Will, preferences and rights

Principle 3: Will, preferences and rights

The will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.

3.50       The Terms of Reference direct the ALRC to consider ‘how maximising individual autonomy and independence’ can be modelled in Commonwealth laws and legal frameworks. The emphasis on the will and preferences of a person who may require support in making decisions is at the heart of the paradigm shift away from ‘best interests’ standards, as discussed in Chapter 2. Given that the focus on will and preferences is such a key idea in all the discussions, the ALRC considers that it needs to be identified as a general principle. It reflects the framing principles of dignity, equality, autonomy, and inclusion and participation.

3.51       There are a range of formulations of this concept, including those of the VLRC and the QLRC in their reports on guardianship. In its list of ‘new general principles’, the VLRC included the principle that ‘people with impaired decision-making ability … have wishes and preferences that should inform decisions made in their lives’.[43] The QLRC recommended that emphasis should be placed on promoting and safeguarding ‘the adult’s rights, interests and opportunities’ and ‘the importance of preserving, to the greatest extent practicable, the adult’s right to make his or her decisions’.[44]

3.52       The ALRC has chosen ‘must’ in the formulation of National Decision-Making Principle 3, to signal that this general principle has an important role in modelling Commonwealth laws. The word ‘direct’ should also be used, rather than a word like ‘inform’, as ‘direct’ attaches more weight to their will and preferences than does ‘inform’. The ALRC also considers that the principle should not be qualified by words such as ‘to the greatest extent practicable’, which is contained, for example, in the QLRC formulations.[45] What happens when a person’s will and preferences cannot be determined is considered as a separate issue in the Guidelines.

3.53       Article 12(4) of the CRPD uses the formulation ‘rights, will and preferences’. The ALRC formulation follows the spectrum of decision-making based on the will and preferences of a person, through to a human rights focus in circumstances where the will and preferences of a person cannot be determined. The inclusion of ‘rights’ is the crucial safeguard. In cases where it is not possible to determine the will and preferences of the person, the default position must be to consider the human rights relevant to the situation as the guide for the decision to be made.

3.54       The emphasis should be shifted from ‘best interests’ to ‘will and preferences’ approaches. Even in those examples of approaches where ‘best interests’ are defined by giving priority to ‘will and preferences’,[46] the standard of ‘best interests’ is still anchored conceptually in regimes from which the ALRC is seeking to depart.

3.55       Stakeholders strongly supported this approach.[47] For example, QDN said that ‘[t]his is an important development in acknowledging the rights of an individual who is unable to make a decision independently’.[48] The Australian Research Network on Law and Ageing welcomed

the emphasis of the Principles on the human rights of the person to whom the decision relates. In particular we note the importance of looking beyond the concept of promoting the personal autonomy of persons, to include the wider right of respect for the person’s dignity. It has been recognized that dignity is a wider concept than autonomy, and a universal value to which all persons are entitled. It therefore has special relevance for those whose capacity is compromised, either because of conditions producing fluctuating capacity, or for more chronic situations.[49]

3.56       Principle 3 applies to both supporters and representatives. In the ALRC’s model, where a person appoints a supporter, as set out in the Commonwealth decision-making model,[50] decisions remain those of the person, not of the supporter. The concern is to describe the relationship between the person being supported and the supporter,[51] and establish the expectations of a formal supporter role. Chapter 4 discusses the duties of supporters and representatives.

3.57       To provide greater clarity about the distinction between a supporter and a representative and full emphasis to will and preferences in decision-making, the Will, Preferences and Rights Guidelines (below) refer to both roles.[52] The Principle has a role in embodying the move away from objective ‘best interests’ approaches, which is most necessary when a person is appointed to make decisions on behalf of another. In the ALRC’s model, this occurs when another person is appointed as a ‘representative’. The significant shift is in the decision-making standard by which that person must act, and the constraints on the appointment of a representative in the first place. Given that such appointments are made under state and territory law, the full implementation of the ALRC’s recommendations will be dependent on reform of state and territory legislation.

Will, Preferences and Rights Guidelines

Recommendation 3–3               Will, Preferences and Rights Guidelines

(1)     Supported decision-making

(a)      In assisting a person who requires decision-making support to make decisions, a person chosen by them as supporter must:

          (i)      support the person to express their will and preferences; and

          (ii)     assist the person to develop their own decision-making ability.

