New Law and Ethics in Mental Health Advance Directives: The Convention on the Rights of Persons with Disabilities and the Right to Choose 0415532949, 9780415532945

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New Law and Ethics in Mental Health Advance Directives

The recognition of positive rights and the growing impact of human rights principles has recently orchestrated a number of reforms in mental health law, bringing increasing entitlement to an array of health services. In this book, Penelope Weller considers the relationship between human rights and mental health law, and the changing attitudes which have led to the recognition of a right to demand treatment internationally. Weller discusses the ability of those with mental health problems to use advance directives to make a choice about what treatment they receive in the future, should they still be unable to decide for themselves. Focusing on new perspectives offered by the Conventions on the Rights of Persons with Disabilities (CRPD), Weller explores mental health law from a variety of international perspectives including Canada, Australia, New Zealand and the United Kingdom, where policies differ depending on whether you are in England and Wales, or Scotland. These case studies indicate how human rights perspectives are shifting mental health law from a constricted focus upon treatment refusal, towards a recognition of positive rights. The book covers topics including: • • • •

refusing treatment new approaches in human rights international perspectives in mental health law the right to demand treatment.

The text will appeal to legal and mental health professionals as well as academics studying mental health law, and policy makers. Penelope Weller is the Deputy Director of the Centre for the Advance of Law and Mental Health at Monash University, Australia.

Explorations in Mental Health series

New Law and Ethics in Mental Health Advance Directives The Convention on the Rights of Persons with Disabilities and the Right to Choose Penelope Weller

New Law and Ethics in Mental Health Advance Directives The Convention on the Rights of Persons with Disabilities and the Right to Choose

Penelope Weller

First published 2013 by Routledge 27 Church Road, Hove, East Sussex BN3 2FA Simultaneously published in the USA and Canada by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2013 Penelope Weller The right of Penelope Weller to be identified as author of this work has been asserted by her in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data Weller, Penelope. New law and ethics in mental health advance directives : the Convention on the Rights of Persons with Disabilities and the right to choose / Penelope Weller. p. cm. — (Explorations in mental health) 1. Mental health laws. 2. Mental health—Moral and ethical aspects. 3. Insanity (Law) 4. Convention on the Rights of Persons with Disabilities and Optional Protocol (2007) 5. Mental illness—Psychological aspects. I. Title. K640.W45 2012 344.04'4—dc23 2012025654 ISBN: 978-0-415-53294-5 (hbk) ISBN: 978-0-203-07930-0 (ebk) Typeset in Bembo by RefineCatch Limited, Bungay, Suffolk

This book is dedicated to the memory of my father Frederick George Weller 1925–2011

Contents

Table of cases Table of legislation Table of international instruments Foreword Acknowledgements List of abbreviations 1

The right to choose

x xiii xvii xx xxii xxiii 1

Approach 2 Choice and human rights 3 Informed consent and capacity 4 Rights-based mental health laws 8 Mental health advance directives 9 The right to health 11 Structure of the book 12 PART 1

The Convention on the Rights of Persons with Disabilities

15

2

17

A quiet revolution Disability and human rights law 18 The reintegration of human rights 19 The right to health 22 The social determinants of health 24 The right to health in the CRPD 26

viii Contents

3

The social model of disability

27

The social construction of disability 27 The social model of health 29 The social model of disability in the CRPD 30 Participation and choice 31 Capacity and support 33 4

Non-discrimination and informed consent

38

Non-discrimination in the CRPD 39 Reasonable accommodation in mental health 42 Participation, equality and informed consent 43 Mental health advance directives 47 PART 2

Mental health advance directives

51

5

53

The genesis of a movement Social psychiatry, anti-psychiatry and radical social movements 53 Rights, refusal and entitlement 56 General health advance directives 58 Psychiatric advance directives 59

6

Ontario, Canada and the principle of choice

61

Autonomy, integrity and health law in Ontario 62 Determining capacity 67 Human rights and Ontario law 70 7

Mental health advance directives in England and Wales

75

Developments in the common law 76 Mental health advance directives in legislation 85 Advance refusals and mental health care 86 8

Advance ‘statements’ in Scotland Comprehensive mental health law reform 90 The Mental Health (Care and Treatment) Act 2003 92 Advance statements in practice 96 Non-discrimination 100

89

Contents ix

9

Policy development in Australia and New Zealand

103

Policy and legislative reform in New Zealand 103 Policy reform in Australia 106 Legislative reform in Australia 110 Mental health advance directives and risk 113 PART 3

Claiming choice

117

10 Access to treatment

119

The right to health and privacy 120 Pretty and the right to end life 121 Tysiac and access to lawful treatments 123 Glass, Trinitas and disputed treatment 125 Vulnerability and choice 127 11 Best interests and choice

130

ECrtHR and the right to liberty 131 Incapacity, partial capacity and participation 133 Patrick’s case and best interests in Victoria, Australia 136 Discrimination and the CRPD 139 12 Consensus, recovery and potential

143

Recovery and person-centred care 143 The potential of mental health advance directives 148 Capacity principles 149 PART 4

Conclusion

157

13 Beyond consensus

159

Soft and hard enforceability 160 Bibliography International instruments Index

162 177 181

Table of cases

AUSTRALIA Chappel v Hart (1998) 195 CLR 232 ..................................................................... 46 F v R (1983) 33 SASR 189 .................................................................................. 114 Hunter and New England Area Health Service v A (2009) 74 NSWLR 88 ........... 114 PJB v Melbourne Health & Anor (Patrick’s case) [2011] VSC 327 ............ 131, 136–41 Rogers v Whitaker (1992) 175 CLR 479 ................................................6, 46, 80, 114

CANADA A.M. v Benes (28 October 1998) 03-007/96 (Ont SC) ........................................... 64 A.M. v Benes (1999) 46 O.R. (3d) 271 (Ont CA) ............................................. 64, 65 BS, Re (19 April 2011) HA-10-5153; HA-10-5154 (Ont CCB) ............................... 71 Conway v Jacques (2002) 59 OR (3d) 737 (Ont CA) ............................. 65–7, 71, 119 Conway v Jacques (2005) 250 DLR (4th) 178 (Ont SCJ) ...........................69–71, 119 Conway v R, Centre for Addiction and Mental Health (26 February 2009) 32662 (SCC) ................................................................. 71, 74 Conway v R (1989) 70 C.R. (3d) 209..................................................................... 71 F, Re (17 September 2009) TO-09-1495; TO-09-1496; TO-09-1497 (Ont CCB)..... 67 Fleming v Reid (1991) 4 OR (3d) 74 (Ont CA) .....................................63, 66, 70, 72 Granovsky v Canada (Minister of Employment and Immigration) [2000] 1 SCR 703 ............................................................................................. 71 Hinze v Great Blue Heron Casino (12 January 2011) TR-0015-09 (Ont HRT) ...... 71 J, Re (6 August 2008) HA-08-1618 (Ont CCB)....................................................... 73 Malette v Shulman (1990) 72 OR 2d 417 ..................................6, 62, 63, 68, 150, 151 R v Conway (14 September 2010) C48862 (Ont CA) ............................................ 71 R v Conway (2008) 90 OR (3d) 335 (Ont CA)...................................................... 71 R v Conway [2010] 1 SCR 765 ....................................................................... 71, 74 R v Starson 2009 ONCA 826 (Ont CA) .......................................................... 69, 71 Reibel v Hughes [1980] 2 SCR 880 ....................................................................... 62 Rodriguez v Attorney General of Canada [1993] 3 SCR 519 ................................ 122

Table of cases xi

S, Re (17 July 2008) TO-08-0362 (Ont CCB) ......................................................... 67 S.M.T. v Abouelnasr (2008) 171 CRR (2d) 344 (Ont SCJ)................................ 70, 72 Starson, Re (3 March 2011) C51696 (Ont CA)........................................................ 69 Starson v Pearce (5 January 2009) 03-71/08 (Ont SCJ) ........................................... 69 Starson v Pearce (25 August 2011) 34167 (SCC) ..................................................... 69 Starson v Swayze (2003) 225 D.L.R (4th) 385 ................................................67–9, 72 T.(I.) v L.(L.) (1999) 46 OR (3d) 284 ..................................................................... 65

ENGLAND AND WALES A (Male Sterilization), Re [2000] 1 FCR 193 .......................................................... 83 Airedale NHS Trust v Bland [1993] AC 789 ............................................................ 76 B (Adult: Refusal of Medical Treatment), Re [2002] 2 All ER 449 ..................... 82, 83 Birch v University College London Hospital NHS Foundation Trust [2008] EWHC 2237 (QB) ........................................................................ 80 Bolam v Friern Hospital Management Committee [1957] 2 All ER 118 ...... 79, 80, 83 C (Adult: Refusal of Medical Treatment), Re [1994] 1 All ER 819 ...............................................................................6, 7, 76, 77, 79, 101 Chester v Afshar [2005] 1 AC 134 ........................................................................... 80 F (Mental Patient: Sterilisation), Re [1990] 2 AC 1............................................. 76, 83 J (A Minor) (Wardship: Medical Treatment), Re [1990] 3 All ER 930 ..................... 126 JT (Adult: Refusal of Medical Treatment), Re [1998] 1 FLR 48 ......................... 77, 78 L (Patient: Non-Consensual Treatment), Re [1997] 2 FLR 837 ................................ 78 MB (Adult: Medic al Treatment), Re [1997] 2 FCR 541 ................................................. 44, 45, 78, 79, 83 MM (an adult), Re [2007] 3 FCR 788 ..................................................................... 84 NHS Trust v T (Adult Patient: Refusal of Medical Treatment) [2004] 1 All ER 387 .......................................................................................... 79 R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003 ......................................................................................... 81, 82 R (on the application of Oliver Leslie Burke) v The General Medical Council [2006] QB 273 .................................................................. 81, 82 S (Adult Patient: Sterilisation Patient’s Best Interest), Re [2000] 2 FLR 389 ........ 83, 84 Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871 (HL) ................................................. 79, 80 T (Adult: Refusal of Medical Treatment), Re [1992] 4 All ER 649 [649-70] ....... 76, 77

UNITED STATES Bartling v Superior Court 209 Cal Rptr 220 (Ct. App. 1984) .................................. 58 Betancourt v Trinitas Hospital, 415 NJ Super 301 (NJ SC Ct App, 2010) ............... 127 Brophy v New England Sinai Hospital 497 NE 2d 626 (Mass, 1986) ....................... 58 Buck v Bell 274 US 200 (1927) .............................................................................. 54

xii Table of cases

Canterbury v Spence 464 F 2d 772 (DC Cir, 1972) .......................................... 46, 80 Cobbs v Grant 104 Cal Rptr 505 (1972) ................................................................. 58 Cruzan v Missouri 497 US 261 (1990).................................................................... 58 Hargrave v Vermont 340 F 3d 27 (2nd Cir, 2003) .................................................... 59 Lake v Cameron 364 F 2d 65 7, 660 (DC Cir 1966) ............................................................................................. 56 Lane v Candura 376 NE 2d 1232, 1245 (Mass Ct App, 1978) .................................. 58 Lessard v Schmidt 349 F Supp 1078 (ED Wis, 1972)................................................ 57 O’Connor v Donaldson 422 US 563 (1975) ........................................................... 57 Quinlan, Re 355 A 2d 647 (NJ, 1976) ..................................................................... 58 Schloendorff v Society of New York Hospital 105 NE 92 (NY, 1914) .............5, 46, 62 Shelton v Tucker 364 US 479 (1960) ...................................................................... 56 Wyatt v Stickney 325 F Supp 781 (MD Ala, 1971) ............................................ 56, 57

EUROPEAN COURT OF HUMAN RIGHTS B v France (1993) 16 EHRR 1............................................................................. 120 Burghartz v Switzerland (1994) 18 EHRR 101..................................................... 120 Cossey v United Kingdom (1990) 13 EHRR 622................................................. 121 Dudgeon v United Kingdom (1981) 3 EHRR 149 ............................................... 120 Glass v United Kingdom (2004) 29 EHRR 341.....................81, 120, 121, 125–8, 151 H.L. v United Kingdom [2004] 40 EHRR 761 ...................................................... 94 Herczegfalvy v Austria (1993) 15 EHRR 437 ......................................................... 76 Johnson v United Kingdom [1997] EHRR 296 ................................................ 131–3 Kolanis v United Kingdom [2006] 42 EHRR 12 .............................................. 131–3 Malone v United Kingdom (1984) 7 EHRR 14 ................................................... 123 Mikuli´c v Croatia (53176/99) [2002] 1 FCR 720 ................................................. 120 Olsson v Sweden (No. 1) (1989) 11 EHRR 259 ................................................... 121 Pretty v United Kingdom (2002) 35 EHRR 1 .........................75, 82, 120–3, 127, 128 Stanev v Bulgaria (36760/06) Unreported January 17, 2012 (ECHR) .................................................131, 133–7, 139–41, 149 Tysiac v Poland (2007) 45 EHRR 42 ...................... 72, 120, 121, 123–5, 127, 128, 136 Winterwerp v Netherlands [1979] 2 EHRR 387 ................................... 132, 149, 152 X and Y v Netherlands (1985) 8 EHRR 235 ........................................................ 120

Table of legislation

AUSTRALIA Australian Capital Territory Mental Health (Treatment and Care) Act 1994 ...............................................112, 113 Victoria Charter of Human Rights and Responsibilities Act 2006................................136, 137 Draft Exposure Mental Health Bill 2010 ......................................... 102, 110, 112, 113 cl 7(4)(d)............................................................................................................... 111 cl 20(5)(b) ............................................................................................................. 111 cl 90(d) ................................................................................................................. 111 cl 125 ................................................................................................................... 111 cl 132 ................................................................................................................... 112 cl 150 ................................................................................................................... 110 cl 151(a)-(e) .......................................................................................................... 111 cl 152 ................................................................................................................... 110 cl 153 ................................................................................................................... 111 cl 154(1) ............................................................................................................... 111 cl 154(3) ............................................................................................................... 111 cl 154(4) ............................................................................................................... 111 Guardianship and Administration Act 1986.....................................................137, 138 s 4(2) .................................................................................................................... 137 s 28(2)(c) .............................................................................................................. 138 s 46(1)(a) .............................................................................................................. 138 s 46(2)(a) .............................................................................................................. 138 s 46(2)(b) .............................................................................................................. 138 s 46(3) .................................................................................................................. 138 s 49(2)(a) .............................................................................................................. 138 Mental Health Act 1986...................................................................................45, 113 s 8 ........................................................................................................................ 113 s 8(1) .................................................................................................................... 113 s 8(1)(a) ................................................................................................................ 113 s 8(1)(b) ................................................................................................................ 113

xiv Table of legislation

s 8(1)(c) .........................................................................................................113, 114 s 8(1)(d) ................................................................................................................ 114 s 8(1)(e) ................................................................................................................ 114 Western Australia Draft Mental Health Bill 2011 .............................................................................. 112 cl 142 ................................................................................................................... 112

CANADA Canadian Bill of Rights........................................................................................... 70 Canadian Charter of Rights and Freedoms ........................................ 63, 65, 70, 71, 74 s 7 ............................................................................................................... 63, 65, 70 s 12......................................................................................................................... 70 s 15......................................................................................................................... 70 s 24(1) .................................................................................................................... 74 Canadian Constitution ............................................................................................ 70 Canadian Human Rights Act 1977.......................................................................... 70 Health Care Consent Act 1996 (Ontario) ............................................63–7, 69, 70, 73 s 4(1) ................................................................................................................ 67, 72 s 5(2) ...................................................................................................................... 65 s 10(1) .................................................................................................................... 64 s 10(1)(b) ................................................................................................................ 64 s 12(2) .................................................................................................................... 64 s 21......................................................................................................................... 64 s 21(1) ................................................................................................................ 64–6 s 21(1)(1) ................................................................................................................ 66 s 21(2) .............................................................................................................. 64, 66 s 21(2)(a) ................................................................................................................ 73 s 21(2)(b) ................................................................................................................ 73 s 37(3) .................................................................................................................... 65 s 42(1) .................................................................................................................... 66 Mental Health Act 1980 (Ontario) .......................................................................... 63 s 262 ....................................................................................................................... 63 Mental Health Act 1990 (Ontario) .......................................................................... 63 Substitute Decisions Act 1992 (Ontario) ................................................................. 63

NEW ZEALAND Bill of Rights Act 1990 ......................................................................................... 103 s 11....................................................................................................................... 104 Code of Health and Disability Services Consumers’ Rights 1996....................103, 104 Section 2 .............................................................................................................. 103 Code 7(1) ............................................................................................................. 104 Code 7(2) ............................................................................................................. 104

Table of legislation xv

Code 7(3) ......................................................................................................104, 105 Code 7(4) ............................................................................................................. 104 Code 7(5) ............................................................................................................. 104 Code 7(7) ............................................................................................................. 104 Health and Disability Commissioner Act 1994 ...................................................... 103 Mental Health (Compulsory Assessment and Treatment) Act 1992 ...................................................................................................105, 106 Mental Health (Compulsory Assessment and Treatment) Act 1992 Guidelines 2000 ................................................................................ 106 Mental Health (Compulsory Assessment and Treatment) Amendment Act 1999 ...................................................................................... 106 National Mental Health Sector Standards 2001 ..................................................... 106 s 5(2)(c) ................................................................................................................ 106 s 16....................................................................................................................... 106

POLAND Family Planning (Protection of the Human Foetus and Conditions Permitting Pregnancy Termination) Act 1993 ................................................... 123

UNITED KINGDOM England and Wales Human Rights Act 1998 ..............................................................75, 76, 80, 83, 84, 94 Mental Capacity Act 2005...................................................................49, 76, 83–6, 88 s 1 .......................................................................................................................... 83 s 1(5) ...................................................................................................................... 83 s 2 .......................................................................................................................... 83 s 3 .......................................................................................................................... 83 s 4 .................................................................................................................... 83, 85 s 4(1) ...................................................................................................................... 83 s 4(2) ...................................................................................................................... 83 s 4(4) ...................................................................................................................... 83 s 4(5) ...................................................................................................................... 83 s 4(6) ...................................................................................................................... 83 s 4(6)(a) .................................................................................................................. 85 s 4(7) ...................................................................................................................... 83 s 24......................................................................................................................... 85 s 25......................................................................................................................... 85 s 25(2)(b) ................................................................................................................ 85 s 25(3) .................................................................................................................... 85 s 25(4) .................................................................................................................... 85 s 26......................................................................................................................... 85 s 26(2) .................................................................................................................... 85

xvi Table of legislation

s 26(3) .................................................................................................................... 85 s 26(4) .................................................................................................................... 85 s 26(5)(a) ................................................................................................................ 85 s 26(5)(b) ................................................................................................................ 85 Mental Health Act 1983........................................................................... 76, 86–8, 90 Pt IV ........................................................................................................... 49, 86, 87 Scotland Act 1998— s 29......................................................................................................................... 89 Scotland Court of Session Act 1988 ...................................................................................... 94 Mental Health Act 1984.......................................................................................... 89 Mental Health (Care and Treatment) (Scotland) Act 2003 ...............................................................................49, 89, 92–8, 100, 102 Pt 16 ...................................................................................................................... 94 s 1(3)(g) ................................................................................................................ 101 s 235 ....................................................................................................................... 94 s 236 ....................................................................................................................... 94 s 239 ................................................................................................................. 94, 95 s 239(1)(a)............................................................................................................... 94 s 239(1)(b) .............................................................................................................. 94 s 239(1)(c) .............................................................................................................. 94 s 239(4) .................................................................................................................. 95 s 241 ....................................................................................................................... 95 s 241(a) ................................................................................................................... 95 s 241(4) .................................................................................................................. 95 s 242 ....................................................................................................................... 95 s 242(6) .................................................................................................................. 95 s 243 ....................................................................................................................... 95 s 255 ....................................................................................................................... 93 s 259 ....................................................................................................................... 93 s 260 ....................................................................................................................... 93 s 261 ....................................................................................................................... 93 s 275 ................................................................................................................. 92, 93 s 276 ................................................................................................................. 92, 93

UNITED STATES OF AMERICA Americans with Disabilities Act 1990 ...................................................................... 59 Constitution, 14th Amendment ............................................................................... 58 Mental Health Law (Act 114) (Vermont)................................................................. 59 Patient Self Determination Act 1990 ................................................................... 9, 59

Table of international instruments

EUROPEAN UNION European Convention on Bioethics......................................................................... 89 European Convention on the Protection of Human Rights and Fundamental Freedoms ......................................................75, 76, 84, 89, 120–122, 124, 132, 134 Art 2 ...................................................................................................................... 81 Art 3 ......................................................................................................... 75, 81, 134 Art 5 .............................................................................................................132, 133 Art 5(1) .....................................................................................................132–4, 136 Art 5(1)(a)–(f) ....................................................................................................... 136 Art 5(1)(e) ............................................................................................................ 136 Art 5(4) .........................................................................................................132, 134 Art 5(5) ................................................................................................................ 134 Art 6(1) ................................................................................................................ 134 Art 8 .......................................................................................... 81, 84, 120–7, 133–5 Art 8(1) ..........................................................................................120–3, 126–8, 154 Art 8(2) .................................................................................. 120–2, 125–7, 135, 154 Art 13................................................................................................................... 134 Art 14..................................................................................................................... 81 Recommendation of the Committee of Ministers to Member States of the Council of Europe Concerning the Protection of Human Rights and Dignity of Persons with Mental Disorder 2004 ................................. 89 Recommendation of the Committee of Ministers to Member States of the Council of Europe on Principles Concerning the Legal Protection of Incapable Adults No R (99) 4 1999 ...................................................................... 134, 135, 140, 141 pr 2 ...................................................................................................................... 134 pr 3 ....................................................................................................... 134, 135, 141 pr 6 ...................................................................................................................... 135 pr 13 .................................................................................................................... 135 pr 14 .................................................................................................................... 135 Standards of the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment 2011 ............................... 89

xviii Table of international instruments

UNITED NATIONS Charter of the United Nations ................................................................................ 38 Committee for the Elimination of Discrimination Against Women, General Recommendation No. 24 (Twentieth session, 1999) ................................5 Committee on Economic, Social and Cultural Rights, General Comment No. 5: Persons with Disabilities, 9 December 1994 ................ 19 Committee on Economic, Social and Cultural Rights, General Comment 14 on the Right to the Highest Attainable Standard of Health, 11 August 2000 ....................................................................... 11, 23, 24 Committee on the Rights of the Child (CRC), CRC General Comment No. 4: Adolescent Health and Development in the Context of the Convention on the Rights of the Child, 1 July 2003 ..........................................................................................................5 Convention on the Elimination of Discrimination Against Women 1979 ................................................................................................. 5, 38 Art 12................................................................................................................. 5, 22 Art 24..................................................................................................................... 12 Convention on the Elimination of Racial Discrimination........................................ 38 Convention on the Rights of the Child 1989 .......................................................... 38 Art 24..................................................................................................................... 23 Convention on the Rights of the Person with Disabilities (2006) 2, 3, 5, 12, 13, 15–50, 71–3, 75, 89, 103, 106, 107, 110, 119, 129–31, 133, 136, 139–41, 159–61 Preamble ..................................................................................................... 31, 33, 42 Art 1 ...........................................................................................................30–2, 140 Art 1(3) .................................................................................................................. 34 Art 2 .............................................................................................. 22, 32, 34, 41, 140 Art 3 ...................................................................................................................... 32 Art 3(a)–(h) ............................................................................................................ 32 Art 3(a)................................................................................................................... 33 Art 4 ................................................................................................................ 32, 39 Art 4(a)................................................................................................................... 42 Art 4(1) .................................................................................................................. 39 Art 4(1)(b) ........................................................................................................ 39, 42 Art 4(2) .................................................................................................................. 40 Art 5 ...................................................................................................................... 33 Art 12................................................................................ 12, 33–6, 71, 134, 135, 139 Art 12(1) .......................................................................................................... 33, 34 Art 12(2) ................................................................................................................ 34 Art 12(3) ................................................................................................. 7, 34, 35, 72 Art 12(4) ..............................................................................................35, 36, 71, 139 Art 14..................................................................................................................... 36 Art 16..................................................................................................................... 47 Art 16(1) ................................................................................................................ 48 Art 17............................................................................................................... 36, 48 Art 25............................................................................................................5, 23, 36 Art 25(a) ................................................................................................................. 23

Table of international instruments xix

Art 25(b) ................................................................................................................ 23 Art 25(d) ..................................................................................................... 5, 23, 102 Art 33(2) ................................................................................................................ 71 Convention on the Rights of the Person with Disabilities, Optional Protocol ............................................................................................ 106 Declaration on the Rights of Disabled Persons 1975 ............................................... 18 Declaration on the Rights of Mentally Retarded Persons 1971 ................................ 18 International Convention on the Elimination of all Forms of Racial Discrimination 1965— Art 5 ................................................................................................................ 12, 22 International Covenant on Civil and Political Rights 1976 ......................20, 22, 26, 42 Art 2 ...................................................................................................................... 21 Art 6 ................................................................................................................ 11, 22 International Covenant on Economic, Social and Cultural Rights 1976 ...................................................................... 19, 20, 22, 23, 26, 40, 42 Art 2(1) ............................................................................................................ 21, 40 Art 2(2) ............................................................................................................ 40, 41 Art 12.......................................................................................................... 11, 22, 23 Art 12(1) .......................................................................................................... 11, 22 Art 12(2) ................................................................................................................ 22 Rio Political Declaration on Social Determinants of Health 2011............................ 25 Standard Rules on the Equalization of Opportunities for Persons with Disabilities 1993 ...................................................................... 18, 19 Universal Declaration of Human Rights ............................................................. 3, 20 Art 1 ...................................................................................................................... 38 Art 2 ...................................................................................................................... 38 Art 7 ...................................................................................................................... 38 Art 23..................................................................................................................... 38 Vienna Declaration and Programme of Action 1993 ..................................... 11, 19, 22 Art 5 ........................................................................................................... 11, 13, 19

Foreword Professor Bernadette McSherry

Ensuring mental health laws protect human rights both in theory and practice is an ongoing challenge. The law regulates and shapes the way in which mental health care is delivered and the way in which individuals with mental health problems are treated by both civil and criminal justice systems. The medical treatment of many individuals with mental health problems generally corresponds with the medical treatment of other patients in the sense that they can (at least in theory) refuse treatment and, if hospitalized, leave hospital at any time and use the same complaints procedures as any other patient. However, this is not always how the system operates in practice. When people are considered unable or incapable of consenting to treatment, or are deemed to be a danger to themselves or others because of mental health problems, legislation in many countries enables them to be detained as involuntary patients. This important book examines the role of mental health advance directives in ensuring that the health and lifestyle decisions of those experiencing mental health problems are respected. It argues that mental health advance directives can help shift the current focus in mental health laws away from that of ‘negative’ rights, in the sense of freedom from state interference, towards recognizing ‘positive’ rights which place obligations on governments to ensure that certain rights, such as the right to the enjoyment of the highest attainable standard of health, are upheld. It is crucial that laws which enable involuntary detention and treatment are firmly rooted in the latest international human rights standards set out in the UN Convention on the Rights of Persons with Disabilities (CRPD), which includes people with mental health problems. The CRPD clarifies the obligations on States Parties to promote and ensure the rights of persons with disabilities and sets out the steps that should be taken to ensure equality of treatment. It goes into much more detail than previous general human rights conventions concerning what action needs to be taken to prohibit discrimination. The CRPD is clear that States Parties must recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

Foreword xxi

This means looking at the decision making supports people might need to be able to exercise this right. Mental health advance directives can be seen as one avenue of supporting optimal decision making. This book argues that the CRPD provides a framework for reassessing the efficacy of mental health advance directives. As explored in Chapter 8, the Scottish legislative model for advance directives has been hailed as the best to date, yet the use of such directives is still rare. This may be because those who could use them have difficulty in understanding how they work or are sceptical about their benefit. If there are too many regulations relating to filling out advance directives and registering them, then they are unlikely to be used. There may also be barriers to the use of mental health advance directives stemming from mental health professionals’ attitudes towards them. There may be concerns about how advance directives can be used in relation to involuntary treatment. There may also be concerns about how advance directives can be accessed, if and how they can be overridden and the time involved in reviewing them. Despite challenges with implementation, this book argues that mental health advance directives show great potential in developing a communicative model of mental health care. It is important to keep in mind that mental health problems are not rare. Estimates suggest that 13 per cent of global disease is constituted by mental, neurological and substance-use disorders – a total that surpasses both cardiovascular disease and cancer. Informed consent in relation to the treatment of such disorders is of the utmost importance in ensuring that the right to the enjoyment of the highest attainable standard of (mental) health can be upheld. Dr Weller has been a generous and inspirational colleague during her time working on the Australian Research Council’s Rethinking Mental Health Laws project at Monash University. It is gratifying to see her work on the project culminate in this thought-provoking book and I recommend that it be read by all those interested in mental health policy. As argued throughout, changing the law to incorporate mental health advance directives should be viewed as a positive step towards implementing the principles set out in the CRPD. Professor Bernadette McSherry is an Australian Research Council Federation Fellow and the Director of the Centre for the Advancement of Law and Mental Health.

Acknowledgements

This book contributes to the work of the Rethinking Mental Health Laws project, at the Centre for the Advancement of Law and Mental Health in the Faculty of Law at Monash University in Melbourne, Australia. The Rethinking Mental Health Laws project is funded by an Australian Research Council Federation Fellowship awarded to Professor Bernadette McSherry. I would like to thank Professor Bernadette McSherry and the members of the Rethinking Mental Health Laws team for their encouragement and support. Special thanks are given to Ms Sarah McHutchison, Ms Jacinta Efthim and Ms Kathleen Patterson for their invaluable assistance in the preparation of the manuscript.

List of abbreviations

ADA AHMAC AHMC CCB CEDAW CESCR CG CPT CRC CRPD CSDH ECHR ECrtHR ECT HCC HCCA HDC HIV/AIDS HREOC HUG ICCPR ICERD

ICESCR JSCOT MCA MHA MHAD MHCA

Americans with Disabilities Act Australian Health Ministers Advisory Council Australian Health Ministers’ Conference Ontario Consent and Capacity Board Convention on the Elimination of Discrimination Against Women Committee for Economic, Social and Cultural Rights Clinical Guideline European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment Convention on the Rights of the Child Convention on the Rights of Persons with Disabilities Commission for the Social Determinant of Health European Convention on Human Rights and Fundamental Freedoms European Court of Human Rights Electroconvulsive Therapy Healthcare Commission Health Care Consent Act 1996 (Ontario) Health and Disability Commissioner Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome Human Rights and Equal Opportunity Commission High End Users Group (Scotland) International Covenant on Civil and Political Rights International Convention on the Elimination of all Forms of Racial Discrimination International Covenant on Economic, Social and Cultural Rights Joint Standing Committee on Treaties Mental Capacity Act Mental Health Act Mental Health Advance Directive Mental Health Council of Australia

xxiv List of abbreviations

MI Principles MOH MWC NGOs NHS NICE NIMH NMHP PAD PMHCCN PSDA RCP SCI SCMH SCT SDA SLC UDHR UN WANA WFPU WHO WNUSP

United Nations Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care New Zealand Ministry of Health Mental Welfare Commission for Scotland Non-Government Organizations National Health Service National Institute for Health and Clinical Excellence National Institute for Mental Health (England) National Mental Health Plan Psychiatric Advance Directive Private Mental Health Consumer Carer Network (Australia) Patient Self Determination Act Royal College of Psychiatrists (England) Support Coalition International Senate Select Committee on Mental Health, Australia Supervised Community Treatment Substitute Decisions Act 1992 (Ontario) Scottish Law Commission Universal Declaration of Human Rights United Nations We Are Not Alone World Federation of Psychiatric Users World Health Organization World Network of Users and Survivors of Psychiatry

Chapter 1

The right to choose

The ‘right to choose’, in health, invokes the idea that people are entitled to have control over their own health care. It denotes an expectation that there will be a degree of choice when treatments and services are provided, with people accessing different types of health care in a variety of settings. In this sense, the right to choose refers to the relationship that exists between people, health-care services and health-care providers, and to the wider relationship between people and the state with respect to health matters in developed western nations.The right to choose raises issues about the quality, efficacy, distribution, funding and governance of clinical and social care services and raises complex questions about the state’s obligation to provide health-care services. Considering the interrelationship between state obligations and the ‘right to choose’ focuses attention on the changing legal and ethical landscape that surrounds the provision of health and mental health care. In mental health, questions about the ‘right to choose’ are being played out in a global debate about mental health advance directives, and the changing relationship between mental health law and human rights. Mental health advance directives have been a feature of mental health law reform since the 1980s.They have generated a significant body of literature and an expanding nomenclature.The term ‘mental health advance directives’ in this book refers to the broad range of formal or informal directives or statements that document a person’s health and personal decisions. The directives or statements may contain information about future mental health care and treatment and other health-related matters. The term is an umbrella term that encompasses any communication that is intended to guide future decisions when a person is no longer able to make a decision for themselves, or if the person specifies, at a time when the person’s decision making abilities may be impaired (Szmukler 2006). It incorporates related terms such as ‘psychiatric advance directives’, ‘advance statements’, ‘advance agreements’, ‘advance decisions’, ‘preference plans’, ‘consent-in-advance instruments’, ‘advance treatment authorizations’, ‘advance decisions’, ‘future treatment plans’, ‘living wills’, ‘crisis cards’, ‘crisis plans’, ‘advance care plans’, and ‘Ulysses agreements’, ‘Ulysses contracts’ and similar terms (Gray et al. 2008: 317). As the various terms

2 The right to choose

indicate, the common characteristic of mental health advance directives is their orientation to the future.They are mechanisms that assist ‘advance care planning’ and the new approaches to decision making in health care that support the autonomy and independent decision making. First incorporated into law in the United States in the early 1990s, mental health advance directives are gradually being adopted throughout the world, in different forms and with different legal consequences. They have followed the ongoing development of ‘rights-based’ mental health laws, evolving with the changing concerns of mental health law reform (McSherry and Weller 2010). For example, rights debates in health and mental health in the 1970s and 1980s emphasized individual choice and control. At this time, rights were conceived as ‘negative’ or ‘freedom from’ rights that protected individuals from unwarranted interference by the state or ‘agents’ of the state. Accordingly, mental health advance directives were pursued as means of refusing treatment. Towards the close of the twentieth century, human rights debates began to emphasize positive rights, adopting an integrated view of socially embedded rights encapsulated in concepts such as the ‘right to health’. Integrated approaches to human rights emphasize positive entitlements to economic, social and cultural rights (Ghai and Cottrell 2004). The right to health emphasizes health and social care and the corresponding responsibility of states to provide health care and social services, as well as the right to have the full range of relevant social, economic and environmental factors oriented toward the achievement of health (Prah Ruger 2009). An integrated view of human rights also offers new ways to think about mental health advance directives.

Approach This book considers mental health advance directives in light of contemporary human rights debates. The first part of the book examines the human rights framework expressed in the Convention on the Rights of Persons with Disabilities (2006) (CRPD). The second part of the book provides a series of case studies of the current development of domestic law with respect to mental health advance directives, considered in light of the new perspectives provided by the CRPD. The case studies illustrate the tensions that arise in law, policy and practice when Commonwealth jurisdictions engage with mental health advance directives. The final part of the book examines the emergence of new approaches to choice and the adjudication of health-related rights in human rights-based jurisprudence. Considering mental health advance directives from a human rights perspective begs a re-examination of the relationship between mental health law and human rights (McSherry and Weller 2010; Perlin 2011b).This book argues that the ‘new era’ of human rights offered by the CRPD enables mental health advance directives to be recast as mechanisms that support the recognition of positive rights in mental health law (Lawson 2007). Developed to their

The right to choose 3

full potential, they may play an important role in the realization of the right to health. This chapter begins the discussion by introducing the major themes and arguments of the book. It provides an overview of the principles of informed consent and capacity in health law, identifies the key features of rights-based mental health law, the foundations of the ‘right to health’ movement, and introduces the CRPD in the context of the right to health. The chapter closes with an outline of the book’s structure.

Choice and human rights Conceptualizing mental health advance directives as a vehicle for positive rights and the right to health invites an analysis of the developing interrelationship between ‘rights-based’ mental health laws and international human rights principles from the perspective of a ‘right to choose’. A first step in the analysis of mental health advance directives from a human rights perspective is to distinguish the notion of ‘choice’ in human rights from the rhetoric of neoliberalism. In a human rights framework, preferences for choice are linked with the principles of autonomy, self-determination, freedom, respect and dignity. These foundation principles are expressed in the Universal Declaration of Human Rights (UDHR) which emphasizes the ‘inherent dignity’ and ‘equal and inalienable rights of all members of the human family’ (UDHR 1948). They were utilized by the health and consumer rights movements in the second half of the twentieth century to link the concepts of ‘inherent dignity’ with the principle of ‘self-realization’, creating a notion of choice that is connected with the concept of physical and mental integrity. In the 1970s the idea of independent choice was employed by the health consumer movement to challenge the dominance of medical power, principally by asserting a ‘right to refuse’ treatment (Darvall 1993). Couched in the language of negative rights, the emphasis on the right to refuse in the health-care debate reflected a demand to be free from interference from the state. In health, the demand for ‘freedom from’ rights and non-interference quickly expanded to incorporate the notion of choice and its correlate, the positive entitlement to access health services. The debates that ensued brought the questions of autonomy and choice to the forefront of medical ethics in the 1980s and 1990s (Veatch 1997) where they remain a principal question in the bioethical debate (Foster 2011). The importance of choice is reflected in contemporary health law. In health law, the right to choose to accept or reject health care recognizes the broader notion that individuals are entitled to make their own health choices and to pursue their ‘own interpretation of what it means to be healthy’ (Waterman 2011: 362). Contemporary human rights principles similarly emphasize the right to choose, but recognize it as an expression of autonomy, and a reflection of the

4 The right to choose

value that is accorded to diversity, equality and non-discrimination in the human rights framework. From a human rights perspective, ‘choice’ in health accords with the themes of the developing human rights debate. For example, in mental health and disability, ‘the right to choose’ is closely associated with the claim to equality, and the right to access health services as an essential ‘prerequisite’ for the enjoyment of other human rights (Rioux et al. 2011: 3). People with health and mental health conditions lay claim to equal recognition before the law, and equal entitlement to autonomy, health and self-realization through the language of choice. Choice, in its human rights guise, denotes a contextual, interdependent and socially embedded decision making environment. From a human rights perspective, the ‘right to choose’ is always a socially embedded principle. In contrast, the neo-liberal discourse links the notion of choice to a conceptualization of the individual as an independent, atomistic, market-driven consumer. The language of ‘choice’ appears as a rhetorical device to promote neo-liberal forms of economic and political governance. In contemporary health policy, for example, neo-liberal economic policy encourages the privatization of health-care services and the exposure of both public and private health systems to the pressures of market-driven choice and consumer demands (Gabe and Calnan 2009). The most compelling critique of the neo-liberal rhetoric concerning choice is found in the social sciences literature. For example, Jean Baudrillard identified ‘choice’ as pivotal to the structure of consumer culture, questioning the moral, social and economic value of the kind of choices that were possible in consumer economies (Baudrillard 1998). Martha Nussbaum similarly associates choice in neo-liberal perspectives with a reified notion of the rational self-choosing individual who responds to market forces. Nussbaum argues that this view provides an impoverished explanatory framework for understanding human action (Nussbaum 1997). In the United Kingdom, Jonathan Gabe and Michael Calnan observe that the neo-liberal discourse positions ‘patient choice’ as a central element in a new managerialism that is concerned with accountability, quality assurance and clinical governance (Gabe and Calnan 2009: 67). In the United States, the rhetoric of choice and freedom is linked to the politics of neo-liberalism. It also features in the phrase ‘the right to choose’ which has become overwhelmingly associated with the debate about women’s access to abortion services (Arkes 2002). Choice and human rights share a complex conceptual landscape.

Informed consent and capacity In health law, the right to choose is closely linked to the notion of autonomy and reflected in the doctrine of informed consent. During the second half of the twentieth century most developed western jurisdictions recognized legal rules that placed boundaries around the exercise of unfettered medical discretion. The doctrine of informed consent requires health-care professionals to

The right to choose 5

provide medical treatment only after the person has given free and informed consent to the proposed procedure or treatment, except in defined circumstances. Care may be provided in an emergency, or if it is otherwise authorized by law (Faden et al. 1986). Informed consent represents a positive right to be informed, and encompasses a right to refuse medical treatment on any basis (Winick 1997). In contemporary bioethics, it is also accepted that personal choice should guide the provision of health care in accordance with the overarching requirement of respect for autonomy (Manson and O’Neill 2007). The idea of advance directives in general health, and mental health advance directives, are based on the premise that autonomy-based rights extend the right to choose to the future.This accords with the high social value placed on the inherent worth and dignity of each person, and on the interests of modern liberal states in securing social order by respecting personal autonomy, self-determination and bodily integrity. Developing themes in the human rights discourse are adding depth and colour to the notion of informed consent (Weller 2013). Informed consent is referred to by United Nations Committee for the Elimination of Discrimination Against Women in General Recommendation No. 24 (20th session 1999) which provides an extended interpretation of Article 12 of the Convention on the Elimination of Discrimination Against Women. It is referred to by Committee for the Rights of the Child in General Comment No. 4 (2003) on Adolescent Health and appears in the CRPD. It is also referred to in paragraph (d) of Article 25 (Health) in the CRPD requiring health professionals to provide care of the same quality to persons with disabilities as to others, including ‘on the basis of free and informed consent’. In the context of binding international convention, the principle of informed consent gathers an added significance as a mechanism that provides protection against the potential for human right abuse in the provision of health care. The protective mechanism or rationale underpinning informed consent derives from the principle that only health and medical decisions and procedures that are acceptable to the person are legitimate. Human rights principles therefore invite an extension of the traditional principles of informed consent as they are understood in domestic law. As is well known, the case of Schloendorff v Society of New York Hospital (1914) (Schloendorff ) in the United States in the early twentieth century established the principle that health-care personnel must provide specific information about the proposed treatment to the person who is making the treatment decision. According to Schloendorff, the person must be of ‘sound mind’ (at [93]), which has since been interpreted as the ability to understand the information, use their powers of reasoning to apply the information to their particular circumstances and appreciate the consequence of the decision. It is also recognized that the decision must be untainted by fraud and free from undue influence (Stewart and Lynch 2003). The elements of the informed consent reflect an assumption that respect for the integrity and dignity of the person is best protected when people who seek assistance from medical personnel are apprised of the information that is of

6 The right to choose

importance to them. This enables them to make a ‘free and informed’ decision about whether to accept health care. As is discussed in more detail below, free and informed consent is described in the leading cases of Canterbury v Spence (1972) and Rogers v Whitaker (1992). In both these cases the provision of full clinical information was required. Malette v Shulman (1990) expands the approach by acknowledging that clinical information may be irrelevant if a decision is based on personal values that are unrelated to the clinical context. The international case law suggests that what is required depends upon the medical, social and personal circumstances of the person, and the decisions or preferences they express with respect to those particular circumstances. The person’s decision may legitimately draw on information or expertise other than clinical expertise. In this scenario, the information that is gathered from sources beyond medicine is no less valuable to the decision than the relevant medical information. In a world where physical health and mental health are closely entwined with personal identity, the person’s appraisal of his or her personal circumstance is of paramount importance. Moreover, human rights principles require respect for the physical and mental integrity of the person, which in turn grants a privileged position to the views of the person.This principle is reinforced by the practical observation that the person who is affected by a decision is best placed to calculate the consequences of it.The person’s assessment of their own particular circumstances and their own appreciation of what constitutes health and wellbeing are of critical importance in the calculation of future health care. For example, in the English case of Re C (Adult: Refusal of Treatment) (1994) (Re C) which concerned the validity of an advance instruction, the court upheld Mr C’s preference for conservative treatment for gangrene in his foot, allowing that his preference to avoid becoming an amputee was a valid and reasonable decision. Re C foreshadows the scholarship on informed consent that identifies the core characteristic of informed consent as a ‘communicative transaction’ (Manson and O’Neill 2007: viii). It also illustrates recognition by the courts that clinical decisions are contextual decisions that must consider the point of view of the person. Re C illustrates the entwined relationship between information and capacity in the informed consent approach. Informed consent principles emphasize ‘capacity’ as both a threshold requirement for consent, and an element of it. It is generally settled law that people have capacity if they are able to understand the information that is presented to them, and appreciate the consequences of making a decision in their particular circumstance (Grisso and Appelbaum 1998: 31). Rather than seeing capacity or incapacity as fixed and opposite attributes, this approach conceptualizes capacity as fluid, temporal and decision specific. In contemporary health law, capacity is placed as a relevant consideration throughout the clinical relationship. It must be assessed continuously, in relation to each decision, bearing in mind that a person may be capable of making some decisions at the same time as they are incapable of making others. Thus the ‘right to choose’ in health and mental health has ‘problematized’ the concept of capacity.

