‘Our current Mental Health Act is outdated. Forcing people into mental health treatment regardless of their rights and preferences unjustifiably breaches their autonomy, freedom and tino rangatiratanga [Māori: self-determination, independence, autonomy], and can contribute to mental illness prejudice and discourage people from seeking help.’ 1
Enabling individuals to have an active voice in treatment choices is acknowledged as important in facilitating recovery. Reference Lenagh-Glue, Potiki, O’Brien, Dawson, Thom and Casey2 Advance care planning or advance directives have gained currency in many health systems worldwide. Reference Henderson, Swanson, Szmuckler, Thornicroft and Zinkler3 The driving force behind the use of advance directives is their ability to promote autonomy by honouring an individual’s will and preferences when that person is unable or unwilling to express them in a future context. This has been contentious, with some arguing that the beliefs and desires of a future self are unknown to the present self, and thus negate the autonomy of the future self. Reference Dresser4 Others, however, propose that the concept of precedent autonomy allows for the use of an advance directive based on inherent moral values that the individual held when the directive was made. Reference Buford5
In this article, we explore elements related to mental health advance directives (MHADs) with reference to New Zealand-based research on a specialised advance agreement known as a mental health advance preference statement (MAPS). We will give an overview of MHADs from an historical and legal perspective, taking the New Zealand point of view, and examine how their use might help facilitate a step-change by supporting people with psychosocial distress Footnote a to receive mental healthcare that meets their individual needs.
Uptake of advance directives for end-of-life care has been slowly gaining traction, Reference Canny, Mason and Boyd6 but there are still substantial barriers to their use in mental health contexts. Reference Farrelly, Lester, Rose, Birchwood, Marshall and Waheed7 Advance directives can facilitate supported decision-making and are endorsed as best practice for nations to comply with their obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The use of advance directives is being integrated, in many jurisdictions, into reformed mental health law. Reference Zelle, Kemp and Bonnie8
MHADs enable individuals to make statements about their preferences for future mental healthcare. They are designed to record peoples’ choices, so that clinicians are aware of them when they later provide care and treatment. Traditionally, MHADs have been based on the concept that healthcare decision-making is shared between patient and provider. Reference Lenagh-Glue, O’Brien, Dawson, Thom, Potiki and Casey9 A ‘shared’ approach implies a symmetric distribution of power between patient and clinician that, in practice, may weigh in favour of clinicians and negate the patient’s preferences. This approach falls short of the responsibilities of signatories to the UNCRPD, which states that people should be given the support needed to enable them to make their own decisions regarding their care. The distinction between legal capacity to make one’s own decisions under the law and mental capacity, which has often been interpreted as the cognitive ability to make such a decision, is discussed in more depth in the next section. In its General Comment to Article 12 of the UNCRPD, the Committee on the Rights of Persons with Disabilities states: 10
‘For many persons with disabilities, the ability to plan in advance is an important form of support, whereby they can state their will and preferences which should be followed at a time when they may not be in a position to communicate their wishes to others. All persons with disabilities have the right to engage in advance planning and should be given the opportunity to do so on an equal basis with others. States parties can provide various forms of advance planning mechanisms to accommodate various preferences, but all the options should be non-discriminatory’ (para. 17).
Use of MHADs reflects the principle behind supported decision-making: people should be supported to make their own decisions in advance if they might have difficulty making or articulating them at a later time. To be in compliance with Article 12, when an MHAD enters into force, or ceases to have effect, should be decided by the person and included in the text of the directive; it should not be based on an assessment that the person lacks capacity. Footnote b A pertinent question, then, is how can MHADs be used most effectively to that end?
Paternalism versus empowerment
General principles of mental healthcare law
Traditionally, MHADs are documents that are designed to convey an individual’s healthcare preferences or designate a surrogate decision-maker when the individual is deemed to lack capacity to make their own care decisions. Reference Casper11 This is consistent with common law principles governing consent, which determine that the standard for informed consent is the information that a person, in that person’s circumstance, deems important. 12 Similarly, common law deems that every competent adult has the right to refuse any medical treatment, even where death is the inevitable consequence. 13 King & Moulton’s Reference King and Moulton14 analysis revealed that patient preferences that reflect their lifestyle, values and personal preferences are often the best indicator for appropriate treatment, but clinicians are rarely well-placed to take these values into consideration when making treatment decisions, given the pressures on health systems and the fact that often clinical presentation is in an emergency setting.
