INTRODUCTION

Capacity and decision-making

1. Decision-making capacity is a person’s ability to make their own decisions based on their personal values and, where possible, to make meaningful choices. It goes to the heart of a person’s autonomy and respect for their self-determination. The ability to make a specific decision or take actions that influence a person’s life can range from a simple everyday decision about what to have for breakfast, to far-reaching decisions about medical treatment or financial investments. For example, how does a young adult with learning disabilities negotiate choices about their living arrangements, or how do we support an older adult experiencing onset of dementia to decide their next steps? In some instances, where a person is in a coma on life support, for example, the extent of a person’s incapacity means they are unable to participate in the decisions made about them. Many people with significant intellectual, cognitive and mental disabilities face substantial or total restrictions in making their own decisions.
   
   
2. In a legal context, capacity (sometimes referred to as “competence”) is concerned with whether a person’s decision-making ability is recognised as valid and, if not, there is the question of who should make decisions on their behalf and on what basis those decisions should be made. When lack of capacity is temporary it may be possible to defer decisions until capacity is restored. But if a person’s incapacity is of lasting duration or permanent, or if an urgent decision otherwise needs to be made, there must be some legally recognised procedure whereby necessary decisions can be made by some other person or body. Getting the process for these decisions right is essential to the protection and promotion of an incapacitated person’s rights and in determining the legal consequences that follow.
   
   
3. New Zealand’s current legal framework, as with adult guardianship law in other jurisdictions, is based on a process of “substitute decision-making”, whereby mental capacity can be tested, and when found absent another person can make a decision on the person’s behalf. This approach is now under scrutiny in light of the United Nations Convention on the Rights of Persons with Disabilities 2006 (CRPD). This important human rights convention advocates a shift from substituted to supported models of decision-making for people who lack capacity. Not only is it important that good judgments are made about whether or not a person has decision-making capacity but there is an equally important question about whether there are ways in which they can be supported to make their own decisions, and the extent to which the law reflects this process. How the State best protects and supports people with diminished capacity for decision-making and the tension between protection and autonomy is a key aspect of the law concerning mental capacity.

Purpose of the report

4. The overall purpose of this report is to bring attention to the need to review and update New Zealand’s adult guardianship (or incapacity) legislation: the Protection of Personal and Property Rights Act 1988 (PPPR Act). This is the main legislation governing these questions of capacity and decision-making for others. Such a legislative review is necessary to ensure New Zealand complies with international human rights conventions and keeps pace with contemporary thinking about mental capacity law and practice. New Zealand is well placed to develop its own legal and cultural perspective in this important area of social policy and align itself with reform in other jurisdictions.
   
   
5. The basis of the report is an investigation and description of the developments in England and Wales that are ongoing under their Mental Capacity Act 2005 (MCA).¹ There has been a comprehensive overhaul of this area of law in England and Wales with the introduction of the MCA and a Code of Practice for the guidance of health professionals, lawyers and a range of people involved with adult incapacity.
   
   
6. This analysis of the English legislation can provide New Zealand with the foundation for modernising our law and practice based on the English experience. I have identified key provisions in the MCA that could be used and adopted into a review of New Zealand’s legislation. I also raise some important questions that require closer scrutiny for any future review. A summary of the problems with the PPPR Act that I consider include: a lack of attention to supported decision-making; a gap in procedural safeguards for people who are detained but not subject to the mental health legislation; multiple tests for (in)capacity with no clear definition; the absence of a best interests standard for decision-making; no legislative safeguards regarding research on people who lack capacity; and lack of an accompanying Code of Practice.

7. New Zealand’s PPPR Act was progressive legislation for its time, but the range of people to whom the legislation applies and the social environment in which it operates are now very different. Over the past 28 years there has been a shift in the application of the legislation from people with intellectual disabilities to our aging population, without corresponding developments in the policy supporting it. The increasing prevalence of dementia and Alzheimer’s disease is a major factor in the growth in numbers of people with impaired decision-making capacity in the community. This increased burden on providers affects older people’s experience with social care and in the health system. Increasingly, cases before the Family Court are concerned with decisions about the living arrangements and the healthcare of older adults who lack capacity, and how those decisions are made and by whom.
   