The right to choose 7

The recognition that capacity is a variable attribute that must be continuously assessed has replaced the traditional assumption that some groups of people lack capacity. In the nineteenth century, the philosophical link between autonomy, rationality and reasoned moral choice supported the notion that certain groups of people, such as women, children,‘indigents’, and people with mental disorders were ‘naturally’ deficient, vulnerable to undue influence from others, and lacking in capacity for moral reasoning. As Robert Castel observes, these groups were placed under the moral tutelage of medicine, which established the dual tradition of protective paternalism and medical supervision (Castel 1991). While informed consent and capacity principles are supposed to erode the old divisions, they may have contradictory effects. For example, people who agree or acquiesce to treatment may be taken to have given ‘consent’ when in fact they may have little understanding of the proposed treatment. Others may appear to lack understanding when in reality they merely lack access to pertinent information. It is established in the refusal of treatment cases that the decisions of people with capacity must be respected by health personnel even if the decisions appear to be irrational (Re C). If capacity is in doubt, however, the ‘irrationality’ of a decision may be used as evidence that the person lacks capacity. People with mental health conditions argue that the ‘double standard’ reflects the entrenched discrimination that is experienced by people with disability and mental health conditions. In tandem with the development of informed consent and capacity principles in the common law, many jurisdictions have adopted legislation that permits substitute decision making arrangements for people who lack capacity. Modern guardianship and substitute decision making arrangements typically require that such decisions are made in accordance with the prior capable wishes of the person if they are known. When the person’s wishes are unknown, the law usually requires substituted decisions are to be made on the basis of the person’s ‘best interests’ (Donnelly 2009). These arrangements aim to replicate, as far as possible, the informed consent standard in situations where a person may lack capacity. Mental health advance directives may also play this role. The recognition that capacity may be partial or fluctuating has also prompted the development of alternative decision making arrangements. These arrangements, which have become known as ‘supported decision making’, aim to support and maintain the decision making abilities of people who may have impaired or partial decision making abilities. Supported decision making has created a new scholarship that is concerned with the principles and practice of preserving autonomy through support (Bach and Kerzner 2010). The scholarship resonates with the principles expressed in Article 12(3) of CRPD which requires that: States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity [emphasis added].

8 The right to choose

The use of mental health advance directives in the context of supported decision making is yet to be explored in detail. In principle, there is nothing inconsistent in the notion that a person with partial or impaired decision making abilities, or is provided with support, may complete a valid mental health advance directive. In this role mental health advance directive may augment rather than replace the decisions of the person.

Rights-based mental health laws The debate about mental health advance directives is often situated in debates about the content of mental health laws. As the above summary illustrates, choice, autonomy, informed consent and capacity shape modern health law. In mental health, however, different traditions are at play (Dejener 2003). Since the nineteenth century, the provision of mental health treatment has sometimes been authorized by compulsory mental health law. In the twentieth century, voluntary mental health treatment is governed by the same principles as general health treatment, while compulsory treatment continues to be governed by mental health law. As the two legal systems typically overlap, the interface between them is often unclear. In the 1950s, rights-inspired mental health laws encouraged informal approaches to the admission of people to inpatient facilities for the purpose of providing mental health treatment. It was hoped that informal admission arrangements would improve access to psychiatric treatment and reduce the stigma associated with formal civil commitment (Jones 1972: 307). In practice they sometimes encouraged treatment approaches that are now regarded as unacceptable. In the 1970s and 1980s, most developed jurisdictions adopted ‘rights-based’ mental health laws. Rights-based mental health laws are laws that are characterized by strict civil commitment criteria and oversight and review mechanisms. Rights-based mental health laws typically adopt strict civil commitment criteria, formal admission requirements, and establish judicial oversight and/or tribunal review processes for psychiatric admissions and involuntary treatment (Weller 2010). While there are many variations in detail across the jurisdictions, rights-based mental health laws generally permit psychiatrists to impose compulsory mental health treatment on the basis of the danger the person poses to themselves or others, and on the basis of the ‘need for treatment’. As Mary Donnelly points out, however, compulsory mental health laws are ‘an anomaly within legal systems which privilege and protect the individual’s right of autonomy’ (Donnelly 2008: 37). Rights-based mental health laws do not require informed consent and may exclude or avoid consideration of the person’s choice with respect to treatment, because they authorize intervention on ‘risk and danger grounds’ (Weller 2010). In part, the approach appears to be based on the assumption that people who meet the strict criteria will generally lack capacity (Weller 2010). However, the MacArthur Competence Study in the United States found that 80 to 95 per

The right to choose 9

cent of people in the study who were compulsorily admitted to psychiatric institutions retained the ability to make treatment decisions (Grisso and Appelbaum 1995; Grisso et al. 1995). The MacArthur study highlights the contradiction between the developed autonomy principles in general health laws, and the risk and danger grounds in mental health (Winick 1996). The likelihood that people who are able to make treatment decision are subject to compulsory treatment powers is increased whenever the grounds for risk and danger are expanded. For example, during the 1990s many legislatures expanded the grounds for civil commitment to include the risk of ‘deterioration’ of a person’s health and mental health as a ground for commitment (Appelbaum 1997). Provisions of this kind are likely to increase the subjective nature of the civil commitment decision (Campbell 1994), amplifying disputes about the validity of mental health laws. Formal recognition of mental health advance directives and practices that encourage the participation of the person in treatment decisions also began to be included in mental health laws in the 1990s. In the United States, for example, the federal Patient Self Determination Act (1990) required the introduction of advance directives in all areas of health care. Strategies that encourage clinicians to defer to the person’s choice aim to resolve the contradiction between autonomy principles and the operation of risk-based mental health laws. People with mental health conditions argue that lack of respect for personal choice extends beyond the compulsory context, because voluntary treatment decisions are made in the ‘shadow’ of risk- and danger-based civil commitment laws (Bernstein 2007: 43). People with mental health conditions point out that in the coercive environment produced by mental health laws, their attempts to discuss options for care and treatment, to obtain information about alternative treatments, or decline elements of a proposed treatment plan are not accepted as a legitimate part of the clinical interaction. Patients report that their efforts to establish a dialogue about their clinical care tends to be interpreted as ‘noncompliance’, rather than as an invitation to establish an exchange that is envisaged by a developed concept of informed consent (Russo and Wallcraft 2011). Similarly, patients who seek treatment report that their request may be refused on the basis of an assumption that the request is unfounded.This creates the paradox that on one hand, care is not provided when people indicate that they need care, and on the other, care is only provided on a compulsory basis. These contradictions have encouraged people with mental health conditions and their clinicians to explore the use of mental health advance directives to govern the treatment ‘gap’ (Halpern and Szmukler 1997).

Mental health advance directives In the context of capacity and consent principles, mental health advance directives are typically understood as a form of substitute decision making in the sense that the prior capable decision provides a ‘substitute’ when a valid

10 The right to choose

contemporaneous decision cannot be made. They provide a mechanism to communicate the prior capable wishes of the person at a time in the future when they may lack capacity. Furthermore, they are increasingly being recognized by consumers and clinicians as a tool that addresses the contradiction between the compulsory powers and the principle of autonomy, by facilitating choice in clinical settings.They are being seen as a vehicle that enables clinicians to respect the human rights of their patients while providing optimal care (Ritchie et al. 1998; Widdershoven and Berghmans 2001). Clinically based research has shown that mental health advance directives enhance collaborative therapeutic relationships, improve the quality of service delivery, reduce the use of coercion, and increase compliance with treatment (Pilgrim and Waldron 1998; Widdershoven and Berghmans 2001; Peck et al. 2002; O’Connell and Stein 2005; Khazaal et al. 2008; Monahan 2008). It is also argued that mental health advance directives reduce the prejudice and discrimination associated with mental illness by increasing clinicians’ appreciation of the decision making abilities of people with mental health conditions (Swanson et al. 2000). They provide a vehicle to ensure that all medical interventions are tailored to the unique circumstances of the person, and that compulsory interventions comply with the least restrictive option (Atkinson and Garner 2002). Mental health advance directives in these accounts are envisaged as tools that will assist in the realization of positive rights in mental health care, rather than enforce ‘refusal of treatment’. Mental health advance directives were first mooted by Thomas Szasz in 1982 (Maclean 2008). Drawing on the debate about end-of-life care in general health, Szasz argued that the principles of due process underpinning the advance directive movement in general health were equally applicable to the mental health arena (Szasz 1982). In the early 1980s, the debate about health and mental health advance directives was dominated by a perception that these instruments would be used solely as a lawful method of refusing unwanted medical treatment. Since then, arguments in support of mental health advance directives have increasingly emphasized the importance of enabling people to make decisions about their mental health care, including the ability to consent to future treatment (Bonnie 2012). In concert with an emerging appreciation of human rights principles in general health, the advance directive debate has sought to validate choice, autonomy, and access to treatment and services as the rationales that underpin their use. Although mental health advance directives may still include refusals of treatment, their limited role has been expanded in the contemporary debate. Conceptually, mental health advance directives are now invoked in support of ‘recovery’-focused mental health care (Scheyett et al. 2007), and in terms of the right to health. At the practice level, however, mental health advance directives remain undeveloped.The wave of law reform that began in the United States, extended to parts of Canada in the 1990s, to Scotland in 2003, and England and Wales in 2005, has slowed. Moreover, it has been observed in several jurisdictions that,

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despite strong interest in them, the uptake of mental health advance directives is less than expected (Reilly and Atkinson 2010).

The right to health The formal recognition of mental health advance directives coincided with rise of the health and human rights movement in the United States, and with the parallel articulation of the ‘right to the highest standard of health and mental health’ by the international human rights community (Gruskin et al. 2005). In the United States the health and human rights movement was established in 1993 at the Francois-Xavier Bagnoud Centre for Health and Human Rights at the Harvard School of Public Health in Boston under the leadership of the late Jonathan Mann (Mann et al. 1994). The health and human rights movement linked the critical scholarship relating to health, illness and medicine in the 1960s and 1970s with the public health and human rights scholarship of the 1980s. Jonathan Mann and others summarized the interrelationships between health and human rights as: • • •

the impact of health policies, programs and practices on human rights the impact that public health programs may have on person rights, and the health impact of human rights violations (Mann et al. 1994).

These three themes illustrate an underlying concern with the equitable distribution of health resources, the use of health information, and the direct health benefits that flowed from the protection of human rights. They provide a framework for the integration of international human rights perspectives in domestic law. The international community has developed the ‘right to health’ in international human rights law as a platform for the articulation of an integrated interpretation of the civil and political rights on the one hand, and economic, social and cultural rights on the other (Weller 2008). The development of an integrated approach to the articulation of all human rights responds to the injunction to recognize all human rights as universal,‘indivisible, interdependent and interrelated’ as is discussed in more detail in the next chapter (Vienna Declaration 1993: Article 5). Practical application of the right to health is guided by the obligation to ‘respect, protect and fulfil’ the human right to health (CESCR 2000 at [33]). As is discussed in detail in the next chapter, the basis of the right to health lies in Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the ‘right to life’ protected by Article 6 of the International Convenant on Civil and Political Rights (ICCPR). Article 12(1) of ICESCR enshrines ‘the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’. General Comment 14 (2000) on the ‘Right to the Highest Attainable Standard of Health’ which is adopted by

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the UN Committee for Economic, Social and Cultural Rights provides an authoritative interpretation of the right. The right to health is referred to in Article 5 of International Convention on the Elimination of all Forms of Racial Discrimination (ICERD), and Article 24 of the Convention on the Elimination of Discrimination Against Women (CEDAW). The scope of the right to health is foreshadowed by Professor Hunt’s analysis of gender equity, violence against women and the incidence of maternal and infant mortality (Hunt 1996). The content of his reports as the first United Nations Special Rapporteur for Health are similarly instructive. In providing an outline of the implications of the right to health in the mental health context the Special Rapporteur has also noted the prevalence of mental health problems, the global neglect of mental health, the particular vulnerability of women, ethnic minorities, and indigenous people who experience mental health problems, and the need for community-based services of good quality (Hunt 2005). The World Health Organization (WHO) initiated a campaign for global mental health that is informed by a new epidemiology on health disparities and accompanied by an appreciation of the interconnections between physical and mental health as entwined contributors to human wellbeing (Courtwright 2009). In terms of a global health and development movement, the right to health has informed the right to development, the Millennium Development Goals, the public health and justice movement, the global movement for mental health, and the general articulation of formal human rights standards in health. Although it is sometimes argued that the right to health lacks a theoretical foundation, its objectives are steeped in the health and public health discourse (Tobin 2012). Read in the context of a wider health and development movement, the CRPD provides a new chapter in the development of the right to health. It provides an integrated account of the human right to health as it applies to people with disabilities. With respect to the question of choice, the CRPD emphasizes the importance of personal autonomy, independence, and the freedom to make one’s own choices. In the CRPD framework, autonomy and independence of the person are reinforced by Article 12 on the right to equal recognition before the law (Weller 2008). As is described in the next part of the book, ‘the social model of disability’ and the principles of equality and nondiscrimination in the CRPD invite a reappraisal of practices that have the effect of excluding people with mental health conditions from the exercise of choice in the provision of health and mental health care (O’Cinneide 2009). Right to health and human rights perspectives invite a reappraisal of mental health advance directives in light of the human rights analyses found in the CRPD.

Structure of the book This book considers mental health advance directives in light of the right to health and the obligations imposed by the CRPD. This first part of the book

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provides a detailed analysis of the CRPD. The chapters in this part argue that the transformative potential of the CRPD rests on three critical conceptual shifts in the human rights frameworks.These are the conceptualizing of human rights as interrelated, interdependent and indissociable, the adoption of a social model of disability, and the recognition of people with mental health conditions as equal subjects before the law. Together these three elements affirm the place of the person with a disability at the fulcrum of the human rights analysis. The second part of the book provides an analysis of the status of mental health advance directives in Commonwealth jurisdictions. The first chapter in this part establishes the historical context by providing an account of the genesis of the mental health advice directive movement in the United States. The remaining chapters provide five ‘case studies’ of mental health advance directives and law reform in different jurisdiction. These chapters discuss the law in Ontario (Canada), England and Wales, Scotland, New Zealand and Australia. The engagement with mental health advance directives in these jurisdictions highlights the contradiction between human rights principles and the ‘problem’ of choice in mental health law, and the struggle to graft contemporary human right principles onto the domestic legal framework. The final part of the book examines the application of rights-based jurisprudence in the domestic context concluding with a principle-based analysis of mental health advance directives and their potential role in an integrated response to recovery practices in mental health care. Overall, the book argues that psychiatric advance directives provide a practical vehicle for the realization of choice, entitlement and positive rights in mental health. Considered in light of the CRPD, mental health advance directives present themselves as a method for articulating and realizing individual health needs within complex health systems. At a more abstract level, this study of mental health advance directives enables an examination of the relationship between human rights and mental health law. In addition to debates about rights, the development of mental health laws has been shaped by political contingences, service issues, and population characteristics.The promulgation of the CRPD calls for a closer engagement with disability rights as they are expressed in international human rights law. It also calls for an exploration of how disability rights may be given substance. The following account of mental health advance directives contributes to human rights scholarship that is concerned with the effective implementation of human rights principles in domestic law.

Part 1

The Convention on the Rights of Persons with Disabilities

Chapter 2

A quiet revolution

The development of international human rights law in the second half of the twentieth century has prompted a major change in the legal and ethical landscape of developed nations (Kaarbo and Ray 2010). The influence of human rights discourse is reflected in the recognition that people are entitled to maintain a high degree of control over their lives, and that the organization of social and political realm should enable the realization of self-determined goals (Sen 2009). Respect for diversity and recognition of the social value of pluralism is the political corollary of the principle of individual entitlement. As is noted above, in bioethics and medical law the principle of self-determination is reflected in the recognition that people are entitled to make decisions about their own health care, and may seek out health care, or decline health care that is offered to them (Manson and O’Neill 2007). In this sense, people are entitled to choose. Public debates about choice, human rights and selfdetermination, coupled with a deepening appreciation of the principles of non-discrimination and equality have encouraged groups of people who were previously thought to be unable to benefit from the privilege of choice and self-determination to assert their human rights claims. The long-standing exclusion of people with disabilities from participation in social life is addressed by the CRPD. The CRPD provides a framework for the realization of human rights for people with disabilities, including people with mental health conditions. Consistent with the overarching human rights principal of equality and nondiscrimination, it aims to remedy the absence of disability perspectives in politics, in law, in health, and in the human rights framework itself (Quinn and Degener 2002). It aims to ensure respect for the human rights of people with disabilities in all aspects of social life. A principal mechanism to achieve this goal is the inclusion of people with disabilities in the decisions that affect them. Participation ‘in every aspect of social and political life’ is a critical objective of the CRPD (Lawson 2009: 88). Inclusion in social life addresses the social disadvantage that arises from exclusion, isolation and marginalization (Minkowitz 2007). It redresses discrimination and provides the necessary conditions for its dissolution.

18 The CRPD

In taking this approach, the CRPD crystallizes half a century of conceptual development in international human rights law appreciating that the production and reproduction of human rights abuse occurs at the heart of the social enterprise. This chapter considers the CRPD in the context of the development of the human rights and disability movement. It discusses the engagement of the international community with disability perspectives, the conceptual integration of all human rights, the consequent elaboration of the right to health and its significance for the rights of people with mental health conditions.

Disability and human rights law The CRPD was adopted by the United Nations in 2006, coming into force internationally on 3 May 2008. It represents the culmination of two and half decades of development in international law in which the international community sought to create effective responses to the human rights abuses experienced by people with disabilities (MacKay 2007). Support for a convention dedicated to disability stemmed from the recognition that people with disability remained on the periphery. They were invisible to human rights strategies and regularly experienced discrimination and abuse. Marginalization compounded the effects of poverty and exclusion (Stein and Lord 2009). The first international documents concerned with disability were drafted in the 1970s. Both the Declaration on the Rights of Mentally Retarded Persons (1971) and the Declaration on the Rights of Disabled Persons (1975) were non-binding documents focusing on physical and mental disability. In 1981 the United Nations established the International Year of Disabled Persons, followed by the World Program of Action and Decade of Rights of People with Disability from 1983 to 1992. During the World Program of Action and Decade of Rights of People with Disability evidence was gathered showing that people with disabilities, including people with mental health conditions, were invisible in the human rights framework, and excluded from the conceptualization of human rights strategies.The evidence showed that in addition to discrimination, marginalization and poverty, people with disabilities frequently experienced incarceration, violence, abuse and exclusion, in both developed and developing nations (Daes 1982; Despouy 1991; Daes 1993). Independent organizations such as Mental Disability Rights International and Human Rights Watch also provided evidence of the widespread human rights abuse experienced by people with disabilities (Rosenthal and Sundram 2003). The United Nations adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) (Standard Rules) as the primary outcome of the World Program of Action and Decade of Rights of People with Disability.The Standard Rules recognize that people with disability are entitled to human dignity and personal self-determination in all matters. They affirm the right of people with disability to have access to, and benefit

A quiet revolution 19

from, preventive medical and social services that enable their independence, supporting social participation and integration in the community.The Standard Rules require the provision of programmes that address impairment. They require the non-discriminatory provision of health care and the appropriate training of medical and paramedical personnel (Standard Rules 1993). A similar approach is adopted in General Comment 5 on ‘People with Disability’ which is the authoritative comment on the meaning of the ICESCR adopted by the Committee for Economic, Social and Cultural Rights. General Comment 5 recognizes that people with disability are entitled to the full benefit of the international human rights framework on an equal basis with others. It interprets the obligations imposed by the ICESCR as requiring state parties to set goals for service provision that enable persons with disabilities to reach and sustain an optimum level of independence and functioning. It requires services to be provided in a way that those concerned are able to maintain full respect for their rights and dignity. Despite the increased focus on the human rights of people with disabilities evident in this work, the ongoing monitoring of human rights by the United Nations indicated that people with disabilities remained marginalized and excluded (Lindqvist 2000; Quinn and Degener 2002). These observations secured the commitment to create a new convention. Creating a new convention provided the opportunity to articulate the conceptual development in the international human rights field in a binding legal form. Since the 1960s, human rights debates were framed by the theoretical and practical distinction between civil and political rights, on the one hand, and economic, social and cultural rights on the other. The need to address the complex human rights question raised by disability resonated with a wider concern in the human rights community to adopt a ‘preventive’ approach to human rights abuse and engage with its underlying cause. One aspect of this concern was the campaign to produce an integrated vision of human rights. In the CRPD the integrated approach is encapsulated in the adoption of the social model of disability. The social model of disability and its implications for mental health law are discussed in detail in the next chapter.The related question of discrimination is discussed in Chapter 4. The remainder of this chapter introduces those discussions with the argument that the ‘right to health’ is a product of the re-conceptualization of human rights, as ‘universal, indivisible and interdependent and interrelated’ (Vienna Declaration 1993).

The reintegration of human rights The CRPD is the first international treaty to be drafted following the adoption of the Vienna Declaration and Program of Action at the Vienna World Conference on Human Rights. The Vienna Declaration was also adopted by the United Nations in 1993. Article 5 of the Vienna Declaration states that:

20 The CRPD

All human rights are universal, indivisible and interdependent and interrelated. The international community must treat human rights globally in a fair and equal manner, on the same footing, and with the same emphasis. While the significance of national and regional particularities and various historical, cultural and religious backgrounds must be borne in mind, it is the duty of States, regardless of their political, economic and cultural systems, to promote and protect all human rights and fundamental freedoms. The injunction to consider ‘all human rights as universal, indivisible and interdependent’ addresses the conceptual and practical division that developed between the civil and political rights on the one hand and economic, social and cultural rights on the other during the drafting of the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). The distinction between civil and political rights on one hand, and economic, social and cultural rights on the other, was devised during the deliberations at the United Nations that sought to translate the rights expressed in the Universal Declaration of Human Rights (UDHR) into binding international law. The split between the rights offered a solution to a pointed debate about the relative importance of the different rights, and about the monitoring mechanisms that could be created in binding international law. The impasse in the debate was solved by distributing the different rights between two documents, underpinned by different enforcement obligations (Whelan 2010). These debates reflected ideological tensions between those nations who understood a commitment to civil and political rights as ‘emblematic of democratic freedoms’, and those nations who argued for the primacy of economic, social and cultural infrastructure (Sohn 1982–83: 38). In these deliberations,‘civil and political rights’ were characterized as concrete, objective democratic rights that protect individuals from unwarranted state interference. Civil and political rights were thought of as precise, independent, immediately realizable, and amenable to legislative implementation. They could be expressed in legislation and adjudicated in a court of law. Furthermore, it was assumed that the protection of these rights would not impose undue economic burden on the state (Whelan 2010: 117). Economic, social and cultural rights, on the other hand, were characterized as non-traditional or ‘positive rights’. They were regarded as dependent, secondary rights that were not amenable to adjudication because they were vague, discretionary and policy based.The rights tended to vest in groups of people rather than individuals, and were dependent on the availability and allocation of state resources. Ultimately, the realization of these rights was a matter for policy, not law. This accorded with the view that ‘positive’ rights were fluid, malleable, indeterminate rights whose content may alter according to the prevailing social and cultural mores (Dhanda 2007: 155). Furthermore, these were ‘dangerous’ rights because the adjudication of them could force the courts to stray beyond the proper scope of their powers.

A quiet revolution 21

The split between the two sets of rights reflected the dominance of ‘positivism’ in law and legal theory in the mid twentieth-century. Positivism refers to an approach that insists that legal reasoning is entirely factual. It is associated with a philosophical belief in positive facts and the proposition that observable phenomenon can be scientifically verified or falsified. With respect to law, positivism also refers to the view that laws derive their validity from a recognized authority, or an established system. It is therefore associated with a strict notion of the rule of law as an expression of legitimate sovereign or national power, and with a rejection of claims that draw their authority from morality or natural law (Dworkin 1986). Positivist perspectives assumed that if any human rights could be framed in international law, only civil and political rights could be precisely defined in terms of obligation, duty and remedy and therefore successfully incorporated into law. In accordance with these assumptions, Article 2 of the ICCPR was drafted in a way that imposed immediate obligations on state parties. Article 2(1) of the ICESCR required state parties merely to ‘undertake to take steps’ with a view to ‘achieving progressively’ the full realization of ESCR rights in accordance with the availability of state resources. The different enforcement obligations create an ‘enforcement gap’ between the two sets of rights. The immediately realizable obligations focused the action of states on civil and political rights, encouraging the neglect of economic, social and cultural rights. The exclusion of economic, social and cultural rights from the human rights platform has been the subject of extensive critical comment (Merali and Oosterveld 2001). Feminist scholars have drawn particular attention to entrenched gender bias in international law (Otto 2001). Hilary Charlesworth and Christine Chinkin have argued that that the split between two sets of rights replicates the public/private divide in law that relegates the realm of the family, and hence the lives of women and children, to the private realm (Charlesworth and Chinkin 2000). Margaret Thornton also queries the assumption that public, political rights, which are traditionally exercised by men, should be regarded as naturally defendable in the courts, while the rights associated with the private realm, the home and the family, are not (Thornton 1995). In the context of developing nations, Hilary Charlesworth (2005) warns that the consequences of ignoring the human rights of women, who have primary responsibility for domestic food production, social and health care, and the education of children, may have dire effects on economic and social production. Charlesworth observes that despite being the backbone of subsistence economies international law allows women’s concerns to fall beyond the reach of human rights protection (Charlesworth 2005). A similar understanding of the interrelationship between rights and economic stability, and the essential connection between all human rights, is found in the work of Amartya Sen (Sen 1999). Sen’s study of famines, for example, shows that nations in which human rights were respected responded more effectively to such crises (Sen 1981). Martha Nussbaum’s ‘capability’ approach also

22 The CRPD

contextualizes human rights principles in the realities of day-to-day existence (Sen and Nussbaum 1993). Describing human rights in this way allows the connections between levels of literacy, education, and health, and the exercise of traditional civil and political rights to be revealed (Sen 1999). The critique of the artificial division between the rights encouraged the articulation of new rights such as ‘the right development’ and ‘the right to health’.These rights draw their legitimacy from both the foundation covenants. Based in an integrated analysis of the two sets of rights they contribute to the further development of integrated human rights approaches and the gradual dissolution of the distinction between the rights. The international community actively supports the development of integrated analyses of all human rights. This is expressed in the injunction contained in the Vienna Declaration to view all rights as ‘universal, indivisible and interdependent and interrelated’ (Vienna Declaration 1993). The injunction to consider all rights as ‘universal, indivisible and interdependent and interrelated’ provides a framework with which to interpret the CRPD.

The right to health The content of the right to health also guides the interpretation of the CRPD because of the interconnections between disability and health. The articulation of the ‘right to the highest attainable standard of health and mental health’ (the right to health) provides an example of a human right that builds an integrated analysis of ICCPR and the ICESCR rights. The right to health is principally based on Article 12 of the ICESCR, but is supported by the right to life in Article 6 of the ICCPR. The protection of health is fundamentally about the protection of life. Article 12(1) requires state parties to ‘recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’. Article 12(2) lists four requirements or steps that must be taken to work toward the full realization of the right. These are: (a) the provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child; (b) the improvement of all aspects of environmental and industrial hygiene; (c) the prevention, treatment and control of epidemic, endemic, occupational and other diseases; and (d) the creation of conditions which would assure to all medical service and medical attention in the event of sickness (Article 2, a–d.). The four steps represent the four major divisions of knowledge in modern public health. The right to health is referred to in Article 5 of International Convention on the Elimination of all Forms of Racial Discrimination (1965) (ICERD), in Article 12 of

A quiet revolution 23

the Convention on the Elimination of Discrimination Against Women (1979) (CEDAW) and Article 24 of Convention on the Rights of the Child (1989) (CRC). Article 25 (Health) in the CRPD is a detailed Article that specifically relates to the provision of health services. Article 25 (Health) recognizes ‘the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability’. It requires state parties to ensure that people with disabilities have access to ‘the same range, quality and standard of free or affordable health care and programmes as provided to other persons’ (Article 25(a)). State parties must also ‘provide those health services needed by persons with disabilities specifically because of their disabilities’ (Article 25(b)). The services that are provided must be available to all members of the disability community, including people with mental health conditions on an equitable, non-discriminatory, gender-sensitive basis. They must address both the general and mental health needs, and include sexual and reproductive health service, and population-based public health programmes. Services must be provided ‘as close as possible to people’s own communities’ (at Article 25(c)). The non-discriminatory obligation extends to the provision of health and life insurance (at Article 25(e)), and to palliative care (at Article 12(f)). With respect to the question of choice Article 25 requires that the manner in which service are provided accords with human rights principles, including on the basis of free and informed consent. Paragraph (d) obliges state parties to Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care [emphasis added]. In 2000, the Committee for Economic, Social and Cultural Rights, which provides authoritative guidance on the meaning of the ICESCR, adopted the General Comment 14 on the ‘Right to the Highest Attainable Standard of Health’ with respect to the meaning of Article 12. General Comment 14 (CESCR 2000) identifies the right to health as an inclusive right which imposes both negative and positive obligations, with ‘core obligations’ from which no derogation is permitted. General Comment 14 identifies the core obligations, as the obligation •

•

to ensure access to health facilities, goods and services on a nondiscriminatory basis, especially for vulnerable or marginalized groups (to ensure access to the minimum essential food which is nutritionally adequate and safe: to ensure freedom from hunger to everyone; to ensure access to basic shelter, housing and sanitation, and to an adequate supply of safe and potable water; and

24 The CRPD

•

to ensure access to essential drugs, the equitable distribution of all health facilities, goods and services. This includes the obligation to adopt and implement a national public health strategy and plan of action that gives particular attention to all vulnerable or marginalized groups is also required (CESCR 2000: at [43]).

With respect to the provision of all health services, General Comment 14 adopts the concepts of ‘availability, accessibility, acceptability and quality’ and the need to support people in to make ‘informed choices’ as guiding principles (CESCR 2000 at [12]). Furthermore, the General Comment requires actions that ‘create, maintain and restore’ the health of the population (CESCR 2000 at [37(3)(iv)]). This has been interpreted by the former Special Rapporteur for Health as including the obligation to create maintain and restore health in response to crises such as war, conflict, the displacement of persons, natural disasters and violence against women (Hunt 2005). Furthermore, it recognizes that the right to health extends beyond health care to determinants of health, encompassing the right to be freed from violence, torture, slavery, discrimination, harmful customary practices, and extends to the maintenance of healthy workplaces and natural environments. General Comment 14 and the additional comments by the former Special Rapporteur indicate that the scope of the right to health extends well beyond the provision of health-care services.

The social determinants of health The expansive interpretation of the right to health corresponds with the concern of the international community to address the social determinants of health (Chapman 2009). A Commission for the Social Determinant of Health (CSDH) was established by the World Health Organization to inquire into the social determinants of health in 2005.The CSDH defines the social determinants of health: The Commission takes a holistic view of social determinants of health.The poor health of the poor, the social gradient in health within countries, and the marked health inequities between countries are caused by the unequal distribution of power, income, goods, and services, globally and nationally, the consequent unfairness in the immediate, visible circumstances of people’s lives – their access to health care, schools, and education, their conditions of work and leisure, their homes, communities, towns, or cities – and their chances of leading a flourishing life. This unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon but is the result of a toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics.Together, the structural determinants and conditions of daily life constitute the

A quiet revolution 25

social determinants of health and are responsible for a major part of health inequities between and within countries. CSDH 2008: 1 The social determinants of health emphasize the importance given to social inclusion. Being included in the society in which one lives is vital to the material, psychosocial, and political empowerment that underpins social well-being and equitable health. CSDH 2008: 18 The CSDH also recognizes that self-determined choice makes a critical contribution to the process of change that is envisaged, noting that the perspectives of affected people make a contribution at both the ‘macro’ and ‘micro’ levels of health. Any serious effort to reduce health inequities will involve changing the distribution of power within society and global regions, empowering individuals and groups to represent strongly and effectively their needs and interests and, in so doing, to challenge and change the unfair and steeply graded distribution of social resources (the conditions for health) to which all, as citizens, have claims and rights. CSDH 2008: 18 The CSDH calls for comprehensive action at all levels of government to close the inequity gap. As Patricia Illingworth and Wendy Parmet argue, the ethical implications of the social determinants of health have ramifications in law and bioethics (Illingworth and Parmet 2009). In May 2012, the World Health Assembly adopted the Rio Political Declaration on Social Determinants of Health (2011). That document defines the social determinants of health: Social determinants of health are the conditions, in which people are born, grow, live and work that affect their health. These conditions are shaped by political, social and economic factors, such as income, literacy and education levels, housing and living conditions, employment and employment security, social exclusion, access to health care, and food safety, and diet. Rio Political Declaration 2011 at [6] The Rio Political Declaration outlines priority areas for action with the objective of generating political momentum for action on the recommendations of the CSDH. For much of the twentieth century, it was assumed that the right to health belonged to the category of rights that were too vague and indeterminate to

26 The CRPD

constitute enforceable human rights (Alston and Quinn 1987). Encouraged by a deeper appreciation of the connections between rights expressed in the ICCPR and the ICESCR, the right to health is now recognized as a legitimate right, although the debate about monitoring and adjudication is unresolved. Nevertheless, the broad recognition of the right has contributed to an emerging consensus that the core content of the right to health imposes immediate obligations upon state parties (Toebes 1999; Fox and Meier 2009; Prah Ruger 2009). The different enforcement provisions in the ICCPR and ICESCR continue to create uncertainty about the justiciability of economic, social and cultural rights. In western developed nations, courts have remained reluctant to intrude into areas of law and policy that are regarded as the responsibility of the executive government (Dhanda 2005). This is particularly so in the absence of a relevant constitutional power. As is illustrated in the ‘case studies’ part of this book, the adoption of human rights legislation in common law jurisdictions is shifting the contours of the enforceability debate (Koch 2009).

The right to health in the CRPD From the point of view of an integrated account of human rights, the CRPD addresses the conceptual gap between ICCPR and ESCR by its articulation in its text of both the positive and negative dimension of the rights. It addresses the enforcement gap through its adoption of the social model of disability and the principle of non-discrimination. Like the CSDH, the CRPD is concerned with equality, social inclusion and the interrelationship between disability, health and social marginalization. For the point of view of health, the CRPD reads as a template for the realization of the right to health. Considered in light of the social determinants of health, each of the substantive rights in the CRPD contributes to an aspect of their health and wellbeing (Weller 2008). It refers to the conditions that create and maintain health, and the infrastructure necessary to realize and support health. Furthermore, it recognizes that the corollary of respect for diversity is the recognition of the right to create one’s own interpretation of optimal health and wellbeing. These arguments are supported by the analysis of the social model of disability contained in the next chapter.

Chapter 3

The social model of disability

The ‘social model of disability’ in the CRPD provides the mechanism that articulates the expansive interpretation of the right to health in the context of disability. The social model of disability refers to a theory of disability that developed in the critical disability studies movement. Its principle feature is the adoption of a social perspective. In focusing on the social context in which disability occurs, the social model of disability draws attention to limitations of the social environment. This reveals the deficits and limitations of a person’s immediate and wider environment, pointing to the need to change the person’s circumstances or alter the social structures and processes that ‘create’ disability. The reversal in focus that is required by the social model of disability is the ‘paradigm shift’ that is attributed to the CRPD (Stein 2010).The paradigm shift enables traditional welfare responses to be replaced by a focus on social and structural change. The second element of the social model of disability is its emphasis on the perspective of the person. An appreciation of the unique perspectives offered by people with impairment and the ‘lived experience’ of disability are fundamental to the social model of disability, because it completes the reverse focus, giving a privileged position to voices and perspectives that have been silenced. In the CRPD, this is reflected in the emphasis on the principles of choice and participation. This chapter discusses the conceptual foundations of the social model of disability. It argues that the social model of health and the principle of participation in the CRPD offer a ‘rich’ version of disability rights.

The social construction of disability The social model of disability reflects the notion that disability is ‘socially constructed’. The social construction of disability is a fundamental concept in critical disability theory (Devlin and Pothier 2006). Critical disability theory derives the social construction of disability from the rich traditions in the social theory that are associated with social constructionism, feminist critical theory and the critical legal studies movement (Rioux et al. 2011). These perspectives recognize that knowledge about the social world is produced or created by

28 The CRPD

the interaction of knowledge and power (Berger and Luckmann 1968). They reject the proposition that ‘knowledge’ and ‘reality’ are objective, verifiable phenomenon. Instead they accept that all knowledge, including the knowledge that is produced by ‘objective’ scientific methods, is contextual and value laden (Latour 1993). Social constructionist perspectives reject the possibility of a clear distinction between objective and subjective positions. ‘Reality’ is seen as an indeterminate phenomenon that is contingent upon social relations, human practices, and the production of ‘knowledge’ and ‘truth’ in different cultural and temporal contexts (Armstrong 1994). Destabilizing the validity of objective knowledge provides a theoretical framework that gives greater credence to the perspectives and views of people, or ideas, that may be marginalized by ‘objective’ knowledge. For example, it validates the perspectives of people with lived experience of disability or mental illness. Accounts of a person’s ‘lived experience’ may therefore be incorporated in versions of the ‘truth’ rather than rejected on the basis that they are ‘tainted’ by subjectivity or delusion. This enables a richer understanding of the interactions between the unique circumstances of the person, and the social context in which they live. Personal accounts ‘on the ground’ provide a unique view of the complex interplay of social, cultural, legal, institutional, and interpersonal relationships. Social constructionist approaches recognize lived experience as one reflection of the ‘productive’ effect of power and power relations (Rose 1990). Critical disability perspectives adopt social construction theory in order to provide a critique of the dependence and disempowerment associated with disability. That critique recognizes that relationships of power produce and reproduce social relations, self-identity, empowerment and disempowerment. Relationships of power influence social arrangements and interactions with society. They also influence the representation of people with disability in literature, the media and in popular culture. Adopting a social constructionist approach enables critical disability perspectives to recognize and address the negative constructions of disabled people as dependent, incapable and helpless (Rioux et al. 2011).This approach allows critical disability perspectives to identify and challenge representations of disabled people as dangerous and unpredictable ‘others’ who are in need of containment. In this way, critical disability perspectives converge with human rights perspectives in their mutual recognition of prejudice and discrimination as key constructs in the disability field. Internationally, the general characteristics of the ‘social model of disability’ are given a different emphasis in the diverse cultural, socio-political and legal contexts in which the ‘disability debate’ is engaged. For example, Rannveig Traustadottir notes that in Britain, the social model of disability is associated with a distinction between the biological fact of impairment and the ‘socially construction of disability’, which provides a clear political focus and call for action that places the environment, not the person, as the object of intervention (Traustadottir 2009: 9–10). In relation to Nordic countries, he describes a strong cultural emphasis on social inclusion which defines the social model as the

The social model of disability 29

relationship between person and the society in which they live, posing disability as a contextual and relative phenomenon that arises from a mismatch between the person’s capabilities and their environment. In the United States, similar analyses of the social context in which disability occurs emphasize factors of social oppression and disempowerment (Traustadottir 2009: 9–12). In Australia, Melinda Jones argues that the social model of disability rests on the principle of inclusion and its attendant requirements to address the multiple barriers that impede participation, and encourage celebration of difference and diversity (Jones 2011: 57–8). The common element amongst these approaches is the recognition that the social model of disability emphasizes the social context in which disability is defined and which defines the experience of disability.

The social model of health The social model of disability makes critical contribution to the disability debate by enabling critical disability perspectives to conceptualize and respond to paternalism and the dominance of the medical paradigm in disability (Rioux et al. 2011). Critical disability perspectives view disability as a field of knowledge that is colonized by medical knowledge and power. The contemporary significance of medical power is reflected in the wealth of literature that is concerned with embodiment, identity, health, medico-professional power, institutional power, bio-power and ‘governmentality’ (Rose 2007). This literature provides an important background of ideas that underpin the social model of disability in critical disability studies. The social model of disability in the CRPD is also closely connected with the social model of health (Quinn and Degener 2002). The ‘social model of health’ is a concept that was developed in the sociology of health and illness in the 1960s and 1970s. Initially it was devised in response to the critique of the ‘medical model of illness and disease’. The critique of the ‘medical model of illness and disease’ argues that the narrow biological focus of medical knowledge, coupled with medical paternalism, and medical professional dominance has profound social effects (Freidson 1970). The ‘medical model’ describes the method by which medicine creates its knowledge and exerts social power. According to this critique the critical feature of the medical model is its identification of pathology as a deviation from ‘normal’ physiological or emotional functioning. Because the model uses difference as its marker, socially constructed attributes may be misconstrued as biological facts. In this way, difference or disability may be construed as pathology and social phenomena treated as disease (Barbour 1995; Oliver 2004). The social model of health provides an alternative to the medical model of illness and disease by promoting a holistic appreciation of wellbeing that situates people in their wider social, psychological and environmental context. In the 1980s and 1990s the social model of health was hailed as a rationale that could provide a new approach to the organization of health systems (Annandale

30 The CRPD

1998). In contemporary medicine such approaches are more commonly associated with the proliferation of ‘alternative’ and ‘complementary’ medicine and the reification of consumer-driven choice, rather than with a fundamental reorientation of the health systems (Austin and Boyd 2010). Nevertheless, contemporary medicine promotes clinical approaches that place the ‘patient’ in their social context as ‘best practice’. What counts as ‘the social’, however, remains the subject of an extended debate. The recognition of the medical model in the 1970s included a critique of the defined social roles that are associated with medical expertise (Gerhardt 1987). Social role theory argues that doctors typically adopt authoritarian or paternalist attitudes commensurate with their social and professional status. Placed in the role of supplicants, patients typically adopt correspondingly compliant and subordinate roles (Katz 1984). Critiques of medical power draw a link between medicine and disempowerment, posing medicine and its organization as a barrier to the achievement of human rights. An appreciation of the relationship between authority, paternalism and disempowerment in the critique of the medical model informs the social model of disability in the CRPD. The sociological analysis of medicine and medical power points to the way in which modern medicine invades and occupies an increasing array of everyday problems (Conrad and Schneider 1980; Conrad 2007).‘Medicalization’ refers to the process that redefines areas of ‘normal’ human experience as a ‘medical problem’ that can be assisted by medical knowledge and expertise and should therefore be made the subject of medical authority and be managed in medical institutions. In the 1970s, medicalization perspectives contributed to the strength of the consumer movement in health and its resistance to medical solutions. Since then, the ubiquity of modern medicine has shifted the focus of sociological analysis (Fox 1990). As Peter Conrad argues, however, the prevalence of ‘medicalization in everyday life’ continues provide a basis for a sustained analysis of medical knowledge in the twentieth century (Conrad 2007; Szasz 2007a, 2007b).

The social model of disability in the CRPD Notwithstanding these theoretical influences, the interpretation of the social model of disability in the CRPD is correctly based on the text of the Convention considered in light of the developments in human rights theory discussed in the previous chapter.The social model of disability in the CRPD is expressed in the second paragraph of Article 1 (Purpose) as follows: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others [emphasis added].

The social model of disability 31

This paragraph indicates that ‘disability’ in the CRPD is not defined as a fixed, biological or physical attribute, but as a phenomenon or experience that is socially produced by the interaction of a person with and impairment with his or her environment. In this view, a person with impairment is ‘disabled’ by attitudinal and environmental barriers that hinder his or her full and effective participation in society on an equal basis with others. Disability is a product of social interaction which is defined by degrees of social exclusion experienced by a person with impairment. The adoption of the social model of disability in an international human rights convention raises the question of how that placement may alter or expand the content of the concept. The first observation to be made is that the social model of disability in the CRPD requires a human rights analysis of disability that considers the social context in which disability occurs. It should include consideration of all the matters that are of relevance to the person, such as access to services, accommodation, employment, and the effect of laws, policies, institutional rules and attitudes, and employment, housing and personal relationships. A second observation is that the social model of disability releases the focus of disability-related inquiries from a concentration on the deficits of the person. It enables a new concentration on the abilities and potential abilities of the person considered in light of the barriers that may surround them. This challenges the assumption that the person with impairment has a ‘deficit’ that should be changed in order to accommodate prevailing social, cultural or physical norms. Instead, the social model of disability suggests that prevailing norms, including laws, administrative rules, practice and attitudes, should alter to accommodate the attributes of the person. As is noted above, the recalibration of what is required by the social model of disability is made possible by the conceptual disconnection between disability and impairment expressed in Article 1. Disconnecting disability from impairment allows disability to be understood as a phenomenon that is separate from and external to the person. In turn, this allows the possibility that ‘disability’ as it is defined by the CRPD may disappear as the barriers to participation are dissolved.