Mental health legislation
These general principles of healthcare law are not fully reflected, however, in many countries’ mental health legislation. In New Zealand, for example, the Mental Health (Compulsory Assessment and Treatment) Act 1992 (NZ MHA) Footnote c fails to give effect to this premise. When a person meets the criteria for civil commitment under that Act, they come under a model of substitute, rather than supported, decision-making. The NZ MHA authorises a responsible clinician to provide compulsory treatment ‘for mental disorder’ regardless of any preference or refusal the person may have previously stated in a valid MHAD. Compulsory treatment under the Act requires the person to have a clinically assessed ‘mental disorder’ that poses a serious danger to the health or safety of that person or others, or seriously diminishes their capacity to care for themselves, but there is no requirement that the person lacks capacity to consent. There is no need for the person’s mental condition be present constantly: its ‘intermittent’ presence is enough to meet the criteria for compulsory treatment. If the person meets these criteria, any advance refusal they have issued may be overridden or disregarded, provided that their responsible clinician considers the treatment proposed to be clinically indicated, and a second psychiatric opinion concurs that it would be in the person’s best interests. Although compulsory treatment is generally concerned with persons experiencing mental distress, legislation permitting compulsory treatment for certain contagious communicable diseases exists in different jurisdictions, such as US federal quarantine orders for certain infectious diseases. Reference Pope and Bughman15 In the USA, the Supreme Court has ruled that involuntary confinement is justified only when three conditions are satisfied: (a) the individual is truly dangerous; (b) confinement is the least restrictive alternative to protect from the danger; and (c) the individual must be afforded procedural due process. Reference Pope and Bughman15 In situations where individuals fail to consent to treatment or are non-compliant with restrictions, Reference Pope and Bughman15 the Court may order them to remain in confinement. In these cases, the determination has been that the risk to the public outweighs the individual’s right to make their own healthcare decisions. Although the ethics of this approach may be debatable, we would argue that as long as there remain compulsory regimes, the onus is on the legislation and medical practitioners to find the least restrictive option, 16 and MHADs have an important role to play.
Committee on the Rights of Persons with Disabilities
These general principles of healthcare law are also not reflected in the implications of the UNCRPD for mental health law. The Committee on the Rights of Persons with Disabilities, which sits under the UNCRPD and monitors compliance, has directed countries that have ratified the convention to abolish substitute decision-making and replace it with supported decision-making. 10 The Committee has repeatedly criticised New Zealand for failure to uphold its obligations under international law, assumed on ratifying the UNCRPD in 2008, and has highlighted New Zealand’s failure to revise its laws that permit substitute decision-making for people with disabilities. 17 They have also remonstrated with New Zealand over its failure to respect every individual’s right to give and withdraw informed consent to healthcare, in compliance with Article 12 of the UNCRPD.
Not everyone accepts the UN Committee’s interpretation of the implications of the UNCRPD for mental health law. Dawson has pointed out ambiguities in the language of the UNCRPD, which leaves some matters unclear. He suggests that the Committee’s interpretation of Article 12 could have ‘affirmed the need to recognise the legal capacities of persons with disabilities wherever possible, and the need to support them, on occasion, to exercise those capacities and formulate an authentic expression of their views, while reserving the possibility that a person may be found to lack capacity in a certain domain’ Reference Dawson18 and therefore require substitute decisions to be made for them, on occasions, in that domain. Paragraph 14 of the General Comment on Article 12 details two reasons why the capacity approach is problematic. First, it is discriminatorily applied to people with disabilities, and second, it presumes to be able to accurately assess the inner workings of the human mind and, when the person does not pass the assessment, it then denies them a core human right – the right to equal recognition before the law. 10
Article 12 refers to legal capacity, which has been defined as ‘a person’s power or possibility to act within the framework of the legal system’. 19 Thus, legal capacity reflects the individual’s right to make their own decisions regarding how they live and interact in society. Mental capacity is often defined as the ability of an individual to understand information relevant to a decision and its effect; to retain that information to the extent necessary to make the decision; and to use or weigh that information as part of the process of making the decision (Mental Capacity Act 2005 (England and Wales), section 3). The concept of mental capacity is highly controversial in and of itself. Mental capacity is not, as is commonly presented, an objective, scientific and naturally occurring phenomenon. Mental capacity is contingent on social and political contexts, as are the disciplines, professions and practices that play a dominant role in assessing it.