   
8. Capacity is a legal concept that historically has emerged from three main legal areas: property rights, medical law and the law of consent. The three areas inform the concept, but it is only the latter two that form the focus of this report. In that regard, the PPPR Act was enacted in 1988, the year of the report of the Cartwright Inquiry, and predates significant developments of the law relating to patients’ rights following the Cartwright Inquiry and leading to the Health and Disability Commissioner Act 1994 and the Code of Health and Disability Services Consumers’ Rights (the HDC Code).² The HDC Code is now a central part of New Zealand’s health and disability regulatory framework, as are the Commissioner’s opinions on the standards of care and treatment by health and disability providers. The interface between the PPPR Act and the HDC Code for people who lack capacity is not well understood, yet it is very important for understanding how and by whom decisions can be made for people who lack capacity – whether for everyday health and welfare decisions through to more profound decisions at the end of life.
   
   
9. In 2008 New Zealand ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD, as well as the European Convention on Human Rights, (ECHR), has had a major impact on interpretation of mental capacity law concepts internationally, particularly in the United Kingdom, raising important issues around the role of the law in ensuring equality before the law for those people with mental disabilities who lack capacity.

10. Despite the MCA being described as a visionary piece of legislation, a 2014 post-legislation scrutiny report from the House of Lords (House of Lords report)³ described the MCA as not fit for purpose, and revealed significant problems with the implementation of the law and its interface with mental health law. The key problem that has emerged in England concerns how the law should regulate the liberties of people who lack capacity to consent to their care and treatment arrangements, and who are not receiving compulsory mental health treatment under the Mental Health Act (MHA). A crucial decision in the European Court of Human Rights (ECtHR)⁴ overturned a decision of the House of Lords,⁵ and exposed a gap in legal protections and held that healthcare providers could not rely on the common law doctrine of necessity to justify detention of “informal” patients (known as the “Bournewood gap”).
    
    
11. The law was amended in 2007 and procedural safeguards, called “Deprivation of Liberty Safeguards” (Idols), were subsequently introduced in England. However, the DoLS have been described in the House of Lords report as an “administrative nightmare” and “fundamentally flawed”.⁶ Meanwhile, a decision of the Supreme Court, Cheshire West,⁷ broadened the ambit of the DoLS scheme beyond hospitals and care homes so that its procedural requirements must be followed even, in some cases, where people are living in the community, thereby placing pressure on the English government to revise the scheme. The Law Commission of England and Wales (Law Commission) is currently consulting on replacing the DoLS scheme and draft legislation will be available by the end of 2016.
    
    
12. The reform of the MCA to ensure it is compliant with international human rights conventions is current and ongoing. It provides a vast pool of information and experience for New Zealand to draw upon, critically consider, and so use to progress our own law and related practice. The proposed revised DoLS regime in England raises a fundamental question for New Zealand: in the absence of procedural safeguards where people are detained in these circumstances, is there a significant gap in our law to protect those people who lack capacity where the State is involved with the provision of health and social care?  And if so, how should New Zealand fill this gap through a review of the law?
    
    
13. These world-leading developments in England, including the first decisions under the MCA from the Supreme Court, provide valuable insights into the lessons learned in trying to embed a new law and corresponding practice. In view of the English experience, it is timely to promote discussion on possible areas for law reform and on the formulation of standards for best practice for New Zealand.

14. This report has three objectives aimed at assisting with the improvement of New Zealand law and practice. Firstly, the report provides a high level analysis of contemporary thinking about mental capacity law to inform potential law reform in New Zealand. It considers the impact of CRPD and the paradigm shift from substitute to supported decision-making regimes, and what supported decision-making might mean for New Zealand from a legal, ethical and cultural perspective. A wider review would require an analysis of developments in other Commonwealth jurisdictions, particularly in Australia and Canada, and a closer consideration of how supported decision-making could be integrated into law reform.

15. Secondly, there is a legal analysis of specific provisions of the English MCA that could be adopted and incorporated in an update of New Zealand law. The report compares key legal aspects of the MCA with the PPPR Act and the HDC Code⁸ including: the core principles that underpin the English and the New Zealand legislation; the legal tests for capacity; the role of “best interests” as a standard for decision-making; and the specific provisions of the English law concerning research on people who lack capacity.⁹ More generally, some specific features of the MCA that are absent in New Zealand legislation are highlighted as worthy of attention in a review of our law.¹⁰

16. Thirdly, the report takes a multi-disciplinary first step towards a Code of Practice by providing guidance for doctors assessing capacity in the form of a “toolkit”. In New Zealand, there is no specific guidance for medical or legal practitioners and others in this field, yet incapacity permeates all aspects of law and healthcare practice. The possibility of a wider review of the PPPR Act means it would be premature to draft a complex Code of Practice at this stage, however, a clear indication is given of what such a Code of Practice might look like.