Participation and choice The social model of disability in the CRPD places the concept of full and effective participation in society on an equal basis with others as the object of CRPD-based interventions, as indicators of their success, and as the vehicle through which respect for human rights will be realized. The privileged place given to the notion of social participation is reflected in the multiple references to participation in the CRPD. Participation, or an associated concept, is included in 18 Articles and in four paragraphs of the preamble, forming a coherent narrative throughout the text (Jones 2011).

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What is the scope of the right to participate? The right to participate is supported by the underlying principles of equality and non-discrimination which form the foundation rationale in first paragraph of Article 1 (Purpose): The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity [emphasis added]. Similarly, equality and non-discrimination underpin the eight General Principles expressed in Article 3. These are: (a) respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; (b) non-discrimination; (c) full and effective participation and inclusion in society; (d) respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (e) equality of opportunity; (f) accessibility; (g) equality between men and women; (h) respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. The application of each of these principles is given substance by the definition of the discrimination on the basis of disability in the principle of ‘reasonable accommodation’ in Article 2. These features are discussed in more detail in the next chapter. For the purposes of this discussion, it is sufficient to note that reasonable accommodation requires the provision of ‘necessary and appropriate’ adjustments to enable people with impairment to exercise ‘all human rights and fundamental freedoms without discrimination of any kind on the basis of disability’ as is required in Article 4 (General Obligations). The purpose of the ‘necessary and appropriate modifications and adjustments’ is to ensure that people with disabilities are able to participate in society on an equal basis with others. What is the quality or nature of the right to participation that is required by the CRPD? The CRPD envisages the inclusion of people with disabilities in all personal, legal, social and political forums, including in processes that monitor the CRPD (Charlton 2000).The emphasis given to participation and inclusion indicates that the CRPD envisages a strong form of participation, especially in relation to decisions that directly affect a person’s rights and entitlements. This is consistent with the emphasis on the perspective of the person in the social model of disability. The principle of participation is enhanced by the principle of choice. Choice has particular significance in a human rights approach because it provides a

The social model of disability 33

reference point for the determination of what constellation of rights, entitlements and protections may be preferred by the person. For example, choice is referred to in preambles (n) and (o): Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices. Considering that persons with disabilities should have the opportunity to be actively involved in decision making processes about policies and programmes, including those directly concerning them [emphasis added by the author]. The ‘freedom to makes one’s own choices’ also appears in the first general principle in Article 3(a) which refers to: Respect for inherent dignity, personal autonomy including the freedom to make one’s own choices, and independence of persons [emphasis added by the author]. The obligations in the CRPD with respect to participation and choice counter the tendency to overlook or dismiss the personal and social contributions that people with disabilities are able to make.

Capacity and support The dual principles of participation and choice require the inclusion of people with disabilities in decision making processes. With respect to disability, guardianship laws generally govern the basis on which decisions may be made on behalf of people who are unable to make decisions for themselves. In developed jurisdictions modern substituted decision making laws typically oblige the substitute decision-maker to make decisions in accordance with the known views and wishes of the person, or, if the views and wishes of the person are unknown, according to a ‘best interests’ standard (Richardson 2011). Mental health laws usually provide a parallel substituted decision making framework that permits psychiatrists to make treatment decisions. Substituted decision making laws sometimes include criteria for determining whether a person may be regarded as able to make their own decisions. People with disabilities argue that these laws, in whatever form, tend to overlook their decision making abilities (Lammers and Happell 2003). The CRPD addresses this issue through the principle of participation and its emphasis on the provision of support for capacity. Article 12 of the CRPD, which concerns ‘equal recognition before the law’, complements Article 5 (Equality and non-discrimination). Article 5 guarantees ‘the equal protection and equal benefit of the law’. Article 12(1) affirms that ‘persons with disabilities have the right to recognition everywhere as persons before the law’.

34 The CRPD

Article 12(2) requires state parties to recognize that ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’. Considered in light of the principle of participation, the obligation in Article 12 is relevant to the involvement of people with impairment in decision making processes that have legal dimensions or implications in law, including health decisions. During the drafting process, the definition of legal capacity in Article 12 generated a debate about the distinction between ‘a legal capacity for rights’ and ‘a legal capacity to act’. As Arlene Kanter explains, the phrase ‘a legal capacity to act’ referred to the power to do acts which have a legal effect, whereas ‘a legal capacity for rights’ referred to the fitness or ability of the person to exercise the power (Kanter 2007: 302). The concern to avoid this distinction was driven by the perception that the objectives of the CRPD could be undermined in some nations if domestic laws acknowledge a capacity for rights, in principle, but adopt laws that have the effect of denying legal entitlements to certain groups of people. At drafting sessions a suggested summary of the intended meaning of the final text of Article 12 was provided by the Canadian delegation. The summary alluded to the distinction between formal entitlement and the actual ability of people in the following way: persons with disabilities, like all members of society, are presumed to have legal capacity to act in all aspects of their lives. And, as with all members of society, a determination of incapacity should only be based on evidence of the individual’s actual decision making ability, rather than on the existence of a disability. Read together with the entire Convention, this provision underscores that opportunities for persons with disabilities to exercise their legal capacity cannot be denied on a discriminatory basis. cited by Kanter 2007: 304 The final form of Article 12 reflects the Canadian approach.Thus, Article 12(1) targets direct discrimination in the law, indicating that laws that deny ‘legal personhood’ to people on the basis of their group status will offend Article 12(1) (Kanter 2007: 302). Article 12(2) recognizes the enjoyment of ‘legal capacity on an equal basis with others in all aspects of life’. This subparagraph targets indirect discrimination by requiring that, in practice, law respects the legal personhood of people with impairments, respects the decisions that are made by people with impairments, and ensuring that the law gives legal effect to those decisions. Article 12(3) builds on the first two paragraphs, drawing on the principle of reasonable accommodation in Article 2 to require state parties to ‘take all appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’. Given the overall importance of participation in the CRPD, Article 1(3) may be understood as an obligation to provide the full range of measures that may be required to enable people with impairments to participate fully in the

The social model of disability 35

decision making process, unless the provision of such measures falls beyond the limits of the reasonable accommodation principle. Article 12(3) indicates, for example, that it is illegitimate to conclude that a person with a mental health condition is unable to meet legal standards of decision making ability until all appropriate and ‘reasonable’ measures of support have been provided. Furthermore, when read in conjunction with the principle of participation, if it is determined that a person does not meet the legal standard that may be required for decision making, the right to participate remains in place.Thus, the person is entitled to remain party to the decision making process in accordance with the CRPD’s emphasis on inclusion and participation. Whatever the nature and extent of the support that is provided, state parties must ensure that ‘measures that relate to the exercise of legal capacity’ are governed by the safeguards contained in Article 12(4). According to 12(4), ‘measures that relate to the exercise of legal capacity’ must ‘respect the rights, will and preferences of the person’, be ‘free of conflict of interest and undue influence,’ be ‘proportional and tailored to the person’s circumstances,’ apply for the shortest time possible, and be subject to regular review by a competent, independent and impartial authority or judicial body’. The meaning of the phrase ‘measures that relate to the exercise of legal capacity’ in Article 12 has generated a debate about whether the CRPD contemplates substituted decision making processes. Tina Minkowitz argues that substitute decision making offends the right to exercise legal capacity which is protected by Article 12. She argues that Article 12 requires the adoption of an assumption that people with impairments have the capacity to make decisions, understood in the sense that people with mental health conditions should be treated as if they have power to make legally binding decisions at all times (Minkowitz 2010).This approach is linked to the argument that if the CRPD is correctly interpreted it disallows involuntary medical treatment. Similarly, Amita Dhanda argues that the CRPD calls for a recognition of the fluid and socially constructed nature of determinations of capacity, and the entrenched privilege that is accorded to the normative standard of cognitive capabilities (Dhanda 2009). Dhanda challenges substitute decision making arrangements in mental health and disability laws on the basis that the presence of such laws inevitably brings into question the capacity of all persons with psychosocial disability. This, she argues, gives rise to a situation where all people with psychosocial disabilities are disadvantaged by the ‘the imposition of dependence’ which ‘is a negation of human aspiration, respect and choice’ (Dhanda 2009: 2). Dhanda draws on a conceptualization of ‘human interdependence’ to argue that real benefits would accrue to the majority of people with disabilities if this approach was taken. Some of the difficulty surrounding the interpretation of Article 12 rests on differing appreciations of the role of law and the relationship between legislative provisions and the practice of law ‘on the ground’. This difficulty is particularly

36 The CRPD

pronounced in disability and mental health where the most fundamental aspects of a person’s life are governed by elaborate regulatory laws. The debates about Article 12 point to the need for empirical research that investigates the operation of mental health and other disability laws. Nevertheless, it can be argued that Article 12 requires state parties to adopt laws that are sufficiently flexible to accommodate the range of circumstances and situations that may be encountered. The law should address barriers to participation, and facilitate appropriate medical, legal and social responses. A definitive feature of Article 12 is its assertion that, wherever possible, decision making power should rest with the person with impairment. That principle requires the implementation of laws and legal processes that recognize the legal personhood of persons with impairment and facilitate the exercise of their legal capacity. Such laws should operate in a way that facilitates participation. They must also be subject to the oversight mechanisms referred to in Article 12(4), and ‘respect the rights of the person’ at all times. Furthermore, consistent with the principles of equality and the participation, measures ‘with respect to capacity’ must respect the ‘rights, will and preferences’ of the person. Bearing in mind the human rights emphasis on positive rights, including the right to health treatment, Article 12 does not appear to exclude the provision of necessary medical treatment in all circumstances. If circumstances arise that appear to warrant such intervention, other articles in the CRPD became relevant. For example, the intervention must be in accordance with Article 17 (Protecting the integrity of the person), Article 25 (Health) and Article 14 (Liberty and security of the person). The combined effect of these Articles augments the obligation in Article 12(4) to ensure that the rights of people, as defined by the CRPD, are respected at all times.This suggests, for example, that whether or not a determination has been made that the person lacks capacity with respect to medical treatment, separate issues arise with respect to the question of whether such a determination justifies a deprivation of liberty or justifies the forced administration of medical treatment against the person’s past or present wishes. Article 12 also serves to incorporate supported decision making perspectives into international human rights law. Supported decision making is currently regarded as ‘best practice’ in decision making processes in the disability arena (Gordon 2000). The principle of participation in the CRPD adds a dimension to the decision making debate that is yet to receive prominence. The analysis above argues that whether or not a person is regarded as having the ability to make legally binding decisions, the principle of participation requires that the views of the person are sought, and their choices and wishes given due respect at all times. This approach enables the perspectives of the person to be taken into account and their choices followed wherever possible. It dispenses with the potential barrier to participation that may be created by a determination of incapacity. Such an approach would maximize the opportunity to respect the

The social model of disability 37

autonomy and dignity of the person throughout any decision making process. Considered in light of the social model of disability the crux of the question is whether decision making processes, whatever their nature, are unblemished by discriminatory assumptions and attitudes. This observation raises question about the nature of discrimination and the approach to equality adopted by the CRPD to which I now turn.

Chapter 4

Non-discrimination and informed consent

Non-discrimination and equality are closely aligned concepts in human rights law. Equality is one of the foundation principles of the Charter of the United Nations and is referred to in Articles 1, 2, 7 and 23 of the Universal Declaration of Human Rights. Protection against discrimination is included in all human rights standards and is a key principle in the CRPD. The prominence of equality and non-discrimination in international human rights law is accompanied by an ongoing debate about how these concepts may be expressed and given substance in domestic law. The development of non-discrimination and equality law in domestic law has followed three phases (Lovecy 2002). In the 1970s, equality law adopted formal standards of equality and equal treatment requirements (Arnardóttir 2009). In practice, the right to equal treatment operated as a legal rule that required the equal treatment of equals, but permitted the unequal treatment of differently situated people (Arnardóttir 2009: 47). Legal reasoning that failed to engage with the question of difference was criticized for limiting the efficacy of equality laws as a vehicle for social change (Minnow 1991). In disability and mental health, formal equality approaches encourage the assumption that standards of equality in the disability sector refer to a standard of equality among different disability groups, rather than to the realization of a standard of equality that is measured against the rights enjoyed by nondisabled people. In the 1980s, a second generation of equality laws adopted a ‘substantive difference approach’ (Arnardóttir 2009: 48). The substantive difference approach addressed inequality by prohibiting the unequal treatment of people from different groups. For example, anti-discrimination laws prohibited discrimination on the basis of gender, race and disability. The recognition of the substantive difference approach in international law is reflected in the adoption of thematic conventions such as the United Nations Convention on the Elimination of All Forms Racial Discrimination (CERD), the United Nations Convention on the Elimination of Discrimination Against Women (CEDAW), and the United Nations Convention on the Rights of the Child (CRC), and most recently in the CRPD.

Non-discrimination and informed consent 39

In domestic law the substantive difference approach enabled the development of the legal concept of ‘indirect discrimination’, which seeks to define the hidden or systemic effects of discrimination, and laws that permitted ‘positive’ discrimination. Positive discrimination permits different treatment in order to achieve substantive equality (Thornton 1995). The substantive difference approach made an important contribution to the development of equality laws by acknowledging the wider social context in which discrimination occurs, including the effects of entrenched discrimination. In the 1990s, equality debates shifted toward a concern to ensure that people who may have been regarded as ‘different’ be included in the ‘mainstream’ (Lovecy 2002: 276–7). How the different approaches to equality relate to contemporary human rights standards in disability remains a matter of debate. Gerard Quinn argues that the ‘human rights approach’ in disability has developed differently in mental health law, intellectual disability law and equal opportunity law (Quinn 2009: 18). Calling for a unified theory of disability discrimination, Quinn argues that the different rights traditions in the three disability sectors have foreclosed meaningful dialogue about the realization of disability rights (Quinn 2009). This book acknowledges the wider theoretical debate but is precluded from a full discussion of it.This chapter offers a small contribution by considering the obligations that flow from the principle of nondiscrimination in the CRPD and their application in the context of treatment decisions. The chapter argues that principles of equality and non-discrimination, considered in the light of the social model of disability and the principle of participation, demand a fulsome engagement with mental health advance directives.

Non-discrimination in the CRPD The CRPD makes it clear that people with disabilities are subjects of law and bearers of human rights. They are entitled to legal protection and equal treatment before the law. The CRPD also makes it clear that the relevant standard of equality is the recognition of human rights ‘on an equal basis with others’, as is repeated throughout the text of the CRPD. For CRPD purposes, therefore, the relevant point of comparison for any human rights question is the situation of people who are not disabled (Quinn 2009). The approach to equality and non-discrimination enjoined by the CRPD is set out in Article 4 (General Obligations). Article 4(1) requires that: States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. Article 4(1)(b) includes an immediately binding positive obligation to modify or abolish practices that discriminate against people with disability:

40 The CRPD

To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities. A key question raised with respect to the obligations imposed by the CRPD is whether these strong words and the apparently clear statement of obligation are modified by the principle of progressive realization and the enforceability gap discussed in Chapter 2. Article 4(2) refers specifically to economic, social and cultural rights: With regard to economic, social and cultural rights, each State Party undertakes to take measures to the maximum of its available resources and, where needed, within the framework of international cooperation, with a view to achieving progressively the full realization of these rights, without prejudice to those obligations contained in the present Convention that are immediately applicable according to international law. On one reading it is possible to interpret Article 4(2) as replicating the enforcement gap between negative and positive rights. For example, Article 4(2) requires state parties to ‘undertake to take’ measures relating to economic, social and cultural rights ‘to the maximum of its available resources, with a view to achieving progressively the full realization of these rights. These words suggest that state parties are permitted to implement the economic, social and cultural rights contained in the CRPD progressively, according to the availability of resources. Article 4(2) refers to ‘those obligations contained in the present Convention that are immediately applicable according to international law’. According to Article 2(1) of the ICESCR, obligations with respect to economic, social and cultural rights are immediately binding when there are available resources: Each State Party to the present Covenant undertakes to take steps, individually and through international assistance and co-operation, especially economic and technical, to the maximum of its available resources, with a view to achieving progressively the full realization of the rights recognized in the present Covenant by all appropriate means, including particularly the adoption of legislative measures. However, Article 2(2) of the ICESCR requires that such measures be implemented without discrimination: The States Parties to the present Covenant undertake to guarantee that the rights enunciated in the present Covenant will be exercised without discrimination of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

Non-discrimination and informed consent 41

Article 2(2) therefore imposes immediate obligations with respect to the measures that may be necessary to ensure that human rights are implemented without discrimination. The requirement that measures must be implemented without discrimination on the basis of disability invokes the definition of ‘discrimination on the basis of disability’ contained in Article 2 of the CRPD: ‘Discrimination on the basis of disability’ means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation [emphasis added]. ‘Reasonable accommodation’ is also defined in Article 2: ‘Reasonable accommodation’ means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms. If it is accepted that Article 2(2) of the ICESCR establishes that the principle of non-discrimination imposes immediately binding obligations to implement measures on a non-discriminatory basis, the definition of ‘discrimination on the basis of disability’ in the CRPD extends the obligation to positive measures that are designed to redress discrimination. The principle of reasonable accommodation requires the implementation of the additional measures that are necessary to enable people with disabilities to participate on an equal basis with others. Additional measures may not be required in a particular case if the ‘adjustment’ would impose disproportionate or undue burden. Otherwise, additional positive measures are required to address discrimination on the basis of disability. The nature of such measures will encompass those that may be considered necessary when a ‘social model of disability’ analysis of discrimination is adopted. As Rebecca Brown and Janet Lord explain, the reasonable accommodation principle provides a mechanism that enables the effects of preexisting or entrenched discrimination to be addressed (Brown and Lord 2011). Reasonable accommodation principles must be considered in light of the traditional assumption in disability that standards of inequality are an appropriate ‘norm’. This position has been criticized as the reflection of paternalistic assumptions about ‘special needs’. A conceptual conundrum posed by the CRPD is that the obligations with respect to ‘reasonable accommodation’ appears to retain the principle of special needs. The critical difference in the

42 The CRPD

CRPD is that it recasts special needs in a framework of equality and nondiscrimination. The reconceptualization of special needs as a human rights measure requires their evaluation in terms of their contribution to outcomes of substantive equality. A related question raised by the principle of non-discrimination is the extent to which reasonable accommodation requirements encompass social and economic measures. The CRPD affirms the conceptual dissolution of the distinction between ICCPR and ICESCR rights. Economic, social and cultural rights have taken centre stage in the human rights discourse, although the ramifications of this shift are yet to be fully appreciated, or reflected in the structures of domestic law. Article 4(a) of the CRPD requires state parties to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the CRPD. As discussed in the previous chapter, the rights are far reaching.

Reasonable accommodation in mental health How does the reasonable accommodation principle apply in mental health? With respect to mental health, the obligation to ‘take all appropriate measures . . . to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities’ expressed in Article 4(1)(b) of the CRPD raises the question of whether different treatment in law constitutes ‘discrimination against persons with disabilities’. As the analysis of reasonable accommodation suggests, different treatment is permissible when it constitutes an adjustment that is ‘necessary and appropriate’ to ensure that people with disabilities may enjoy or exercise human rights on an equal basis with others. However, the definition of reasonable accommodation suggests a two-stage approach to a human rights analysis of different treatment.The first stage of analysis would identify ‘different treatment’ on the face of the law. The second phase would consider the effect of different treatment. Evaluation of the latter should be attuned to the effect or outcome of the different treatment in terms of equality, discrimination and the enjoyment of human rights. In the case of the analysis of mental health legislation, a human rights approach would consider the effect of different treatment in practice. As discussed in the previous chapter the experience of people who are subject to such laws should be central to the analysis. Above all, principles of non-discrimination and reasonable accommodation provide the necessary mechanisms that support the inclusion of people with disabilities in the ‘mainstream’. In the CRPD, the notion of mainstreaming is reflected in preamble (g) of the CRPD which refers to: (Emphasizing) the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development.

Non-discrimination and informed consent 43

‘Mainstreaming’ is concerned with elimination of social conditions that create the ‘otherness’ on which discrimination is based. In the CRPD this objective is reflected in the emphasis on social inclusion and participation.

Participation, equality and informed consent Can the ‘different treatment’ of people with mental illness by mental health law be justified on reasonable accommodation grounds? As is discussed above, mental health treatment is governed by both common law and mental health law. Mental health laws apply only to people with mental illness. The question raised by the equality principle in the CRPD is whether the different treatment of people with mental illness under this regime accords with human rights principles. As is argued above, the observation that there is different treatment should invite in the first instance a comparative analysis of general and mental health laws. In this respect a comparative analysis of how the principle of informed consent applies in health and mental health care provides a framework for CRPD analysis because informed consent is directly relevant to the question of participation. In most developed jurisdictions health-care services are provided on a voluntary basis. Care and treatment is governed by the principles of privacy, autonomy and self-determination. These principles reflect the position in law that intimate bodily contact or intrusions on the body, such as those that routinely occur in the provision of health care, are only permissible when the contact is acceptable to the person. The law of informed consent functions as a codification of the relationships between health professionals and their patients (Fennel 1996).With some minor exceptions, it is established that people who have a ‘sound mind’ are at liberty to reject medical advice and may do so for any reason whatsoever. As is demonstrated in the case studies in the next part of this book, the detail of that law has developed differently in different jurisdictions. Nevertheless, three core elements of the principle can be identified. These are that: • • •

the person who provides consent has sufficient cognitive ability to recognize the nature and consequences of the decision to be made; the person is provided with all the relevant information needed to make the decision, including the information that is of particular importance to the person; and the person’s decision is not vitiated by undue influence, fraud or other factors that may undermine the integrity of the decision (Stewart and Lynch 2003).

Debates about the elements of informed consent and its application in a variety of medico-legal contexts have occupied the courts and scholars for several decades (Manson and O’Neill 2007). It is generally established in law that a

44 The CRPD

person with capacity may refuse any treatment including life-saving medical treatment.The proposition that people are entitled to refuse health care, including life-saving health care, has proved to be perennially controversial (Manson and O’Neill 2007).The debate has brought the question of capacity into sharp focus because capacity turns on the characterization of a person’s cognitive abilities. A (more or less) agreed version of the capacity test has developed over time (Hotopf et al. 2005). Grisso and Appelbaum for example describe the core elements of capacity as the ability to express a choice, understand information relevant to the treatment decision, appreciate the significance of the treatment information for one’s own situation, and reason with the relevant information so as to engage in a logical process of weighing up treatment options (Grisso and Appelbaum 1998). In addition to the elements of the capacity test, the principles that govern its application are similarly (more or less) agreed. These are that: • • •

a person must be assumed to have capacity unless it is established that he or she lacks capacity; a person may not be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success; and a person is not to be treated as unable to make a decision merely because he or she makes an unwise decision.

Dame Butler-Sloss provides a clear summary of capacity as a threshold concept for treatment decisions in Re MB (1997): A competent woman, who has the capacity to decide, may, for religious reasons, other reasons, for rational or irrational reasons or for no reason at all, choose not to have medical intervention, even though the consequence may be the death or serious handicap of the child she bears, or her own death. In that event the courts do not have the jurisdiction to declare medical intervention lawful and the question of her own best interests, objectively considered, does not arise. Re MB at [543] Dame Butler-Sloss goes on to explain that irrationality is this context connotes a decision that is so outrageous in its defiance of logic, or of accepted moral standards, that no sensible person, who had applied his mind to the question to be decided, could have arrived at it. Re MB at [543] She offers an example of irrationality as the misperception that blood was poisonous because it is red. A misperception of this nature may indicate a

Non-discrimination and informed consent 45

disorder of the mind sufficient to support a determination that the person lacks capacity. In Dame Butler-Sloss’s view: Although it might be thought that irrationality sits uneasily with competence to decide, panic, indecisiveness and irrationality, in themselves, do not as such amount to incompetence, but they may be symptoms or evidence of incompetence. Re MB at [543] This reasoning illustrates the ease with which faulty logic or circular reasoning may defeat the capacity standard. Furthermore: the graver the consequences of the decision, the commensurately greater the level of competence is required to take the decision. Re MB at [543] In this passage Dame Butler-Sloss outlines the relationship between the ability to reason and the consequences of the decision, providing guidance on the process of reasoning that should accompany the determination of capacity as a legal standard. On its face it provides an approach that accommodates the need to balance respect for autonomy with respect for the principle of protection in a humane society. Similar reasoning applies to analysis of future decisions. Despite the elegance of the argument, Dame Butler-Sloss does not address underlying difficulties associated with the capacity assessment. The passages cited above illustrates the potential for ‘circular reasoning’ to taint the capacity decisions, and the subjective opinions to influence determinations about the ‘gravity of consequences’. People with mental health conditions argue that discriminatory assumptions about their capacity to make reasonable decisions leads some clinicians to make misplaced conclusions about their ability to reason and their ability to evaluate the consequences of a decision (Roper and Edan 2011). If this occurs, a person may be deemed to lack capacity when they express a wish to refuse treatment or choose a treatment that differs from the one that is recommended to them. In jurisdictions where voluntary treatment decisions are made in the ‘shadow’ of compulsory treatment laws, voluntary compliance may be achieved by the threat of legal force, or compulsory powers may be invoked. For example, the civil commitment provisions in the Mental Health Act 1986 in Victoria, Australia, permit compulsory treatment if the person refuses treatment and meets the other (broad) statutory criteria. Making decisions in a coercive environment limits the opportunity for people with mental health conditions to make decisions about their health care. On the other hand, clinicians argue that a capacity test that is insensitive to the ‘complex and subtle’ loss of capacity that they observed in some people with a mental illness deprives vulnerable people of the protection they need if it permits them to refuse appropriate

46 The CRPD

treatment (Dawson and Szmukler 2006). These commentators contend that mental health laws that permit compulsory treatment on a ‘need for treatment’ basis provide a proper response to vulnerable people. A dimension of the informed consent process that is often overlooked in mental health care is the requirement to provide the information that is necessary to make the decision. As is noted above, a determination of capacity rests on the ability of the person to understand, retain and reason with the information that is provided to them. Informed consent is based on the right to self-determination, as Justice Cardoza identified in Schloendorff v Society of NewYork Hospital (1914). In most health situations, the right to self-determination relies on the communication of medical information about the expected outcomes of a proposed medical intervention. The fundamental relationship between self-determination and health information is recognized in health law. For example, in the North United States case of Canterbury v Spence (1972), which involved the failure to disclose risk of paralysis after a laminectomy, the District Court recognized that informed consent required the communication of all matters that are material to the decision. According to the court, ‘the test for determining whether a particular peril must be divulged is its materiality to the patient’s decisions: all risk potentially affecting the decision must be unmasked’. A similar approach is found in the case of Rogers v Whitaker (1992) heard before the High Court of Australia. Maree Whitaker successfully claimed that the failure of her surgeon to warn her of the 1 in 14,000 risk to her eyesight amounted to negligence.The issue was whether the (rare) risk of damage to the ‘good’ eye was a ‘material’ risk (McSherry and Faunce 1997). The court held that while some allowance may be given to a person’s general knowledge, they should receive information about the common or expected side effects of the procedure or intervention, very grave or serious risks, and risks that are material to the person. The reference to ‘material’ risks refers to information of such special importance to the person that it may influence the person’s decision about the treatment. In Rogers v Whitaker the complainant argued that had she known there was any risk of losing her eyesight she would not have agreed to the cosmetic procedure. The critical aspect of the judgement from a human rights perspective is the recognition that there must be an exchange of information between the person and the clinician in order to ascertain what information may be materially relevant to the person in their unique circumstances. This implies that information relevant to the decision may extend further than the expected risk and benefits of the proposed treatment (Skene 2004). People with mental illness argue that informed consent is not practised to the same standard in mental health as it is in general health. The law as it applies to general health requires full information to be communicated to the person.The information must be relevant to the person’s particular circumstances and interpreted in light of the person’s position (see Chappel v Hart 1998). The person must have an opportunity to understand and appreciate the information and offer relevant information in return. All relevant matters must be considered

Non-discrimination and informed consent 47

from the perspective of the person, and should include consideration of the person’s personal, social and economic circumstances, and the potential for both the positive and negative effects of the proposed treatment to manifest. Informed consent is recognized in law as a communicative event. Whenever that standard is not met, the gap between the clinical perspective and the personal perspective may widen to the point where the therapeutic relationship is disrupted. The broad approach to the content of information that is represented in these versions of informed consent is commensurate with the developing ‘human rights’ approach to informed consent that accords with the social model of disability and its recognition of the social determinants of health. In terms of the questions of choice and non-discrimination, the analysis of informed consent considered in light of the CRPD points to the conclusion that with respect to voluntary medical treatment, people with mental health conditions are entitled to exercise control over health decisions in the same way as other people.Appreciating the human rights content of the principle of informed consent and the obligation to provide support for the decision making process offers a framework for the development of CRPD-compliant practices in mental health. Such processes should increase the likelihood that medical treatment acceptable to the person and to their clinicians will be provided in a non-coercive environment. An additional issue raised by mental health laws is that, in general, mental health laws permit the detention and treatment of people with mental illness to prevent them endangering other people.The grounds for civil commitment on risk and danger criteria are also controversial. People with mental health conditions, lawyers and scientists argue that the assessment of risk and danger in the civil commitment process is underpinned by flawed science. In particular, the determinations are tainted by ‘pretextuality’ (Perlin 2006). At the international level, the Committee on the Rights of Persons with Disabilities (Tunisia) 2011 which monitors the implementation of the CRPD has indicated that ‘deprivations of liberty on the basis of disability’ are unacceptable (CRPD 2011).This comment suggests that the Committee’s analysis of the CRPD with respect to mental health law will continue to evolve.

Mental health advance directives What contribution does the CRPD offer to the analysis of mental health law? The equality and non-discrimination principles in the CRPD, considered in light of the social model of disability and the principle of reasonable accommodation, emphasize the importance of choice and self-determination. The CRPD also recognizes the need to protect people who may be subjected to human rights abuses. For example, Article 16 (Freedom from exploitation, violence and abuse) requires that: States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both

48 The CRPD

within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects. Article 16(1) Although its text is brief, Article 17 (Protecting the integrity of the person), also invokes the principle of protection: Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others. As is discussed in Chapter 2, the articles in the CRDP that refer to protection, and well as those that refer to autonomy, should be interpreted with reference to integrated analysis of human rights. Both the ‘positive’ and ‘negative’ rights elements in each of these articles should be considered. For example, the text of Article 17 suggests that it may be invoked equally to defend a principle of non-interference as to defend a principle of intervention. This raises the question of how an appropriate balance between principles of autonomy and protection might be determined. As was foreshadowed in the discussion in the previous chapter, the CRPD approaches the balance between autonomy and protection at the individual level through its emphasis on capacity, participation and the importance that is given to the views and wishes of the person.These principles provide a mechanism that acknowledges difference and diversity, respects self-determination and provides a framework for protective intervention. As is discussed in Chapter 3, the right to health adopts a similar approach with respect to the principle of informed consent. The principle of participation in the CRPD extends the principle of informed consent to provide a mechanism that protects against human rights abuse in health decisions. Participation requires the involvement of the person in the decision making process, in order to ascertain the person’s views with respect to the appropriate approach. Their interpretation of the rights equation as it applies to their personal circumstances is authoritative because of the highly personal nature of health decisions. The value that the CRPD gives to diversity, equality and respect for the physical and mental integrity of the person provides further support for the proposition that the person’s preferences should guide the balance that must be struck between the dual principles of autonomy and protection. This proposition adopts the principle that the person who is affected by the decision is best placed to choose the constellation of rights, entitlements and protections that are relevant in health matters. Mental health advance directives are a method of identifying, expressing, documenting and communicating a person’s preferences.They provide a ‘readymade’ method of giving substance to the equality and non-discrimination principles demanded by the CRPD. Mental health advance directives provide a mechanism for the realization of CRPD right. They are already in use and have

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been incorporated into mental health legislation in several jurisdictions. Nevertheless, the human rights approach to mental health advance directives provides a different rationale for the promulgation of mental health advance directives than is currently envisaged in domestic law. The examples of mental health advance directive practice contained in the next part of this book illustrate the observation that mental health advance directives are yet to be fully embraced as a human rights tool. Conceived as part of the rights-based frameworks that dominated law reform in the 1980s, mental health advance directives have been grafted onto law and legal frameworks that retain capacity as the threshold legal requirement for the recognition of valid personal choice. In most jurisdictions mental health laws tend to rely on a strict distinction between capacity and incapacity as a basis for overriding personal choice. As the discussion above indicates, the principle of participation in the CRPD dissolves that distinction, requiring a human rights approach that engages with personal choice and respect for the views and wishes of the person in a new way. Contemporary human rights perspectives challenge domestic laws to modify this distinction, to allow the notion of respect for the views and wishes of people with mental illness to be given its full weight.The international engagement with the ‘problem’ of autonomy in mental health law provides an illustration of the struggle in common law based jurisdictions to create human rights approaches to mental health law reform.The following analysis of mental health advance directives in domestic law serves to highlight the contradictions of contemporary mental health law. The next chapters consider the status of mental health advance directives in Ontario (Canada), England and Wales, Scotland, Australia and New Zealand. They are preceded by a discussion of the development of the mental health advance directives movement in the United States which has led the global law reform movement. The ‘case studies’ illustrate the adaptation of the United States model by common law jurisdictions. They reveal the contested nature of the debate around mental health advance directives and the struggle to accommodate them in law. The jurisdictions have been chosen to illustrate the range of approaches to the recognition of mental health advance directives. In Ontario (Canada) an equality approach to ‘consent and capacity’ laws has recognized the wishes of the person in law. In England and Wales ‘advance decisions’ are given formal recognition by the Mental Capacity Act 2005 and respect for informal ‘advance statements’ is retained, although neither may override the authority to provide treatment in Part IV of the Mental Health Act 1983. The Mental Health (Care and Treatment) Act 2003 in Scotland has included recognition of ‘advance statements’ in most, but not all, of the decision making processes governed by the Act. In Australia and New Zealand, mental health advance directives are thought to be recognized in the common law. New Zealand has developed relevant policy, but Australia has not. Overall, these case studies illustrate the current incomplete or absent engagement with CRPD-based human right principles in mental health law.

Part 2

Mental health advance directives

Chapter 5

The genesis of a movement

Mental health advance directives have their roots in the radical social movements of the 1960s and 1970s. At that time, the consumer health movement, the critical legal studies movement, the civil rights moment, and the fledgling articulation of international human rights, combined to generate a re-interpretation of the role of law and legal action as a vehicle for social change (Deflem 2008). The movements for social change called into question traditional ideas about medical practice, the cause of mental illness, the value of clinical interventions, and the wisdom of institutionalized care. In a rapidly changing social environment, the courts in United States articulated clear standards for United States state-run institutions and developed rationales for a restrictive approach to civil commitment laws. These legal ideas have served as a model for the international development of mental health law (Weller 2010). The changing social and legal environment provided the foundation of the mental health advance directive movement. In many respects, the mental health advance directive movement became the ‘unfinished business’ of the rights approach. This chapter provides a brief sketch of the ideas that shaped the social movements of the 1960s and 1970s, the development of rights-based jurisprudence in United States and the current status of mental health advance directives in United States.

Social psychiatry, anti-psychiatry and radical social movements The reform movement in modern psychiatry dates from the interwar period in the United Kingdom and Europe when new approaches were developed in response to ‘shell shock’ and other neuroses (Rose 1985). These approaches supported the delivery of mental health services in smaller local mental hospitals with outpatient clinics, psychiatric day hospitals, group treatments and regular visiting (Porter 1997: 521). New theoretical perspectives also emerged. The ‘social psychiatry’ associated with the work of Adolf Meyer (1856–1950), for example, saw mental illness and mental disorder as the outcome of the dynamic interaction of people with their environments. Social psychiatry emphasized

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the need for group therapy and integration in the community. In doing so, it blurred the distinction between the sane and the insane, emphasizing the role of the ‘social’ in the aetiology of mental health conditions. This encouraged service delivery models that facilitated access to services, accommodated the mental health needs of the whole community and avoided the confinement and segregation of the mentally ill (Jones 1993). In the United States, biological perspectives struck a chord with the ‘social hygiene’ theory of the 1930s and 1940s. At that time, social hygiene perspectives dominated psychiatry and the provision of state care. For example, mental care institutions from the 1930s to the 1950s were governed by state laws that permitted the compulsory sterilization of ‘defectives’ (McLachlin 2006: 95). In the case of Buck v Bell (1927), the Supreme Court of the United States upheld the constitutional validity of state law in Virginia that provided for the sterilization of ‘mental defectives’. Following this decision 32 additional states adopted compulsory sterilization laws, some of which were not repealed until the 1980s (Parry 2008). During this period, physically intrusive interventions were common practice in American state institutions. Common interventions included convulsive therapies such as electroshock, insulin shock therapy, and psychosurgery such as leucotomy or lobotomy. By the 1950s, when the use of intrusive treatments reached their peak, intrusive interventions were routinely provided in rooms, outpatient clinics, and mobile units (Braslow 1997). The state-run mental health institutions of this period lacked basic standards. ‘Treatment’ was characterized by intimidation, abuse, neglect, enforced compulsory administration of primitive ‘noxious’ treatments, painful restraint, negligent seclusion, chemical restraint and an ‘unbridled enthusiasm’ for radical surgical interventions and new ‘chemical straightjackets’ (Parry 2008: 5). Medical historian Roy Porter refers to the therapeutic approach of the time as ‘violent, invasive, frankly experimental’ and predicated on the absolute powerless of psychiatric inpatient (Porter 1997: 520). The institutional inpatient population peaked in 1956 with 559,000 resident patients in public mental health hospitals (Parry 2008: 5). A growing public disquiet about the conditions in institutional care was reflected in the popularity of Ken Kesey’s novel One Flew Over the Cuckoo’s Nest (1962) and popular support for ‘anti-psychiatry’. Anti-psychiatry refers to a radical movement in psychiatry and beyond that emerged in the 1960s (Cooper 1967). Antipsychiatry was based on three main propositions. These are that mental illness is not an objective behavioural or biomedical phenomenon; that madness has a truth of its own; and that under the right circumstances psychotic madness could be a healing process and should not be pharmacologically suppressed (Porter 1997: 522). Two prominent figures in the anti-psychiatry movement were American psychiatrist Thomas S. Szasz, who published ‘The myth of mental illness’ in 1960 (Szasz 1960, 1961), and Scottish psychiatrist R.D. Laing who published The Divided Self: An Existential Study in Sanity and Madness in 1960 and Sanity, Madness and the Family in 1964.

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Anti-psychiatry drew its inspiration from radical intellectual movements of the 1960s. In sociology, these perspectives are represented in studies that are concerned with the social construction of deviance. The foundation work of Lemert (1951) was developed by Becker (1963) and Scheff (1966). Most well known is Erving Goffman’s acclaimed work on asylums and the social construction of madness which showed that the clinical practices and administrative rules in psychiatric institutions ‘fabricated’ madness (Goffman, 1961, 1963). Irving Zola’s (1972) critique of medicine as an institution of social control provided a conceptual bridge between the critique of deviance, the experience of psychiatry and the politics of state regulation and responsibility. A more challenging critique of the operation of power in post-modern societies was offered by French sociologist Michel Foucault (1964, 1973, 1977). ‘Post-modernism’ created a new debate in the social sciences about the operation of power, the nature of the ‘social’, the nature of the state control, and the relationship between the state and its citizens (Rose 1990; Giddens 1991). The consumer movement in mental health played a critical role in the translation of the radical intellectualism in sociology and psychiatry to the practical circumstances of the mental health ‘patient’. The contemporary consumer movement in mental health also emerged in the 1960s, although some groups appeared before this time. For example, the National Mental Health Association operated from 1909. The group We Are Not Alone (WANA) was founded by inpatients at Rockland State Hospital in New York in the 1940s, when a group of inpatients continued to meet after discharge in order to provide support and advice to others people making the difficult transition from hospital to community (Chamberlin and Rogers 1990; Frese and Davis 1997). In the 1960s and 1970s the WANA model encouraged the proliferation of small, unfunded, ‘self-help’ groups established by former patients who provided advocacy, peer support and education about services in the community (Breaky et al. 1996). These groups often became lobby groups who advocated against involuntary civil commitment, electroconvulsive therapy, antipsychotic medications, and poor conditions in care homes (Hatfield and Lefley 1993). In the 1970s, groups called the Alliance for the Liberation of Mental Patients, the Insane Liberation Front and Project Release were formed. As their names suggest, these groups were opposed to institutionalization. Between 1972 and 1986, consumer groups throughout North America were coordinated through the Madness Network News, holding annual consumer conferences on Human Rights Against Psychiatric Oppression between 1973 to 1985 (Chamberlin and Rogers 1990). During this period, personal accounts of mental illness and institutional experience such as Judi Chamberlin’s On Our Own: PatientControlled Alternatives to the Mental Health System (1978) inspired the movement. Chamberlin’s work coined the term ‘mentalism’ to refer to the stereotyping and oppression that was associated with psychiatric treatment and diagnosis (Van Tosh and Del Vecchio 2000).

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By the 1980s the consumer movement had begun to expand and diversify. The National Association of Mental Patients remained opposed to all forms of involuntary treatment, including electroconvulsive therapy, the administration of psychotropic medications and hospitalization. The National Mental Health Consumers’ Association lobbied for improvement in the mental health service systems and development of links between citizens and mental health professionals in a broad-based preventative approach ((Hatfield and Lefley 1993). By the end of the decade psychiatric ‘survivor’ groups called for an independent coalition. Support Coalition International (SCI) formed in 1988, later becoming Mind Freedom International. The World Federation of Psychiatric Users (WFPU), founded in 1991, became the World Network of Users and Survivors of Psychiatry (WNUSP). Both organizations currently function as international advocacy networks.

Rights, refusal and entitlement The 1960s also gave rise to an alliance of lawyers known as the Mental Health Bar established by Attorney Bruce Ennis (Isaac and Armat 1992). The work of Ennis and others fought to secure appropriate procedural safeguards for lawful civil commitment, and improvements in the forensic system. The Mental Health Bar was instrumental in facilitating the development of rights-based principles in mental health jurisprudence (Isaac and Armat 1992). For example, in the case of Lake v Cameron (1966), Chief Justice David Bazelon, the Chief Justice of the United States Court of Appeal, established the classic principle of the ‘least restrictive alternative’ which has become an almost universal feature of rights-based mental health laws. The principle was derived from the statement in the early case of Shelton v Tucker (1960) in which it was held that legitimate government purposes may not be pursued in a way that intrudes on fundamental personal liberties. In that case, CJ Bazelon stated deprivations of liberty solely because of danger to the (mentally) ill person themselves should not go beyond what is necessary for their protection. (at [660]) This statement expresses the ‘least restrictive alternative’ as a rationale with which to interpret the validity of deprivations of liberty. In the 1970s a series of constitutional challenges to the validity of state mental health laws extended the positive rights approach adopted in Lake v Cameron (1966).The leading case was Wyatt v Stickney (1971). Wyatt v Stickney establishes the principle that a state violates the person’s constitutional due process rights by basing confinement on the need for human treatment and failing to provide suitable and adequate treatment. Wyatt v Stickney was an appeal decision by the Circuit Court upholding ruling by the trial judge. Judge Johnson cited Morton

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Birnbaum’s article on the ‘The Right to Treatment’ (1960) in his judgement. According to His Honor, patients unquestionably have a constitutional right to receive such individual treatment as will give each of them a realistic opportunity to be cured or to improve his or her mental condition. (at [784]) He found that the programs at the hospital ‘failed to conform to any known minimums established standards for providing treatment for the mentally ill’ (at [784]). His Honor commented To deprive any citizen of his or her liberty upon the altruistic theory that the confinement is for humane therapeutic reasons and then fail to provide adequate treatment violates the very fundamentals of due process. (at [785]) Judge Johnson set out specific detailed requirements with respect to staffing, linen, furniture, environment and treatment plans. John Parry argues that Wyatt v Stickney had the effect of opening the ‘floodgates’ into the community (Parry 2008: 9). Being unable to meet the conditions imposed by the court, state health departments across the United States altered their admission and detention practices to radically reduce the number of detained patients. As Michael Perlin also explains, the unstoppable trend toward deinstitutionalization in the United States was amplified by the rights approach (Perlin 2011a). Rights-based jurisprudence was expanded in the 1970s, In Lessard v Schmidt (1972) the court held that Wisconsin’s civil commitment scheme was unconstitutional. O’Connor v Donaldson (1975) established ‘dangerousness to self and others’ as the procedural standard to guide constitutionally valid civil commitment laws, creating the right of non-dangerous persons to freedom from purely custodial confinement. Rights-based law and policy has come to be associated with ‘abandonment’ of the mentally ill, an ‘epidemic’ of homelessness, and the ghettoization and neglect of people with mental health condition (Isaac and Armat 1992). Rights-based mental health laws are also criticized for allowing people to ‘die with their rights on’ (Treffert 1974). Whatever view is taken, deinstitutionalization in United States has highlighted the inadequate provision of health and social services in the community (Gostin 2008). By the late 1970s, the Supreme Court had adopted a more conservative stance on mental health law issues which was matched in legislation by the gradual re-expansion of compulsory treatment powers augmented by community treatment powers (Petrila 2010: 360). This prompted legal advocates to challenge the legitimacy of treatment orders, rather than the validity of detention (Winick 1997).This legal focus revitalized interest in mental health advance directives, or psychiatric advance directives (PADs) as they are known in United States.