Under a supported decision-making model, individuals accessing healthcare and disability services would be provided the support and resources needed to articulate their will and preferences. Use of MHADs can be one critical means promoting that aim. There have been developments in some jurisdictions, such as England and Wales, Scotland, the Canadian provinces and certain states of Australia, that have recently reformed their mental health legislation to incorporate the use of advance directives. However, none of these changes fully reflect the obligations as stated in the General Comment, namely that: 10
‘States parties’ obligations to replace substitute decision-making regimes by supported decision-making regimes requires both [emphasis added] the abolition of substitute decision-making regimes and the development of supported decision-making alternatives. The development of supported decision-making systems in parallel with the maintenance of substitute decision-making regimes is not sufficient to comply with article 12 of the Convention’ (para. 28).
Use of advance directives for mental healthcare – Aotearoa New Zealand
International research has advocated for interventions facilitative of pre-event planning, including MHADs, as supported decision-making mechanisms. Reference Sugiura, Pertega and Holmberg20
Recent New Zealand research has explored the creation and promotion of the use of MHADs using online surveys Reference Lenagh-Glue, O’Brien, Dawson, Thom, Potiki and Casey9 and hui (focus groups) with tāngata whaiora (Māori: ‘people seeking wellness’) and whānau (Māori: family and wider kinship group) to ascertain what they would want to see in such an instrument and their attitudes to its use. Reference Thom, Lenagh-Glue, O’Brien, Potiki, Casey and Dawson21 The resulting instrument was called a mental health advance preference statement (MAPS), which reflected the desire for a clear and concise template that included diverse options expressing preferences. Reference Thom, Lenagh-Glue, O’Brien, Potiki, Casey and Dawson21 A MAPS covers eight domains based on two categories: (a) treatment-related options and (b) personal support choices. Reference Lenagh-Glue, O’Brien, Dawson, Thom, Potiki and Casey9 There was general agreement between service providers and tāngata whaiora/whānau that this was the right content for MAPS. There was less agreement concerning their perceived value and utility. Service providers doubted whether MAPS would help tāngata whaiora engage with mental health services or increase their self-management skills. Reference Lenagh-Glue, O’Brien, Dawson, Thom, Potiki and Casey9
Thematic analysis of the content of MAPS subsequently completed showed that they provide expressions of preferences that are both personally meaningful for tāngata whaiora and give practical guidance to clinicians. Reference Thom, Lenagh-Glue, O’Brien, Potiki, Casey and Dawson21 Many preferences demonstrate a strong theme of procedural justice, with tāngata whaiora emphasising the desire to be listened to and respected during treatment or hospital admission. In many cases, preferences did concern the use (or not) of medication, but many advance refusals were mitigated by explanations or suggested alternatives. These findings are consistent with other reports. Reference Srebnik, Rutherford, Peto, Russo, Zick and Jaffe22,Reference Reilly and Atkinson23 This shows that, given the opportunity and the right support, people can create preference statements that both reflect their will and preferences and enable clinicians to support them in planning their care.
Culture matters
Further research in New Zealand has shown the importance of cultural considerations in both the creation and implementation of MAPS. Reference Potiki, Tawaroa, Casey, Thom, O’Brien and Lenagh-Glue24 This is an area that has been ignored in MHADs. Reference Brown25 One study reported strong support for family involvement in creating directives among Latinos in Florida, USA, Reference Van Dorn, Swanson and Swartz26 and a more recent study looked at whether advance choice documents improved the therapeutic relationship for Black people in England who had undergone compulsory mental health treatment. Reference Babatunde, Ruck Keene, Simpson, Gilbert, Stephenson and Chua27 These two studies are rare exceptions but do focus on ethnicity. These studies, however, did not focus on the cultural considerations of the instrument itself or the process of creating a person-centred and culturally relevant MHAD.