17. An important part of this project has been to collaborate with Dr Greg Young, consultant psychiatrist, and Professor John McMillan, bioethicist. We have consulted with medical colleagues and conducted a survey of doctors, including general practitioners (GPs), about the guidance and education needed to promote good practice in the clinical assessment of capacity. This work aims to contribute to professional education and provide guidance for health practitioners and others who work with people who lack or have impaired capacity. We hope the guidance will be taken forward by the medical colleges and other healthcare professions.11 Professional education of lawyers is equally important. In England, there has been a move by the Law Society to develop an accreditation programme for lawyers who specialise in capacity law and who appear in the specialised jurisdiction of the Court of Protection.¹²

18. The Bioethics Centre and Faculty of Law, University of Otago, provided an academic base for this research. Support for the project was received from a wide range of key informants and stakeholder organisations in New Zealand.¹³ This is primarily a legal research project that combines law, medicine and ethics in addressing the key research question: how is the current New Zealand legal process working and what changes are needed to the law governing mental capacity in New Zealand to ensure consistency with contemporary thinking and best practice standards? The project has involved an analysis of the relevant New Zealand law and a comparative analysis of issues identified for law reform from the Mental Capacity Act 2005 (England and Wales) and Code of Practice.

19. The New Zealand Law Foundation 2014 international research fellowship enabled me to visit and consult leading experts and academics in Singapore, England, Scotland, and Ireland to inform the research and recommendations in this report.¹⁴ During April to June 2015, I was a visiting researcher and hosted at the Centre for Biomedical Ethics at the National University of Singapore (Professor Alastair Campbell), the Dickson Poon School of Law, Kings College of London (Professor Genevra Richardson) and the Ethox Centre Oxford University, (Dr Michael Dunn). In England I interviewed members of the judiciary who have delivered leading judgments under the mental capacity law including: Lady Brenda Hale, Deputy President of the Supreme Court of the United Kingdom; Mr Justice Charles, Deputy President of the Court of Protection; and Senior Judge Denzil Lush of the Court of Protection. Ethical approval for the purpose of formal interviews was obtained from the Human Ethics Committee, University of Otago.¹⁵

20. Informants in England and Scotland included medical law and ethics experts (both academics and practising lawyers), Law Commissioners, lawyers in the offices of the Official Solicitor, and the Public Guardian, as well as psychiatrists and Chairs of research ethics committees. Alex Ruck Keene, a leading barrister in this field of law and consultant to the Law Commission on current law reform of the MCA, has provided extensive resources and made an invaluable contribution to this report.

21. A mixed methods research methodology and thematic analysis was used for the survey of doctors undertaken with medical and ethics colleagues to inform the Toolkit for Assessing Capacity.¹⁶ Preliminary findings of the research were disseminated through seminars in Singapore, England and New Zealand.¹⁷

22. I take full responsibility for the synthesis and analysis of the work presented here. I come to this topic as a practising lawyer with a background in bioethics. To inform this report, I have drawn on my experience in cases where I have represented people who lack capacity and/or their families under the PPPR Act and under the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003 (IDCCR Act), as well as my involvement with clinical ethics and medical education. In doing so, I provide examples in real-life practice and cases to illustrate some of the challenges that are encountered. I have also drawn on the wisdom and experience shared by colleagues including lawyers, judges, doctors, nurses and social workers in New Zealand and overseas while I was carrying out this research.
    
    
23. Bioethics provides a multi-disciplinary approach to critical thinking about moral issues in medicine and healthcare. It is important to recognise that often decisions about a person’s capacity may involve multiple professionals and others involved in a person’s care, in situations where decisions are not clear cut, and may be decisions not only about whether a person lacks capacity but also whether any intervention is necessary. Recognition of these challenges reinforces to me the need to have a legal framework supportive and respectful of the people subject to them. The process of applying the law and the experiences of people affected may be as important as the outcome itself. To this end, the current movement towards therapeutic jurisprudence in New Zealand¹⁸ has a lot to offer in the design and application of revised mental capacity law, especially for embedding supported decision-making into practice.