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General health advance directives In concert with the rights era in mental health, the advance directive or ‘living will’ movement in general health sought to extend the evolving recognition of informed consent principles in health law to the question of future care. The idea of formulating an advance directive to communicate competent decisions about future health care is attributed to the work of American lawyer Luis Kutner (Maclean 2008, citing Horttor 1998). Kutner published an article in 1969 entitled ‘Due Process of Euthanasia: the Living Will, a Proposal’. The living will movement, which primarily addressed medical treatment at the end of life, was successful in gaining public recognition of the right to control endof-life decisions as an aspect of the human right of physical and mental integrity. The courts were invited to articulate the law in a series of famous ‘end-oflife’ cases. In Re Quinlan (1976), 21-year-old Karen Quinlan was in a persistent vegetative state dependent on a respirator. The family’s request to remove the respirator was upheld by the Supreme Court of New Jersey. Basing its reasoning on an extension of a constitutional right to privacy, the court found that a person is not obliged to accept extraordinary treatment that was of no benefit to them, and that in this respect, a state’s legitimate interest in limiting a person’s right to privacy was confined to the obligation to preserve life (McColl Kennedy 1976). In Bartling v Superior Court (1984), 70-year-old William Bartling was admitted to hospital, having appointed his wife as attorney in an enduring power of attorney, and he had also completed a ‘living will’ expressing his wish not to receive treatment. Relying on the case of Cobbs v Grant (1972), the Californian Court of Appeal accepted the living will as a valid statement of Mr Bartling’s competent wishes. The court was influenced by a 1982 report that affirmed the appropriate standard in ethics and law was to presume in these circumstances that a patient possessed decisional capacity with respect to the appointment and the living will (Weisbard 1986). In the 1986 case of Paul Brophy, the court was asked to decide whether or not withdrawal of treatment was lawful in the absence of any formal documentation of the patient’s wishes. The Supreme Court of Massachusetts authorized the withdrawal of treatment, relying on the judgement in Lane v Candura (1978) in which it was accepted that the law protects the right to refuse treatment whether or not it is ‘wise or unwise’(Ulrich 1999: 29). In Cruzan v Missouri (1990), the Supreme Court of the United States was asked to consider whether the Due Process Clause of the Fourteenth Amendment would permit Cruzan’s parents to refuse lifesustaining treatment on their daughter’s behalf. The majority of the court, CJ Renquist, JJ White, Scalia, Kennedy and O’Connor, found that while people enjoyed the right to refuse medical treatment, incompetent persons were not able to exercise such rights. In order to allow another person to refuse treatment, the court held that ‘clear and convincing’ evidence that the person desired the treatment to be withdrawn was required, especially in circumstances where the consequences of an erroneous decision were irreversible (Ulrich 1999: 33).

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Following Cruzan, the federal Patient Self Determination Act (1990) (PSDA) was enacted (Ulrich 1999: 10).The PSDA enshrines the right to make advance directives in federal legislation (Cate and Gill 1992). It requires patients who are admitted to federally funded hospitals to be informed about their right under State law to prepare an advance directive. Hospitals are obliged to document whether or not the patient has executed an advance directive, to respect the patient’s wishes expressed in the advance directives, and to educate health-care providers regarding their use (Swartz and Swanson 2007).

Psychiatric advance directives Psychiatric advance directives were first mooted as a concrete platform for mental health law reform by Thomas Szasz based on the idea of ‘living will’ (Szasz 1982). Szasz’s article, entitled ‘The Psychiatric Will’, initiated the psychiatric advance directive movement in the United States. Szasz argued that the principles of due process that underpinned the advance directive movement in general health were equally applicable to the mental health arena. The psychiatric advance directive movement gathered wide supported from consumers, advocacy organizations, lawyers, clinicians and the Bazelon Center for Mental Health Law who continued to lobby for law reform (Isaac and Armat 1992). By 2006 all states permitted competent adults to make at least some psychiatric choices in advance – typically through a health-care power of attorney (Swanson et al. 2006a). Twenty-five states had introduced specific psychiatric advance directive provisions (Swanson et al. 2007). These laws sometimes placed psychiatric advance directives in a broader legal framework that limits their scope. It has been held by the courts that such limitations are unlawful when they are based on discriminatory criteria. For example, in the case of Hargrave v Vermont (2003), Ms Hargrave had executed a power of attorney refusing all psychiatric treatment. She challenged the validity of a Vermont law (Act 114) that allowed hospitals to appeal to the court to overrule an advance decisions made by an individual with a mental disorder (Atkinson 2007: 73). Both the District Court and the Second Circuit Court found the law to be contrary to the Americans with Disabilities Act 1990 (ADA), affirming that the ADA required people with mental illness to be provided with the same opportunity as others. The National Resource Center on Psychiatric Advance Directives provides detailed information about the state laws and attention has turned from the law toward the questions of implementation and efficacy. Psychiatric advance directive research has considered the demand for psychiatric advance directives (Swanson et al. 2006a); the barriers that prevent or limit the completion of psychiatric advance directives (Swanson et al. 2006b; Van Dorn et al. 2006; Adams et al. 2007; Swanson et al. 2007;Van Dorn et al. 2008; Henderson et al. 2010; Van Dorn et al. 2010); the role that psychiatric advance directives play

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reducing crisis events (Srebnik and Russo 2008); their role in reducing the perceptions of coercion (Khazaal et al. 2008; Monahan 2008); and their role in increasing compliance with treatment (Wilder et al. 2010).This literature shows that the implementation of mental health advance directives poses legal and practical challenges. Nevertheless, psychiatric advance directives in the United States are an established part of the mental health landscape.

Chapter 6

Ontario, Canada and the principle of choice

The development of equality-based ‘consent and capacity’ legislation in Ontario, Canada, has influenced mental health law in Canada and generated an internationally renowned ‘case study’ of mental health advance directives (McSherry 2008). The following summary of the Ontario experience sheds light on the questions of enforceability that are associated with mental health advance directives. The Ontario experience provides the background against which the debate about mental health advance directives has unfolded in other Commonwealth jurisdictions. Mental health laws in all Canadian provinces permit the involuntary hospitalization and involuntary treatment of people with mental health conditions who are in need of treatment, or who are considered to be a danger to themselves or others. Mental health laws in Canada vary with respect to the grounds for involuntary admission and treatment, the operation of capacity and consent principles, the ‘best interest’ test, the construction of substitute decision making processes, the arrangements for community-based involuntary treatment, and the powers of tribunals that oversee voluntary admission powers (Gray et al. 2000). Canada’s current Chief Justice the Right Honourable Beverley McLachlin describes these variations as the preference of legislatures for a ‘treatment’ or a ‘dangerousness’ approach to the common goal of balancing respect for autonomy with respect for the dignity and needs of mentally ill individuals (McLachlin 2006: 88). Legislation based on a treatment model generally favours the facilitation of treatment for individuals who are unable to ‘rationally’ assess their own need for treatment. Legislation based on a dangerousness model purports to limit state interference with individual autonomy. Advocates of the treatment model argue that rights-based models represent an impoverished understanding of rights. Advocates of the danger model warn that paternalism exposes individuals to unwanted and unwarranted intervention. Debate about the relative merit of ‘treatment’ or ‘dangerousness’ approaches in mental health legislation in Canada are being overtaken by the recognition that the main shortcoming of rights-based mental health laws, of either type, is their failure to provide a right to adequate health care of the mentally ill (Zuckerberg 2011: 286). The shifting focus of these debates illuminates the

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instability of the rationales that underpin mental health advance directives.This chapter considers the jurisprudence that has arisen from consent and capacity law in Ontario. It begins with a discussion of the evolution of the common law recognizing the right of individuals to make decisions about their health care.

Autonomy, integrity and health law in Ontario The authority to make a general health advance directive was established by the Ontario Court of Appeal in the internationally recognized case of Malette v Shulman (1990). Malette v Shulman expanded the recognition of the right to bodily integrity expressed in Schloendorff v Society of New York Hospital (1914) which was first recognized in Canada in the case of Reibel v Hughes (1980). Reibel v Hughes established the proposition in Canadian law that physical or mental medical treatment may not be administered without the patient’s consent. Malette v Shulman concerned the validity of advance instruction cards that were carried by Jehovah’s Witnesses who wished to refusal blood products in the event of an emergency. In upholding the validity of the advanced refusal card the court extended the principle of consent to recognize that a person’s purposeful directions or choices about future health care were valid instructions in the event that the person was unable to provide contemporaneous consent. The basis of the court’s reasoning was recognition of respect for bodily integrity as a fundamental social value. According to Justice Robbins in the Supreme Court of Ontario: The right to refuse treatment is an inherent component of the supremacy of the patient’s right over his own body. That right to refuse treatment is not premised on an understanding of the risks of refusal. However sacred life may be, fair social comment admits that certain aspects of life are properly held to be more important than life itself. Such proud and honorable motivations are long entrenched in society, whether it be for patriotism in war, duty by law enforcement officers, protection of the life of a spouse, son or daughter, death before dishonor, death before loss of liberty, or religious martyrdom. Refusal of medical treatment on religious grounds is such a value. If objection to treatment is on a religious basis, this does not permit the scrutiny of ‘reasonableness’ which is a transitory standard dependent on the norms of the day. If the objection has its basis in religion, it is more apt to crystallize in life threatening situations. The doctrine of informed consent does not extend to informed refusal. Malette v Shulman 1990 at [5] Justice Robbins recognized a hierarchy of interests in the following way: interest in the freedom to reject, or refuse to consent to, intrusions of her bodily integrity – outweighs the interest of the state in the preservation

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of life and health and the protection of the integrity of the medical profession. Malette v Shulman 1990 at [12] Malette v Shulman established a broad right to exert control over one’s future health care, even in circumstances where the refusal may result in the death of the person.The case also recognized that respect for individual choice based on moral or religious convictions was separate and independent from an appreciation of the medical consequences of the decision. In this regard, Justice Robbins acknowledged that the right to personal control may be displaced by the interests of the state in some circumstances. Nevertheless, the high social value attributed to bodily integrity places it above the state’s interest in the preservation of life and health of the person, and above the interest of the state in preserving the integrity of the medical profession. The right to bodily integrity in the context of mental health was confirmed in the case of Fleming v Reid (1991) (Fleming). At the relevant time, section 262 of Ontario’s Mental Health Act (1980) prohibited the administration of psychiatric treatment to people admitted under compulsory detention powers, except in an emergency or with the consent of the person’s substitute decisionmakers. The substitute decision-maker was required to make a decision in accordance with the prior capable wishes of the person. The physician was entitled to appeal a refusal of treatment to a review board, and the board was empowered to make a decision in the best interests of the patient. In Fleming, the review board overturned the substitute decision-maker’s refusal of treatment, which had been based on a clear, competent direction by the person. The issue before the court was whether the review board’s decision was valid. The Full Bench of the Ontario Court of Appeal held that the right to bodily integrity was protected under section 7 of the Canadian Charter of Rights and Freedom (1982). Section 7 states: Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice. The court found that any limitation of the rights expressed in section 7 must be on the basis of compelling reasons, in accordance with the principles of justice. In the court’s view the statutory scheme was unconstitutional because it deprived people who were detained under the Mental Health Act of their right to ‘security of the person’ contrary to section 7 of the Charter (Fleming 1991 at [30]). In response to the decision in Fleming v Reid the Ontario legislature amended both the Mental Health Act 1990 (MHA) and the Substitute Decisions Act 1992 (SDA) and introduced the Health Care Consent Act 1996 (HCCA). The aim of the amendments was to provide a constitutionally valid legislative

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scheme based on clear principles of consent, capacity and respect for prior capable wishes. Respect for prior capable wishes was to be given effect through a substituted decision making framework. The tensions generated by the new scheme were evident in the case of A.M. v Benes (1999). In that case the Ontario Court of Appeal overturned the decision of Sutherland J in A.M. v Benes (1998) in the trial court.The Court of Appeal upheld a decision of the Ontario Capacity and Consent Board to override a substituted decision maker’s refusal to continue to provide consent for electroconvulsive therapy (ECT) for her daughter. Considering the legislative scheme as a whole, the Court of Appeal concluded that the Ontario Review Board was entitled to review the substituted decision maker’s assessment of an incapable person’s best interests in accordance with the criteria in section12(2) of the HCCA.This conclusion was based on the view that section 10(1) (b) of the HCCA imposes a statutory obligation on health practitioners to ensure that substitute decision-makers understand both the criteria specified in section 21 and their responsibilities with respect to the consent or refusal of proposed treatment (A.M. v Benes (1999) [at 16]). On this reading of the HCCA, the review board’s involvement will be triggered only when a health practitioner concludes that a substitute decision-maker’s decision does not accord with the principles in section 21. In the Full Court’s view, therefore, the principle of ‘respect for the dignity and welfare of an incapable person’ required the Board to make a determination in the person’s best interest (A.M. v Benes (1999) [at 40]) in accordance with the criteria in sections 21(2) and s12(2) of the HCCA.This required consideration of the incapable person’s values, beliefs and wishes and of the expected benefits of the proposed treatment. In concluding that the Board’s determination of best interests test would prevail, the court found that the legislative scheme did not give the substitute decision-maker authority to make decisions on behalf of the person. It also found no special privilege attached in any way to the views and ‘non-binding’ wishes of the person as represented by the decision maker. The court drew a contrast between the statutory role and the powers and duties that might arise in a formal or legally binding relationship such as ‘a power of attorney for personal care’ (A.M. v Benes (1999) at [43]). This is because the substitute decision-maker is only a part of a statutory regime which, by its terms, tries to respect an incapable person’s well-being and dignity where that person’s consent or refusal to treatment cannot be established. ([at 42]) A.M. v Benes (1999) appears to confine the decision maker’s obligation under sections 10(1) and 21(1) to making decisions using only the ‘legally binding’ wishes of the person. This has the effect of limiting the scope of the legislative scheme by imposing a strict interpretation of what might constitute evidence of a person’s binding wishes. This approach sits oddly with the intention of

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the legislature to give effect to section 5(2) of the HCCA which permits a person, while capable, to express their wishes with respect to treatment in any manner. The judgement of Sutherland J in the lower court was animated by a concern that a strict interpretation of what might constitute ‘evidence’ of a person’s prior capable wishes. In his decision, Sutherland J reiterated the principle: It is a fundamental tenet of our law that, except in emergencies, no adult person is to be subjected to medical procedures or treatment carrying any meaningful risk without the informed consent of that person if that person is then capable of giving or refusing consent. A.M. v Benes (1999) at [18] In His Honor’s view, section 37(3) of the HCCA was unconstitutional because it failed to give actual notice of the ‘prior capable wish’ criterion set forth in section 21(1) of the HCCA. This absence meant that the basis of a substitute decision-maker’s refusal of consent was not properly considered, thereby allowing a patient’s right to personal autonomy and self-determination to be defeated in contravention of the principles of fundamental justice under section 7 of the Charter. Sutherland J’s judgement draws attention to the importance of facilitating the proper operation of the HCCA by providing appropriate information to all parties about the operation of the scheme. As His Honor infers, accepting a broad interpretation of the evidence that may indicate a person’s prior capable wishes shifts the primary inquiry toward a focus on the validity and applicability of the person’s wishes, giving greater scope to the operation of section 21(1). This view was not accepted by the Court of Appeal. The extent to which the legislative scheme respects the prior capable wishes of the person was again reviewed by the Court of Appeal in Conway v Jacques (2002). Conway v Jacques approached the status of the prior capable wishes by introducing the concept of ‘applicability’.The Court of Appeal was considering an appeal to a decision by Spence J in the Ontario Superior Court that overturned an order of the Ontario Consent and Capacity Board (CCB) for the substitute decision-maker to consent to psychiatric treatment for Mr Conway. In its consideration of the matter, the Court of Appeal affirmed the view expressed in T.(I.) v L.(L.) (1999) that the appropriate standard for review of a CCB is that of ‘reasonableness’. It restored the order of the Board on the basis of its findings were reasonable – in this case, that Paul Conway’s prior capable wishes were not applicable to the circumstances (Conway v Jacques (2002) at [37]). The Court of Appeal also took the opportunity to restate the applicable principles: Substitute decision making concerning medical treatment affects fundamental rights long recognized by the common law and now protected by the Canadian Charter of Rights and Freedoms.The right to decide whether

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to accept or refuse invasive medical treatment is fundamental to an individual’s bodily integrity and personal autonomy. Conway v Jacques 2002 at [28] Therefore: Legislation providing for substitute decision making on behalf of those incapable of making their own treatment decisions must take into account prior capable wishes concerning treatment. Conway v Jacques 2002 at [29] However: prior capable wishes are not to be applied mechanically or literally without regard to relevant changes in circumstances even wishes expressed in categorical or absolute terms must be interpreted in light of the circumstances prevailing at the time the wish was expressed. Conway v Jacques 2002 at [31] In formulating the ‘applicability’ criteria in the legislation, the court invoked the comments made by Robins JA in Fleming v Reid: Furthermore, there may be questions as to the clarity or currency of the wishes, their applicability to the patient’s present circumstances, and whether they have been revoked or revised by subsequent wishes or a subsequently accepted treatment program. Conway v Jacques 2002 at [31] The court held that the legislative scheme required the substitute decisionmaker to act in accordance with prior capable wishes if they are applicable to the circumstances, pursuant to section 21(1)(1) and, in the case that they are not, to make a decision on a ‘best interests’ basis pursuant to section 21(2).With respect to the requirement in sections 21(1) and 42(1) that the wish must be ‘applicable to the circumstances’ the court considered the nature of the wishes contemplated by the legislation. It held that the question of whether the wishes expressed by a person are applicable to the situation must be resolved with reference to the general characteristics of the wish and the time frame in which it operates. The court held that the ‘wishes’ contemplated by the HCCA fell into three categories. In the first category were deeply held beliefs, such as the wish of a Jehovah’s Witness not to receive a blood transfusion. These are likely to be precise and long standing. The second category comprised wishes that respond to an imminent extenuating circumstance, such as major and risky surgery. Such wishes were likely to be made with certainty and with realistic application

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to the person’s circumstances because they have been informed by medical advice and apply to the near future. In the third category are wishes that constitute a general expression of sentiment with respect to the contemplation of an uncertain future and are less likely to provide concrete guidance.Whether or not wishes are categorically expressed, they must be interpreted in light of the circumstances prevailing at the time the wish was expressed, and should not ‘be applied mechanically or literally without regard to relevant changes in circumstances’ (Conway v Jacques 2002 at [36]). Applying this approach, the court found that Mr Conway’s prior capable wishes were not applicable to the current circumstance because Mr Conway had accepted medication in the past, was experiencing deterioration in his health and antipsychotic medication was available (Conway v Jacques 2002 at [36–38]). This was not to be the end of the litigation with respect to Mr Conway’s refusal of treatment. The altered circumstances analysis has provided decision makers with a viable solution to the impasse that is created when respect for a person’s prior capable wishes leads to deterioration in the person’s clinical condition (Gray and O’Reilly 2001). The approach has since been applied by the CCB in Re S (2008) and Re F (2009). Drawn too widely it is a rationale that could defeat reasonable refusals of medical treatment. Developing an approach to the determination of whether or not prior capable wishes will be recognized, however, does not absolve the courts from considering the threshold question of whether the person was capable when the wish was expressed. The question of capacity was addressed by the courts in the cases concerning Professor Scott Starson and Mr Paul Conway.

Determining capacity The difficulties associated with the determination of capacity in the mental health context are illustrated by the litigation concerning Professor Scott Starson. Professor Starson was found to be incapable with respect to treatment upon his first admission to the Centre for Addiction and Mental Health in 1998. Professor Starson’s legal appeals with respect to the 1998 decision culminated when the Supreme Court of Canada reversed the finding of incapacity in Starson v Swayze (2003). In that case the determination of capacity was the central issue as defined in the HCCA. Capacity is defined in the HCCA as the ability: to understand the information that is relevant to making a decision about the treatment . . . and . . . to appreciate the reasonably foreseeable consequences of a decision or lack of decision. (section 4(1)) The majority of the Supreme Court held that Professor Starson was capable under Ontario law to refuse medication. The majority view, delivered by Major J on behalf of Justices Iacobucci, Major, Bastarache, Binnie, Arbour and

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Deschamps, held that the Board had misapplied the legal test for capacity by improperly allowing its view of Professor Starson’s best interests to influence its decision (2003 SCC32 CanLII: 3). The majority accepted the proposition that Professor Starson understood the purpose of the proposed treatment. Major J found that the CCB had paid insufficient attention to the evidence before it and had not considered, or inquired about, Professor Starson’s reasons for refusing treatment, or his appreciation of the consequences of the refusal. They drew attention to the content and quality of the communication between Professor Starson and his physicians, echoing the reasoning in Malette v Shulman that the basis for an individual’s refusal of medical treatment may have no bearing on the medical consequences of the decision, and is therefore not amenable to an analysis of reasonableness with respect to its medical consequences. In particular, the majority accepted that Professor Starson understood that his brain did not function normally and understood that the purpose of the proposed treatment was to ‘normalize’ his brain, which was an outcome he rejected. It is unclear whether Professor Starson was informed that a lack of treatment may lead to deterioration in his condition.The majority did not emphasize this aspect. In light of the available evidence, they determined that the decision to impose treatment was unreasonable. In contrast, the dissenting judgement by McLachlin CJ and Gonthier and LeBel JJ concluded that the Board’s decision was reasonable in light of the testimony offered by Professor Starson’s physicians (2003 SCC32 CanLII: 4). The physicians had concluded that despite Professor Starson’s intelligence, his delusions prevented him from appreciating the consequences of his treatment decisions, blinding him to that fact that without treatment his prospects returning to his academic work were very poor. Following this decision to uphold Professor Starson’s wishes, he remained in detention without treatment from late 1998 until 2005. Starson v Swayze established the test for capacity in Canadian law which is summarized by Chief Justice Beverley McLachlin (2006) as follows: A finding of incapacity requires evidence that the person does not have the cognitive ability to process, retain and understand information relevant to making a decision about treatment. A person will also be incapable if unable to appreciate the reasonably foreseeable consequences of a decision. In other words, a capable patient must be able to understand the relevant information, apply it to his or her personal circumstances and weigh the foreseeable risks and benefits of a decision or lack of decision.Whether the proposed treatment is in the patient’s best interests is not relevant to a determination of capacity. Justice Beverley McLachlin 2006: 98 Nevertheless, determining ‘capacity’ in the context of complex and unpredictable clinical circumstances remains a challenge.

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By 2005 Professor Starson’s condition had deteriorated significantly, prompting an application and a finding of incapacity by the Consent Capacity Board in 2005. On that occasion Professor Starson’s appeal to the Superior Court was dismissed for delay, after which consent for treatment was provided by Professor Starson’s substitute decision-maker, resulting in ‘dramatic’ improvement in his condition.Treatment was again discontinued in 2008 when Professor Starson exercised his right of review with respect to the 2005 finding of incapacity. By the time of the hearing in the Superior Court Justice three years later, Professor Starson had been readmitted as an involuntary patient because of a significant deterioration in his health. In proceedings before the Ontario Supreme Court in Starson v Pearce (2009), Brown J upheld the finding of incapacity and the validity of the substitute decision-maker’s consent. The court affirmed the role of the CCCB as an expert tribunal. The court also recognized the detailed procedural framework in the HCCA as being protective of the autonomy of individuals who lack capacity because it provides an appropriate framework for the facilitation of their medical treatment (at [25]). As to whether the supported decision maker was obliged to follow the person’s capable wishes, Her Honor noted, following Conway, that the obligation was qualified by the applicability of prior wishes to the current circumstance. Furthermore, Her Honor cautioned against the application of Starson v Swayze (2003) to the current deliberation on the basis that the latter was confined to the question of capacity, and did not address the question of prior wishes or their applicability to future decisions. Furthermore, Professor Starson’s circumstances had altered materially in the intervening years with respect to the efficacy of treatment, the effect of non-treatment and the question of public safety (at [20]).The court ordered that treatment be resumed. The resumption of treatment following the court’s decisions again brought improvement to his health. Professor Starson then resumed his efforts to seek release from his confinement (R v Starson 2009). In 2010 his appeal against an order of the Board which allowed his transfer from medium to minimum security accommodation was dismissed by the Superior Court on public safety grounds and leave to appeal that decision was declined by the Canadian Supreme Court (Re Starson 2011; Professor Starson v Mark Pearce 2011). Professor Starson continues to be in a Catch 22 situation (McSherry 2008).The law is his only recourse, yet the multiple legal actions in which he involves himself may leave the impression that the basis for his detention remains valid. The series of legal challenges brought by Mr Paul Conway also highlights the difficulty of applying the capacity criteria with respect to advance instruction and substituted decision making. The Conway litigation is significant because Mr Conway is asserting a right to choose a particular treatment. In 2005, Paul Conway challenged the Board’s finding that he was not capable of consenting to treatment with psychotropic medications, excluding first-generation medications. In Conway v Jacques (2005) the Superior Court referred the matter back to the Board, affirming the rule in Starson v Swayze (2003) that the issue

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on a capacity hearing is whether the individual is capable of making a decision about the suggested treatment, and that the wisdom of the decision, or the Board’s conception of the person’s best interests, is irrelevant to the determination (Conway v Jacques 2005 at [48]). The court found that the Board’s decision was tainted by its reliance on previous court determinations, and the failure to inquire into Mr Conway’s capacity, and its failure to interpret the legal standard for capacity correctly (Conway v Jacques 2005 at [60]). This was because, in the court’s view, the Board confused the tests regarding ‘understanding’ and ‘appreciation’ (Conway v Jacques 2005 at [55]). The Board again found that Mr Conway lacked capacity. Mr Conway appealed this decision and brought an action under the Canadian Charter of Rights and Freedoms (1982). As discussed below, these matters were ultimately considered by the Supreme Court of Canada in 2010. Considering the Ontario law in the light of litigation pursued by both Paul Conway and Professor Starson it may be argued that Ontario law provides an appropriately nuanced, protective regime which has permitted health professionals, tribunal members, lawyers and judges to craft approaches in difficult circumstances that attend to professional ethical obligations and are respectful of the rights and needs of the mentally ill. Considered in light of the analysis offered in the first part of this book, however it may be concluded that the courts have limited the application of the HCCA with respect to the person’s future wishes by privileging what is in effect a best interest determination that is not as closely engaged with the wishes and aspirations of the person as is required by human rights law. For example, in decision of the Superior Court of Justice in S.M.T. v Abouelnasr (2008) Justice Lack held that the forcible administration of antipsychotic medication which had been consented to by a substitute decision-maker in accordance with the legislative scheme, did not offend sections 7, 12 or 15 of the Charter.With respect to the forcible injection of anti-psychotic drugs, Her Honor found that the legislative scheme conformed to the ‘principles of fundamental justice’ required by Fleming v Reid. She found no evidence of different treatment sufficient to support a finding of discrimination under section 15, and no evidence of ‘grossly disproportionate’ treatment that may sustain a finding of ‘cruel or unusual treatment or punishment’ under section 12.

Human rights and Ontario law The Ontario consent and capacity law provides an example of the strong human rights influence in Canadian law. The Supreme Court of Canada found the rights to ‘freedom of speech’ and ‘freedom of religion’ to be implicit in Canada’s Constitution in the 1930s. Canada adopted the Bill of Rights as a quasi constitutional document in 1960. The Canadian Human Rights Act, adopted in 1977, protects equal opportunity and non-discrimination on the basis of gender, disability and religion.The Act establishes the Canadian Human

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Rights Commission and the Canadian Human Rights Tribunal.The Charter of Rights and Freedoms adopted in 1982 regulates federal activities throughout Canada and is complemented by Provincial human rights legislation. Canada is a signatory to the major international human rights conventions. Canada signed the Convention on the Rights of Persons with Disabilities (2006) on 30 March 2007 and ratified on 11 March 2010. In doing so, Canada posted a Declaration and Reservation that reserves the right to use substituted decision making arrangements: Canada recognises that persons with disabilities are presumed to have legal capacity on an equal basis with others in all aspects of their lives. Canada declares its understanding that Article 12 permits supported and substitute decision making arrangements in appropriate circumstances and in accordance with the law. To the extent Article 12 may be interpreted as requiring the elimination of all substitute decision making arrangements, Canada reserves the right to continue their use in appropriate circumstances and subject to appropriate and effective safeguards. With respect to Article 12(4), Canada reserves the right not to subject all such measures to regular review by an independent authority, where such measures are already subject to review or appeal. Canada interprets Article 33(2) as accommodating the situation of federal states where the implementation of the Convention will occur at more than one level of government and through a variety of mechanisms, including existing ones. Whether Canada’s substitute decision making arrangements are compatible with the CRPD has not been formally considered by the Committee for the Convention on the Rights of Persons with Disabilities who oversee the international implementation of the Convention. Some judicial consideration of the effect of the CRPD on mental health law in Canada is emerging. In Hinze v Great Blue Heron Casino (2011) the Ontario Human Rights Tribunal (at [22]) recognized that the Supreme Court of Canada had adopted a ‘social model of disability’ in Granovsky v Canada (Minister of Employment and Immigration) 2000: 34). However, in Re BS (2011) which concerned substituted decision making for a gentleman in a persistent vegetative state, the Ontario Consent and Capacity Board declined to consider the relevance of the Convention. The human rights perspectives offered by the CRPD highlight some of the issues raised in the case law. In both the Conway and Starson cases the courts commented on the difficulties associated with the lack of a speedy adjudication process. It was noted that delays in the review process may subject the person to extended periods of uncertainty, unnecessarily prolonged detention, or to the risk of deterioration in their health (Gray et al. 2002). The importance of timely review for urgent health matters as a question of human right and fundamental justice is indicated by the European Court of Human Rights

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(ECrtHR ) in Tysiac v Poland, which is discussed in more detail in Chapter 10. In that case the court interpreted the principles of justice referred to in the ECrtHR as requiring timely and effective processes of review for health decisions that affect fundamental human rights. In Tysiac the limitation of ECHR rights must be justified by, and proportionate to, a pressing social need. The approach adopted by the ECrtHR contrasts with the approach adopted by Her Honor Justice Luck in S.M.T. v Abouelnasr. In that case Her Honor accepted the argument that the procedural structure of the Ontario scheme attended to ‘fundamental principles of justice’. This approach avoided a substantive analysis based on proportionality principles that would be adopted by the European Court, which is the approach that that nevertheless appears have been envisaged by the court in Fleming v Reid. A second issue may be raised regarding the general operation of the scheme. A survey of the litigation outlined above suggests that a close consideration of the exchange of information between the person and their clinician, in terms of the process of informed consent, as was noted in Starson v Swayze, is an essential aspect of the legislative scheme.While Mental Health Review Tribunals are generally mindful of the limits of their role in reviewing clinical decisions, the law of informed consent as developed in the common law generally recognizes the importance of ‘material’ information, and the need to be free from undue influence, mistake and delusion. In Canadian law this aspect is highlighted by the reference to ‘foreseeable consequences’ in section 4(1) of the HCCA. Human rights principles encourage an interpretation of the foreseeable consequences requirement as one that carries an obligation to explore the consequences of alternative treatment options and anticipate responses to them in a planned treatment approach. The principle expressed in the CRPD adds other obligations. Article 12(3) of the CRPD requires that people with decision making impairments be offered support to exercise their legal capacity. In the absence of a full analysis of the informed consent process, and the development of processes that ensure that the principle is adhered to in practice, it may be difficult to conclude whether the legislative scheme in Ontario protects the interests of people who are dissatisfied with the treatment options offered to them by either respecting a person’s choice to refuse treatment, or to choose alternative treatment. Joaquim Zuckerberg (2010) has argued that the informed consent component of physician–patient interactions is generally driven by the need of physicians to convince patients to accept their proposed treatment.The positive interest of the physician in securing consent may encourage the physician to withhold a comprehensive account of the risks and benefits of alternative treatments, or withhold information about the uncertainties that accompany most treatment options (Rutherford et al. 2007). In health it is generally accepted that withholding of information may sometimes be necessary to protect a person from harm. CRPD and human rights principles require that the exercise of such discretion be limited as much as possible consistent with good care.

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From a human rights perspective, the conduct of the informed consent process has a direct bearing on whether Ontario law can be said to respect a person’s right to choose as intended by the legislative scheme.The identification of treatment preferences is relevant when giving weight to the person’s ‘values and beliefs and wishes’ recognized in section 21(2)(a) and (b) and also in the overall determination of the ‘best interest’ test. On the other hand, a physician’s interest in providing treatment may lead to a determination of incapacity if the determination was based on the person’s unwillingness to receive treatment, rather than on the person’s understanding of the information (Re J 2008). If this is the case it raises a further human rights concern about the rights of people who may be unable to consent to treatment, depriving them of the ‘right’ enshrined in the legislative scheme to have decisions made on their behalf by a substitute decision-maker according to the best interests test in section 21(2)(a) of the HCCA. The integrity of the Ontario scheme is also challenged by CRPD-based arguments about the obligation to provide decision making support which are closely connected to the idea of informed consent in the treatment context. In its current form, the scheme governs admission to care facilities for people who lack capacity. It operates on a binary determination of capacity or incapacity, which is governed by a person’s ability to understand and appreciate information that is relevant to the decision. In CRPD terms a determination of incapacity is invalid unless the person has been provided with the support that is necessary to enable them to exercise their legal capacity according to the principle of reasonable accommodation. Supported decision making principles are likely to increase the deference that must be given to the contemporaneous wishes of a person who is found able to demonstrate capacity when exercised with support. This shift may have little effect on the outcome of the ‘hard’ cases such as those discussed above, but will require a more careful articulation of the basis upon which preventive detention on dangerousness or public safety grounds is proposed. Nevertheless, giving effect to supported decision making principles will require a closer focus on informed consent practices, as well as shift attention toward the rationales that limit the rights of people with (supported) capacity. Furthermore, the inclusion of supported decision making approaches may herald a reconceptualization of the role of substitute decision-maker, paving the way for an earlier and more active involvement of people and supporters in decision making processes. The shift may also encourage greater use of instruments that formally document wishes, including positive preferences for treatment, in order to ensure that there is consistency of expression with respect to a person’s capable wishes. Above all, CPRD principles require that the law is evaluated in terms of the outcomes it enables, not the procedures it enshrines. These considerations may return the Ontario Courts to a consideration of the fundamental social values that underpin the law. Finally, the observation that the Ontario scheme may be regarded as encompassing positive rights was offered by Supreme Court of Canada at the

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close of its judgement in R v Conway (2010). Prior to his annual review hearing before the Ontario Review Board in 2006, Mr Conway alleged that the mental health centre where he was being detained had breached his rights under the Canadian Charter of Human Rights and Freedoms. In 2010 the Court of Appeal declined to consider the matter pending the outcome of further board hearings, and the Supreme Court of Canada granted leave to appeal (Paul Conway v Her Majesty the Queen and Person in charge of The Centre for Addiction and Mental Health and Ontario Review Board 2009).The issue before the Supreme Court in R v Conway (2010) was whether the Ontario Review Board has jurisdiction to grant remedies under section 24(1) of the Charter. In particular, Mr Conway sought an absolute discharge and, in the alternative, remedies dealing with his conditions of detention with respect to an order directing the mental health centre to provide him with access to psychotherapy and an order prohibiting the centre from housing him near a construction site.The Supreme Court dismissed the appeal, declining to find grounds for release, nor any basis for a separate charter claim. With respect to Mr Conway’s request for an order for a specific course of treatment the Supreme Court held that the authority to order such treatment lies exclusively within the mandate of provincial health authorities and was outside the powers of the Board (at [100]). Nevertheless, the Supreme Court did recognize that Charter rights may be ‘effectively vindicated through the exercise of statutory powers and processes’ (at [103]) and that, in consequence, his complaint about the location of his room could be considered by the Board. With respect to treatment, while the Supreme Court precluded the possibility that the Board could order specific courses of treatment, it recognized that the Board’s mandate extended to the consideration of other matters that may fall within the broad definition of treatment offered in the legislative schemes. Significantly, the Supreme Court also recognized that the exercise of the Board’s discretion in accordance with its statutory mandate could be exercised in accordance with ‘Charter values’ (at [103]). As to how the mandate to exercise its discretion in accordance with Charter values will influence the decision making of the Board is yet to seen. Nevertheless, in a developing human rights environment the Supreme Court has opened the possibility of a new genre of rights-based claims, including positive treatment claims that fall within the mandate of the legislative scheme which are calibrated by personal choice.

Chapter 7

Mental health advance directives in England and Wales

Human rights arguments have played a greater role in the development of the law in England and Wales. In many respects, the current promotion of mental health advance directives responds to obligations articulated by the European Court of Human Rights (ECrtHR). The approach that is adopted is one that places mental health advance directives within a relatively weak legal framework. Whether this approach is compatible with the obligations imposed by the European Convention on Human Rights and Fundamental Freedoms (1950) (ECHR) and the CRPD remain to be considered by the courts. In England and Wales the jurisprudence of the ECrtHR has been an important influence on the development of health and mental health law. That influence, and the influence of the ECHR, is amplified by the Human Rights Act 1998 (UK) which incorporates the ECHR into English law. The jurisprudence of the ECrtHR is of particular relevance to mental health care and treatment. For example, Article 3 of the ECHR prohibits ‘inhuman or degrading treatment’. As is discussed in more detail in Chapter 10, in the case of Pretty v United Kingdom (2002) the ECrtHR acknowledged that medical treatment may fall within the prohibition of Article 3: . . . treatment humiliates or debases an individual, showing lack of respect for, or diminishing, his or her human dignity or arouses feelings of fear, anguish or inferiority capable of breaking an individual’s moral or physical resistance, it may be characterised as degrading . . . the suffering which flows from naturally occurring illness, physical or mental, may be covered by Article 3, where it is, or risks being, exacerbated by treatment, whether flowing from conditions of detention, expulsion or other measures, for which the authorities can be held responsible. Pretty v UK 2002, at [52] Furthermore, the ECrtHR has acknowledged that the severely mentally ill may be particularly vulnerable to human rights abuse:

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. . . the position of inferiority and powerlessness which is typical of patients confined in psychiatric hospitals calls for increased vigilance in reviewing whether the Convention has been complied with. Herczegfalvy v Austria 1993 at [82] The process of incorporating ECHR and ECrtHR principles into mental health law has proved to be controversial. A protracted law reform process, resulting in amendment to the Mental Health Act 1983 and the enactment of the Mental Capacity Act 2005, continues to generate debate (Richardson 2011). Discussion of mental health advance directives was prominent throughout the law reform process (Szmukler 2006). In the legislative scheme that was finally enacted, mental health advance directives were recognized in the Mental Capacity Act 2005, but not in the Mental Health Act 1983 as amended, reflecting an assumption that mental health advance directives would and should be subordinate to compulsory treatment powers. The development of the common law in England and Wales and its subsequent codification in the Mental Capacity Act 2005 provides a case study of the development of mental health advance directives. As was argued in Part 2, it is useful to undertake an analysis of mental health advance directives that is contextualized by law that applies to others.The chapter argues that the incorporation of the human rights perspective into English law illuminates the conceptual barriers that inhibit a full appreciation of the mental health advance directives and the right to choose.