The New Zealand study demonstrated the importance of understanding cultural safety, strengths and resources that might reduce distress and provide support options for the patient. Reference Potiki, Tawaroa, Casey, Thom, O’Brien and Lenagh-Glue24 Māori, the Indigenous people of New Zealand, emphasise the importance of the collective over the individual in making healthcare decisions, and the value placed by the collective on a holistic approach to health and well-being. This means that due consideration needs to be afforded to Māori patients whose world is comprised of a network of familial and tribal relationships that draw on heritage and ancestral ties to the land as meaningful cultural resources. Responses to decision-making about health are not so easily addressed by laws and conventions that assume a natural science view of the universe where personhood privileges individual autonomy over obligations to whānau and community. Further, approaches to healthcare that do not account for the patient’s cultural world appear incomplete and uninformed and risk overlooking a rich repository of pro-health resources and pathways. Last, Māori, like many Indigenous peoples, are over-represented in mental health statistics, disproportionately committed under the NZ MHA Reference Elder, Tapsell, Dawson and Gledhill28 and experience differential access to healthcare services as a consequence of socioeconomic disparities. In this regard, the UNCRPD – in particular Article 12 – highlights the importance of ‘equal recognition before the law’, which may serve to do little more than offer lip service to real-world disparities in health in the absence of applied policies, practices and tools to meaningfully promote tino rangatiratanga for chronically disadvantaged patients. Culture matters.
Although it is not possible to extrapolate these findings to other Indigenous cultures, socioeconomic disparities and the flow-on effects on health and mental well-being (and responses to these) are, among other things, shared concerns for Indigenous people worldwide. It is likely that the traditional Western paradigm whereby the individual is the primary driver of personal health decisions may not be culturally valid and alternatives need to be examined.
Conclusion
Health is more than the absence of disease. When a person presents to mental health services they come as a whole person with a wide range of life experiences and a life in context. Satisfying the preferences identified in their MHADs can support their return to health. It helps identify what will make a difference to them if they present again.
Although this may make people’s experiences with services less traumatic and less disruptive to their lives, it will also meet the requirement under the UNCRPD to enable patients to direct the care and treatment they receive.
In our view, an MHAD instrument should be offered to all who experience mental health distress, including people who have been admitted under compulsory treatment orders. An MHAD is created by the person to express their voice. It can cover broader matters than health-related preferences. A member of our team who has used mental health services said: ‘It is often our personal choices that will help us to move out of hospital quicker, and when our priorities are listened to, even if not followed, this can have a positive influence on our behaviour in distressing times’.
To fully meet the requirements outlined in Article 12 of the UNCRPD, that ‘the human rights-based model of disability implies a shift from the substitute decision-making paradigm to one that is based on supported decision-making’ (para. 3), 10 would require a legislative change moving away from judging a person’s mental capacity to make a decision to a situation where the individual’s will and preferences as stated in their MHAD informs clinical practice and enables the person to retain and exercise their legal capacity. Perceptions of risk with potential serious consequences cause some to argue that there should be exceptions available that enable clinicians to override the will and preferences in some situations. Various criteria are proposed in terms of what would be required for such an exception to be available. One of the concerns with an exception is that it can very easily become routine practice. The General Comment on Article 12 is clear that the development of supported decision-making systems in parallel with the maintenance of substitute decision-making regimes is not sufficient to comply with Article 12 of the Convention. The only exception considered acceptable is where, after significant efforts have been made, it is not practicable to determine the will and preferences of an individual, the ‘best interpretation of will and preferences’ must replace the ‘best interests’ determinations. As the evidence that supported decision-making in the absence of any substitute decision-making is growing, 29 the challenge is to focus our efforts on creating and using MHADs that enable individuals’ right to have their will and preferences followed in order to facilitate their recovery journey.
Author contributions
First draft: J.L.-G., G.N.-H. and A.T.; revisions: all authors; drafting of final version and approval for submission: all authors.
Funding
This work was supported by a New Zealand Health Research Council Health Delivery Research Project Grant (ID# 22/670).
Declaration of interest
None.
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