Scope of the report

24. After 28 years New Zealand’s PPPR Act is in need of review. However, a full review is beyond the scope of this report. Indeed it would be impossible for a sole barrister to review all aspects of the PPPR Act and undertake a complete comparative analysis with English and international law. So, by necessity, there are some important limitations in my approach to a review of the law, as noted below.

25. The interface between mental capacity law and mental health law is complex. While I raise important questions about the rights of people who lack capacity and who are not subject to the compulsory treatment under mental health legislation, this report does not extend to a review of the Mental Health (Compulsory Assessment and Treatment) Act 1992 (MH(CAT) Act). The focus of this project is on health and disability law and practice as it applies to adults (not children) with impaired capacity in general, whether or not they are under the MH(CAT) Act. Equally, while issues of capacity for financial and property decision-making and to make a will often overlap with the care and welfare of the person who lacks capacity, that kind of decision-making is not a focus of the report. It is more concerned with decisions about personal care. With regard to testamentary capacity, there is a solid body of common law jurisprudence that has developed in England and New Zealand¹⁹ and I do not consider there is a need to codify these aspects of common law into legislation.

26. The recent restructuring of the Family Court with its focus on child law and domestic violence has had the effect of taking the spotlight off other areas of the Family Court’s wide jurisdiction, including mental health law and the operation of the PPPR Act. The problems encountered with the increase of self-representation in courts generally, as identified by Justice Winklemann,²⁰ compound the current limitations of the legislation designed to protect the interests of vulnerable adults who are often caught up in complex family relationships and are ill-equipped to initiate or progress resolution in court proceedings. ²¹

27. This report is concerned mainly with substantive law and the conceptual thinking that underpins it. An important follow-on of a review of the law will be the very practical challenges of implementing and embedding workable laws in practice. It will require substantial input from the legal profession as well as health professionals, social workers and the many people involved in the health and disability sector who are working with and supporting people with impaired capacity for decision-making, and their families, on a daily basis. The incredible support I received for this project from a wide range of people and professions is testament to the fact there many committed and dedicated people working in the health and disability sector who see the need to act now to improve the experiences of people with impaired capacity within the law and practice in New Zealand.

Structure of the report

28. Chapter 1: Setting the Context – An Overview of New Zealand and English Mental Capacity Law is an introduction to capacity as a legal concept. It outlines the history, context and an overview of the legal landscape of capacity law, and of related law reform to date in New Zealand and in the United Kingdom and Ireland.

29. Chapter 2: Supported Decision-making describes the impact and challenges of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It draws threads together between: supported decision-making as understood in human rights law; legal principles; an understanding of autonomy in ethics; and New Zealand’s own cultural dimension, incorporating tikanga Māori. While the CRPD has challenged thinking about substitute decision-making within adult guardianship law, there is no need to abolish the PPPR Act in New Zealand; rather, the CRPD provides an opportunity to enhance and improve the law by giving priority to supported decision-making as a legal principle, within the decision-making mechanisms of the legislation itself. English case law examples show that supported and substitute decision-making can coexist.

30. Chapter 3: Liberty Safeguards explains the developments in England following important decisions of the European Court of Human Rights and the United Kingdom Supreme Court, and following the creation of a special set of procedural safeguards for people who lack capacity but are detained, known as Deprivation of Liberty Safeguards (DoLS). This chapter identifies the existence of the so-called “Bournewood gap” in the New Zealand context and considers its implications within the international human rights context. It recommends further steps to protect the liberties of people with diminished capacity who are not subject to, or do not have the benefit of, the safeguards contained in the mental health legislation.

31. Chapter 4: Defining Capacity identifies the problems and complexity of the multiple tests for capacity found in the PPPR Act and the lack of a definition of incapacity within the HDC Code for the purposes of informed consent or refusal of healthcare. It recommends that a single legal test should be adopted as set out in section 3 of the MCA.

32. Chapter 5: Best Interests – A Standard for Decision-making explains that New Zealand has no statutory standard governing subsequent decision-making where a person lacks capacity, and our jurisdiction is reliant on an outdated understanding of “best interests” developed in case law. Understanding supported decision-making as a continuum creates an imperative for having a transparent decision-making process where substitute decisions are made, involving the person with diminished capacity where possible. A standard, modelled on section 4 of the MCA, with wrap-around provisions for supported decision- making, is recommended.