Developments in the common law Prior to the adoption of the Human Rights Act 1998, the development of the common law in England and Wales of most relevance to mental health advance directives was the recognition of a right of mentally impaired individuals to refuse treatment. The first authoritative recognition of a general right to refuse treatment is found in the obiter comments of Lord Keith, Lord Goff, Lord Browne-Wilkinson and Lord Mustill in the House of Lords in the case of Airedale NHS Trust v Bland (1993).The case concerned the question of whether it was lawful to cease the life-sustaining treatment of a young man in a persistent vegetative state. In the course of the judgement, their Lordships acknowledged that patients could set out their wishes to refuse treatment in advance if the refusal had sufficient clarity. Airedale NHS Trust v Bland confirmed the basic principles expressed in the earlier cases of Re T (Adult: Refusal of Medical Treatment) (1992) and Re F (Mental Patient: Sterilisation) (1990) that a person cannot be treated without their consent, except in an emergency. The principled approach that was affirmed in Airedale NHS Trust v Bland (1993) was applied by Thorpe J in the analysis of Re C (Adult: Refusal of Medical Treatment) (1994). In Re C, the court was invited to consider whether C’s refusal of treatment for a gangrenous foot was valid. C was a 68-year-old man with a diagnosis of delusional paranoid schizophrenia who was confined in a secure

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psychiatric facility while serving a seven-year term of imprisonment. C wished to receive conservative antibiotic treatment for his gangrenous foot. His medical advisers wished to amputate the foot. The hospital initiated court proceedings on the basis that C lacked competence to refuse treatment. In considering whether C could refuse treatment the court adopted the principles expressed in Re T (Adult: Refusal of Medical Treatment) (1992). Re T (1992) involved a refusal of blood products in circumstances where there was a concern that the decision was affected by undue influence. In that case the court of Appeal reiterated the rule that every adult has the right to refuse medical treatment and that the presumption of capacity may be overridden if the patient’s capacity is reduced by temporary factors such as confusion, unconsciousness, fatigue or shock. Re T concerned the validity of a refusal of blood transfusion by a young pregnant woman who had given birth prematurely following a car accident in circumstances where there was uncertainty about the independence of the decision and the nature of her religious beliefs. When her condition seriously deteriorated, her father and boyfriend sought a court order to allow a transfusion to be administered. In Re C, Thorpe J also acknowledged that individuals with reduced capacity may be able to make valid decisions. The question in this case was whether the patient’s capacity was reduced below the level necessary to make a particular decision at that relevant time.The issue was whether C’s capacity was so reduced by his chronic mental illness that he did not sufficiently understand the nature, purpose and effects of the proposed amputation. Thorpe J adopted an analysis of the decision making process that identified the three elements of the process as comprehending and retaining treatment information, believing it, and weighing it in the balance to arrive at choice. His Honour was satisfied that C understood and retained the relevant treatment information, believed it ‘in his own way’ and had arrived at a clear choice. In dealing with the evidence that C lacked capacity. His Honour rejected the conclusion that there was a nexus between the C’s mental illness and his views about the proposed medical intervention. His Honour appears to have been persuaded by evidence that it was common for individuals to be reluctant to accept amputation, and that it was not considered appropriate to force amputation on individuals who are reluctant to accept the treatment. Thorpe J was able to construe C’s decision as commensurate with the range of responses that might be expected from patients who did not have a mental illness. Had C been found to lack capacity, the legal analysis would have proceeded on a different footing. That eventuality is discussed in more detail below. A determination by the court that a young woman with a mental disability was competent underpinned the decision in Re JT (Adult: Refusal of Medical Treatment) (1998). JT was a 24-year-old woman with a mental disability, learning difficulties and extremely severe behaviour disturbances that required regular dialysis.When she refused dialysis, stating that she wished to die, the NHS Trust, responsible for her care, sought a court order. Applying the test in Re C, the

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court accepted the medical evidence that JT was competent, ordering that her wishes be respected. Cases dealing with the refusal of general medical treatment by individuals with mental health conditions have found that individuals lack capacity when the decision to refuse treatment is directly affected by the mental illness. For example in the case of Re L (Patient: Non-Consensual Treatment) (1997), L had consented to an emergency caesarean section but withheld consent to the anaesthetic due to a needle phobia. Kirkwood J held that L lacked capacity to refuse treatment as she suffered from an ‘involuntary compulsion that disabled [her] from weighing treatment information in the balance to make a choice’ (Re L 1997 at [4]). A similar fact situation arose in Re MB (1997). In that case, consent to perform the caesarean was obtained from Hollis J, but MB appealed the ruling. In the Court of Appeal, Dame Butler-Sloss held that MB lacked the capacity to make the decision. Her Honour set out the relevant principles as they relate to mental functioning and decision making. This analysis warrants repetition. 1. Every person is presumed to have the capacity to consent to or to refuse medical treatment unless and until that presumption is rebutted. 2. A competent woman, who has the capacity to decide, may, for religious reasons, other reasons, for rational or irrational reasons or for no reason at all, choose not to have medical intervention, even though the consequence may be the death or serious handicap of the child she bears, or her own death. In that event the courts do not have the jurisdiction to declare medical intervention lawful and the question of her own best interests, objectively considered, does not arise. 3. Irrationality is here used to connote a decision which is so outrageous in its defiance of logic, or of accepted moral standards, that no sensible person, who had applied his mind to the question to be decided, could have arrived at it. Although it might be thought that irrationality sits uneasily with competence to decide, panic, indecisiveness and irrationality, in themselves, do not as such amount to incompetence, but they may be symptoms or evidence of incompetence. The graver the consequences of the decision, the commensurately greater the level of competence is required to take the decision. Re MB at [543] A person lacks capacity if some impairment or disturbance of mental functioning renders the person unable to make a decision whether to consent to, or to refuse treatment. The inability to make a decision will occur when the patient is unable to comprehend and retain the information

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which is material to the decision, especially as to the likely consequences of having, or not having, the treatment in question; or when the patient is unable to use the information and weigh it in the balance as part of the process of arriving at the decision. If, as Thorpe J observed in Re C, a compulsive disorder or phobia from which the patient suffers stifles belief in the information presented to her, then the decision may not be a true one. The ‘temporary factors’ mentioned by Lord Donaldson MR in Re T such as confusion, shock, fatigue, pain or drugs may completely erode capacity but those concerned must be satisfied that such factors are operating to such a degree that the ability to decide is absent. Careful scrutiny of the evidence is necessary because fear of an operation may be a rational reason for refusal to undergo it. Fear may also, however, paralyze the will and thus destroy the capacity to make a decision. Re MB at [543–4] This passage provides a summary of the relevant principles. Similarly, a person with an ongoing mental disorder may lack capacity with respect to a particular type of decision. For example, in the NHS Trust v T (Adult Patient: Refusal of Medical Treatment) (2004) Charles J in the Family Division of the High Court found T did not have capacity to make the advance directive because her thinking was affected by a misconception of reality, rendering her incapable of weighing information to make a decision. T was diagnosed with a personality disorder. She dangerously self-harmed by cutting and blood-letting prompted by a belief that her blood was evil. She signed an advance refusal to blood transfusions. His Honour accepted the psychiatric evidence that T’s ‘disordered thinking’ was continuous. His Honour found that she lacked capacity to refuse treatment and to make an advance directive. The clear distinction between those who are able to consent to medical treatment and those who are not that is outlined in these cases illustrates the crystallization of capacity and consent principles in the English common law. Nevertheless, the English courts have been equivocal in their willingness to grant individuals with capacity an equal role in the medical encounter. The equivocation is demonstrated in the evolution of the ‘Bolam’ principle which is discussed below. The development of the Bolam principle, coupled with the case law outlined above, provides the broader context in which legal debate has occurred about mental health advance directives and how to represent them in law. Since the 1950s, the provision of medical treatment was governed by the principles set out in Bolam v Friern Hospital Management Committee (1957).The ‘Bolam test’, as it has become known, is widely regarded as the legal basis for medical paternalism in English law (De Cruz 2001). It establishes a test for the standard of medical practice that is required by law. The test is satisfied if it can be shown that a doctor had acted in accordance with a responsible body of medical opinion. Lord Scarman stated the Bolam rule in Sidaway v

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Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital (1985) (Sidaway) as: . . . a doctor is not negligent if he acts in accordance with a practice accepted at the time as proper by a responsible body of medical opinion even though other doctors adopt a different practice. In short the law imposes a duty of care, but the standard of care is a matter of medical judgement. Sidaway 1985 at [649] In Sidaway the court considered the relationship between the Bolam rule and principle of ‘informed consent’. Sidaway determined that the law of consent did not require an elaborate explanation of remote side effects (per Lord Diplock at [893]).This position contrast with the elaboration of full disclosure principles in Canterbury v Spence (1972) in the United States and the later case of Rogers v Whitaker (1992) in Australia. In dissent, Lord Scarman held that the Bolam test did not apply to the question of informed consent. His Lordship found it ‘disturbing’ that the Bolam rule left the standard of care to be determined by medical judgement (at [881–2]). A series of cases during the 1990s suggested that that the rules were shifting (Whiteman 2010). In addition, the adoption of the Human Rights Act 1998 encouraged the courts to invest the common law with the human rights based principles and rationales. This was noticeable, for example, in the decision of Chester v Afshar (2005), which concerned a failure to disclose risks of paralysis associated with spinal injury. In recognizing that the principle of autonomy, rather than the principle of welfare, guided English law, Lord Steyn cited Ronald Dworkin’s work Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom (Dworkin 1993): The most plausible [account] emphasizes the integrity rather than the welfare of the choosing agent . . . the value of autonomy, recognizing an individual right of autonomy makes self-creation possible. (Lord Steyn at [18]) Lord Hope expressed the principle of autonomy as one of choice: The choice between [these] alternatives was for her to take, and for her alone. The function of the law is to protect the patient’s right to choose. Chester v Afshar 2005 at [56] In the decision of Birch v University College London Hospital NHS Foundation Trust (2008) the relationship between autonomy, full disclosure and informed consent was recognized in English law. In that case, Ms Birch was informed about the risks of a neurological procedure, but was not informed about the comparative risks of an alternative procedure.The court held that in the absence

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of full comparative disclosure of information to the patient it cannot be said that the patient had given informed consent (Grubb et al. 2010: 468). Recognition of the principle of autonomy and self-determination as fundamental values in English law raised the question of positive entitlement to health care. This question has relevance for the scope of advance directives and whether or not they may contain positive requests for treatment. Such claims have proved unsuccessful, although the analysis of English law offered by the ECrtHR in Glass v UK (2004), which is discussed in Chapter 10, adopts a more nuanced approach than has been entertained by the domestic courts. The issue of entitlement to future treatment as a question of law was raised by Mr Burke, who suffered from a congenital brain disease that would ultimately require him to receive artificial nutrition and hydration. Mr Burke challenged the General Medical Council guidelines that permit nutrition and hydration to be withdrawn on clinical grounds. His preference for continuous treatment was documented in an advance directive. Mr Burke argued that Articles 2, 3, 8 and 14 of the European Convention on Human Rights and Fundamental Freedoms (ECHR) supported his right to remain alive. Considering the application in R (on the application of Burke) v General Medical Council (2005) Munby J provided a detailed analysis of the relevant ethics, common law, and convention law, finding that some aspects of the guidance note were invalid. His Honour took the view that: the personal autonomy which is protected by Article 8 embraces such matters as how one chooses to pass the closing days and moments of one’s life, and how one manages one’s own death. R (on the application of Burke) v General Medical Council 2005 at [62] The Court of Appeal, in R (on the application of Oliver Leslie Burke) v The General Medical Council (2006) (Burke) took a different view. It found that the guidance note was valid, reflecting the correct position in the law which denies a patient the right to choose. According to the Court of Appeal English patients have merely the power to refuse treatments and express certain preferences: Where a doctor offered a patient more than one possible treatment but with a particular recommendation for one of them, the patient’s right to refuse that one appeared to give the patient the positive option to choose an alternative treatment. However that choice was nothing more than a reflection of the doctor’s duty to provide a treatment considered to be in the best interests of the patient . . . and the right to self-determination do not entitle the patient to insist on receiving a particular medical treatment . . . Insofar as a doctor has a legal obligation to provide treatment this cannot be founded simply upon the fact that the patient demands it. R (on the application of Oliver Leslie Burke) v The General Medical Council 2006 at [31]

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As there is no right to insist on a specific treatment, an advance directive to this effect would appear to be invalid. However, the Court of Appeal qualifies this position. Ultimately, however, the patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient’s clinical needs. (2006 at [55]). The decision in Burke has been interpreted as a rejection of the right to choose in English law (Whiteman 2011). It is also possible to interpret the judgement as an important acknowledgement that the law is informed by principles of autonomy and self-determination. Between the expression of a patient’s preferences on one side, and the demand for treatment that is regarded by physicians as adverse on the other, there is likely to be a range of treatments which may be mutually acceptable to the patient and the physician. It is compatible with the judgement in Burke to conclude that decisions with respect to this category of treatments be governed by the principles of autonomy and self-determination as has been recognized elsewhere in the English case law. Furthermore, in the case of Pretty v United Kingdom the contribution of human rights to the adjudication of questions that involve the limitation of a choice of treatment lies in the rationale and principles that are brought to the analysis. If treatment choice is appropriately denied on resource allocation grounds, as is implied by the Court of Appeal in Burke, that policy position and the basis for it should be explicit. A human rights approach requires transparency whenever human rights are limited at the behest of the state. With respect to the application of the new principles to individuals with disability, the decision Re B (Adult: Refusal of Medical Treatment) (2002) makes it clear that English law attributes an equal right to self-determination to individuals with disability who retain capacity. This position has particular relevance for the validity of advance directives made by people with disabilities including people with mental illness. If a non-discriminatory approach to the determination of capacity is adopted, broad application of the principle may be expected. In Re B the court upheld the validity of an advance refusal of treatment for a progressive debilitating disorder that would result in Mrs B’s death. A central issue in the case was whether Mrs B had capacity to refuse treatment. Mrs B’s physicians argued that her desire to cease treatment indicated a loss of capacity, in which case best interests principles and the prohibition against ‘euthanasia’ should prevail. Dame Butler-Sloss summarizes the application of the principles: One must allow for those as severely disabled as Ms B, for some of whom life in that may be worse than death. It is a question of values . . . we have to try inadequately to put ourselves into the position of the gravely disabled person and respect the subjective character of experience. Unless the

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gravity of the illness has affected the patient’s capacity, a seriously disabled patient has the same rights as the fit person to respect for personal autonomy. There is a serious danger, exemplified in this case, of a benevolent paternalism which does not embrace recognition of personal autonomy of the severely disabled patient. Re B (Adult: Refusal of Medical Treatment) 2002 at [94] As this comment indicates, in parallel with the recognition of autonomy, the principle of best interests is retained for individuals who lack capacity, but has evolved in a manner that is commensurate with human rights perspectives. In Re F (Mental Patient: Sterilisation) [1990] the House of Lords held that the sterilization of an individual with severe mental disability was lawful if it was in their best interests as determined by the Bolam test. It has since been established that a ‘best interest’ test is a separate consideration that must be satisfied in addition to the Bolam test (Grubb et al. 2010; Re A (Male Sterilization) [2000] at [210] per Dame Butler-Sloss). In addition, the content of the best interest test has expanded beyond a narrow interpretation of medical best interests. In Re MB [1997] Dame Butler-Sloss noted that the meaning of best interests was not limited to medical best interest. In Re S (Adult Patient: Sterilisation Patient’s Best Interest) [2000] Her Honour expanded this idea to describe best interest as ‘A judicial decision, that will incorporate broader ethical, social, moral and welfare considerations’ (at [27]). In this passage Dame Butler-Sloss positions best interests as a determination that must take account of the full social context in which medical decision are made. The best interests test has continued to develop following the enactment of the Human Rights Act 1998 (UK) and Mental Capacity Act 2005 (MCA).The MCA provides a statutory framework for best interests. In section 1, which sets out the principles that guide the Act, section 1(5) requires that an act done or decision made, under the Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests. Sections 2 and 3 refer to the determination of incapacity. Section 4 refers to best interests. Section 4 imposes procedural and content requirements with respect to the determination of best interests. Section 4(1) frames the section with an obligation to not base the determination merely on age, appearance, condition or behaviour. Section 4(2) requires all relevant circumstances to be considered, including whether the person will have capacity in the future. Section 4(4) requires that the person is permitted and encouraged to participate in decisions. Section 4(5) prohibits action that is intended to bring about death. Section 4(6) requires the decision maker to consider the person’s past and present wishes and feelings, other factors that [the person] would be likely to consider if he were able to do so. Section 4(7) requires the decision maker to take into account the views of nominated persons, carers, and other appointed persons. These provisions require that determinations of best interest are made in a broadly collaborative environment. The MCA is silent on the weight that must be given to the

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different views, and silent on whether the views and wishes of the person may be considered determinative of those person’s best interests. It is also silent on the question of the broader considerations that the courts have determined are relevant to the question of best interests. How the courts will reconcile the common law and statutory approach to best interests in the light of the Human Rights Act 1998 and the obligations imposed by the jurisprudence of the ECrtHR and international human rights law remains to be seen. An indication is provided by Munby J in Re MM (an adult) [2007]. Re MM concerned the question of whether a woman with mental illness, a moderate learning disability and poor cognitive function in supervised care in the community should be permitted to continue a long-standing sexual relationship with a person whom the care authority considered to be abusive. With respect to the question of best interests, Munby J adapted comments of Dame Butler-Sloss in Re S to hold that MM’s welfare is the paramount consideration . . . [it] involves a welfare appraisal in the widest sense, taking into account, where appropriate, a wide range of ethical, social, moral and emotional, welfare considerations. Re MM (an adult) [2007] at [99] In addition, Munby J held that the best interests must also be compatible with the ECHR and in particular with Article 8 which protects the right to private and family life which includes the right to sexual relations and any right to ‘personal autonomy’. Respect for family life imposes duties on the state to both abstain from inappropriate interference but also positive duties such as preventing one person interfering with another’s family life or to prevent violation of other rights. In Munby J’s view the obligation required the authorities to ensure that . . . in rescuing a vulnerable adult from one type of abuse it does not expose her to the risk of treatment at the hands of the state which, however well intentioned, can itself end up being abusive of her dignity, her happiness and indeed of her human rights. Re MM (an adult) [2007] at [118] For Munby J, the notion of best interests refers to the mentally incapacitated person’s welfare in the broadest sense, taking into account the person’s wishes and feelings and a sensible risk assessment. Furthermore its determination should be compatible with the ECHR, including Article 8 which protects the right to private life. Applying this analysis to the question of mental health advance directives points to the conclusion that wherever treatment is provided to an individual who lacks capacity on a best interests basis, consideration must be given to the content of a mental health advance directive because the wishes and aspirations of the person are relevant to the best interests determination.

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If the person has capacity with respect to a particular decision, their preference should be determinative unless other considerations apply. If this analysis is correct, the English law adopts a similar approach to decision making for people who lack capacity as applies in the United States.

Mental health advance directives in legislation The Mental Capacity Act 2005 provides a legal framework under which decisions may be made for individuals who lack capacity. The MCA is the product of a law reform process that commenced in 1991 with a series of consultation papers (Grounds 2001). As noted above, the MCA requires decisions to be made on a ‘best interest’ basis, with consideration of the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity (s4(6)(a)). The reference to a written statement in section 4 appears to refer to any written statement and is likely to include statements that are made pursuant to the specific provisions in sections 24 to 26 of the MCA that provide for ‘advance decision to refuse treatment’. The interaction between these sections is unclear. A possible construction of the legislative scheme is that the advance refusal provision is subject to the best interest requirement, despite giving the impression that an advance refusal will be respected in some circumstances. While informal advance statements may be made about a range of matters, the advance decision provisions in the MCA are confined to the refusal of specific treatment. Section 24 enables a person who is over the age of 18 and has capacity, to refuse specified treatment in advance. The advance decision must be in writing, signed by the person and witnessed in the person’s presence (section 26). The person may alter or withdraw the refusal at any time. The advance decision must be valid, specific and applicable to the circumstances (section 25). It is not valid if decision making power with respect to treatment has been conferred on another person (section 25(2)(b)), the person who makes the document does not have capacity (section 25(3)), or there are reasonable grounds for considering that the decision does not apply (section 25(4)). A court may make a declaration about the validity and applicability of an advance decision (section 26(4)). A person who follows an advance decision is not liable if the advance decision is valid and applicable (section 26(2) and (3)). An advance decision does not prevent life-saving treatment being provided (section 26(5)(a)), nor prevent the provision of treatment that the clinician reasonably believes will to be necessary to prevent a serious deterioration in the person’s condition, while a decision as respects any relevant issue is sought from the court (section 26(5)(b)). It is not clear whether the advance decision provisions are being utilized by service users, or scrutinized by the courts. Prior to the passage of the MCA, mental health services and consumer organizations in the United Kingdom were already providing service users

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with information about common law advance directives. For example, the Derbyshire Mental Health Services NHS Trust has produced advance directive guidelines for service users in 2004, and the Mersey Care NHS Trust has introduced the use of advance statements for its mental health service users. Several non-government organizations, such as the Mental Health Foundation, Mind and Rethink, also provided information. The Healthcare Commission reported in 2006 that 30 per cent of patients across all health sectors had already developed a common law advance directive (HCC 2006: 48).Academic research was also engaged with consideration of the clinical benefits of mental health advance directives (Papageorgiou et al. 2004), professional attitudes towards them (Atkinson et al. 2004), and appropriate method of implementation (Thomas 2003). In short, mental health advance directives were already recognized in the common law and were being incorporated into clinical practice prior to the enactment of the MCA.The new issue raised by the MCA is its interaction with the MHA (Richardson 2007).

Advance refusals and mental health care In commentary on the interaction between the two Acts both Jones (2008) and Dimond (2008) conclude that provisions of the MCA, particularly the provisions that relate to advance refusal, do not apply when treatment is authorized under Part IV of the MHA, except with respect to ECT treatment (Jones 2008: 289). This analysis is consistent with the view of the House of Lords that the MHA scheme is designed to provide a legal framework covering the use of compulsory powers to require people with mental disorder to comply with medical treatment for their disorder without their consent. House of Lords 2003: 60 at [214] The conclusion that advance refusals do not ‘trump’ the relevant parts of the MHA, however, leaves room for their operation in conjunction with other parts of the MHA. Advance refusals may be made by • • • • •

people with a mental disorder that is not of a nature or severity that warrants detention under Part IV; people who are detained under the MHA for short periods; people (whether or not they are detained) who refuse electroconvulsive therapy (ECT) or other regulated treatment; adult community patients who have not been recalled to hospital; and those people who wish to refuse general medical treatment.

Furthermore, any expression of a person’s views or wishes, including those wishes that are expressed in a written statement, remains relevant to the

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treatment decision, including when treatment is provided pursuant to the authority provided in Part IV. The above analysis is consistent with the guidance provided in the MHA Code of Practice (Department of Health 2008). Clauses 17.8 and 17.9 of the Code state: Even where clinicians may lawfully treat a patient compulsorily under the Mental Health Act, they should, where practicable, try to comply with the patient’s wishes as expressed in the advance decision. They should, for example, consider whether it is possible to use a different form of treatment not refused by the advance decision. Department of Health 2008: 142 Except where the Mental Health Act means that they need not, clinicians must follow all other advance decisions made by their patients which they are satisfied are valid and applicable, even if the patients concerned are detained under the Act or are on SCT [supervised community treatment]. By definition, this includes all valid and applicable advance decisions made by detained and SCT patients to refuse treatment which is not for mental disorder. Department of Health 2008: 142 With respect to ‘advance statements of wishes and feelings’ the MHA Code requires professionals to: ask patients to set out their wishes in advance as a useful therapeutic tool and to improve trust between patient and clinician; record the patient’s preferences in the professional’s notes along with the professional’s opinion as to whether the patient has capacity, and where permitted by the patient those wishes and feelings should be drawn to the attention of other professionals, and included in care plans and documentation; consider whether the patient has changed their mind; and record their reasons for the decision if a professional makes a decision that is contrary to the patient’s advance statement (2008: 143–4). This MHA Code is reinforced by the series of clinical guidelines published by the newly established National Institute for Health and Clinical Excellence (NICE). Clinical guideline (CG) 136 on ‘Service User Experience in Adult Mental Health: Improving the Experience of Care for People Using Adult NHS Mental Health Services’ (National Collaborating Centre for Mental Health, commissioned by NICE 2011b), CG120 ‘Psychosis with Coexisting Substance Misuse: Assessment and Management in Adults and Young People’ (National Collaborating Centre for Mental Health, commissioned by NICE 2011a), and CG82 ‘Schizophrenia: Core Interventions in the Treatment and Management of Schizophrenia in Adults in Primary and Secondary Care (Updated Edition)’ (National Collaborating Centre for Mental Health, commissioned by NICE 2009) adopt a consistent approach to advance decisions and

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advance statements as a principle of care. For example, in CG120 professional persons are required to provide full information, and apply MCA principles whether or not people are being detained or treated under the Mental Health Act (1983; amended 1995 and 2007). Professional persons are required to Develop advance decisions and advance statements in collaboration with adults with psychosis and coexisting substance misuse, especially if their condition is severe and they have been treated under the Mental Health Act (1983; amended 1995 and 2007). Record the decisions and statements and include copies in the care plan in primary and secondary care. Give copies to the person, their care coordinator, and their family, carer or a significant other if the person agrees. and take advance decisions and advance statements into account in accordance with the Mental Capacity Act (2005). Although advance decisions and advance statements can be overridden using the Mental Health Act (1983; amended 1995 and 2007), try to honour them wherever possible. (National Collaborating Centre for Mental Health, commissioned by NICE 2011a: 100–1 at [4.1.8.17–18]) The NICE guidelines support the development of a strong practice role for mental health advance directives, either as statements or as decisions, with respect to treatment decisions. While the materials acknowledge the broad definition of treatment that appears in the legislative scheme, neither the legislation, the MHA Code or the NICE guidelines appear to contemplate the effect of advance decisions when the decision relates to matters that fall outside traditional clinical matters relating to assessment referral and treatment. This stands in contrast to the broad interpretation of best interests that is being developed in the courts. If a limited approach in advance refusals is adopted in practice, questions may be raised about the interpretation of the MCA, the operation of its different parts, and the effect of the overarching requirement of best interests. As the discussion in the first part of this book establishes, the human rights capabilities of mental health advance directives extend well beyond the question of clinical standards. By retaining a focus on the medical context, legislation and practice in England and Wales remains out of step with developing human rights standards.

Chapter 8

Advance ‘statements’ in Scotland

The review of the Mental Health Act 1984 (Scotland), which commenced in 1996, aimed to bring Scottish law into alignment with the ECHR. The inclusion of mental health advance directives in the Mental Health (Care and Treatment) Act 2003 recognizes the significance of mental health advance directives for human rights based mental health laws. Enactment of the Mental Health (Care and Treatment) Act 2003 followed the recommendations of the ‘Millan Report’ or New Directions: Report on the Review of the Mental Health (Scotland) Act 1984 (Millan 2001). The Millan Report recommended that new legislation include provision for mental health advance directives in the form of ‘advance statement’ provisions. This approach acknowledged that common law mental health advance directives were ‘trumped’ by mental health legislation. The recommendations for mental health advance statements complemented other recommendations were intended to create a legislative scheme that supported the involvement of people with mental health conditions in the decisions about their treatment and care. This chapter examines the Scottish approach to advance statements in the overall context of the Mental Health (Care and Treatment) Act 2003 and the issues surrounding implementation of the new laws in Scotland. Like England and Wales, Scotland has an obligation to adopt laws that are compatible with human rights. This obligation arises from its regional and international associations. Section 29 of the Scotland Act 1998 (UK) requires the Scottish parliament to adopt legislation that is compatible with the ECHR. Scotland is party to the other European conventions and standards such as the European Convention on Bioethics, Recommendation (2004) of the Committee of Ministers to Member States of the Council of Europe Concerning the Protection of Human Rights and Dignity of Persons with Mental Disorder (2004), and the Standards of the European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (2011). Scotland is also a party to the major United Nations conventions, including the CRPD. As discussed in Part 2, a clear view of what is required of national legislatures to meet these obligations is yet to emerge.

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Comprehensive mental health law reform In 1996 an expert working group was established to develop a new Mental Health Act that could guide the development of comprehensive mental health services in Scotland. Chaired by the Right Honourable Bruce Millan, the working group was known as the Millan Committee. The Millan Report was released in 2001. The Millan Report emphasizes the close connection between human rights and bioethics. It links ten human rights principles with the bioethical principles of justice, autonomy, beneficence and nonmaleficence, drawing strong parallels between the human rights principles of justice, non-discrimination, equality, respect for diversity and reciprocity and the obligation on the health and social care authorities to provide safe and appropriate services, including ongoing care following discharge from compulsion (Millan 2001: 19–21). According to the report, the principle of justice is reflected in the obligation to provide care and treatment. The principle of autonomy is reflected in the obligation to provide informal care and to promote participation of the person and respect for carers. The principles of beneficence and non-maleficence are honoured by the obligation to provide care that is the least invasive or restricting, is beneficial, takes account of the safety of others and attends to the welfare of children. The conceptualization of the connection between bioethical and human rights principles reflected an overarching concern to adopt a ‘recovery’ perspective. The emphasis upon recovery in the Millan Report reflects the influence of the consumer groups that became actively engaged in the consultation process, including the High End Users Group (HUG), the National Schizophrenic Association (Scotland) and the Scottish Independent Advocacy Alliance. The commitment to reorient the mental health system in Scotland to a recovery perspective is reflected in efforts to develop recovery perspectives in the professional practice of mental health nurses (NHS Scotland 2006), social workers (Scottish Executive 2006) and psychiatrists (NIMH and RCP 2005). In considering options for law reform, the Millan Committee accepted the analysis put forward in 1995 by the Scottish Law Commission (SLC) that advance directives are a recognized part of Scottish law (Millan 2001: 195). In the absence of relevant case law in Scotland, the SLC cited a publication by the British Medical Association, Advance Statements about Medical Treatment (1996). The law was summarized as follows: Competent, informed adults have an established legal right to refuse medical procedures in advance. An unambiguous and informed advance refusal is as valid as a contemporaneous decision. Health professionals are bound to comply when the refusal specifically addresses the situation which has arisen. Millan 2001: 194

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Applying this reasoning, the Millan Committee concluded that psychiatric advance statements were also valid, and should be followed when they are invoked independently of mental health legislation. However, the Committee concluded that because advance instructions are always superseded by the operation of mental health legislation, statutory recognition of them is necessary to permit any operation of psychiatric advance directives whenever treatment is provided pursuant to mental health legislation (Millan 2001: 195). The policy basis for the recommendation was that, in the Committee’s view, mental health advance directives would make a positive contribution to the care and treatment of people with mental health conditions. Mental health advance instructions would ensure that treatment was appropriate, that treatment accorded with the ‘patient’s’ preferred treatment and care ‘package’ as much as possible, and that future care and treatment could be planned in a way that included information about informed choices and informed refusals. In this way, advance instructions would promote service user autonomy, redress power imbalances, reduce uncertainty and promote collaboration. Ultimately they would reduce the need for compulsion by helping to show whether a person’s wishes have been affected by deterioration in mental state, and ensuring that a person’s individuality was not misinterpreted as an effect of the mental illness (Millan 2001: 193–4). The Millan Committee reported that there was wide support for advance directives in Scotland provided they complemented compulsory powers. With respect to enforceability the Committee commented Few people supported their being binding in all circumstances. There are considerable concerns about how competence to make an advance statement should be assessed, and when the advance statements should be invoked. Millan 2001: 164 In light of these concerns the Committee recommended that the new statute provide for formally executed documents, or ‘statements’ that would be signed and witnessed (Millan 2001: 197). It also recommended that the legislation should require all decision makers to have regard to advance statements, to give them due weight, to record and report any decision not to implement the terms of an advance statement and the reasons for doing so (Millan 2001: 199).The Committee did not envisage that the statements would be binding in all circumstances. Furthermore, the Committee recommended that professional staff be protected from legal liability, either for following or failing to follow an advance statement, whenever they acted in good faith and with reasonable care. Millan 2001: 200

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The Mental Health (Care and Treatment) Act 2003 The Millan Committee’s recommendations were adopted in new mental health legislation which sought to privilege patient choice in the mental health setting. The Mental Health (Care and Treatment) Act 2003 (the Act) was passed by the Scottish Parliament on 20 March 2003 and commenced in October 2005. The guiding principles of the Act require a person who is discharging functions under the Act to have regard to the past and present wishes and feelings of the patient, the views of the patient’s ‘named’ person, carers, guardian and welfare attorneys. The person must also consider: • • • • •

•

the importance of the patient participating as fully as possible in all decisions; the importance of providing such information and support to the patient as is necessary to enable the patient to participate; the range of options available; the importance of providing the maximum benefit to the patient; the need to ensure that, unless it can be shown that it is justified in the circumstances, the patient is not treated in a way that is less favourable than the way in which a person who is not a patient might be treated in a comparable situation; and the patient’s abilities, background and characteristics, including the patient’s age, sex, sexual orientation, religious persuasion, racial origin, cultural and linguistic background and membership of any ethnic group.

These elements reflect an embedded recognition of the principle of choice as a collaborative and deliberative exercise.They also indicate that personal choice in Scotland is accepted as a principle that should guide decisions in matters that may be relevant to the care, treatment and recovery of the person. The Millan Committee’s recommendations regarding advance statements were accepted without apparent controversy. The provisions are contained in sections 275 and 276 of the Act. An advance statement is defined in the Act as a statement that specifies: • •

the ways the person making it wishes to be treated for mental disorder and the ways the person wishes not to be treated.

This means the choices recognized by the advance statement may contain positive demands. Advance statements become relevant when the decision making abilities of a person with a mental disorder become significantly impaired. The Act requires that the advance statement must be in writing, signed by the person and witnessed to the effect that the person has the capacity to understand and intend the wishes specified in it. A withdrawal of an advance statement must be

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similarly executed. People and bodies who have decision making powers under the Act, such as Mental Health Review Tribunals, treating clinicians and medical officers, must ‘have regard to the wishes specified in an advance statement’, provided that the statement is valid, applies to the situation and has not been withdrawn. If the Tribunal, treating medical practitioners or anyone who has functions under that Act authorizes measures that conflict with the wishes specified in the statement, they are required to provide a statement in writing that records the circumstances and reasons why the authorization was, or was not, made. A copy of the statement must be placed in the person’s file and provided to the person, their named person, their welfare attorney, their guardian and to the Mental Welfare Commission (sections 275–276).The Mental Welfare Commission for Scotland is an independent statutory authority that safeguards the rights and welfare of everyone with a mental illness, learning disability or other mental disorder (Atkinson 2007: 205). The advance statement provisions complement other measures in the legislation that secure important entitlements for people with mental health conditions. The Act requires that written information be provided to all patients about: • • • • • • •

the reasons for their detention; the effect and consequences of relevant orders; the powers that the patient’s responsible Medical Officer and the Tribunal have in relation to revoking orders; the patient’s right to make an application, or appeal, to the Tribunal; the powers that are exercisable by the Tribunal; how the patient may exercise any such right; and how the patient may obtain legal assistance in respect of any such right (section 260).

Under section 261, assistance must be provided if the patient has difficulty in communicating or generally communicates in a language other than English. The Act requires that treatment plans be made separately and in addition to advance statements. The Act also recognizes the need for decision making support, with section 259 establishing the right of every person with a mental disorder to have access to an independent advocate. In this case the onus is on the service and the Health Board to ensure the patient is assigned an independent advocate. In addition, the legislation also gives special recognition and status to a person who is formally nominated by the person with mental illness. Section 255 of the Act imposes an obligation on health officers to ascertain the identity of the relevant person and subsequent sections set out the responsibilities of the named person under the Act. If there is no named person the Act recognizes the primary carer or the ‘nearest relative’ as the named person. Furthermore, any person who has an interest in the welfare of the patient may apply to the

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Tribunal for an order requiring ‘the managers of the hospital in which the patient is being unlawfully detained to cease their detention’. These powers are intended to meet the requirement imposed by the ECrtHR in its decision in H.L. v the United Kingdom (2004). In H.L. v United Kingdom the ECrtHR considered the lawfulness of mental health detention in England and Wales on necessity grounds, requiring the introduction of oversight for ‘voluntary’ admissions (Cairns 2009). The advance statements provisions must be considered in light of the compulsory treatment provisions in the Act. Part 16 of the Act appears to exclude the operation of advance statements. In particular, sections 235 and 236 of the Act refer to the circumstances in which ‘surgical treatment that destroys brain tissue’ can lawfully be provided to people who are incapable of consenting. For this to occur, the responsible medical officer must first obtain a court order. He or she must certify in writing that the person is incapable of consent and does not object; that the treatment will alleviate or prevent deterioration of the person’s condition and that it is in the person’s best interests to receive the treatment. Two persons appointed by the Commission must confirm that the person is incapable and does not object to the treatment. There is no reference to advance statements in these sections.This invites two possible constructions. Either the operation of an advance statement is excluded, or the reference to the person’s objection includes a prior objection expressed in an advance statement. Sections 235 and 236 require that, before proceeding with the treatment of a person who is incapable of consenting, an enquiry must be made as to whether the person objects to the surgery. If the person had made a valid advance instruction opposing such surgery, then the responsible medical officer must certify that the person so objects, and the procedure should not proceed. Furthermore, consideration of the Act as a whole suggests that the legislature intended advance statements to operate in relation to section 235. This conclusion is compatible with an interpretation of the Act that would arise from the application of interpretive principles found in the Human Rights Act (UK), the common law and with reference to the Scottish Act 1988. Similarly, section 239 refers to the circumstances in which ECT may be authorized for people who are unable to consent to that treatment. In contradistinction to section 235, the words in section 239 refer to a person who ‘is incapable of understanding the nature, purpose and likely effects of the treatment’. This is a higher threshold for capacity than applies elsewhere in the Act and is similar, but not identical, to the common law definition of capacity to consent in England and Wales that is thought to apply in Scotland. This section suggests that a person with capacity, as opposed to impaired decision making, may refuse ECT. However, the section provides that if a patient resists or objects, the medical officer must certify that the provision of the treatment is necessary in accordance with section 239(1)(a), (b) and (c). There is no reference to advance statements in this section. That absence, coupled with the explicit override of resistance or objection, suggests that both contemporaneous

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and advance instructions have no operation in relation to section 239, unless recognition of them was actively ‘read into’ the provision using the interpretive principles cited in the previous paragraph. Section 241 authorizes specified medical treatments of people who do not consent to treatment, or who are incapable of consenting to treatment. Such treatments include hormone therapy, medication, artificial nutrition and any treatment listed in the Regulations (section 241(a)) provided that the treatment is otherwise authorized by the Act and is in the best interests of the person. The designated medical practitioner must have regard to the reasons that the treatment is refused. The designated medical practitioner who is of the opinion that the person should be given the treatment must certify to that effect and provide reasons. This section does not appear to contemplate the operation of advance statements. Section 242 is the only section dealing with treatment that specifically mentions advance statements. This section refers to medical treatment ‘other than’ the medical treatment mentioned in the preceding section. The section provides that if the patient does not consent or is unable to consent the medical officer should take account of the reasons for not consenting, any views expressed by the patient or by the patient’s named person, the content of an advance statement made by the patient and the likelihood of the treatment’s alleviating, or preventing a deterioration in, the patient’s condition. If the responsible medical officer determines that it is in the patient’s best interests, the treatment may be given. Section 243 authorizes urgent medical treatment for the purposes of saving the patient’s life, preventing serious deterioration in the patient’s condition, alleviating serious suffering on the part of the patient, or preventing the patient from behaving violently or being a danger to the patient or to others. But section 243 does not authorize ECT treatment when the person is capable of consenting and does not do so. Notwithstanding the exclusion of ECT, this definition is considerably broader than the common law and on its face appears to exclude the operation of an advance instruction. Each of sections 241(4), 242(6) and 239(4) include a provision to the effect that ‘if the person is not in hospital, the authorised treatment may not be provided by force’.The meaning of this provision is cryptic.The double negative appears to indicate that treatment may be provided by force if the person is detained in hospital. These subsections seem to be out of step with the orientation of the legislative scheme. Overall, despite the provisions that promote consultation and participation and the entitlement to make advance statements, the treatment provisions in the Act exclude the operation of advance statements except to the extent that they may be taken into account in treatment decisions. This limited role is made clear in Volume 2 of the Code of Practice for the Mental Health (Care and Treatment) Act 2003 (Scotland) (2005) (the Code of Practice). It can be argued that this approach brings the law in Scotland towards the recognition of

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advance instructions in mental health by ensuring that advance statements are not automatically excluded from treatment decisions under the Act. Nevertheless, a close reading of the Act suggests that the advance statement provisions fall short of the full recognition of person choice that was envisaged by the Millan Committee.

Advance statements in practice The introduction of the advance statement provisions was accompanied by three monitoring processes. These were a 12-month evaluation, a five-year review and the ongoing monitoring of the Act by the Mental Welfare Commission for Scotland. As noted above, the Commission’s monitoring role was supported by the Act’s requirement that the Commission be notified when an advance directive is overridden. The 12-month evaluation reported a lower than anticipated use of psychiatric advance statements (Atkinson et al. 2007). These observations were echoed in the annual reports of the Mental Welfare Commission for Scotland (MWC) following the introduction of the Act. In 2006 the Commission observed that insufficient information about advance statements was reaching patients and carers (MWC 2006). In 2007 and 2008 the Commission reported that knowledge about advance statements was improving, but uptake appeared to be small. The reports estimate 3 per cent of service users in 2007 and 10 per cent in 2008 had completed a directive although up to 60 per cent of service users had heard about advance statements (MWC 2007: 34; MWC 2008: 22). In the Commission’s view, advance statements are an area of confusion for clinicians and service users alike. In particular the Commission reported that consumers commonly expressed concern that advance statements could be ignored or overridden (MWC 2007: 44). Between April 2006 and March 2007, the Commission received and investigated 44 notifications of statement overrides (MWC 2007: 45). In 13 cases, the advance statement was not valid or had not been overridden. In the majority of the remaining cases, only one of which concerned the administration of ECT, the Commission was satisfied that the override had not taken place without ‘due consideration’(MWC 2007: 45). In the 2007–2008 period the Commission received and investigated 28 notifications (MWC 2008: 25). In the 13 cases in which the Commission considered that an override had taken place, it found there were good explanations for the treatment decision and good communication with patients (MWC 2008: 27). For example, a designated medical practitioner had administered ECT because the person’s life was at risk (through a refusal to drink) and the medical practitioner had provided a clear explanation to the patient. The Commission’s reports raise issues about the monitoring and implementation of advance statements. In the absence of a central register of all complete advance directives, the Commission noted that it is not possible to identify the

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proportion of advance statements being overridden, nor whether all ‘overrides’ are generating notifications to it. As the Commission notes, poor record keeping in some facilities makes it less likely that advance statements will be brought to the attention of designated medical officers. This means that person’s expressed wishes may be overridden unwittingly. Furthermore, with respect to ECT it is not clear whether the Act requires consideration of the information contained in an advance statement or whether the notification obligation applies in this context. Uncertainty about notification obligations also reduces the relevance of the information gathered by the Commission. In the 2008–2009 periods, the Commission received 28 notifications and examined 13 overrides. The Commission also noted in the 2008–2009 Report that it was aware of a number of circumstances in which patients were being encouraged to complete advance statements immediately prior to their Mental Health Tribunal hearings. In the Commission’s view this practice contravenes the requirements of the 2003 Act: Advance statements should be completed before treatment starts, at a time when the person’s capacity in respect of treatment for mental disorder is not significantly impaired. We think everyone involved should make sure that their practice does not encourage people to prepare advance statements when they aren’t able to think clearly about what might be in their best interests. We do remind everyone of the importance of taking account of the person’s present wishes when providing care and treatment. MWC 2009 This concern was reiterated in the Commission’s 2009–2010 Annual Report: We found some ‘advance statements’ which had been made by the person at the time of their Tribunal hearing. We regard these as contemporaneous statements about care and treatment which anyone should be able to make at such a time and which should form part of the routine discussion about individual care and treatment. As an ‘advance statement’ it would only have effect if the person then lost capacity. MWC 2010 These comments suggest that advance statements were being completed to satisfy legislative and administrative requirements rather than being used as a tool to enhance consumer participation in decision making. In 2010, annual notifications had increased to 137 with 29 overrides. In 16 of the override cases ‘depot’ medication was administered when the advance statement indicated a wish for oral medication (MWC 2010).The Commission does not comment on the reasons that are provided for the overrides, or on the Commission’s approach to ascertaining the validity of the overrides. As in earlier reports, however, the absence of a central register made it impossible to

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ascertain what proportion of advance statement overrides are reported to the Commission. If the number of completed statements is small, the override notifications may represent a significant proportion of them. This would most likely reinforce consumer perception that advance statements will be ignored. It is significant that over the period of implementation the tone of the Mental Welfare Commission for Scotland’s reports has changed from cautious optimism to concern. The Commission suggests the principles of participation are not well understood in mental health and that administrative convenience is driving clinical practice. A limited five-year review of the Act conducted by the McManus Review Group in 2009 confirmed that relatively few people had taken the opportunity to make an advance statement (McManus et al. 2009: 8–9). Most people who participated in the McManus Review Group’s survey had not heard of an advance statement, or did not think that they would be relevant to their circumstance. Few people knew how to make advance statements, how to have them witnessed, who was eligible to witness them, or the difference between advance statements and living wills or personal statements. Some service users indicated that they preferred to engage with mental health services on a basis of trust, some spoke about the difficulty of contemplating the need for advance statements when they were well and some were concerned that statements would not be adhered to. The McManus Review Group made a range of recommendations that aimed to improve the uptake of advance statements (2009: 9). Its recommendations were: • • • • • • • •

to increase publicity about advance statements; to clarify what might be regarded as appropriate content for an advance statement; to combine advance statements with personal statements; to increase the range of persons who can witness advance statements; to impose a responsibility upon staff to discuss advance statements with service users, (to facilitate and assist the making of advance statements); to record the reason for the patient’s decision not to make an advance statement; to record the relevance of advance statements throughout the period of care; and to provide a written record of the efforts made by staff to address the person’s stated wishes.

Finally, the Review Group recommended, in accordance with the views of the Mental Health Commission for Scotland, that a central register of advance statements be maintained by the Commission (McManus et al. 2009: 9). At the time of writing, amendments to the Act are being considered. Nevertheless, the Scottish experience suggests that once advance directives or statements

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are enshrined in legislation, considerable attention must be given to their implementation in order to ensure that they become embedded in clinical practice. Without such strategies, advance directives are unlikely to fulfil the role envisaged for them as a vehicle for autonomy and respect for patient choices in treatment decisions. Nevertheless, the potential value of advance statements is highlighted by Jacquie Reilly and Jacqueline Atkinson in their review of the content of 55 advance statements that were activated by the Mental Health Tribunal in Scotland between February and October 2007. The authors found that the majority of advance statements, although often quite different in form and content, contained clear information about treatment preferences (Reilly and Atkinson 2010: 116). This observation addresses the common concern that psychiatric advance statements may be ambiguous or inappropriate (Dresser 1994; Levinsky 1996; Backlar 1997). The authors also note that in only one instance was the advance statement a refusal of all treatment.This observation is important because it addresses an equally common concern that enforceable advance instructions may allow people to avoid needed treatment (Appelbaum 2004; Papageorgiou et al. 2004; Elbogen et al. 2006). In contrast, the literature attests that refusals of all treatment are rare (Sherman 1998; Sutherby et al. 1999; Backlar et al. 2001; Srebnik et al. 2005; Swanson et al. 2006a). Nearly all of the advance statements that were reviewed by Reilly and Atkinson included specific treatment refusals (2010: 117). They found that 42 per cent of the advance statements included a refusal of ECT, 53 per cent naming specific medications that the person did not wish to receive and 45 per cent of the statements named specific medications that the person was prepared to take (2010: 117–18). Most of the statements provided justifications for the stated treatment preferences. Reilly and Atkinson’s observation that the statements included clear and coherent reasons for the choices expressed addresses another concern in the literature. Concern had been raised that advance directives may fail to provide sufficient guidance because they are too general, too categorical or are without context. The observation that most statements communicated a clear, reasoned and apparently uncontroversial preference suggests that they are able to provide adequate guidance in most situations. Insight into the potential role for advance instructions beyond a narrowly defined concept of treatment is also provided by Reilly and Atkinson, who comment on the breadth, depth and detail of the information that was contained in the statements. Beyond medication, the statements contain refusals and requests that relate to different aspects of treatment, therapy, accommodation, nursing staff and medical staff. They also included requirements about ward routines, activities and exercise, care of pets, special facilities and food preferences. Some statements referred to personal circumstances, the support that the person wished to receive including church visitors, advocates, family visits, and support and assistance with medication (2010: 118–19).

