle in article 5 of the Oviedo Convention, which legally binds the majority of member States. Article 9 of the Convention also covers the situation in which a patient is no longer able to express his or her will, by stipulating that the “previously expressed wishes” relating to a medical intervention by a patient who is not, at the time of the intervention, in a state to express his or her wishes “shall be taken into account”. Article 9 marks the first recognition of the value of advance directives in a common binding instrument, but European countries are not obliged under this provision to give legally binding force to advance directives. In fact, the wording of Article 9 is problematic in the sense that the expressions “to take into account” and “previously expressed wishes”, without any additional clarification, are too ambiguous and can be interpreted in very different ways. The Explanatory Report to the Convention does not help clarify these points.
Following the adoption of the Oviedo Convention, the Council of Europe has made efforts to set common principles in this field. Especially relevant are two recommendations adopted by the Committee of Ministers, namely Recommendation 1999(1418) on the Protection of the human rights and dignity of the terminally ill and the dying, and Recommendation (2009)11 on Continuing powers of attorney and advance directives for incapacity. Recommendation 1999(1418) encouraged member States, inter alia, to ensure that an incapacitated terminally ill or dying person’s advance directive or living will refusing specific medical treatments be observed, and to ensure that criteria of validity as to the scope of instructions given in advance, as well as the nomination of proxies and the extent of their authority be defined. Recommendation Rec(2009)11 recommended that member States promote advance directives, living wills or continuing powers of attorney, and laid down a number of principles to guide member States in regulating them. Similarly, Parliamentary Assembly Resolution 1859(2012) on Protecting human rights and dignity by taking into account previously expressed wishes of patients recommended that member States review their relevant legislation for possible improvements, and, if need be, that they put into place a “road map” towards such legislation promoting advance directives, living wills and/or continuing powers of attorney, on the basis of the Oviedo Convention and Recommendation (2009)11, involving consultation of all stakeholders before the adoption of legislation in parliament, and foreseeing an information and awareness-raising campaign for the general public, as well as for the medical and legal professions after its adoption.
The paper will critically examine the normative framework currently in force and assess the contribution offered by the guiding principles and criteria set by the Council of Europe to a possible “harmonisation” of advance directives regulation in Europe. The case law of the European Court of Human Rights on informed consent and informed refusal will also be taken into consideration to broaden the legal analysis and appraise the role played by the Strasbourg Court.
Does the CRPD advance advance directives in mental healthcare?
Professor Oliver Lewis, University of Leeds
This paper will review the relationship between the use of advance directives in mental healthcare and the laws that seek to regulate their use. It will survey promising practice from jurisdictions and in doing so will assess the balance that lawmakers have sought to strike a balance between mandating mental health services to respect a person’s autonomy versus a policy impulse to constrain decision-making on grounds of risk. It will review the potential impact on domestic legislation of the 2006 UN Convention on the Rights of Persons with Disabilities.