33. Chapter 6: Research on People who Lack Capacity examines sections 30–34 of the MCA, there being no similar protections for research participants in New Zealand who are unable to consent to health and disability research. It provides examples of research undertaken in both England and New Zealand and considers how these MCA provisions could be adopted within the New Zealand ethical review framework.

34. Chapter 7: Code of Practice advocates a Code of Practice for New Zealand, as subordinate legislation to revised mental capacity law. It describes collaborative work undertaken with medical and bioethics colleagues regarding the clinical assessment of capacity. A Toolkit for Assessing Capacity is annexed to this report.

35. Chapter 8: Conclusion – A Checklist for Reform summarises the key recommendations within the scope of this report and highlights additional areas of the PPPR Act that need attention in a review of the law.

¹ The Mental Capacity Act 2005 (England and Wales), was passed into law by the United Kingdom Parliament on 7 April 2005. The Act only applies to England and Wales and is referred to in this report as the “MCA”. The term “English law” is intended to refer to both England and Wales. The MCA also gives effect in England and Wales to the Convention on the International Protection of Adults signed at The Hague on 13 January 2000: MCA, Preamble, s 63 and Schedule 3.

² The Code of Health and Disability Services Consumers’ Rights is referred to as the HDC Code in this report to distinguish it from the MCA Code of Practice.

³ House of Lords Select Committee Mental Capacity Act 2005: post-legislative scrutiny (TSO, London, 13 March 2014).

⁴ HL v United Kingdom (2004) 40 EHRR 32.

⁵ R v Bournewood Community and Mental Health NHS Trust, Ex p. L [1999] 1 AC 458.

⁶ House of Lords, above n 3 at summary and [256] – [259].

⁷ P v Cheshire West and Chester Council and P v Surrey County Council [2014] UKSC 19, [2014] AC 896.

⁸ The Code of Health and Disability Services Consumers’ Rights (the HDC Code).

⁹ The key provisions of the Mental Capacity Act 2005 (England and Wales) referred to in this report are set out in Appendix C.

¹⁰ See Chapter I Overview of the MCA and Chapter 8 Conclusion and Checklist for Reform.

¹¹ The New Zealand Nurses Organisation supported this project. Nurses and other health practitioners are interested in training and education in the assessment of capacity.

¹² S Miles, “Time to accredit mental capacity work” [2015] Eld LJ 3. See also, British Medical Association and the Law Society, Assessment of Mental Capacity, A Practical Guide for Doctors and Lawyers, 2010, Third Edition (The Law Society, London).

¹³ A list of people and organisations that provided letters of support and references for my application to the New Zealand Law Foundation as well as people interviewed in the United Kingdom is set out in Appendix E.

¹⁴ I also attended the Capacity Australia conference in Sydney, Australia, in November 2015.

¹⁵ Ethics Reference D15/105, 23 March 2015. A limitation of this research is that while I was able to interview a number of key informants whilst visiting England, in the time frame and resources available to me I have undertaken only a limited number of interviews in New Zealand.

¹⁶ The findings of this survey entitled, “Assessing capacity: what do you know and what would help you do it better?” are discussed in Chapter 7 Code of Practice. Ethical approval was obtained from the Human Ethics Committee, University of Otago D15/213.

¹⁷ The draft toolkit for assessing capacity was presented at a workshop on Capacity Assessments in Auckland on 24 February 2016 attended by 24 health practitioners, mainly geriatricians and psychiatrists, as well as social workers. The toolkit was circulated widely for consultation among doctors and some lawyers as described in Chapter 7 Code of Practice.

¹⁸ W Brookbanks (ed) Therapeutic Jurisprudence: New Zealand Perspectives, 2015 (Thomson Reuters, Wellington).

¹⁹ Recent New Zealand examples include: Woodward v Smith [2009] NZCA 215; Moleta v McFadzean [2013] NZHC 2694, Collins J; and Green v Green [2015] NZHC 1216, Winkelmann J.

²⁰ Justice Winkelmann, “The New Zealand Law Foundation Ethel Benjamin Commemorative Address 2014, Access to Justice - Who Needs Lawyers?” (2014) 13 Otago Law Review 229.

²¹ Access to justice through the Court system by people with intellectual disabilities has recently been the subject of a New Zealand Law Foundation research project: B Mirfin-Veitch, S Gates, K Diesfield, and others Developing a more responsive legal system for people with intellectual disability in New Zealand (Donald Beasley Institute, Dunedin, 2014).