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As Reilly and Atkinson observe, this content raises questions about the definition of medical treatment and its application under the Act (2010: 120). The clear assumption in the structure of the recommended advance statement forms, the text of the guidelines and the approach taken by the Mental Welfare Commission for Scotland, is that advance statements should address only pharmacological and psychosurgical treatment issues or other matters that relate to medical treatment. This would restrict the content of advance statements to matters that may be considered by the people who are entitled to make decisions under the Act. However ‘medical treatment’ is defined broadly in Volume 2 of the Code of Practice as ‘pharmacological or physical treatments, psychological interventions, nursing and care, habitation and rehabilitation’ (Scottish Executive 2005: 12). If this definition is applied to the operation of advance statements, the consideration of a broader range of items would appear to be contemplated. The broad definition of treatment adopted in legislation suggests that advance statements are envisaged as a tool that may expresses a positive demand for treatment and should be regarded as encompassing a range of matters that have traditionally been regarded as falling beyond the medical domain. This would suggest that advance statements in Scotland may legitimately refer to matters other than clinical ones, and should be regarded as having a level of enforceability beyond the clinical sphere. The person’s treating team should be required to at least consider the person’s wishes expressed in an advance statement and endeavour to incorporate these wishes in a coordinated treatment approach.The distinction that has been drawn between clinical treatment and ‘other’ care and treatment appears to impose an unnecessary limitation on the operation of the documents. This is especially so in light of the fact that the advance statements are enforceable only in the weak sense, as they are merely a guide to clinical decisions. This argument reinforces the notion that psychiatric care and treatment decisions should take account of the broad range of matters about which the person has expressed their wishes and, further, that these matters should fall within the open and inclusive definition of medical treatment contained in the Act. If these matters are considered, but not accommodated, a much wider category of override notifications should be reported to the Mental Welfare Commission for Scotland than is currently the case. If they were interpreted as encompassing a broad definition of medical treatment, then advance statements may meet the aspirational role ascribed to them in the Millan Report.

Non-discrimination The Scottish experience points to the possibility that an advance statement may legitimately contain the full gamut of information that relates to a person’s care and treatment. This offers the promise that advance statements in Scotland may develop as a platform for the formal recognition of personal choice. In the

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absence of accurate empirical information about their use, however, it is difficult to evaluate their impact. Nevertheless, the Scottish experience illustrates the considerable value of linking innovative legislative arrangements to independent accountability and oversight mechanisms such as those offered by the Mental Welfare Commission for Scotland. The Scottish experience also demonstrates what further action should be taken to maximize the benefits of advance statements, including: • • •

the need to provide ongoing comprehensive community and professional education and community wide discussion about the scope and effect of advance statements; the need for a clearer analysis of the application of relevant legal principles in mental health and the interaction of these with statutory regimes; and the need for practical guidance on how to address the competing statutory obligations take the person’s present and past wishes into account, and to provide ‘the maximum benefit’ to the person.

An important issue raised by the Mental Health Commission for Scotland is the possibility of underlying confusion about the law. The common law regarding advance instruction for competent people in general health clearly respects personal choice. A person has the right to refuse medical treatment even when the choice may be considered by another person to be irrational, unwise, or may result in the person’s death. This position was affirmed in the English case of Re C (1994) and advance statements are consistent with this approach. They require treatment choices that have been made while a person is able to make decisions to be followed in the future, provided the process of decision making and the execution of the document is sound. Mental health advance directives are equally consistent with this approach. On one hand, the discrimination associated with mental health appears to encourage a cautious approach to mental health advance statements, encouraging legislatures to adopt weak models of enforceability. On the other hand, where mental health legislation is guided by the principles of equality and non-discrimination, the question raised by this approach is whether the provisions operate in a discriminatory manner if one takes broader human rights considerations into account. From a nondiscrimination human rights perspective, the salient comparison is whether the operation of mental health law is commensurate with the operation of the law in general health. Although the Scottish model limits the operation of advance statements in the interests of the patient health and safety, section 1(3)(g) approaches the question of equality by requiring that mental health patients are not ‘treated in a way that is less favourable than the way in which a person who is not a patient might be treated in a comparable situation’.Whether this is the case will depend on an analysis of the operation of general health law in Scotland and the measures that are taken in the wider health-care sector to balance the right of

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competent people to refuse treatment against the right of incompetent people to receive medical treatment to which they are entitled. Such a comparison may highlight the importance of timely access to medical treatment services and respect for personal choice and participation rather than the recourse to compulsory measures to enforce treatment, except in the most serious circumstances. The equality provisions in the Scottish Act invite an analysis of mental health practice that adopts a broader human rights perspective that is informed by clinical practice in both the health and mental health arenas. Such an approach is envisaged in Article 25(d) of the CRPD which imposes an obligation on state parties to: Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care. Developing a fulsome human rights response to the mental health law in Scotland, as elsewhere, is likely to be an ongoing challenge. Nevertheless, the legislative model for mental health advance statements adopted in Scotland has attracted international attention as a best practice model for mental health laws in common law jurisdictions, particularly in countries with developed health systems that are yet to legally recognize psychiatric advance directives or statements. For example, the Exposure Draft Mental Health Bill released by the Victorian Government in Australia in 2010 draws closely on the Scottish provisions for psychiatric advance statements (Victorian Department of Health 2010: 19). The attraction of the Scottish model is its promise of accommodating the strongly expressed preferences of consumer groups for the recognition of advance instructions, and the expectation that people with mental health conditions are equally entitled to control their health and mental health care (Millan 2001: 5). As the developing practices with respect to advance statements identified by the Mental Welfare Commission of Scotland indicate, the adoption of a formal approach coupled with an assumption that their operation will be restricted may limit the transformative potential of advance statements in Scotland.

Chapter 9

Policy development in Australia and New Zealand

In Australia and New Zealand law and policy concerning mental health advance directives remains undeveloped. In New Zealand, the adoption of the New Zealand Bill of Rights Act (1990) supported the development of a strong ‘consumer rights’ approach in general health law and the promotion of mental health advance directives by the New Zealand Mental Health Commission. In Australia, an emerging engagement with mental health advance directives has followed Australia’s ratification of the CRPD with three jurisdictions proposing that mental health advance directives be recognized in forthcoming mental health legislation. Interest in mental health advance directives in law reform debates in Australia coincides with the development of national policy concerning advance directives in general health. This chapter considers the mental health advance directive debate in Australia and New Zealand in more detail. It outlines the cautious approach to mental health advance directives in these jurisdictions.

Policy and legislative reform in New Zealand In New Zealand legislative and policy reform about mental health advance directives followed the recognition of general health advance directives in the 1990s. Policy and law reform concerning general health advance directives was lead by the Office of the Health and Disability Commissioner (HDC) which was established as an independent statutory authority by the Health and Disability Commissioner Act (1994). The role of the HDC is to promote and protect the rights of health and disability services consumers, and to facilitate the efficient resolution of complaints (Health and Disability Commission 2009). The HDC developed a code of consumer rights, entitled Code of Health and Disability Services Consumers’ Rights (the Code), which was tabled in Parliament in 1996. Section 2 of the Code lists ten core rights. These include: • •

the right to be treated with respect; the right to freedom from discrimination, coercion, harassment, and exploitation;

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the right to services of an appropriate standard; the right to effective communication; the right to be fully informed: the right to make an informed choice and give informed consent: the right to support: the rights in respect of teaching or research, and the right to make a complaint.

The right to freely given and competent consent includes the right to make informed choices (Code 7(1)), the right to a presumption of competence (Code 7(2)), the right to make choices within one sphere of competence when one experiences diminished competence (Code 7(3)), the right, if the person is not competent, to have a decision made that is in their best interest and consistent with the decision they would have made had they been competent (Code 7(4)), the right to make and use an advance directive ‘in accordance with the common law’ (Code 7(5), and the right to refuse services and to withdraw consent to services (Code 7(7)). The Code reinforces the observation that common law advance directives are part of the law in New Zealand.The rights expressed in Code 7(7) reflect the right ‘to refuse to undergo medical treatment’ expressed in section 11 of the New Zealand Bill of Rights Act 1990. The New Zealand Mental Health Commission (MHC) was established in 1998 as an independent statutory authority. The commission advocates for the interest of people with mental illness and their families generally, to promote and facilitate collaboration and communication about mental health issues, to promote better understanding of mental illness, to reduce the discrimination associated with mental illness, to eliminate inappropriate discrimination on the ground of mental illness against people with mental health conditions and their families and caregivers (Mackenzie 1999). The Commission recognizes the Code of Health and Disability Services Consumers’ Rights and its relevance to mental health. In 2006 the Commission hosted an international forum on ‘No force advocacy’ to promote the development of no force advocacy and recovery perspectives as guiding principles for the development of mental health law and policy in New Zealand (Minkowitz 2006). With respect to mental health advance directives, the MHC had developed comprehensive, publicly accessible materials that provide an analysis of the law and advice regarding the use of mental health advice directives (MHC 2007). The materials encourage people with mental health conditions to express their future treatment preferences, to write them down, to discuss their choice with a family member and treating practitioner, and to have the document signed by a clinician who can attest to the person’s competence at the time the document is prepared.The materials emphasized the right to a presumption of competence in psychiatric settings in accordance with Code right 7(2). They emphasized the right to informed consent, which is describes as ‘a process that comprises competence, disclosure, understanding, voluntariness and consent’ (MHC 2007). They emphasized the right of people with diminished capacity to make

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decisions that remain within their competence, in accordance with Code right 7(3) and the right to retain legal competence to make decisions even if the person is detained under the Mental Health (Compulsory Assessment and Treatment) Act 1992 (MH Act). The MHC materials adopted the view that ‘most’ people with mental health conditions are ‘competent all of the time’, that ‘almost everyone is competent most of the time’ (MHC 2007). In the MHC’s view Code Right 7(3) envisages that a person with diminished competence will be able to make some valid decisions. This view is based on the MHC interpretation of the common law test for capacity as based on the person’s ability to understand their diagnosis and previous treatment (even if they do not agree with that diagnosis), to make choices by weighing up different options, and to understand the consequences of their decisions (MHC 2007). The materials listed the elements of a valid advance directive as competence, sufficient information and applicability to the circumstances. They explained that a person must be competent to make an advance directive, be free from undue influence when they made it, must have received sufficient information to make the particular directive they have made, and must have intended the directive to apply to the present circumstances.The MHC concluded that if an advance directive meets these criteria, it is valid; even if clinicians or family members disagree with the choices it makes (MHC 2007). The materials advised clinicians to follow advance directives that meet the criteria unless they have good evidence of at least one of the following: • • • • • • • •

That the person was not competent when they made the advance directive. That the person did not have enough information to make decisions about treatment. That the treatment they consented to is not useful (clinically indicated’) for treating their condition. That the treatment that was refused is the only good treatment, if that person is a danger to him or herself, or others. That the treatment they want is not provided by the public health system, or cannot be provided at the time when the advance directive would apply. That the person did not make the advance directive of his or her own free will. That the person did not intend the advance directive to cover the present situation. That the advance directive has expired (MHC 2007).

The materials advised patients to ask a doctor to explain their decision, in person and in writing, if a doctor does not follow an advance directive, and, if the explanation is unsatisfactory, to complain to the Health and Disability Commissioner (MDC 2011).The template for mental health advance directives developed by the MHC is appended to the World Health Organization’s Resource

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Book on Mental Health (WHO 2005). It is not known whether and to what extent mental health advance directives have been adopted in New Zealand. The Mental Health and Disability Commission revised its online and published materials with respect to mental health advance directives in 2009 (MHC 2009). At the time of writing, consumer advocates indicate that there appears to be little interest in mental health advance directives amongst consumers. Mental health advance directives are recognized in section 16 of the National Mental Health Sector Standards (2001). But are not recognized in the MH Act, save the extent that s5(2)(c), as amended by the Mental Health (Compulsory Assessment and Treatment) Amendment Act 1999 (NZ), requires the powers in the act to be exercised ‘with proper respect for the person’s cultural and ethnic identity, language, and religious or ethical beliefs’. In 2000 New Zealand’s Ministry of Health (MOH) published guidelines to the Mental Health (Compulsory Assessment and Treatment) Act 1992 (NZ). The guidelines note that clinical responsibility in the Act is underpinned by principle of ‘best interests’ and that content of an advance directives is relevant to a ‘best interest’ determination (Mackenzie and Shirlaw 2002: 19–20). The guidelines appear to respond to a concern that mental health advance directives were being overridden on best interest grounds. Despite the apparent disinterest in mental health advance directives amongst consumers and clinicians, the promotion of them and the interpretation of capacity and informed consent perspectives articulated by the MHC is consistent with international consensus with respect to capacity and support decision making that has informed the drafting of the CRPD. As New Zealand ratified the CRPD in 2008, a renewed interest in mental health advance directives emergez.

Policy reform in Australia Despite long-standing support for their use amongst consumers and their advocates, policy, law and practice in mental health advance directives in Australia is also undeveloped. Australia is a federation of eight jurisdictions, in which responsibility for the provision of health and mental health services is vested. The federal arrangements in Australia sometimes result in considerable variation in law and policy across the jurisdictions. In mental health, where legislative reform is typically slow, differences in law may be marked depending on the ‘cycle’ of law reform in each jurisdiction. Australia is the only developed western jurisdiction that lacks constitutional or legislative recognition of human rights, although the State of Victoria and the Australian Capital Territory have adopted human rights legislation (Evans and Evans 2008). Australia has ratified the major international Conventions, the most recent being the CRPD. Australia signed the CRPD on 30 March 2007 and ratified on 17 July 2008, acceding to the Optional Protocol of the CRPD on 21 August 2009. The Optional Protocol allows the Committee on the

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Rights of Persons with Disabilities to receive communications from or on behalf of people or groups of people who claim to be victims of a violation of the provisions of the CRPD by that State party. With respect to mental health law and policy the CRPD is the most relevant international document. Australia’s ratification of the CRPD was accompanied by an interpretive declaration, stating Australia’s understanding of the CRPD. The first two paragraphs of the Declaration are: Australia recognizes that persons with disability enjoy legal capacity on an equal basis with others in all aspects of life.Australia declares its understanding that the Convention allows for fully supported or substituted decision making arrangements, which provide for decisions to be made on behalf of a person, only where such arrangements are necessary, as a last resort and subject to safeguards. Australia recognizes that every person with disability has a right to respect for his or her physical and mental integrity on an equal basis with others. Australia further declares its understanding that the Convention allows for compulsory assistance or treatment of persons, including measures taken for the treatment of mental disability, where such treatment is necessary, as a last resort and subject to safeguards. The Joint Standing Committee on Treaties (JSCOT), which conducts public consultations and makes recommendations to the federal government regarding the incorporation of treaties into Australian law, explains the declaration as an attempt to clarify Australia’s position in relation to substituted decision making and compulsory treatment (JSCOT 2008). JSCOT reports that during the public consultations concerning the CRPD, although different views were expressed in relation to substituted decision making and compulsory treatment, the majority of disability organizations supported a declaration that would clarify Australia’s understanding of its ability to continue existing practices related to substituted decision making and compulsory treatment. The declaration indicates that both substituted decision making and compulsory treatment will only be accepted as last resorts and with appropriate safeguards. How Australia will honour the commitment to ensure that measures of compulsion are only employed as measures of last resort is yet to be addressed in national policy debate. As this book argues, taking mental health advance directives seriously could and should be an opportunity to align Australia’s mental health law and policy with the obligations imposed by the CRPD. The development of national mental health policy in Australia commenced in the early 1990s. The First National Mental Health Plan appeared in 1991. The National Mental Health Strategy was endorsed in 1992 by the Australian Health Ministers’ Conference (AHMC) as a framework to guide mental health reform. The Mental Health Strategy comprises the National Mental Health Policy, the National Mental Health Plan, the Mental Health Statement of Rights and

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Responsibilities and the Australian Health Care Agreements. The National Mental Health Strategy aims to promote the mental health of the Australian community, prevent the development of mental disorder, reduce the impact of mental disorders on people, families and the community and ‘assure’ the rights of people with mental health conditions. The need for national action on mental health was reinforced by the findings of the Human Rights and Equal Opportunity Commission’s ‘National Inquiry into Human Rights of People with Mental Health Conditions’, which identified a strong relationship between homelessness and mental illness, and described some of the human rights violations experienced by people living with mental illness in Australia (HREOC 1993). The Second Mental Health Plan was developed in 1998, the (third) National Mental Health Plan (2003–2008) was endorsed in 2003, and the Fourth National Mental Health Plan was released in November 2009.The National Mental Health Policy was revised in 2008 and the Statement of Rights and Responsibilities, which was first published in 1991, is currently under review. With respect to mental health advance directives, the Human Rights and Equal Opportunity Commission called for public submission to a discussion paper entitled ‘Living Wills’ but did not progress the inquiry to a final report (HREOC 1998). A renewed interest in the human rights approach to mental health policy, including an interest in mental health advance directives, has emerged in association with the development of national policy with respect to advance directives for end-of-life care, increasing support for the CRPD and a perceived crisis in the mental health system (Ozdouski 2005). In 2005, the two reports by the Brain and Mind Research Institute and the Mental Health Council of Australia, Out of Hospital, Out of Mind (Groom et al. 2003) and Not for Service: Experiences of Injustice and Despair in Mental Health Care in Australia (MHCA et al. 2005), described the crisis in the Australian mental health system. The Not for Service report, by the Mental Health Council of Australia, documents serious systemic neglect in the mental health sector (MHCA et al. 2005). The report found that across all State and Territory jurisdictions there were inadequate resources, insufficient early intervention especially for young people, failures to address issues of dual diagnosis, inappropriate facilities for children, insufficient emergency services and insufficient community support, a culture that blamed people with mental health conditions for being ‘sick’, and the emergence of the criminal justice system as a de facto institution (MHCA 2005). The Not for Service report concluded that ‘any person seeking mental health care runs the serious risk that his or her basic needs will be ignored, trivialised or neglected’ (MHAC 2005: 14), and that the system as it currently operates may result in a failure to provide basic medical and psychological health care, inappropriate use of short term seclusion, confinement or over-reliance on sedating medications. Longerterm, the impact may include deteriorating mental health and wellbeing,

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suicide, higher rates of homelessness, prolonged unemployment, incarceration or increased financial burden and poverty. MHCA 2005: 12 The Not for Service report prompted a senate inquiry into mental health services in Australia by a Senate Select Committee on Mental Health (SCMH). The SCMH published its report, A National Approach to Mental Health – from Crisis to Community, in two parts (SCMH 2006). In Chapter 3 of its first report, the SCMH identified mental health advance directives as ‘a way forward’. The SCMH argued that mental health advance directives could operate as both an important safeguard of rights, and a potential solution for some of the problems experienced in the mental health system (SCMH 2006 at [3.62]–[3.76]). The report recognized that consumers are more likely to achieve successful outcomes if they participated in their own treatment, and the participation can be enhanced by the use of advance directives (SCMH 2006 at [3.62]). While noting that ‘other’ jurisdictions had experienced difficulties with mental health advance directives, the SCMH recommended that the Australian Human Rights and Equal Opportunity Commission be requested to complete its important work on advance directives and protocols that would recognize the rights of consumers to, for instance, identify substitute decision makers, appropriate treatments and other financial, medical and personal decisions, particularly for the care of children. SCMH 2006 recommendation 18 At the time of writing, it appears that this recommendation remains unaddressed. In 2007 the Private Mental Health Consumer Carer Network (Australia) (PMHCCN) examined issues associated with identification of carers, and their burden of care. In their final report, Identifying the Carer Project: Final Report and Recommendations for the Commonwealth Department of Health and Ageing, advance directives are identified as beneficial to carers because they assisted people with mental health conditions to plan ahead and to maintain a degree of autonomy and control during crisis (PMHCCN 2007). The report recognizes that the ability to nominate people who would have control over their affairs in an advance directive may enhance the carer’s position in decision making where he or she is nominated (2007:16–17 at [3.4]). Growing support for mental health advance directives is also reflected in the policy work on advance directives being undertaken by the Australian Health Ministers Advisory Council (AHMAC). The National Framework for Advance Care Directives (AHMAC 2011) provides a Code for Ethical Practice and Best Practice Standards to guide the further development of general health advance directives in Australia. While the Framework is relevant to the mental health context, it is principally concerned with the development of nationally consistent law and policy with respect to advance directives for end-of-life care. In conclusion,

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despite a growing interest in them, Australia currently lacks a national policy position with respect to mental health advance directives.

Legislative reform in Australia As is noted above, the federal arrangements in Australia vest the responsibility for mental health law with the state legislatures. Australia’s First National Mental Health Plan (NMHP) released in 1991 included a policy commitment to develop mental health legislation in all States and Territories that was consistent with the UN Principles by 1998 (Rees 2003). In 1994 the Centre for Health Law and Ethics (CMLHE) at the University of Newcastle developed Model Mental Health Legislation as a method for the facilitation of national uniformity in mental health law (CMHLE 1994). Following a change of federal government, a ‘human rights audit’ was developed by the Commonwealth Attorney-General’s Department in 1996 to measure compliance by state and territory mental health legislation with the UN Principles (Watchirs 2005). The audit was guided by a ‘rights analysis instrument’ that contained a checklist of human rights domains, against which jurisdictions could assess their legislative framework, identify gaps or weaknesses, and instigate law reform processes as was considered appropriate. The human right audits prompted a process of mental health law reform in each state and territory (Weller 2008). New South Wales, the Northern Territory, Queensland and South Australia have adopted new mental health legislation in recent years, but have each declined to include recognition of mental health advance directives. The Australian Capital Territory,Victoria and Western Australia have indicated an intention to include recognition of mental health advance directives in forthcoming legislation. In Victoria, the Draft Exposure Mental Health Bill 2010 adopts a ‘supported decision making’ framework in accordance with the CRPD (Victorian Department of Health 2010). The Bill includes protections for voluntary patients, capacity-based civil commitment criteria, a ‘nominated person’ scheme and mental health advance directives which are referred to as ‘advance statements’. The advance statement provisions combine a high degree of formality with respect to the documentation of a person’s treatment preferences with a relatively low degree of enforceability. The Bill states that the purpose of advance statements is to enable the ‘wishes and preferences to be considered in the event that their capacity to make decisions is significantly impaired by a mental illness which requires treatment (clause 150). The statement must be made a person who understands the effect of the statement, and be signed by the person and another authorized person (clause 152). The statement may include the ways in which the person wishes to be treated for a mental illness; the ways in which the person does not wish to be treated for a mental illness; any other personal preferences which the person may wish to express in relation to their treatment for a mental illness; whether or not the person consents

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to the views of family members or carers being obtained in respect of matters relating to their treatment for a mental illness; and the name and contact details of the nominated person (clause 151 (a)–(e)). The statement must be formally withdrawn (clause 153). The Bill requires that a person, the Mental Health Tribunal or any other body required to make a decision in relation to the treatment of a patient ‘must have regard to’ a valid statement (clause 154(1)). Reasonable steps must be taken to ascertain whether a person has an advance statement although this requirement is satisfied by ‘a check’ in the patient’s medical record (clause 154(3)). Furthermore, if a decision is made that is inconsistent with the wishes and preferences of the patient expressed in their advance statement, the circumstances and reason for doing so must be recorded (s154(4)) and written advice provided to the patient, the nominated person, another person as indicated, the Mental Health Commissioner and the authorized psychiatrist. It remains to be seen whether the provision will be included in legislation, or whether they will ‘work’ in practice. The adoption of high degree of formality of the document may not achieve the certainty that is sought. An advance statement that appears to be properly executed may be flawed. For example, it may be signed by a person who lacks the requisite capacity.This means that the instructions contained in the statement may be followed when another course of action should have been preferred. On the other hand, a person’s preference may be overlooked if the document is not properly executed, even when the person’s preferences are clearly known. The high degree of formality also contrasts with weak requirement to ‘have regard to’ the contents of the advance statement. The requirement to report to the required people and bodies if a statement is not followed is a mild enforcement mechanism. It may only be effective if a culture of respect for patient preferences is developed in the mental health system. Perhaps most importantly, unless an effective documentation and filing system is in place, advance statements may be easily overlooked if a ‘check’ in the patient’s history fails to reveal them. The practical elements in a new scheme may serve to defeat it in the absence of widespread support for its objectives. Nevertheless, the Bill includes a general requirement to regard the wishes of the person regardless of whether such wishes are expressed in an advance directive. Presumably this requirement would require consideration of the wishes and preferences that were expressed in the advance statement that lack the formal requirements stipulated by the legislation. The general principles state that a person with a mental illness must as far as is reasonably possible in the circumstances have ‘their preferences and wishes considered in the making of decisions affecting the person’ (clause 7(4)(d)). The authorized psychiatrist (s125), the mental health review tribunal (s 90(d)) and the chief psychiatrist (s20(5)(b)) must have regard to ‘any wishes or preferences given by the patient, whether in an advance statement or otherwise’.

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Similarly, the person’s wishes and preferences in relation to treatment must be considered in the preparation of the treatment plan (clause 132). The high degree of respect that the Bill appears to envisage for the preferences of the person highlight the weak enforcement measures attached to the advance statement. In contrast to the formal approach proposed in Victoria, the Draft Mental Health Bill 2011 in Western Australia (WA Bill), released for public comment in 2010, adopts an informal ‘patient’s wishes’ approach. The Bill recognizes common law mental health advance directives and any other form of expression of a patient’s choice. Psychiatrists and the tribunal must ‘have regarded to ‘the patient’s wishes’ which can be ascertained in a variety of ways: 142. Patient’s wishes (1) In deciding what treatment will be provided to the patient, the Patient’s psychiatrist must have regard to the patient’s wishes in relation to the provision of treatment, to the extent those wishes can be ascertained. (2) For the purpose of ascertaining the patient’s wishes, the patient’s psychiatrist must have regard to the following – (a) any treatment decision in any advance health directive made by the patient; (b) the terms of any enduring power of guardianship made by the patient; (c) any other things that the patient’s psychiatrist considers may be relevant in ascertaining the patient’s wishes. (3) The patient’s psychiatrist must ensure that the patient’s medical record includes – (a) a record of the patient’s wishes, to the extent those wishes could be ascertained; and (b) the things to which the patient’s psychiatrist had regard in ascertaining the patient’s wishes; The WA model merely requires that ‘regard’ be given to patient wishes. It is possible that it provides a legislative model that supports the development of a robust culture of choice in the mental health system. Like the provision in Victoria, the ultimate test of the informal approach is whether and to what extent person preferences are followed in both the voluntary and involuntary context. In the Australian Capital Territory the current review of the Mental Health (Treatment and Care) Act 1994 commenced with the release of a Discussion Paper in August 2006. An Options Paper in 2007 supported the inclusion of provisions for advance directives that clearly set out their status, development,

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use and review. An external ‘stage 2’ consultant report in 2008 supported the inclusion of advance directives in the revised legislation, but recommended that full consideration of advance directives be deferred until a clearer understanding of the statutory definition of capacity had been established. At the time of writing, the consultation period for the review of the Act has been extended until August 2011, with the expectation that an Exposure Draft is planned to be ready for public consultation in May 2012.The advance agreement working group, which is one of six working groups supporting the review committee, is considering the protection of negative treatment options which would require all consumers to indicate treatment they do not want in an Advance Agreement. On 5 July 2011 the ACT government approved several framework decisions for the revised Act, one of which was approval of ‘decision making capacity’ as a criterion for deciding whether a person should be placed on an involuntary treatment order. Current research in the ACT is identifying elements of a robust practice model (Wauchope 2011). Informed by active research into implementation and best practice, the ACT may develop a more robust approach to mental health advance directives than those that are currently proposed in Victoria and Western Australia.

Mental health advance directives and risk The poor engagement with mental health advance directives in Australia prior to recent law reform proposals, and the tenor of the law reform debate that has surrounded the exposure draft bills, reflects an underlying concern that formal recognition of mental health advance directives may ‘trump’ the legislative powers contained in mental health acts. Civil commitment laws in all the Australian jurisdictions permit the detention of people with mental health conditions in certain circumstances. In general, Australian mental health laws adopt a risk-based approach to the civil commitment criteria that reflects the wide discretionary powers given to psychiatrists. The current Victorian legislation provides a useful example of the risk-based approach. Section 8 of the Mental Health Act (1986) provides that: s8(1) the criteria for the involuntary treatment of a person under this Act are that – (a) the person appears to be mentally ill; and (b) the person’s mental illness requires immediate treatment and that treatment can be obtained by the person being subject to an involuntary treatment order; and (c) because of the person’s mental illness, involuntary treatment of the person is necessary for his or her health or safety (whether to prevent a deterioration in the person’s physical or mental condition or otherwise) or for the protection of members of the public; and

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(d) the person has refused or is unable to consent to the necessary treatment for the mental illness; and (e) the person cannot receive adequate treatment for the mental illness in a manner less restrictive of his or her freedom of decision and action. Risk-based civil commitment laws empower clinicians to provide necessary treatment if a person is unwell. The laws are intended to ensure that people with mental health conditions who are unable to make decisions for themselves are provided with the treatment they need. When such laws were conceived, it was thought that the risk criteria would confine the operation of compulsory powers to the most limited of circumstances. The gradual expansion of the grounds for civil commitment means that the civil commitment laws can too easily intrude on the legitimate sphere of person decision making. For example, the refusal criteria contained in section 8(1)(d) of the Mental Health Act 1986 conflates a refusal to give consent with an inability to give consent. This means that legitimate refusals of medical treatment may be disregarded (Rees 2009). Similarly, the health and safety ground in s8(1)(c) which now includes the prevention of the deterioration of the person’s physical or mental condition as a ground for civil commitment may be used override an person’s preferred approach to treatment. Furthermore, the protection of public safety is included as third alternative ground. This may lead to confusion about the legal basis of civil commitment and consequent confusion about the nature of the powers that may be exercised by the state in different circumstances. As Mary Donnelly observes, if protective powers are exercised in a way that intrudes upon a person’s right to self-determination, they sit uncomfortably within legal systems that privilege the principle of autonomy (Donnelly 2008). Like other developed jurisdictions, the principles of autonomy and choice are embedded in health law and extend to the recognition of common law advance directives. In the case of Rogers v Whitaker (1992) the High Court of Australia Mason CJ, Brennan, Dawson, Toohey and McHugh JJ, citing F v R (1983), described the principle as ‘the paramount consideration is that a person is entitled to make his own decisions about his life’ (at [12]). Confirmation that Australian law recognizes advance directives is provided in the recent decision of Hunter and New England Area Health Service v A (2009) in the New South Wales Supreme Court. In that case McDougall J considered the validity of an advance directive containing an explicit refusal of renal dialysis. His Honour accepted the validity of the document describing it as a representation of Mr A’s prospective exercise of the ‘right of self-determination’, a right that should be respected in the event of an emergency such as pending loss of life (Hunter and New England Area Health Service v A 2009 at [56]). If it is accepted that Australian law also recognizes mental health advance directives, at least in so far as they seek to operate with respect to voluntary mental health treatment, a key question is the whether the choices expressed in

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a valid advance statement, when the person retains decision making ability, will be similarly regarded as valid even if the refusal of treatment is detrimental to the person’s health and wellbeing and may result in loss of life. The position at present is that mental health legislation authorizes the provision of treatment in such circumstances. The principles of autonomy and self-determination in health law permit a person to refuse medical treatment, even if the refusal causes the person harm. If risk-based mental health laws fail to allow for the person’s right to selfdetermination, as is the case in the Victorian example, a different standard of respect for the rights of the person with mental illness is created. The potential value of mental health advance directives is that they provide a mechanism that may improve the operation of risk-based criteria. They may maximize the opportunity for self-determination, and provide a framework in which safeguards that are appropriate to the needs of the person may be created. For example, a mental health advance directive may set out the circumstances in which a person wishes others to intervene.This argument indicates that mental health advance directives should be recognized as operating in conjunction with civil commitment laws because confining them to the voluntary sector unduly limits their potential. An additional difficulty with risk-based mental health laws is that they amplify the effect of risk management approaches. Risk management has become the dominant paradigm in service delivery in Australia (Hazelton 2005). The risk perspective interprets a person’s behaviour in terms of the risk management framework, providing a risk management response. As Hazelton argues, the shift to community care in Australia in the 1990s coincided with the emergence of risk management as a dominant theme in institutional care. In Hazelton’s view, risk management techniques result in a palpable hardening of the institutional ethos, creating environments that are less likely to respect the expressed preferences of people living with mental illness (Hazelton 2005).This analysis is consistent with the observation that risk perspectives overshadow human rights based responses because risk perspectives see the person as a compilation of risks, rather than as a person with human motivations and human needs. The dominance of risk management approaches may provide an explanation for the indication in proposed law reform that a ‘soft’ approach to mental health advance directives is preferred in Australia. The ‘soft’ recognition of mental health advance directives will ensure that risk management remains the governing paradigm in mental health. Paradoxically, risk approaches seem unlikely to reduce the sense of conflict that is currently associated with mental health advance directives. Despite the re-emergence of interest in mental health advance directives in Australia it is not known how many people have drafted a mental health advance directive, whether or not those people have sought to rely on them, and whether their instructions have been followed. It seems likely that people who have written mental advance directives, and have sought support for the

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choices expressed in them, can expect that these choices will be respected by their treating clinicians. Some people living with mental illness in Australia have prepared informal advance directives, have successfully negotiated support for their future treatment choices with their treating practitioners, and expect that these informal documents will be honoured in the event of a future mental health crisis (Roper and Edan 2011).The challenge in Australia is to encourage a broader level of engagement with mental health advance directives amongst consumers and clinicians and to reflect the development of mental health advance directive practice in appropriate policy and law.

Part 3

Claiming choice

Chapter 10

Access to treatment

In each of the case studies discussed in Part 2, the recognition of mental health advance directives in law has been accompanied by an effort to create decision making processes that balance respect for autonomy with respect for the wellbeing of vulnerable people.While this is an important consideration, the ‘problem’ of refusal has set the tone and focus of the mental health advance directive debate in Commonwealth jurisdictions.The concern to avoid the problem of refusal has encouraged the adoption of ‘soft enforceability’ approaches. The focus on refusal has served to overshadow consideration of the broader role that mental health advance directives might play in the development of a human rights approach to mental health care and treatment, although the adoption of them seems to reflect recognition of that potential. As discussed in Part 1, the CRPD has engendered a new debate about human rights, participation and the positive entitlement to mental health care.The CRPD emphasizes the right to informed consent and the right to access health and social care of one’s choice. The core argument of this book is that the recognition of these entitlements in international human rights law invites a re-engagement with mental health advance directives as tools for the realization of human rights. The idea that mental health advance directives may serve to orchestrate positive entitlements to health care challenges current assumptions about the status, scope and enforceability of mental health advance directives. As the case studies in Part 2 illustrate, it is generally assumed in law reform debates that mental health advance directives may only refer to medical treatment, may not contain ‘demands’ for treatment, and are not enforceable if they refer to matters other than medical treatments. As the case of Conway v Jacques indicates, these assumptions may be based on interpretations of the law that have not considered the effect of human rights legislation, or the impact of human rights principles on the development of the law. Three outstanding legal ‘problems’ appear to inhibit a human rights appreciation of mental health advance directives. These are the problem of the right to demand treatment, the problem of relationship between ‘best interest’ determinations and choice, and the problems of the operation of capacity principles in mental health.

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The first two issues have been addressed in new jurisprudence in the ECrtHR and in the Victorian Supreme Court in Australia. This chapter discusses the ‘the right to treatment’ in the Article 8 jurisprudence of the ECrtHR in the cases of Pretty v United Kingdom (2002) (Pretty), Glass v United Kingdom (2004) (Glass) and Tysiac v Poland (2007) (Tysiac).These cases challenge the assumption that the ‘right to choose’ is limited by medical discretion.They offer examples of judicial approaches that support the adjudication of positive entitlements in health care.

The right to health and privacy The ECrtHR has considered the question of access to medical treatment and the right to choose in Article 8 jurisprudence. Article 8 is a qualified right that protects private and family life.Article 8(1) of the Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) states: ‘Everyone has the right to respect for his private and family life,his home and his correspondence.’ Article 8(2) states: There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others. The ECrtHR describes the concept of ‘private and family life’ in Article 8(1) as ‘a broad term’ that is ‘not susceptible to exhaustive definition’ (Pretty at [61]). The ECrtHR has recognized that Article 8(1) encompasses the protection of the physical and psychological integrity of the person (per X and Y v Netherlands 1985), protection of an person’s gender identification, name and sexual orientation (B. v France 1993; Burghartz v Switzerland 1994; Dudgeon v United Kingdom 1981), and the protection of an person’s physical and social identity (Mikuli´c v Croatia 2002). ECrtHR jurisprudence also establishes that Article 8(1) rights protect: aspects of a person’s physical and social identity including a right to personal autonomy, personal development, and the right to establish and develop relationships with other human beings. (Tysiac at [107]) In Pretty, the ECrtHR acknowledges the right to self-determination and the right to personal autonomy as the principles that underpin the interpretation of Article 8: Although no previous case has established as such any right to selfdetermination as being contained in Article 8 of the Convention, the

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Court considers that the notion of personal autonomy is an important principle underlying the interpretation of its guarantees. (Pretty at [61]) Article 8(1) provides the basis upon which the rights in Article 8 are engaged. Article 8(2) indicates that the rights recognized in Article 8(1) are qualified rights. They may be limited provided the limitation is in accordance with Article 8(2). With respect to the meaning of Article 8(2), the jurisprudence of the ECrtHR has established that ‘necessary’ limitations are those that correspond to a pressing social need and are proportionate to their legitimate aim to which they are directed (Olsson v Sweden (No.1) 1989 at [67]). Given the expansive interpretation of Article 8(1) adopted by the ECrtHR, Article 8 jurisprudence typically turns on the question of whether and in what ways a limitation of Article 8(1) rights may be regarded as legitimate pursuant to Article 8(2) (Marshall 2009).The cases of Pretty, Tysiac and Glass each concern access to health care and the limitations that may be imposed by Article 8(2). These cases show that with respect to health decisions, Article 8 recognizes that people are entitled to a process of adjudication in instances where there is a dispute about the provision of health care. The jurisprudence also protects the right of people to be involved in decisions about health care.

Pretty and the right to end life In Pretty the ECrtHR considered Ms Pretty’s claim that she was entitled to active assistance to enable her to exercise her right to die. The ECrtHR found that the United Kingdom had not infringed Ms Pretty’s human rights by declining to assist her to end her life. The ECrtHR took the view that Article 8(1) of the ECHR is informed by the underlying principles of self-determination and autonomy. It held that the right to self-determination may be legitimately limited, provided the limitation was in accordance with Article 8(2). The ECrtHR indicated that the scope of the right to self-determination ‘was the ability to conduct one’s life in a manner of one’s own choosing’ (at [62]). The language of choice used in Pretty echoes the language of self-realization and transformation used by Judge Martens in his dissenting judgement in Cossey v United Kingdom (1990) (Cossey) regarding transsexual marriage. In that instance His Honor stated: Human dignity and human freedom imply that a man should be free to shape himself and his fate in the way that he deems best fits his personality. (Cossey at [24–25]) In Pretty, the ECrtHR observed that the law respects the right to pursue activities that are perceived to be of a physically or morally harmful or dangerous nature for the individual concerned (Pretty at [62]). As Article 8(1) rights are not absolute rights, being expressly limited by the operation of Article 8(2), the

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ECrtHR turned to the application of Article 8(2). In the ECrtHR’s view, all measures that are imposed to limit Article 8(1) compulsory or criminal measures require justification in terms of Article 8(2) (Pretty at [127]). The ECrtHR commenced its analysis by summarizing the law with respect to the refusal of medical treatment that prolongs life. It reiterated the position that the imposition of medical treatment without the consent of a mentally competent adult patient interferes with a person’s physical integrity in a manner capable of engaging the rights protected under Article 8(1) of the ECHR (Pretty at [63]). Referring to the Canadian case of Rodriguez v Attorney General of Canada (1993) the ECrtHR recognized that the denial of assistance at the end of life which prevents an individual managing his or her death constitutes a deprivation of autonomy. For such a denial to be considered lawful, it must be justified according to the principles of fundamental justice (Pretty at [66]). Ms Pretty claimed that the correct interpretation of the human rights principle expressed in the ECHR was that her right to self-determination encompassed a right to be actively assisted to die. In response to her claim, the United Kingdom argued that the policy against assisted suicide was justified because it aimed to protect vulnerable persons. The ECrtHR accepted this argument, forming the view that the purpose of the prohibition against assisted suicide satisfied the test of necessity. The prohibition protected vulnerable people from the ‘likely incidence of abuse if the general prohibition on assisted suicides were relaxed or if exceptions were to be created’ (Pretty at [74]). Furthermore, in the ECrtHR’s view, the requirement of ‘proportionality’ in Article 8 was satisfied because the law in the United Kingdom provided: . . . a system of enforcement and adjudication which allows due regard to be given in each particular case to the public interest in bringing a prosecution, as well as to the fair and proper requirements of retribution and deterrence. (Pretty at [76]) The judgement in Pretty indicates that a broad ‘right to choose’ based on the principle of self-determination and autonomy falls within the scope of Article 8(1), and affirms that the right may be limited in accordance with the principles in Article 8(2). However, the ECrtHR took the opportunity to examine the requirement of fundamental justice in Article 8(2), arguing that Article 8(2) obligations necessitate an analysis of the overall structure of the law, and whether the person is able to bring their claim before an appropriate authority. Furthermore, according to the ECrtHR the analysis should establish whether or not the law provides a protective framework that operates with sufficient flexibility to accommodate the special circumstances of people whose rights are protected by the ECHR. While the ECrtHR declined to grant Ms Pretty access to the care that she sought, the reasoning of the court with respect to the analysis of the system of

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flexible adjudication provides an important precedent for an analysis of the right to choose. The ECrtHR emphasized the balance that must be struck between respect of an individual’s right to self-determination and the competing social policy obligations that may legitimately limit that right, indicating that the question of balance was a matter of ongoing consideration. These ideas were extended in Tysiac by the requirement that the adjudicative process be timely, responsive, and involve the person.

Tysiac and access to lawful treatments In Tysiac the ECrtHR held that there was a violation of Article 8 (Tysiac at [128]). Judge Borrego Borrego provided a dissenting opinion. Alicja Tysiac, who suffered from severe myopia and had become pregnant, sought medical advice because she was concerned that her third pregnancy would severely damage her eyesight. Three ophthalmologists concluded that there would be a serious risk to her eyesight if she carried the pregnancy to term, but refused to issue a certificate for the pregnancy to be terminated on therapeutic grounds as required by the Family Planning, Protection of the Human Foetus, and Conditions Permitting Pregnancy Termination Act (1993). Certification was provided by Ms Tysiac’s general practitioner, but the head of the gynaecology and obstetrics department in the public hospital in Warsaw determined that there were no medical grounds for performing a therapeutic abortion. Following the birth of her third child, Ms Tysiac’s eyesight deteriorated to the extent that a panel of doctors concluded that she was disabled to a ‘significant’ degree, which entitled her to treatment and daily assistance. Referring to the analysis of Article 8(1) in Pretty, the ECrtHR noted that the obligation to respect the right to physical and psychological integrity includes both positive and negative obligations. The ECrtHR noted that the essential object of Article 8 was ‘to protect the person against arbitrary interference by public authorities’ (per Malone v the United Kingdom (1984) at [67]). In the view of the ECrtHR, this requirement brought into play the obligation to ensure that interference with Article 8(1) must be ‘in accordance with the law’ as was ‘necessary in a democratic society’ (Tysiac at [109]). Furthermore, the ECrtHR found that consideration of these elements must aim for a ‘fair balance’ between the competing interests of the individual and of the community as a whole (Tysiac at [111]). In the ECrtHR’s view, the absence of an effective and open process meant that Ms Tysiac was unable to avail herself of the entitlement to seek a termination of pregnancy on health grounds that was in fact accorded in Polish law. The ECrtHR found that the prevailing uncertainty about the operation of Polish law by health services and personnel amounted to a de facto prohibition against access to the law. In Tsyiac, the ECrtHR held that the positive obligations inherent in the obligation to respect private life require the effective realization of the rights in the practical circumstance of the case. In Ms Tysiac’s case, the rights conferred in legislation were not accessible in

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reality. The Polish arrangements therefore offended the principle that rights must be practical and effective. As the ECrtHR stated: . . . the principle of the rule of law presupposes . . . that the Convention is intended to guarantee not rights that are theoretical or illusory but rights that are practical and effective. (Tysiac at [113]) Furthermore, in order to guarantee the effective enjoyment of rights, positive measures may intrude into ‘the sphere of relations between individuals’ and include ‘a regulatory framework for the adjudicatory and enforcement machinery protecting individuals’ rights and the implementation, where appropriate, of specific measures. (Tysiac at [110]) The ECrtHR described the measures that would be necessary to support the effective protection of rights as ones that involved the person in the decision making process to a degree that was sufficient to protect their interests. In the ECrtHR’s view: . . . it is important for the effective enjoyment of the rights guaranteed by this provision that the relevant decision making process is fair and such as to afford due respect to the interests safeguarded by it. What has to be determined is whether, having regard to the particular circumstances of the case and notably the nature of the decisions to be taken, an individual has been involved in the decision making process, seen as a whole, to a degree sufficient to provide her or him with the requisite protection of their interests. (Tysiac at [113], emphasis added by the author) In the case of a decision to deny a termination of pregnancy on health grounds, particularly with respect to vulnerable individuals such as Ms Tysiac, the ECrtHR took the view that judicial review was necessary. It concluded that Polish law failed to uphold the right to respect for her private life because it lacked effective mechanism for determining whether the conditions for obtaining a lawful abortion had been met. The court found that retrospective measures alone did not provide appropriate protection for physical integrity, and that having regard to the circumstances of the case as a whole, the Polish State had failed to safeguard Ms Tysiac’s right to the effective respect for her private life in breach of Article 8. The court held that the rule of law in democratic societies requires that ‘measures affecting fundamental human rights’ are subject to ‘some form of procedure before an independent body competent to review the reasons for the measures and the relevant evidence’ and that ‘a comprehensive view’ of the applicable procedures must be taken in order to ascertain whether this condition

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has been satisfied (Tysiac at [117]). In circumstances such as those is Tysiac, the procedure should guarantee to a pregnant woman at least the possibility to be heard in person and to have her views considered. With respect to the question of choice, Tysiac makes it clear that in certain circumstances, the formal review of determinations that affect fundamental rights is required, and that there existed . . . a positive obligation to secure to its citizens their right to effective respect for a person’s physical and psychological integrity (Tysiac at [1]). Prior to Tysiac, the jurisprudence of the ECrtHR consistently declined to impose an obligation on state parties to provide a specific level of medical care on ‘margin of appreciation’ grounds (Conte 2010: 288). In Tysiac the ECrtHT acknowledges that ‘the State enjoys a certain margin of appreciation’ (Tysiac at [111]), and that the diversity of state practices with respect to termination of pregnancy meant ‘that the notion of “respect” is not clear-cut’ (Tysiac at [112]). Nevertheless, in Tysiac the ECrtHR is willing to intrude on the ‘margin of appreciation’ by finding that retrospective measures to ameliorate Ms Tysiac’s difficulties did not amount to appropriate protection of her physical integrity. Having regard to the circumstances of the case as a whole, the ECrtHR found that the Polish State had failed to safeguard Ms Tysiac’s right to the effective respect for her private life in breach of Article 8, and the positive aspect of the rights imposed an obligation on the state to provide effective access to lawfully provided treatments. Considered in the light of a right to choose in mental health care, the development of Article 8(2) by the ECrtHR in Tysiac establishes a positive entitlement to the timely adjudication of health decisions.The court found that retrospective measures alone did not provide appropriate protection for physical integrity and that the Polish State had failed to safeguard Ms Tysiac’s right to the effective respect for her private life in breach of Article 8.

Glass, Trinitas and disputed treatment In Glass, which was heard prior to Tysiac, the ECrtHR has affirmed similar principles with respect to the participation of substitute or proxy decision makers in the decision making process. In Glass, the ECrtHR held that there had been a breach of David Glass’s rights under Article 8 of the ECHR. The case involved a challenge to the decision by clinicians to provide care to a severely disabled and critically ill child that the child’s family had refused because they believed the treatment would hasten the child’s death. The claim was bought by the child’s mother who was an authorized decision maker. The decision in Glass has been interpreted as a confirmation that the law in the United Kingdom requires disputes between parents and medical advisers to be settled by a court, and that a clinical determination of what constitutes a

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child’s ‘best interests’ was ‘not determinative’ in such a dispute (Bridgeman 2005: 113). The decision in Glass indicates that appropriate decision making in health depends on the maintenance of a communicative relationship between patients or substitute decision-makers and clinicians, because the ‘lawfulness’ of the decision depends in part on the consensus that is produced by a joint decision. This point is illustrated in the ECrtHR analysis of the applicable law in the United Kingdom. The ECrtHR cited the summary of English law provided by Lord Donaldson, Master of the Rolls, in Re J. (A Minor) (Wardship: Medical Treatment) (1990) at [45]: The doctors can recommend treatment A in preference to treatment B. They can also refuse to adopt treatment C on the grounds that it is medically contra-indicated or for some other reason is a treatment which they could not conscientiously administer. The court or parents for their part can refuse to consent to treatment A or B or both, but cannot insist on treatment C. The inevitable and desirable result is that choice of treatment is in some measure a joint decision of the doctors and the court or parents. Furthermore, English law provides that when the joint decision making process breaks down, a determination may be sought from a court of law. In the view of the ECrtHR an underlying ‘problem’ in Glass was that the hospital did not seek court assistance, as it was entitled to do at an appropriate time. Instead the hospital sought to impose its decision and provide treatment that it regarded was in the best interests of the child.The ECrtHR determined that the mother, in her role as the boy’s legal proxy, ‘had the authority to act on his behalf and to defend his interests, including in the area of medical treatment’ and was entitled to refuse treatment (Glass at [70]). In the face of that refusal, the hospital should have sought judicial resolution of the disagreement. The ECrtHR therefore concluded: In the absence of authorization by a court the decision of the authorities to override the second applicant’s objection to the proposed treatment resulted in a breach of Article 8 of the Convention. (Glass at [83]) The ECrtHR acknowledged that the requirement in Article 8(2) that a limitation of an Article 8(1) right is only permissible ‘according to law’ may be satisfied by effective processes of adjudication, which were available in the United Kingdom. Nevertheless, Glass establishes a ‘right to choose’, albeit one that is limited by a prohibition against demanding treatment that is medically contra-indicated or unconscionable. Glass also contributes to the debate about the right to treatment, by recognizing that a person in the role of substitute decision-maker or legal proxy is entitled to participate fully in the treatment decision. This is consistent with the decision making role accorded to parents

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and also to the decision making role envisaged for substitute decision-makers in modern guardianship regimes. The limits of the medical discretion to withhold ‘medically contra-indicated’ treatment have been tested in disputes about end-of-life care. The question has arisen in circumstances where a medical determination that active treatment is futile, and therefore medically contra-indicated, has been challenged by a surrogate or substitute decision-maker who wishes active treatment be continued. In the United States, these cases are referred to as ‘futility disputes’ (Bassel 2010). A recent example of a ‘futility dispute’ is the case of Betancourt v Trinitas Hospital (2010), in which a New Jersey Court ordered that active treatment for a person who was in a persistent vegetative state be continued on the basis that substitute decision-makers are obliged to make decisions in accordance with the person’s known wishes. The order was contrary to the course of action recommended by the hospital which was for its staff to provide non-active end-of-life care. The court accepted the family’s position that Mr Betancourt would have wanted active treatment to continue. In upholding the wish to continue treatment, the New Jersey Court appears to recognize a strong ‘a right to treatment’ at last with respect to vulnerable people.

Vulnerability and choice Each of the cases discussed above concern the rights of vulnerable people and their ability to access needed medical treatment. Together, the cases establish the principle that people have a right to adjudication processes to determine whether a refusal to provide a requested medical treatment is lawful. A timely adjudication process must be available to ensure that an person’s right to respect physical and mental integrity as is protected by Article 8 is not compromised by a failure to provide medical treatment, or to deny access to medical treatment on unlawful grounds. In Pretty, the grounds for limiting the rights protected by Article 8(1) were deemed to be lawful pursuant to Article 8(2). The ECrtHR indicated in this decision that it was concerned to protect vulnerable people who may be exposed to unwanted ‘access’ to such assistance should the prohibition against active assistance to end life be lifted. In Tysiac and in Glass the applicants were characterized as vulnerable people, both applicants were physically vulnerable, and their vulnerability was exacerbated by limited access to adjudicative processes. In Tysiac, Ms Tysiac’s access to lawful treatment was effectively denied in the absence of an adjudication process. In Glass, access to lawful treatment was denied because the hospital failed to utilize an available adjudicative process. If similar reasoning is applied to a situation of a person with a mental health condition being refused psychiatric treatment, the principles expressed in Tysiac suggest that the ECrtHR would require a timely and accessible adjudication process to ensure that the right to respect for physical and mental integrity is not unduly limited by the refusal of treatment. With respect to adjudication, Tysiac requires an

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adjudication process that is sufficient to protect the interests of a vulnerable individual. It must take into account the particular circumstances of vulnerable person, provide an opportunity for the person to put their case, and include consideration of the person’s point of view on the decision. The judgement in Glass similarly supports the conclusion that a person, or in the circumstances of that case a substitute decision-maker, is entitled to challenge a denial of health care. The wide interpretation of the right to respect for private life in Pretty, coupled with the ECrtHR analysis in Tysiac, supports the conclusion that in the determination of whether an Article 8(1) right has been limited, the individual’s interpretation of bodily, psychological and moral integrity will be given due weight. The reasoning in Tysiac indicates that a denial of psychiatric services in circumstances that constitute an infringement of a person’s fundamental human rights requires timely adjudication. The cases discussed in this chapter show that an expanded notion of the right to respect for private life that is adopted by the ECrtHR is animated by the idea of ‘self-determined and transformative freedom and respect for human dignity and human freedom’ (Pretty at [65]). Genevra Richardson similarly observes that the ECrtHR is willing to adopt an ‘empowering notion of human dignity’ (2011: 150), and is prepared to give significant scope to the principles of autonomy and self-determination. As the decision in Pretty illustrates, the ECrtHR understands that the principle of self-determination is legitimately subject to limitations when state policy aims to protect vulnerable people. However, when the individual claimants are themselves vulnerable the principle of selfdetermination is amplified to facilitate their participation in the decisionmaking processes. The underlying rationale for the respect that should be accorded to the person recognizes the importance, from a human rights perspective, of participation in adjudicative and other decision making processes. Furthermore, the judgement in Tysiac indicates that the ECrtHR accepts that the unique perspective of the person is a critical element in the deliberations of the court. By including the perspective of the person, the human rights analysis is better equipped to take account of the way in which health or social care decisions may affect that person’s enjoyment of their right to moral, psychological and bodily integrity or other human rights. The tenor of this jurisprudence also raised the proposition that whether or not a person demonstrates that they posses full or partial decision making ability, the expression of the person’s wishes with respect to the matters concerning moral, psychological and bodily integrity should be given a high degree of respect. In this context, the person’s wishes take on the character of ‘expert opinions’ in the sense that the person’s subjective perceptions of what they consider amounts to an intrusion upon their physical or mental integrity should govern the scope of the right. Whether or not the right may be limited in accordance with social needs is recognized as another and separate question. The close association between respect for the right to privacy and respect for the choices of the individual indicates that a failure to respect individual choice

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in circumstances that may result in an infringement of fundamental human rights must be justified according to law. As is discussed in Part 1 of this book, the CRPD similarly challenges the notion that the right to choose is confined to questions about the general provision of services. The social model of disability in the CRPD amplifies the positive obligations that flow from ‘the right to health’. It reinforces the notion that the realization of effective rights ‘on the ground’ requires an objective assessment of a person’s need for health care that relies on the subjectively determined aspirations or perspectives of the person.This is because the notion of health is inextricably entwined with the physical and mental integrity of the person. The CRPD engagement with the right to health acknowledges the principles of non-discrimination and the obligation to provide ‘reasonable accommodation’ for people with disability.The analysis of the CRPD contained in this book argues that the principles of non-discrimination and reasonable accommodation, coupled with the obligation to provide effective remedies for human rights violations, impose obligations on state parties to provide processes of adjudication that enable people to assert a positive entitlement to particular health services. Furthermore, processes of adjudication that are compatible with the CRPD should include an analysis of the person’s particular situation that is informed by the perspective of the person and the expression of their person choice. In CRPD terms, the person is the basis for the adjudication of positive rights, and as the starting point for a rights-based analysis. Despite the strong indication in these judgements that the law recognizes a right to treatment, the access to medical treatment cases discussed above do little to challenge the prevailing assumption that mental health advance directives are solely concerned with medical treatment.The question of the scope of the right to ‘treatment’ is addressed in the next chapter.

Chapter 11

Best interests and choice

The importance of ‘housing’ or accommodation for the achievement and maintenance of health and wellbeing cannot be underestimated. As the right to health and social determinants of health perspectives show, the health effects of social disadvantage include the disadvantage that is compounded by a lack of access to health and social infrastructure (WHO 2007). As is summarized in a recent report, Mental Health and Development (Funk et al. 2010), right to health perspectives enable an articulation of the complex interaction between the social environment and the promotion of personal wellbeing. Although the World Health Organization (WHO) report addresses the CRPD in terms of the challenges faced in developing economies, the analysis is relevant to the experience of people with mental health conditions in developed societies. The human right to health and social determinants of health perspectives highlight the health effects of prejudice and discrimination. These perspectives adopt a social model of health and disability. They posit alternative solutions to the problem of compromised wellbeing, in which medical solutions are positioned within a broader social context.They point to discrimination in the provision of health care and social attitudes that are characterized by ignorance and prejudice. People with mental health conditions are more likely to be subjected to violence and abuse, and more likely to identify violence and abuse as a factor in the development or persistence of a mental health conditions.They are more likely to experience restrictions in the exercise of their civil and political rights, to lack effective access to health and social services, and be vulnerable to homelessness. They may also lack educational and income-generating opportunities and experience substantial disability and premature death (Funk et al. 2010: 8). Conversely, people who experience violence, sexual violence, inter-partner violence, chronic illness, HIV/AIDS, and social inequalities are more likely to develop mental health conditions. People with mental health conditions sometimes cite access to appropriate accommodation as their most pressing social need (Webb 2010). David Webb argues that homelessness or the experience of unstable accommodation as the single most important element in the deterioration of their health and mental health. Conversely, the ability to access stable suitable accommodation is

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reported as a critical element for the achievement of health and mental health. In developed western jurisdictions the question of finding suitable, affordable accommodation is a persistent issue. People with mental health conditions are more likely to compete unsuccessfully with other social groups for access to scarce housing resources (Isaac and Armat 1992). In Australia, for example, consistent reports over many years, including the Burdekin Report (1993), the Not for Service Report (2005) and the Senate Inquiry into Mental Illness (2006) have documented these issues. In western developed jurisdictions the provision of mental health care in the community, either by voluntary or compulsory arrangements, is the dominant the model of service delivery. Community-based care inevitably heightens the clinical focus on accommodation and living arrangements. This is emphasized whenever mental health laws provide for compulsory treatment in the community and empower clinicians to attach conditions about accommodation or living arrangements. Accommodation orders, where they are available, are likely to be sought when a person is being discharged from institutional care. The inclusion of ‘accommodation orders’ or ‘living conditions’ in discharge plans provides a new legal context in which the tensions between autonomy and protection in mental health law are played out. This chapter discusses new jurisprudence from the European Court of Human Rights (ECrtHR) and from the Supreme Court of Victoria, Australia, which recognizes the CRPD as part of the legal framework that governs health and health related decisions.This chapter discusses the recent decision of Stanev v Bulgaria (2012) (Stanev) and the Australian case of PJB v Melbourne Health State Trustees Ltd (2011) (Patrick’s case).These cases adopt a positive rights approach to the adjudication of accommodation matters by emphasizing the ability of the person to make decisions for themselves. The decision in Stanev (2012) and Patrick’s case (2010) show that courts are increasingly willing to recognize a positive entitlement to be involved in decisions about social care and housing. They also show that courts are willing to engage with the principle of respect for physical and mental integrity of the person in the context of a positive entitlement to housing and social care, and to acknowledge that people with partial capacity retain the right to make decisions for themselves. This chapter begins with a brief discussion of two earlier ECrtHR ‘accommodation’ cases, Johnson v United Kingdom (1997) (Johnson) and Kolanis v United Kingdom (2006) (Kolanis), in which these issues were not raised. It then considers the decisions in Stanev and Patrick’s case in detail.The chapter argues that the ‘accommodation’ jurisprudence opens an expanded role for mental health advance directives.

ECrtHR and the right to liberty Two cases brought before the ECrtHR in the 1990s illustrate the tensions that may surround the question of accommodation for people who have been subject to psychiatric detention. They also illustrate the limitations of interpreting

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the legal issues that surround transition and discharge solely through a prism of negative rights. Both Johnson and Kolanis were concerned with arranging suitable accommodation in the community after a period of forensic detention in psychiatric institution. The applications in both cases were bought as claims for breach of Article 5 on the right to liberty in the ECHR. Kolanis concerned the question of suitable accommodation and psychiatric supervision in the community. Ms Kolanis was subject to psychiatric detention following a conviction for serious assault and continued to suffer from a mental illness. At a review tribunal hearing in which it was agreed that she may be able to be discharged into the community, the review tribunal ordered that she be released to the care of her parents with psychiatric supervision. This order was contrary to the clinician’s view that she should be released to a hostel with psychiatric supervision. No psychiatrist could be found who would agree to the tribunal’s supervision order. Ms Kolanis therefore remained in detention until her the annual review a year later, at which time the order was revised.The question brought before the ECrtHR was whether her detention during that year breached her rights under Article 5 of the ECHR. The ECrtHR held that there was no breach of Article 5(1) because the ‘Winterwerp criteria’ which set out the grounds for lawful psychiatric detention were fulfilled (Winterwerp v Netherlands 1979). The ECrtHR found, however, there was a breach of Article 5(4) which refers to prompt review of deprivations of liberty, because no avenue of review was provided. Mr Johnson was also detained in a psychiatric hospital following a criminal conviction for serious assault. At a tribunal review in 1989, it was determined that Mr Johnson no longer suffered from a mental disorder. In light of Mr Johnson’s ‘unrealistic opinion’ of his ability to live in the community, however, the tribunal recommended that he continue to be detained until suitable hostel accommodation could be found (Johnson at [18]). As none could be found, Mr Johnson was eventually discharged from detention without conditions in 1988 after which time he brought legal action claiming that his right to liberty pursuant to Article 5 of the ECHR had been breached by the prolonged detention. The ECrtHR held that the ongoing detention created by the deferral to Mr Johnson’s release was in violation of Article 5(1) (Johnson at [67]). Nevertheless, the ECrtHR declined to require the immediate and unconditional release of people who were found to no longer suffer from a mental disorder. In the court’s view the responsible authority should be permitted to maintain ‘supervision over the progress of the person once he is released into the community and to that end make his discharge subject to conditions’ (Johnson at [63]). This is because the authority must consider both the person and the community wellbeing: the responsible authority’s exercise of judgment to determine in particular cases and on the basis of all the relevant circumstances whether the interests

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of the patient and the community into which he is to be released would in fact be best served by this course of action. (Johnson at [61]) The ECrtHR specified however that the detention must not be indefinite, and there must be safeguards in place to ensure that any deferral of discharge is consonant with the purpose of Article 5(1) and was not ‘unreasonably delayed’ (Johnson at [63]). With respect to the necessary safeguards, the ECrtHR found it unsatisfactory that the review tribunal lacked powers to ensure that a suitable hostel would be found within a reasonable time, lacked the ability to vary the terms of the hostel condition in view of difficulties encountered in finding a placement, and that there was no opportunity of review other than the annual review, and no mechanism of judicial review available. Both Kolanis and Johnson approach the question of lawful detention from the perspective of Article 5(1) and the right to liberty. The substantive question in each case was the availability appropriate ‘step down’ accommodation and the provision of services in the community. The ECrtHR appears to envisage judicial review as a mechanism that will prompt domestic courts to engage with the question of reasonable service provision, and views the domestic courts as the most appropriate forum to determine the proper balance between the competing interests involved in the cases. The court’s approach is not ‘convincing’ because it is far from clear whether the English courts have the jurisdiction envisaged by the ECrtHR (Bartlett et al. 2007: 46). Compared to the decisions of the ECrtHR concerning Article 8 jurisprudence discussed in the previous chapter, the approach taken in Kolanis and Johnson with respect to Article 5 is compatible with the ‘right to adjudication’ approach, but lacks the emphasis on an active engagement with the point of view of the person. In neither case were the views of the people involved considered by the court. Given the recognition of the interconnection of all human rights in the jurisprudence of the ECrtHR, Article 8 jurisprudence is likely to provide a more fruitful basis for the expansion of approach in Article 5 that considers the application of positive rights. The engagement of the ECrtHR with the kind of integrated analysis that is demanded by the CRPD is evident in the case of Stanev.

Incapacity, partial capacity and participation The ‘paradigm shift’ towards the recognition and adjudication of positive rights heralded by the CRPD is evident in the recent judgements of Stanev. In that case, Mr Stanev, who was subject to a partial guardianship order, brought a successful challenge to his enforced placement in a social care home. Mr Stanev had suffered from schizophrenia since 1975. He was declared partially incapacitated in 2000 on the grounds that he was unable to manage his own affairs and interests and unable to realize the consequences of his own acts. He was

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placed in a social care home for people with mental disorders. Prior to 2009 when some improvements were made to the facility, the social care home was unhygienic, decaying and dirty. Toileting facilities were execrable, it was rarely heated in winter, and the residents were provided with insufficient diet of poor quality (Stanev at [23–24]). Mr Stanev had been in stable remission without medication since 2006, at which time he had sought to be released from the home. Mr Stanev’s appointed guardian, who was the director of the care home, determined that as Mr Stanev’s old-age pension would be insufficient to meet his needs, the social care home was the best place for him to live. A central issue in the case before the ECrtHR was whether Mr Stanev’s decisions with respect to his living arrangements should be respected. The court found, by 13 votes to four, that there were violations of Articles 3, 5(1), 5(4), 5(5), 6(1), and 13 of the ECHR, but declined to examine whether there had been a violation of Article 8 of the Convention, taken alone and in conjunction with Article 13. It awarded Mr Stanev non-pecuniary damages of 15 thousand euros. In delivering its judgement the ECrtHR cited both Article 12 of the CRPD and Recommendation No R (99) 4 of the Committee of Ministers to Member States of the Council of Europe on Principles Concerning the Legal Protection of Incapable Adults (adopted on 23 February 1999 at the 660th meeting of the Minsters’ Deputies) (Recommendation No R (99) 4). Both documents indicate that any limitation of an person’s right to ‘consent or refuse consent to any intervention in the health field’ may be made solely on a protective basis, but must be proportionate to the loss of capacity and tailored to the person’s circumstances (Principle 3). The ECrtHR cited the following relevant sections of Recommendation No R (99) 4: Principle 2 – Flexibility in legal response 1. The measures of protection and other legal arrangements available for the protection of the personal and economic interests of incapable adults should be sufficient, in scope or flexibility, to enable suitable legal response to be made to different degrees of incapacity and various situations. 4. The range of measures of protection should include, in appropriate cases, those which do not restrict the legal capacity of the person concerned. Principle 3 – Maximum reservation of capacity 1. The legislative framework should, so far as possible, recognize that different degrees of incapacity may exist and that incapacity may vary from time to time. Accordingly, a measure of protection should not result automatically in a complete removal of legal capacity. However, a restriction of legal capacity should be possible where it is shown to be necessary for the protection of the person concerned.

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2. In particular, a measure of protection should not automatically deprive the person concerned of the right to vote, or to make a will, or to consent or refuse consent to any intervention in the health field, or to make other decisions of a personal character at any time when his or her capacity permits him or her to do so. Principle 6 – Proportionality 1. Where a measure of protection is necessary it should be proportional to the degree of capacity of the person concerned and tailored to the individual circumstances and needs of the person concerned. 2. The measure of protection should interfere with the legal capacity, rights and freedoms of the person concerned to the minimum extent which is consistent with achieving the purpose of the intervention. Principle 13 – Right to be heard in person The person concerned should have the right to be heard in person in any proceedings which could affect his or her legal capacity. Principle 14 – Duration, review and appeal 1. Measures of protection should, whenever possible and appropriate, be of limited duration. Consideration should be given to the institution of periodical reviews. 3. There should be adequate rights of appeal (at [73]). According to the ECrtHR both Article 12 of the CRPD and Recommendation No. R (99) 4 stress the importance of recognizing the decision making abilities of an person at all times, including after making a legal determination about to their legal capacity. In Stanev, although the ECrtHR did not consider it necessary to comment directly on Article 8 matters, the judgement is consistent with the principles that any limitation of integrity rights is unlawful, unless it falls within the exceptions contained in Article 8(2). Mr Stanev was formally subject to partial guardianship. According to Bulgarian law partial guardianship permitted the person to make supervised decisions with respect to his or her living arrangements. However, as the ECrtHR noted, Mr Stanev was subject to the . . . widespread practice in Bulgaria whereby once people were deprived of legal capacity, even partially, they were deemed incapable of expressing their wishes. (Stanev at [106]) Furthermore, the ECrtHR recognized that Mr Stanev was in the additionally difficult situation of having his wishes or preferences interpreted as an aspect of the symptomology of his mental illness, rather than as a legitimate expression of reasonable choice. The ECrtHR noted that

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In addition, it was clear from the medical documents that the applicant’s desire to leave the home had been interpreted not as a freely expressed wish, but rather as a symptom of his mental illness. (Stanev at [106]) The ECrtHR concluded: Having regard to the foregoing, the Court observes that the applicant’s placement in the home was not ordered ‘in accordance with a procedure prescribed by law’ and that his deprivation of liberty was not justified by sub-paragraph (e) of Article 5(1). Furthermore, the Government have not indicated any of the other grounds listed in sub-paragraphs (a) to (f) which might have justified the deprivation of liberty in issue in the present case. There has therefore been a violation of Article 5(1). (Stanev at [159–160]) The ECrtHR also noted that that no consultation with Mr Stanev had taken place and no current medical report had been provided. Overall, the ECrtHR acknowledged the practical effect of the discrimination experienced by people living with mental health conditions with respect to their ability to make effective decisions for themselves. It indicated that the law recognized positive obligations on the state to ensure that the relevant decision making processes are not coloured by discriminatory attitudes and practices, and not overlaid by an assumption that a person lacks the ability to make decisions. The ECrtHR held that the ‘choice’ about living arrangements expressed by Mr Stanev presented a rational assessment about the conditions in the social care home and the effects of those conditions on his health and wellbeing. Beyond the obligation to engage with the choices of the person in a meaningful way, the decision reinforces the obligation to ensure that social care arrangements do not constitute a health burden. Like the decision in Tysiac discussed in the previous chapter, the determinations with respect to individual choice and the ability to access adjudicative processes were essential components of the ECrtHR judgement. Stanev makes clear that the decision making process must be untainted by discriminatory attitudes.This is essential to ensure that the right to participate in the decision, which is recognized in Bulgarian law, is an effective right.

Patrick’s case and best interests in Victoria, Australia Patrick’s case in the Supreme Court of Victoria, Australia, has many similarities to Stanev. In Patrick’s case the Victorian Charter of Human Rights and Responsibilities (2006) provides the context in which the CRPD is recognized as part of the legal framework. In his judgement in Patrick’s case Justice Bell held that the Victorian Civil and Administrative Tribunal had failed to interpret law consistently with human rights, and had failed to act compatibly with human

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rights by appointing an administrator who would sell Patrick’s home against his wishes. Like Stanev, Patrick’s case highlights the character of guardianship regimes as legal frameworks that are intended to protect the rights and interests of people who are unable to make decision for themselves, and do so by recognizing as far as possible the capabilities of the person. At the time of the case, Patrick, who had a history of multiple admissions to psychiatric facilities over 20 years, was detained in a psychiatric facility subject to an involuntary treatment order. He partially owned and was financially responsible for a home to which he wished to return. In the opinion of the health service Patrick was incapable of living in the community, as was evidenced by repeated cycles of discharge, failure to take medication, deterioration and eventual readmission to a psychiatric facility. The health service concluded that it was in Patrick’s best interests to be placed in supported accommodation. A place was found in a residential facility. Patrick refused to travel to the facility. He absconded to his home and was returned to the psychiatric facility by police. The service then sought and obtained a guardianships order. It was envisaged that the appointed guardian would sell Patrick’s home in order to finance his placement in an aged care facility or other secure,but unspecified,accommodation. Patrick appealed the appointment of the order on grounds under the Charter of Human Rights and Responsibilities (2006). Justice Bell found that the administration order was invalid. He concluded that the appointment of an unlimited administrator was a serious infringement of Patrick’s human rights. The rights which are at stake are very important to Patrick, for they protect his interest in being able to choose where to live and to live in the home which he owns. He holds those rights, and they deserve protection and respect, on equal terms with everybody else even though he is an involuntary patient in a mental hospital. The appointment [of an administrator] infringes his human rights very seriously, as the administrator will take complete management and control of his money and other property, and probably sell his home. No sufficient purpose has been shown to justify such a serious infringement of his human rights, as he is not in a crisis (or anything like it) in terms of his health, accommodation or otherwise. He has not been found to be mismanaging his money or his home. It is not known whether transferring him to a hostel would be successful, temporary or permanent. (Patrick’s case at [373]) For the purposes of establishing the role that personal choice played in this decision some aspect of Justice Bell’s reasoning may be highlighted. In interpreting the Guardianship and Administration Act (1986) (Guardianship Act), His Honour discussed the three core principles of least restrictive means, the best interests of the person and the wishes of the person expressed in section 4(2) and their relationship of them to the principle of personal autonomy. His

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Honours regarded the three core principle as informed by the overarching principle of autonomy: Personal autonomy is inherent in the least restrictive means and the wishes of the person principles.The purpose of requiring the adoption of the least restrictive means is to leave the person with as much personal autonomy as possible over their personal and financial affairs.The same value is inherent in the requirement to give effect to the person’s wishes, ascertainable and wherever possible. Specific provisions of the Act emphasize the importance of promoting, maintaining and enhancing the personal autonomy of persons with a disability. (Patrick’s case at [18]) With respect to the principle of best interests, Justice Bell notes that the legislation recognizes that the best interests of the person are the primary consideration. His Honour recognized that the Tribunal’s decision to appoint the State Trustee as an administrator was a decision that was made on best interest grounds. However, the Guardianship Act also requires that: a guardian (s 28(2)(c)) and administrator (s 49(2)(a)) must exercise their powers in such a way that, as far as possible, encourages and assists the person to make reasonable judgments themselves. (Patrick’s case at [18]) In Justice Bell’s view the legislation is designed to protect and promote the autonomy of the person as much as is possible. He noted that while it is correct to say that only guardianship orders that are in the best interest of the person can be made, the best interest principle applies when the person is unable to make reasonable decisions for themselves. Prior to that determination, effect must be given to the person’s wishes wherever possible, with encouragement and assistance being given to the person to enable them to make reasonable judgements. His Honour summarized the relationship between the different obligations: The order could not be made unless it was in his best interests (s 46(3)). But that test did not apply unless Patrick could not make reasonable decisions about his estate by reason of his illness (s 46(1) (a)), appointing an administrator was the least restrictive option (s 46(2) (a)) and it was not possible to give effect to his wishes (s 46(2) (b)).Those conditions were not satisfied. (Patrick’s case at [202]) In this paragraph Justice Bell affirms that the protective powers contained in the Guardianship and Administration Act are intended to preserve the person’s autonomy as much as possible. In Justice Bell’s view Patrick retained the ability to make reasonable decisions with respect to his home despite his mental illness. Furthermore, if a decision is made on the grounds of best interests it must be the least restrictive option. Justice Bell concluded his analysis with this observation:

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. . . appointing an unlimited administrator was virtually the most rather than the least restrictive option which was reasonably available. (Patrick’s case at [373]) This comment indicates that even if the determination that Patrick can make reasonable decisions for himself is displaced, the appointment of an unlimited administrator remains contrary to the legislative scheme. As was observed in Stanev, the question of best interests is of relevance in situations where people are unable to make decision for themselves. It is a concept that may not be used to override the reasonable decisions of a person with a disability even when, in the opinion of others, the course of action chosen by them is not an optimal decision. Principles of autonomy require that the choices of people who are able to make decisions are respected. This is uncontroversial. The point that is emphasized by both Stanev and Patrick’s case is that all people, including those with mental illness, who can demonstrate the ability to make to decisions for themselves should be permitted to do so. This approach is consistent with the obligation in Article 12 of the CRPD to afford equal respect to people with disabilities in the operation of the law, and to provide people with disabilities with the support they may need to exercise their equality. In addition, should ‘measure with respect to capacity’ be required, Article 12(4) requires that such arrangements should respect the wishes of the person, and exist for the shortest time possible. Patrick’s wishes were well known. There was no evidence that his relationship with his home was severed, or that he was unable to manage the obligations associated with home ownership. Even if it were determined that Patrick was unable to make reasonable decisions because of his mental illness his wishes should still have been followed wherever possible. Furthermore, even if the administration order itself was put in place for only a short time, the long-term consequences of the irreversible sale of Patrick’s home would be inconsistent with the spirit of Article 12(4). On Justice Bell’s analysis such an arrangement would be inconsistent with legislation in Victoria. Rather than seeking to impose their view of what was in Patrick’s best interest, the health service may have been better served had they sought to establish a programme of support that would have enabled Patrick to return to the community with some safeguards against the anticipated deterioration in his health.

Discrimination and the CRPD Both Stanev and Patrick’s case highlight the principle of non-discrimination and the obligation to provide ‘reasonable accommodation’ in the CRPD. As Rebecca Brown and Janet Lord explain, reasonable accommodation with respect to the limitations produced by impairment should augment the decision making processes to ensure that the processes are tailored to the circumstances of the person (Brown and Lord 2011). This approach is enshrined in the purpose of the CRPD which is

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to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Article 1 Furthermore, the CRPD in its entirety prohibits discrimination of the basis of disability which is defined as any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation. Article 2 The CRPD defines reasonable accommodation as the necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms. Article 2 Defining participation as a mechanism of reasonable accommodation elevates the importance of choice and autonomy in the human rights analysis of protective legislative regimes. In this regard, it is not merely the fact of participation or the ability to express preferences and wishes that is significant. As was argued in Part 2 of this book, participation is a mechanism that is intended to protect the interests of the person and to assist in the process of ensuring that rights are not abstract or illusory. For this reason, laws ‘should not result automatically in a complete removal of legal capacity’ (Recommendation No R (99) 4 1999). In both Stanev and Patrick’s case an assessment of the actual capabilities of the person with respect to the particular decision that was required was an essential part of the judgement. In both cases the legal frameworks governing the decision are interpreted as frameworks that encourage the recognition of the decision making abilities of people with partial capacity. In Stanev, attention was drawn to the discriminatory attitudes and the assumption that people in Mr Stanev’s position were unable to make decisions. In Patrick’s case, Justice Bell used the principle of least restriction to highlight the heavy handedness of the intervention that was proposed. With respect to the question of choice, some points can be made about the significance of these cases. First, both cases uphold the validity of choices expressed by a person who may be thought to have limited capacity. It is usually

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assumed that the law recognizes mental health advance directives that are made by people with capacity. These cases indicate that laws that adopt a binary distinction between capacity and incapacity may not be regarded as compatible with human rights principles. If the decisions of people with partial capacity are respected, or at least the decisions for which they retain decision making ability, it follows that the expression of those wishes in an advance statement should be regarded as equally valid. In Stanev, the ECrtHR refers to Principle 3 of the Recommendation No R (1999) 4 which stresses that the principles with respect to preserving the maximum capacity of the person extend to . . . the right . . . to consent or refuse consent to any intervention in the health field, or to make other decisions of a personal character at any time when his or her capacity permits him or her to do so. (Stanev at [73]) Mr Stanev was no longer mentally ill. The argument that the continuation of his accommodation arrangements was for his health was rejected in light of this finding and with reference to the evidence that the accommodation was detrimental to his health. In Patrick’s case Patrick continued to suffer from a mental disorder. Justice Bell did not accept that the administrative order was a lawful response to the problem of managing Patrick’s physical and mental health, that would break the cycle of repeated discharge, ‘decompensation’ and re-admission. While the basis of His Honour’s decisions is not entirely clear on this point, Justice Bell draws attention to the failure to take Patrick’s wishes into account and to seek a solution that was acceptable to him.As both the individuals in Stanev and Patrick’s case were able to make decisions and express their choices with respect to their respective accommodations, the formal expression of such wishes in a mental health advance directive may not have been of assistance. Nevertheless, in any legislative scheme that requires a decision maker to take a person’s wishes into account, a formal document made by the person recording such wishes should be given due respect and weight. In Patrick’s case, Justice Bell indicated that the legislative scheme requires that the person’s wishes should be followed if they are known. By completing a mental health advance directive, Patrick could ensure his wishes were known, and could therefore be followed should he become unwell. Overall, to give proper respect to human rights principles requires domestic legislation to acknowledge the decision making abilities of people with partial capacity and to include them in decision making processes. Domestic legislation should also include safeguards preventing assumptions being made that people with a mental health condition are unable to make effective decisions. The next chapter of this volume discusses the impact of the recognition of positive rights for the future of mental health advance directives. It argues that the CRPD imposes an obligation on state parties to recognize the choices of people with mental health conditions in the provision of mental health care.

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To so do requires the development of approaches in the care and treatment of people with mental health conditions that place a high value on a process of communication. This enables people with mental health conditions to express their choices about treatment, social care and any other relevant matters, and have those choices respected to the maximum extent possible. Mental health advance directives provide a vehicle that may promote welcome communication and give substance to the human rights approach that incorporates the recognition of positive rights.

Chapter 12

Consensus, recovery and potential

The incorporation of mental health advance directives into domestic law has progressed on the basis of a ‘loose consensus’. There is a general willingness to entertain the concept of mental health advance directives, and a reluctance to engage with the ‘hard’ question of enforceability. Is it possible to make sense of a broad consensus that is underpinned by a persistent dissonance about mental health advance directives? The notion of a loose consensus refers to the idea that the law may adopt an idea that is generally agreed although the details of it are not entirely explained. John Rawls refers to this phenomenon as an ‘overlapping consensus’ (Rawls 2005). Cass Sunstein similarly describes the idea of an overlapping consensus as a general agreement about the value or utility of a concept or law, despite conceptual disagreement about its elements or foundations in theory. Sunstein refers to this kind of an agreement as an imperfectly or ‘incompletely theorized agreement’ (Sunstein 1995). The notion of incompletely theorized agreements therefore refers to ideas that may be developed in practice and policy before a complete account of how they will ‘work’ in law has been developed. Mental health advance directives appear to be an example of an incompletely theorized agreement. In the case of mental health advance directives, the agreement is maintained by avoiding the question of enforceability. Nevertheless, the loose consensus around mental health advance directives is consistent with acceptance of the principle that people with mental health conditions should be provided with same entitlements as are available to other people who seek health-care services. It is consistent with the recognition that exercising choice is clinically advantageous. It is consistent with new clinical perspectives, such as ‘personcentred psychiatry’, ‘recovery’ perspectives and supported decision making.

Recovery and person-centred care Person-centred psychiatry recognizes that the therapeutic relationship is based on mutual respect and genuine participation in treatment decisions (Mezzich 2011). Juan Mezzich describes person-centred psychiatry as an approach that promotes clinical care:

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of the person (the totality of the person’s health, including its ill and positive aspects), for the person (to assist in the fulfilment of the person’s life project), by the person (with clinicians extending themselves as full human beings, scientifically grounded and with high ethical aspirations), and with the person (in respectful and empowering collaboration with the person who is presenting for care). Mezzich 2011: 5

According to Mezzich, the key elements of this approach are: • • • •

a broad biological, psychological, socio-cultural and spiritual framework, attention to both ill health and positive health, person-centred research on the process and outcome of clinician – patient – family communication, diagnosis, clinical care and health promotion, and promotion of and respect for the autonomy, responsibility and dignity of every person involved. Mezzich 2011: 6

Person-centred psychiatry provides a clinical framework that is compatible with psychiatric advance directives as a vehicle for the promotion of the dignity of the person. Person-centred psychiatry is aligned with the objectives and principles of the recovery movement. The ‘recovery movement’ refers to the development of recovery philosophies and principles as the centrepiece of mental health policy in English-speaking jurisdictions (Davidson, Rakfeldt and Strauss 2011; O’Hagan 2012). For example, the Hertfordshire Partnership NHS Foundation Trust has developed ‘Principles of Recovery Oriented Practice’ as a platform for service delivery. The five recovery principles refer to ‘person uniqueness’, ‘real choices’, ‘attitudes and rights’, ‘dignity and respect’ and ‘respectful partnerships’ (Hertfordshire Partnership NHS Foundation Trust 2012). The principle referring to ‘attitudes and rights’ aims to ‘promote(s) and protect(s) people’s legal and citizenship rights’.This is consistent with the Trust’s active approach to the promotion of mental health advance statements. The recovery framework developed by the Hertfordshire Partnership NHS Foundation Trust is internationally influential, providing a model for policy development in Australia (Victorian Government Department of Human Services 2007). Recovery perspectives are informed by a renewed interest in the literature in holistic medicine and social psychiatry (Ghaemi 2010). Like person-centred psychiatry, recovery perspectives adopt a human rights approach that is based on respect for the autonomy and dignity of the person. Recovery perspectives also recognize contextual and holistic perspectives and the notions of health and wellbeing. They typically incorporate a strong rights framework, and

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support the introduction of laws that respect a person’s treatment choices (O’Hagan 2012). Mary O’Hagan describes the four tenets of recovery as hope and belief in the potential of the person, self-determination over one’s life, the choice of a broad range of services, and equal participation in their communities (O’Hagan 2012). O’Hagan describes compulsory treatment powers as the ‘elephant in the recovery room’. In her view compulsory treatment powers fundamentally undermine the recovery approach: ‘Legal coercion erodes all the cornerstones of the recovery philosophy, yet it remains a core response in our mental health systems’ (2012: 1). Recovery philosophies aim to shift the focus of mental health systems towards the prevention of mental illness by developing services that facilitate recovery, work in collaboration with service users, and offer advance directives and choices for people in crisis (O’Hagan 2012). Writing in the United States, Richard Bonnie emphasizes the potential of mental health advance directives to reorient the mental health system towards recovery. Bonnie recognizes that a recovery-oriented system would draw people into treatment because the system would provide what people need and want. In such a system, he argues, compulsory treatment would be genuinely reduced to an instance of last resort. Recovery envisions a process by which persons experiencing a mental disorder take control of their lives, including planning for care in a crisis, . . . which involves execution of advance directives. Bonnie 2012: 411 In Bonnie’s view, the use of advance directives will structure the legal model of care, even in crisis, as one that has shifted ‘from coercion to contract’ (Bonnie 2012: 411). Ideally, advance planning will shape the way families, clinicians, and even law enforcement officers and judges respond when a client’s decision making becomes impaired, allowing them to share information and provide treatment and support in accord with previous authorizations. Indeed, the term ‘coercion’ may be out of place in these contexts because consent, when needed, has been provided by the client in advance. Bonnie 2012: 411 Both patient-centred psychiatry and recovery perspectives posit an influential role for mental health advance directives as tools for communication. The aim of the communication is to facilitate engagement with treatment and care, by encouraging the creation of treatment approaches that are acceptable to the person. The need for coercive treatment will be minimized, and people with mental health conditions will seek care (Bonnie 2012). Whether or not mental

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health advance directives are able to drive system change of this magnitude remains to be seen. It is an optimistic vision. The expectation that advance directives may prove to be a vanguard for systemic change is challenged by the experience of implementation of mental health advance directives in jurisdictions where mental health advance directives in the United States and in the jurisdictions discussed in Part 2. Research investigating the use of mental health advance directives has shown consistently high levels of interest among users of mental health services for mental health advance directives, but a slow uptake (Swanson et al. 2006a). Commonly encountered barriers to the use of mental health advance directives are the lack of ready access to the documents in a crisis, a lack of clinician familiarity (Swanson et al. 2006b), and legal uncertainty about their application (Szmukler 2006). Strategies to address legal uncertainty and improve clinical compliance with advance directives have included the use of trained facilitators to assist consumers in the development of effective instruments, collaborative formulation of directives with the clinical team and formal joint crisis planning that involves the consumer, treating clinicians, the health service, independent clinicians and independent advocates in the formulation of crisis plans (Henderson et al. 2004; Swartz et al. 2007). In the United States, strategies to improve clinician familiarity with advance directives focus on professional education and include the MacArthur Foundation supporting a new National Resource Center on Psychiatric Advance Directives (Szmukler 2006). The effectiveness of these strategies remains the subject of ongoing research, but points to the importance of accompanying the introduction of psychiatric advance directives with appropriate resourcing, training, community education and professional development (Hoffman et al.1996; Srebnik and Brodoff 2003; Szmukler 2006). Although some research has indicated that comprehension and the ability to complete the documents are not significant factors (Amering and Schaffer 2007), consumer-based barriers have proved to be significant hurdles for the effective implementation of mental health advance directives.This has prompted further investigation of the conditions that might foster the completion of mental health advance directives (Amering et al. 2005; Swanson et al. 2006b; Adams et al. 2007; Henderson et al. 2010). Nevertheless, it is reported in Scotland (McManus et al. 2009) and anecdotally in New Zealand that users of mental health services are reluctant to complete mental health directives when they lack confidence that the documents will be respected. If this is information is correct, lack of enforceability is itself a barrier to implementation. Research into barriers to the successful introduction of supported decision making also sheds light on issues that may be relevant to the implementation of mental health advance directives. Some supported decision making research has shown that there is a need to ensure that supported decision making processes are facilitated by the allocation of professional time. Consumer-related barriers to supported decision making include the person’s fears, past trauma, past

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experiences in the mental health system, passivity, the depth of the mental health crisis and the person’s level of literacy (Mahone et al. 2011).These factors and experiences influence the ability of the person to communicate their views and wishes. Practitioners related that barriers to supported decision making include the practitioner’s lack of knowledge about alternative treatments, whether the practitioner is able to use person-first language, and whether the practitioner was able to employ ‘listening skills’ (Mahone et al. 2011: e35).These findings suggest that communication is the core issue for the effective provision of supported decision making. This observation should be unsurprising. It is well established that principles of inclusion in health care must be supported by strategies that enhance the communication between the health care professionals and the people who are seeking health care. In any health setting, people with impaired decision making, people with low levels of formal education, people who are unfamiliar with the health system and people who speak languages other than the one used by practitioners, will require additional support to enable them to participate in communicative processes. Users of mental health services report that an appreciation of communication difficulties experienced by people with mental health conditions is not well developed in clinical practice. They argue that it is the overlay of discrimination and prejudice that characterizes the mental health sector and prevents the development of communicative exchanges. Easy recourse to compulsory treatment obviates the need to engage with user perspectives. If this analysis is correct, the overarching problem in mental health is an impoverished culture of clinical communication. Without strategies to improve the communicative skills of the mental health workforce, mental health advance directives and other supported decision making strategies are unlikely to have the positive effects that are envisaged by Bonnie and O’Hagan. The communication barriers experienced by people with mental health conditions extend to questions of literacy. Mental health advance directives are often conceptualized as written documents, requiring relatively sophisticated literacy skills. Some people with mental health conditions may have inadequate literacy skills. It is estimated that the functional illiteracy rates in developed nations range between 10 and 20 per cent, with higher estimates of rates of literacy and communication problems recorded in disadvantaged social groups (Snow and Sanger 2011). Mental health advance directives, as they are currently conceived, require a sophisticated engagement with the process of formulating, writing and signing a document. This suggests that the introduction of them must take account of communicative disadvantage. Moreover, it can be argued that a failure to take account of the communication deficits experienced by people with mental health conditions should be understood as an example of a barrier that contributes to disability. Reasonable accommodation principles require that steps be taken to ameliorate the effects of communication deficits. Beyond the question of person’s individual need, the obligation to provide reasonable accommodation may require the provision of programmes to

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enhance the skills of a health workforce to communicate effectively with people who are in their care. The development of communicative literacy also requires mental health professionals to appreciate and respond to the broader social context in which health decisions are made. For example, Van Dorn reports that in a recent study of attitudes to mental health advance directives amongst a cohort of Latino patients, 13 per cent of interviewees reported feeling uncomfortable with legal documents (Van Dorn et al. 2010). It is likely that a similar proportion of people in any population group would be uncomfortable with legal documents. It may also be the case that that experiences of social marginalization and disempowerment may discourage engagement with sophisticated and unfamiliar mechanisms. Mental health advance directives are unlikely to deliver the benefits that are envisaged if these underlying issues of unfamiliarity, uncertainty and disempowerment remain unresolved. However, they may also provide an opportunity to acknowledge and redress power imbalances in clinical relationships, by modelling respectful communication practices, taking the person and their concerns seriously, considering the person’s solution to a treatment problem, and honouring the person’s wishes wherever possible.

The potential of mental health advance directives Putting these practical constraints aside, giving people a ‘voice’ in the decision making process glosses over the questions about decision making authority and the extent to which a person may have control over his or her health decisions. The principles of equality and non-discrimination demand that people with mental health conditions are afforded equal entitlements to health care. As is the case with people with disabilities, additional measures may be necessary to accommodate disadvantage. The appropriate starting point for the analysis of whether people with mental health conditions have access to health care ‘on an equal basis with others’, therefore, is to consider whether the people with mental health conditions are equally entitled to make decisions about their own health care. In general, the principle is that all people seeking health care are entitled to make their own decisions about medical treatment in accordance with the high value that is given to the principles of bodily integrity and self-determination. As is discussed elsewhere in this volume, the principle of informed consent protects bodily integrity and self-determination with respect to health care by regulating the relationship between the person seeking medical advice and the person who provides the advice. It encapsulates a human rights approach, encompassing positive entitlements and providing important protections against human rights abuse. In theory, voluntary mental health treatment should provided on the same basis as other health care. Informed consent principles and the absence of coercion should be the norm. Accordingly, mental health advance directives in the voluntary context should apply in the same way as

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other advance directives. The critical difference between mental health and general health is that compulsory treatment powers inflect the clinical context. Mental health decisions are made in the ‘shadow’ of compulsory mental health law. As the next section explores in more detail, understanding the contribution that mental health advance directives might play in resolving the ambiguities that arise because of the operation of compulsory treatment powers may assist in resolving the hesitation to provide a strong legal basis for them.

Capacity principles A useful way to begin a human rights analysis of the interaction of mental health advance directives and compulsory treatment powers is to extend the analysis of informed consent contained in Chapter 5.There are two recognized exceptions to the principle of informed consent. These are the principle that treatment may be provided in an emergency, and the principle that treatment may be provided to protect the health and wellbeing of the person, or of other people. In practice, the latter exception applies almost exclusively to people with mental health conditions. On that basis it warrants careful analysis. The former principle, that mental health treatment may be provided in an emergency, is consistent with the operation of general health law.The emergency principle provides a straightforward and easily understood rationale of the provision of mental health treatment without informed consent. Because the rule is narrowly defined in the common law, however, mental health legislation generally provides for the expansion of the principle in the mental health context. Applying the emergency principle to the mental health context provides a rationale for the provision of treatment when a person presents with a severe mental health crisis which is commensurate with the operation of general health law. The principle accepts that treatment may be provided if the intervention is limited, competent, and prevents suffering. This idea is encapsulated by the European Court of Human Rights (ECrtHR) in the Winterwerp principles expressed in the foundation case of Winterwerp v Netherlands (1979) (Winterwerp). Winterwerp provides that the person must be reliably shown to be of unsound mind, that mental disorder must be of a kind or degree warranting compulsory confinement, and the validity of continued confinement depends upon the persistence of such a disorder ([at 39]; Stanev [at 145]). It is generally accepted that the principle of emergency applies in the absence of a countervailing authority. For example, if there is a proxy authority or a valid mental health advance directive, the decision of the proxy or the mental health advance directive should prevail if it is known. Furthermore, from a human rights perspective, the known wishes of the person, whether or not they are formally documented, should be sufficient authority to modify the emergency principle. Mental health laws may provide authority to provide treatment in this situation. If the authority contained in mental health legislation is able to override the decisions of a proxy decision maker or the content of a

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valid mental health advance directive, that authority must be carefully justified on human rights grounds, whether not the exercise of power is in accordance with the legislation. The human rights analysis provided in this book suggests that the provision of treatment to a person in a mental health crisis, whether it is authorized by emergency principles or pursuant to mental health law, should be governed by the person’s known wishes, the decisions of the proxy decision maker or the mental health advance directive wherever possible. To do otherwise pays insufficient regard to the principles of autonomy and self-determination and continue to set a different standard of equality for people with mental illness. It is consistent with principles of equality and non-discrimination because it provides an equivalent decision making framework to that which is available to people who are not disabled. It is also consistent with human rights principles that treatment that is provided to preserve the safety and wellbeing of the person may be provided by a psychiatrist in the absence of another authority to provide treatment. As is discussed more fully below, however, the emergency principle is insufficient to provide a sound rationale for ongoing medical treatment. In the context of an immediate mental health crisis, if it is accepted that a mental health advance directives may govern the decision, it must be established that it is valid and applicable to the situation. Evidence that the person understood the effect of the direction and intended it to apply to the circumstance is relevant. If, for example, a person has prepared a specific ‘crisis plan’, it is likely that the purpose and consequences of the directions contained in it are well understood and intended to apply. If the content of an advance direction in mental health is able to be followed, there is a remaining question about whether a countervailing state interest requires that the person’s human rights be limited in the particular circumstance. Given the high value that is placed on self-determination and informed consent in the human rights framework and the recognition of positive entitlements to health care, it can be expected that the scope of the countervailing state interest is narrowly construed. Whether mental health advance directives include requests for a particular medical treatment, or a refusal of treatment, they should hold sway unless the direction contained in them falls beyond the range of reasonably available treatments or approaches in the relevant health context. With respect to refusal of treatment, an analogy can be drawn between the refusal of mental health treatment and the refusal of blood products on religious grounds. As the court noted in Malette v Shulman (1990) medical information is irrelevant to the refusal of blood products on religious grounds. In that context, people who refuse blood products are generally well aware that the exercise of their choice will arise in life-threatening situations. Beyond this observation, there is no real nexus between medical information and the decision to refuse blood products, other than to ascertain that the person understands the gravity of the decision. Once it is established that the person has made a valid decision,

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the question to be determined is whether or not the state has an overriding responsibility to intervene to save the person’s life. Judge Robbins resolved the matter in Malette v Shulman by finding that the state’s value in nurturing independent ethical reasoning outweighed the state’s interest in preserving life. Mental health treatment is sometimes refused on religious or ethical grounds. Following the Malette v Shulman rationale, such refusals should be respected regardless of the consequences to the person. In this case, mental health advance directives provide an important vehicle for communicating the decisions and outlining the basis for them. Although the principle is often cited in the case law as an entitlement ‘to refuse treatment for any reason or for no reason at all’, documentation of the reasoning that underpins the decision should assist in ensuring that a person’s values, beliefs and interests are respected. A disadvantage of drawing a full analogy with Malette v Shulman as the basis for the refusal for treatment is that the refusal of mental health treatment may be made specifically on medical grounds. If refusals of mental health treatment are made on medical grounds, the quality of the medical information, the exchange of information between the person and the clinical team, and any discussion about the information that is provided should become a relevant consideration. For example, a person who refuses a particular drug on the basis that in their experience the drug produces specific, unpleasant or dangerous side effects, such as a desire to commit suicide, is entitled to have that information given appropriate weight.The information is both clinically and legally relevant. Providing information to clinicians about adverse side effects is equivalent to a situation in which a general health patient provides information about an adverse reaction to prescribed medication, such as an allergic reaction to antibiotics. As it is well established that many psychotropic treatments have unpleasant or unwanted side effects, dismissing such complaints on the basis that the person is ‘delusional’ may be legally and clinically problematic. As in other areas of health, treatment with known side effects, if it is provided at all, should only be provided in conjunction with the provision of full information about them, which includes a process of communicating to the person the possibility of the side effects occurring, how the person may identify the side effects, and what action may be taken should they occur. A clinician who fails to accord with professional standards may be exposed to legal consequences in the same way that a clinician who incorrectly administers medication to a person with a known allergy is exposed.There is a professional, ethical and legal obligation to take account of the history that is provided by the person. Mental health advance directives may provide a mechanism that enables relevant clinical information to be recorded and communicated to the treating team. The potential of mental health advance directives to inform clinical decisions in this way may be overlooked if there is confusion about the nature of the interrelated responsibilities that contribute to the decision making process in health care. As the ECrtHR explained in Glass v UK (2004), patients are not obliged to accept treatment, and clinicians are not obliged to provide treatment

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that they deem to be inappropriate. These two poles of the decision making process are bound together by the principles of informed consent which requires treatment decisions to take account of the particular circumstances of the person. Informed consent, when considered as a human rights concept, is a complex process.To deliver its promise, it must be understood as an open, communicative process that relies on an exchange of information and a genuine negotiation about clinical decisions. In any health context informed consent may be seriously compromised by the uneven relationship of power. In mental health, the dynamics of the informed consent process may be even more complex. For example, David Oaks reports that he provided consent to ECT treatment during a compulsory admission to a psychiatric facility because he hoped he would die under the anaesthetic (Oaks 2011). In his view, because the delivery of mental health services is infused with force, fraud and fear, clinical relationships are so seriously undermined that the communicative process is devoid of meaning (Oaks 2011). In clinical contexts that are compromised by coercion, mental health advance directives may provide an important correction, by providing an opportunity to reincorporate principles of voluntariness into the mental health context. The nexus between medical information, the acceptance or refusal of mental health treatment and the question of informed consent has not been well recognized in the case law concerning mental health advance directives. Consent processes may be difficult when there is clinical uncertainty, and more difficult when they concern decision about future care in uncertain circumstances. Mental health advance directives may provide a useful adjunct to the decision making environment by enabling people to authorize a planned intervention at a future point in time, the point of planned intervention being based on criteria that are acceptable to the patient. For example, an artist may identify the cessation of artistic work as a marker for a planned intervention. Using mental health advance directives in this way may allow a person’s current refusal of treatment to be respected, while providing a reasonable safety net if their condition deteriorates. The potential of mental health advance directives as a method of planning future intervention is frequently overlooked. As noted above, justification for the provision of ongoing medical treatment must be found on a basis other than the rationale that justifies emergency intervention. Human rights principles require both general health and mental health treatment to be provided only with informed consent. Once a person has regained the ability to make his or her own decisions for themselves, treatment should should be provided on a voluntary basis. As the injunction in Winterwerp indicates, from a human rights perspective, the authority for imposed ‘confinement’ ceases once the mental illness is dissolved. Treatment without consent should not be provided, unless a valid authority is in place, such as that which may be provided in a mental health advance directive. Requiring the completion of a mental health advance directive as a standard feature of clinical

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practice maximizes the likelihood that treatment may be provided with the authority of the person. Ongoing care raises further questions about the operation of capacity principles. If it is accepted that the conceptualization of capacity is decision specific, it is possible to argue that any person may regain the ability to make decisions about a broad range of personal matters, but to lack the ability to make decisions about pharmacological treatment. This reasoning may be thought to provide a valid rationale for the validity of community treatment orders that require compliance with medication. People with mental health conditions argue, however, that a determination that the person lacks capacity with respect to treatment decisions is more likely if the person expresses a disinclination to adhere to a recommended treatment regime. A determination of ongoing or permanent incapacity with respect to treatment decisions carries with it the possibility that the person will remain subject to compulsory care orders. It also carries the possibility that a person will be unable to make a valid mental health advance directive to govern their future care. In this situation, it may be argued that the ongoing imposition of treatment remains valid because it upholds the principles of protection and positive entitlement for people who are unable to make decisions for themselves. Human rights standards require, however, that protective frameworks are appropriately limited and adhere to the least restrictive principle.These principles serve to guard against the manipulation of capacity criteria to support the imposition of a ‘best interest’ approach. The point being made here is that the validity of the order will depend on an analysis of the proportionality of the limitation on human rights. Providing compulsory ongoing care without reference to the wishes of the person is contrary to human rights standards, even if the imposition of care is justified on protection grounds. From a human rights perspective, the person’s wishes, whether or not they are expressed in a valid mental health advance directive, should be respected at all times. Completing a mental health advance directive may assist in identifying an agreed approach to treatment. It may also enable interventions to be planned for the future, should the person’s decision to cease or change treatment prove to be less successful than they hoped. A mental health advance directive may assist, whether or not the person is deemed to have capacity. The contemporary conceptualization of capacity as a functional, decision-specific test permits a generous interpretation of the decision making abilities of people with mental health conditions. As the MacArthur studies show, the assumption that people with mental health conditions who are admitted involuntarily to psychiatry facilities lack capacity is strongly held and frequently misplaced (Grisso and Appelbaum 1998). Many people who experience mental health crises may be limited in their ability to communicate effectively, while retaining capacity to make treatment decisions. This observation highlights the role that mental health advance directives can play as a communicative device. If a person has not lost decision making capacity, but is experiencing difficulties communicating, the mental health advance

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directive provides an opportunity to express the decision. Notwithstanding the observation that some legislative models include the inability to communicate as an element of incapacity, in this situation the mental health advance directive augments, rather than usurps, the decision making authority of the person. Ultimately, a functional capacity test may only operate in a permissive way if the test is administered with a non-discriminatory approach to the evaluation of the person’s abilities. The provision of mental health treatment without informed consent for the protection of others also warrants some comment in this context.The imposition of mental health treatment, without informed consent, on the basis that the treatment will protect others from harm is yet to be the subject of an extended human rights analysis. One argument in support of enforced treatment may be that intervention is justified on the basis that the state is entitled to limit the human rights of some people, in order to fulfil its protective obligations to other citizens. A human rights approach to determining the scope and validity of the state’s power to limit a person’s human rights on this basis also requires an analysis that is grounded upon principles of proportionality. For example, as is discussed earlier in this volume, the ECrtHR has an approach in considering the meaning of the qualifying criteria for the limitation of Article 8(1). Article 8(1) rights are qualified rights and may by limited according to Article 8(2). The limitation must have a clear legal basis ‘according to law’, it must pursue a legitimate aim such as ‘the protection of the rights and freedoms of others’ and be ‘necessary in a democratic society’ (Article 8(2)). The latter requirement has been interpreted as the need to have ‘a good reason’ for the interference in the sense that interference with the rights must be proportionate to the goal that is to be achieved, and be no more than is necessary in the circumstances. How a ‘good reason’ is defined, and whether it provides a sufficiently high threshold for the limitation of human rights, is yet to be addressed by the ECrtHR. If there is an alternative, less intrusive, way of achieving the same aim then the alternative measure should be used. A human rights approach requires that when there is an exercise of such authority by the state, or by an authority acting on behalf of the state, the interference with a person’s rights should be subject to analysis that adopts the proportionality principle. Appreciating the person’s wishes, including those that are expressed in a mental health advance directive, will be relevant to determining the scope of the limitation that the state proposes when it decides to impose compulsory psychiatric treatment for the protection of others. Furthermore, those wishes will be relevant to identifying possible alternative courses of action, in order to address the principle of the least restrictive alternative. One of the tensions surrounding the incorporation of human rights principles in domestic health law is the shift away from broadly tolerant view of medical opinion as is encapsulated in the ‘Bolam principle’, toward a close analysis of the balance between freedom and limitation that is required by ‘proportionality’ in the human rights approach. As is noted above, the Bolam principle provides

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an insufficient basis for a human rights analysis because it refers only to the standard of objective medical opinion. It does not consider the situation or perspective of the person, their preferences, and the effect or outcome of the medical decision. It may be concluded that the Bolam principle, which seems to linger in the case law, reflects a notion of medical authority that has limited relevance in a human rights analysis. The final matter raised by mental health advance directives relates to their content. As is demonstrated in the foregoing discussion, it is assumed that mental health advance directives are concerned with provision of pharmacological treatment. Modern mental health laws tend to adopt a broad definition of ‘treatment’ that usually encompasses a range of interventions other than pharmacological treatment. Furthermore, mental health laws that include the power to impose compulsory treatment in the community often include powers that enable compulsory orders to be made with respect to living arrangements. Users of mental health services report that they wish to include information about preferences about a whole range of matters, including accommodation matters, in mental health directives. This is entirely consistent with the scope of the treatment powers typically contained in mental health laws. As discussed in Chapter 2, the international human rights law clearly recognizes the justiciability of economic, social and cultural rights. In terms of what might be viewed the appropriate scope of mental health advance directives, it is commensurate with the expansion of psychiatric power and with human rights principles that they document a full range of relevant matters including the person’s views about preferred accommodation. Where psychiatric orders include accommodation orders the person’s preferences as expressed in a mental health advance directive remain pertinent, and should be given significance. Furthermore, content about accommodation, social care or related matters may be immediately enforceable on ‘reasonable accommodation’ grounds. If the content is subject to the principle of progressive realization, which may be the case, the obligation to initiate processes that will work toward addressing the person’s social care needs remains. Considering the human rights dimension of the question of social needs will enable the practical potential of mental health advance directives to be situated in more completely theorized legal context. Providing a completely theorized account of mental health advance directives is beyond the scope of this book. Nevertheless, the foregoing analysis highlights several issues that are relevant to the effective development of mental health advance directives. Mental health advance directives have a role to play at all levels of the decision making process in mental health. They provide a mechanism that assists in the resolution of legal, ethical and practical ambiguities by augmenting the decision making process in mental health with informed consent principles. From a human rights perspective, mental health advance directives have a broad role to play in reorienting mental health systems towards recovery and person-centred care.The above analysis suggests that for this to be achieved mental health advance directives should be placed in a robust legal

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framework. This observation challenges the overlapping consensus to consider the status of mental health advance directives in law and the basis upon which an expanded consensus may be achieved.Whether or not a sufficient agreement to support a broader role for mental health advance directives can be obtained remains to be seen. The above analysis begs consideration of what might be regarded as a robust legal framework.This question is addressed in the following discussion about enforceability.

Part 4

Conclusion

Chapter 13

Beyond consensus

Mental health advance directives have tantalized advocates for the human rights of people with mental health conditions for three decades. Originally conceived as a legal instrument to secure a right to refuse unwanted psychiatric treatment, they stand poised to give substance to the new era of human rights envisaged by the CRPD (Lawson 2007). As the preceding chapters in this part have shown, the reconceptualization of mental health advance directives will require the further development of domestic law. For that to occur, the contradictions that lurk beneath the loose consensus may need to be identified and addressed. An underlying obstacle for the development of the mental health advance directive debate beyond the loose consensus is its current isolation from the advance care planning practice in general health. Advance care planning is a global movement that is currently developing rationales and practices that support planning for future care (Marquis 2001; Swota 2009;Thomas and Lobo 2011). The advance care planning movement engages with the notions of choice, entitlement and self-determination to deliver optimal health care. The mental health advance directives debate has tended to remain isolated from the broader advance care planning movement, despite shared themes and objectives. From a human rights perspective, the failure to develop approaches in mental health that are commensurate with those that are available to the wider community reflects the entrenched discrimination that pervades the mental health field. At this basis the argument in this book is simple. Mental health advance directive laws and practices have lagged behind the development of advance care planning in general health. Basic principles of equality and nondiscrimination require the development of mechanisms that enable people with mental illness to access advance care planning in the same way that other people do. In addition, reasonable accommodation principles require the provision of special support to ensure that people with mental health conditions are able to access the services they need. This might entail, for example, the facilitation of mental health advance directives (Swanson et al. 2006b) or the introduction of decision making advocates (Rosenman et al. 2000).

160 Conclusion

Soft and hard enforceability To borrow from Mary O’Hagan, the question of ‘enforceability’ remains the ‘elephant in the (mental health advance directive) room’ (O’Hagan 2012). Enforceability is a question raised by users of mental health services, advocates, clinicians, lawyers, judges and tribunals alike. The complex regulatory nature of health and mental health law means that the question of enforceability may always remain open. The debate about enforceability, therefore, is one about ‘weak’ or ‘strong’ legal models. In Commonwealth jurisdictions the legislatures have tended to place mental health advance directives in weak legal frameworks. In weak legal frameworks, as is the case in England and Wales for example, mental health advance directives are subordinate to mental health laws.This approach reflects an assumption that the weak recognition of mental health advance directives will encourage the development of good clinical practices. The approach is typically justified on the basis that the purpose of such laws is to clarify the common law, promote rights, and rebut the prevailing assumption that the principles of advance care planning do not apply in mental health settings. It appears to support new practices while avoiding ‘the refusal’ problem. One of the contradictions posed by the adoption of a weak legal framework for mental health advance directives, however, is that despite the rhetoric of rights such laws may represent an example of what Meckled-García and Çali (2006) describe as the formal limitation of rights. In Meckled-García and Çali’s view, the enactment of specific legislation often represents a limitation of human rights. Paradoxically, the articulation of rights objectives in legislation could provide a basis for ‘strong’ CRPD-based interpretation of mental health advance directives. Nevertheless, if weak legal models represent a limitation of rights, common law advance directives may provide a more promising basis for the further development of advance care planning in mental health than statutorily based mental health advance directives. Advocates of mental health advance directives have long argued for the adoption of ‘strong’ legislative approaches to the recognition of mental health advance directives. A strong approach is one that emphasizes strict enforceability. Such approaches usually include provision for appeal and judicial review of decisions. As in other areas of health, judicial involvement in the question of whether a person is entitled to access health services requires a detailed and thoughtful analysis of the circumstances of a particular case. Judicial consideration of complex legal questions, especially when disputes raise novel or controversial moral, ethical or legal issues, may be a useful way of developing or clarifying the law. In an effort to avoid protracted and divisive litigation, legislatures may deprive mental health advance directives law of the legitimacy that may accompany judicial deliberation. The human rights approach being developed in the ECrtHR, appears to require the recognition of a general right to access treatment that is lawfully available. The general right should be protected and facilitated by appropriate

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judicial review. In mental health, review mechanisms such as mental health review tribunals are not currently empowered to fulfil this role. One outcome of the enforceability debate may be the recognition that there is a need to augment tribunal review powers to enable the review of access to treatment issues. With these powers, the tribunal could play a broader role in the coordination of clinical, social care and other services. Whether mental health advance directives operate as enforceable documents in practice, however, is likely to depend on the prevailing service culture and the attitudes of mental health practitioners. If a weak legal model is thought to encourage clinical engagement with mental health advance directives, then such models may be preferred. If the negative attitudes of mental health professionals are influenced by legal uncertainty, as is suggested by some research, a stronger model with less flexibility may also be preferred. If ‘stakeholders’ are seeking systemic change, a strong legal model may be preferred. These contradictions are unlikely to be resolved in the absence of further applied research about the relationship between law, attitudes and clinical practice. Leaving the question of strong or weak enforceability aside, this book argues that the potential of mental health advance directives lies in their ability to provide a communicative platform.The argument is supported by an analysis of the human rights framework that points to an expanded notion of informed consent. An expanded notion of informed consent relies on the communicative abilities of mental health personnel and people with mental health conditions. Mental health advance directives may be undermined by poor communication skills. Furthermore, people who are unused to making decisions or have a limited idea about the options that are available to them may be unable to avail themselves of the benefits offered by mental health advance directives. This observation suggests that mental health advance directives may ultimately fail or succeed ‘on the ground’, regardless of the legal model that is employed. The CRPD provides a framework that encourages a new approach to mental health advance directives. It enables them to be seen as a tool for realization of positive entitlements in mental health care. To achieve this broader goal, the loose consensus must be augmented with an appreciation of the three key observations that flow from the human rights analysis.These are that the CRPD privileges the perspectives of people with mental health conditions in all matters; encourages approaches to the adjudication of human rights that adopt principles of proportionality; and supports the use of mental health advance directives as a human rights tool. These points rest on the observation that the CRPD requires an integrated interpretation of economic, social and cultural rights that recognized the ‘negative’ and ‘positive’ element of each right. If the goal to realize CRPD-based human rights is to be achieved, an expanded role for mental health advance directives will be necessary. Ultimately, the efficacy of mental health advance directives will depend on the strength of human rights culture that surrounds them.

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International instruments

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178

International instruments

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Lindqvist, B., Final Report of the Special Rapporteur of the Commission for Social Development on monitoring the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities on his second mission, 1997–2000) ‘Millennium Development Goals’, United Nations Millennium Declaration, GA Res 55/2, UN GAOR, 55th sess, 8th plen mtg, Agenda Item 60(b), UN Doc A/Res/55/2 (8 September 2000). Monitoring the Implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities – Note of the Secretary-General, UN GAOR, 38th sess, Provisional Agenda Item 3(b), UN Doc E/CN.5/2000/3 (8-17 February 2000) annex . Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, GA Res 119, UN GAOR, 46th sess, 3rd Comm, 75th plen mtg, UN Doc A/RES/46/119 (17 December 1991). Principles of Medical Ethics, GA Dec 37/194, UN GAOR, 3rd Comm, 37th sess, 111th plen mtg, UN Doc (18 December 1982) annex (Principles of Medical Ethics relevant to the Role of Health Personnel, Physicians, in the Protection of Prisoners and Detainees against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment). Recommendation No R (99) 4 of the Committee of Ministers to Member States of the Council of Europe on Principles Concerning the Legal Protection of Incapable Adults (adopted on 23 February 1999 at the 660th meeting of the Minsters’ Deputies). Recommendation Rec (2004) 10 of the Committee of Ministers to Member States of the Council of Europe Concerning the Protection of Human Rights and Dignity of Persons with Mental Disorder (adopted on 22 September 2004 at the 896th meeting of the Ministers’ Deputies). Rio Political Declaration on Social Determinants of Health (the ‘Rio Political Declaration’) agreed upon at the World Conference on Social Determinants of Health Rio de Janeiro, Brazil, 21 October 2011 adopted by WHO Member States at the Sixty-fifth World Health Assembly (WHA) Geneva, Switzerland., 21–26 May 2012. Standard Rules on the Equalization of Opportunities for Persons with Disabilities, GA Res 48/96, UN GAOR, 48th sess, 85th plen mtg, UN Doc A/RES/48/96 (20 December 1993). UN Convention on the Rights of Persons with Disabilities – A Major Step Forward in Promoting and Protecting Rights’ (2007) Online. Available: http://www. who.int/mental_health/policy/legislation/4_UNConventionRightsofPersonswith Disabilities_Infosheet.pdf (accessed 21 May 2012). Universal Declaration of Human Rights, GA Res 217A (III), UN GAOR, 3rd sess, 183rd plen mtg, UN Doc A/810 (10 December 1948). Universal Declaration on Bioethics and Human Rights, UNESCO General Conference, 33rd sess, UN Doc SHS/EST/BIO/06/1 (adopted by acclamation 19 October 2005). Vienna Convention on the Law of Treaties, opened for signature 23 May 1969, 1155 UNTS 331 (entered into force 27 January 1980). Vienna Declaration and Programme of Action, UN Doc A/CONF.157/23 (12 July 1993). World Health Organization (1978) Report of the International Conference on Primary Health Care, Alma-Ata, USSR, 6–12 September 1978 – Declaration of Alma-Ata, Online. Available: http://www.unicef.org/about/history/files/Alma_Ata_conference_1978_ report.pdf (accessed 24 April 2012).

180

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World Health Organization (2007) ‘Mental Health, Human Rights and Legislation Information Sheet No 5 – UN Convention on the Rights of Persons with Disabilities – A Major Step Forward in Promoting and Protecting Rights’ (2007) Online. Available: http://www.who.int/mental_health/policy/legislation/4_UNConvention RightsofPersonswithDisabilities_Infosheet.pdf (accessed 21 May 2012). World Programme of Action Concerning Disabled Persons, GA Res 52, UN GAOR 37th sess, UN Doc A/RES/37/52 (3 December 1982). World United Nations (1946) Constitution of the World Health Organization, New York: WHO.

Index

access to treatment 10, 119–29, 163 advance refusals 86–8, 90 advance statements 1, 49, 110, 111, 144; informal 85–8; Scotland 89–102 Airedale NHS Trust v Bland (1993) 76 A.M. v Benes (1999) 64–5 Americans with Disabilities Act (1990) (ADA) 59 anti-psychiatry 53–6 Australia 49, 103–16, 120, 131, 144; best interests 136–9; Draft Exposure Mental Health Bill 2010 (Vic) 102, 110–12; Mental Health Act 1986 (Vic) 45; model of social of disability in 29 autonomy 2, 5, 7, 45, 61, 69, 109, 119, 120, 121, 122, 131, 140, 144; entitlement to 4, 8; in the CRPD 12, 23, 32, 33, 37, 48, 49; integrity and health law in Ontario, Canada 62–7; principle of 3, 9, 10, 43, 48, 80, 81, 82, 90, 114, 115, 121, 122, 128, 137, 138, 139, 150 Bartling v Superior Court (1984) 58 Bazelon, Chief Justice David 56 Betancourt v Trinitas Hospital (2010) 127 ‘best interests’ 7, 44, 78, 81, 82, 83, 84, 85, 88, 94, 95, 97, 104, 106, 119, 126, 153; choice 130–42; in Ontario, Canada 61, 63, 66, 68, 70, 73; Patrick’s case 136–9; standard 33 Birch v University College of London Hospital NHS Foundation Trust (2008) 80 Bolam v Friern Hospital Management Committee (1957) 79 ‘Bolam test’ 79, 83 Buck v Bell (1927) 54

Canadian Charter of Rights and Freedoms (1982) 70, 71, 74 Canadian Human Rights Act (1977) 70 Canadian Human Rights Commission 71 Canadian Human Rights Tribunal 71 Canterbury v Spence (1972) 46, 80 capacity 3, 4–8, 9, 58, 72, 73, 77, 78, 79, 82, 83, 84, 85, 113, 119; determining capacity in Ontario, Canada 67–70; partial 131, 133–6, 139, 140; principles 149–56; support 33–7; test 44, 45, 46, 48, 105 Chamberlin, Judi 55 Chappel v Hart (1998) 46 Charter of Human Rights and Responsibilities 2006 (Vic) 136 Charter of the United Nations 38 Chester v Afshar (2005) 80 choice 8, 117–59; access to treatment 119–29; best interests 130–42; human rights 3–4; participation 31–3; principle of 61–74; vulnerability 127–9 Cobbs v Grant (1972) 58 Code of Health and Disability Services Consumers’ Rights 103 Code of Practice for the Mental Health (Care and Treatment) Act 2003 (Scotland) (2005) 95 Commission for the Social Determinants of Health (CSDH) 24–6 Committee on the Rights of Persons with Disabilities 47, 71, 106–7 consensus 143–56 Convention on the Rights of Persons with Disabilities (CRPD) 15–50, 119, 129, 130, 131, 133, 161, 162, 163; Australia 106–8, 110; autonomy 12, 23, 32, 33, 37, 48, 49; discrimination 139–42;

182

Index

England and Wales 75; New Zealand 103–6; non-discrimination 39–42; Ontario, Canada 71, 72, 73, 74; PJB v Melbourne Health State Trustees Ltd (2011) (Patrick’s case) 136–9; right to health 26; Scotland 89, 102; social model of disability 30–31; Stanev v Bulgaria (2012) 133–5 Conway v Jacques (2002) 65–6, 67 Conway v Jacques (2005) 69–70 Cruzan v Missouri (1990) 58 Declaration on the Rights of Disabled Persons (1975) 18 Declaration on the Rights of Mentally Retarded Persons (1971) 18 disability 4, 7, 17, 22, 23, 38, 39, 41, 70, 82, 93, 107, 138, 139, 147; human rights law 18–19; social construction of 27–9; social model of 12, 26, 27–37, 47, 71, 129, 130 Draft Mental Health Bill 2011 (WA) 112 ‘Due Process of Euthanasia: the Living Will, a Proposal’ 58

Health and Disability Commissioner Act (1994) (NZ) 103 Health and Disability Commissioner 105 Herczegfalvy v Austria (1993) 76 Hinze v Great Blue Heron Casino (2011) 71 H.L. v United Kingdom (2004) 94 Human Rights Act 1998 (UK) 75, 76, 80, 83, 84 Hunter and New England Area Health Service v A (2009) 114 incapacity 133–6 informed consent 4–8, 48, 148; nondiscrimination and 38–49; participation, equality and 43–7 International Covenant on Civil and Political Rights (ICCPR) 20–1, 22 International Covenant on Economic, Social and Cultural Rights (ICESCR) 20–1, 22, 23, 40, 41 International Year of Disabled Persons 18 Kutner, Louis 58

electroconvulsive therapy (ECT) 55, 56, 66, 86, 94, 95, 96, 99 England and Wales 49, 75–88 enforceability gap 40 Ennis, Bruce 56 European Convention on Human Rights and Fundamental Freedoms (ECHR) 75–6, 81, 84, 89, 120, 121, 122, 125, 132, 134 European Court of Human Rights (ECrtHR) 71–2, 75, 76, 81, 84, 94, 120, 134, 135, 136, 149, 151, 154, 162; Glass v UK (2004) 125–7; Pretty v United Kingdom (2002) 121–3; right to liberty 130–3; Tysiac v Poland (2007) 123–5 Fleming v Reid (1991) 63, 66, 70, 72 Foucault, Michel 55 general health advance directives 5, 9, 10, 58–9, 103 Glass v UK (2004) 81, 120, 121, 125–7, 128, 151 Goffman, Erving 55 Granovsky v Canada (Minister of Employment and Immigration) (2000) 71 Hargrave v Vermont (2003) 59 Health Care Consent Act 1996 (HCCA) 63

Laing, R.D. 54 Lake v Cameron (1966) 56 Lane v Candura (1978) 58 ‘least restrictive alternative’ 56 Lessard v Schmidt (1972) 57 living will 1, 58, 59, 98, 108 Madness Network News 55 mainstreaming 39, 42, 43, Malette v Shulman (1990) 62, 63, 68 McManus Review Group 98 Mental Capacity Act 2005 (UK) 49, 83–4, 85–6, 88 Mental Health Act 1990 (MHA) 63 Mental Health Act 1984 (Scotland) 89 Mental Health Act 1983 (UK) 49, 76, 86, 88 Mental Health Act 1986 (Vic) 45, 113–14 Mental Health (Care and Treatment) Act 2003 (Scotland) 49, 89, 92–5 Mental Health (Compulsory Assessment and Treatment) Act 1992 (NZ) 105, 106 mental health advance directives 1, 2, 3, 5, 7, 8, 9–11, 12, 39, 47–50, 51–116, 148–9; Australia 106–16; England and Wales 75–88; New Zealand 103–6; potential 148–9; Scotland 89–102

Index 183

Mental Health Bar 56 Mental Health Commission for Scotland 98, 101 mental health law 13, 19, 43, 46, 47, 49, 131, 149, 150, 155, 162; Australia 106–16; development of in the United States 53–7, 59; England and Wales 75–88; human rights 1, 2, 39; New Zealand 103–6; Ontario, Canada 61–71; rights-based 2, 3, 8–9; Scotland 89–102 mentalism 55 Mental Welfare Commission 93, 96, 98, 100, 101, 102 Meyer, Adolf 53 MHA Code of Practice (Department of Health 2008) 87 Mind Freedom International 56 movements for social change 53 National Institute for Health and Clinical Excellence (NICE) 87, 88 negative rights 3, 48, 132 neo-liberalism 4 New Directions: Report on the Review of the Mental Health (Scotland) Act 1984 (the ‘Millan Report’) 89, 90 New Zealand 49, 103–16 New Zealand Bill of Rights Act (1990) 103, 104 New Zealand Mental Health Commission 103, 104 NHS Trust v T (Adult Patient: Refusal of Medical Treatment) (2004) 79 non-discrimination 38–50, 100–2; in the CRPD 39–42; informed consent 38–49 O’Connor v Donaldson (1975) 57 Office of the Health and Disability Commissioner (HDC) 103 On Our Own: Patient-Controlled Alternatives to the Mental Health System (1978) 55 One Flew Over the Cuckoo’s Nest 54 Ontario, Canada 49, 61–74 Patient Self Determination Act (1990) (PSDA) 59 Paul Conway v Her Majesty the Queen and Person in charge of The Centre for Addiction and Mental Health and Ontario Review Board (2009) 74

PJB v Melbourne Health State Trustees Ltd (2011) (Patrick’s case) 131, 136–9, 140, 141 positive rights 2, 3, 5, 10, 13, 20, 36, 40, 56, 73, 129, 131, 133, 141 Pretty v United Kingdom (2002) 75, 82, 120, 121–3, 127, 128 principle of choice 61–74 principle of participation 27, 32, 33, 34, 35, 36, 39, 48, 49 principle of progressive realization 40 principle of protection 45, 48 Professor Starson v Mark Pearce (2011) 69 psychiatric advance directives (PADs) 57, 59 R v Conway (2010) 74 R v Starson (2009) 69 reasonable accommodation 32, 34, 35, 41, 42–3, 47, 73, 129, 139, 140, 147, 155, 161 Re A (Male Sterilization) [2000] 83 Re B (Adult: Refusal of Medical Treatment) (2002) 82–3 Re BS (2011) 71 Re C (Adult: Refusal of Medical Treatment) (1994) 76, 77, 79, 101 Re F (2008) 67 recovery 90, 92, 104, 143–56; movement 144 Re F (Mental Patient: Sterilisation) (1990) 76, 83 Reibel v Hughes (1980) 62 Re J (2008) 73 Re JT (Adult: Refusal of Medical Treatment) (1998) 77–8 Re L (Patient: Non-Consensual Treatment) (1997) 78 Re MB (1997) 44, 45, 78–9, 83 Re MM (an adult) [2007] 84 Re Quinlan (1976) 58 R (on the application of Burke) v The General Medical Council (2005) 81 R (on the application of Oliver Leslie Burke) v The General Medical Council (2006) 81, 82 Re S (2009) 67 Re S (Adult Patient: Sterilization Patient’s Best Interest) [2000] 83, 84 Re Starson (2011) 69 Re T (Adult: Refusal of Medical Treatment) (1992) 76, 77, 79

184

Index

right to choose 1–12 right to end life 121–3 right to health 2, 3, 10, 11–12, 18, 19, 22–4, 24–6, 27, 36, 48, 129, 130; and privacy 120–1; in the CRPD 26 right to liberty 131–3 right to participate 31–3 right to refuse treatment right to self-determination 46, 47 Rio Political Declaration on Social Determinants of Health 25 Rogers and Whitaker (1992) 46, 80, 114 Sanity, Madness and the Family (1964) 54 Schloendorff v Society of New York Hospital (1914) 5, 46, 62 Scotland 49, 89–102 Scotland Act 1998 (UK) 89 Shelton v Tucker (1960) Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital (1985) 79–80 S.M.T. v Abouelnasr (2008) 70, 72 social determinants of health 24–6, 47 social model of disability 27–37, 46, 47, 71; in the CRPD 30–1, 32, 33, 34 social model of health 27, 29–30, 130 special needs 41–2 Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) 18 Stanev v Bulgaria (2012) 131, 133–6, 137, 139, 140, 141, 149 Starson v Pearce (2009) 69 Starson v Swayze (2003) 67–8, 69

substantive difference approach 38, 39 Substitute Decisions Act (1992) (SDA) 63 supported decision making 7, 8, 36, 73, 110, 143, 146, 147 Szaz, Thomas S. 54, 59 The Divided Self: An Existential Study in Sanity and Madness (1960) 54 ‘The Myth of Mental Illness’ (1960) 54 ‘The Psychiatric Will’ 59 T.(I.) v L.(L.) (1999) 65 Tysiac v Poland (2007) 72, 120, 121, 123–5, 127, 128 United Nations 5, 12, 18, 19, 20, 38, 89 United Nations Special Rapporteur for Health 12 United States of America 2, 4, 5, 8, 9, 10, 11, 13, 29, 44, 46, 49, 53–60, 80, 85, 127, 145, 146 Universal Declaration of Human Rights (UDHR) 3, 20, 38 Vienna Declaration and Program of Action (1993) 19–20, 22 vulnerability 12; choice 127–9 World Health Organization 12, 24, 105, 130 World Network of Users and Survivors of Psychiatry (WNUSP) 56 Wyatt v Stickney (1971) 56 Zola, Irving 55