(b)     In communicating will and preferences, a person is entitled to:

          (i)      communicate by any means that enable them to be understood; and

          (ii)     have their cultural and linguistic circumstances recognised and respected.

(2)     Representative decision-making

Where a representative is appointed to make decisions for a person who requires decision-making support:

(a)      The person’s will and preferences must be given effect.

(b)     Where the person’s current will and preferences cannot be determined, the representative must give effect to what the person would likely want, based on all the information available, including by consulting with family members, carers and other significant people in their life.

(c)      If it is not possible to determine what the person would likely want, the representative must act to promote and uphold the person’s human rights and act in the way least restrictive of those rights.

(d)     A representative may override the person’s will and preferences only where necessary to prevent harm.

3.58       The Will, Preferences and Rights Guidelines begin by clearly differentiating between supported and representative decision-making.[53] The starting point, in both cases, is that decisions must be directed by the will and preferences of the person needing decision-making support.

3.59       Paragraph (1) defines the meaning of supported decision-making, in terms of the role of the supporter and the right of the person being supported to express their will and preferences.

3.60       Paragraph (2) sets the standard for representative decision-making. Importantly, the Will, Preferences and Rights Guidelines address what should happen when the current will and preferences of a person cannot be determined. The focus should be on what the person’s will and preferences would likely be. In the absence of a means to determine this, a new default standard is advocated—expressed not in terms of ‘best interests’, but in terms of human rights.

3.61       Paragraph (2)(a) provides that a person’s will and preferences must be given effect, which is central to the paradigm shift signalled in the CRPD and involves an emphasis on participation and communication.

3.62       Paragraph (2)(b) provides the standard for how a representative should act, in circumstances where the supported person’s will and preferences cannot currently be determined. The representative must seek to ascertain what the person would likely have wanted in the particular circumstances. This is essentially a past preferences approach.[54] It requires a consideration of past information about decision-making choices. A key source of such information is likely to be the person’s family members, carers and other significant people in their life.

3.63       The Mental Capacity Act 2005 (UK) includes a list of those who could provide such information.[55] Similar lists have been included in, for example, the Mental Health Act 2014 (Vic);[56] and the Mental Health Bill 2013 (WA).[57] Consulting family members and others provides a further avenue for recognising the role of family members and carers.

3.64       Stakeholders endorsed the recognition of family as supporters who can provide relevant information regarding will and preferences. For example, the Mental Health Coordinating Council submitted:

The role of family members and carers should be recognised in Commonwealth laws. The supporting policy frameworks must reflect that those assessing capacity and supporting decision-making must listen to, learn from and act upon communications from the individual and their carers about what is important to each individual. This involves acknowledging each individual is an expert on their own life and that their ‘recovery’ and care involves working in partnership with individuals and their carers to provide support in a way that makes sense to them and that assists them realise their own hopes, goals and aspirations.[58]

3.65       Paragraph (2)(c) embodies a human rights approach, where the will and preferences cannot be determined by any means. The underlying idea in this guideline is that the default position should not be expressed in terms of a ‘best interests’ standard.

The ‘best interests’ principle is not a safeguard which complies with article 12 in relation to adults. The ‘will and preference’ paradigm must replace the ‘best interests’ paradigm to ensure that persons with disabilities enjoy the right to legal capacity on an equal basis with others.[59]

3.66       The move away from a best interests standard was also strongly supported by stakeholders.[60] There are different ways that this shift can be expressed. The VLRC, for example, recommended that the ‘promotion of the personal and social wellbeing of the person’ replace ‘best interests’.[61] The QLRC recommended that powers should be used in a way that ‘promotes and safeguards’ and is ‘least restrictive’ of an adult’s ‘rights, interests and opportunities’.[62]

3.67       The kinds of human rights encompassed by the Guideline include the various matters set out in the CRPD, including:

  • respect for inherent dignity—preamble and art 3;
  • non-discrimination—art 5;
  • liberty and security—art 14;
  • freedom from torture or cruel, inhuman or degrading treatment or punishment—art 15;
  • physical and mental integrity—art 17;
  • liberty of movement—art 18;
  • independent living—art 19;
  • respect for privacy—art 22;
  • respect for home and family—art 23; and
  • participation in political and public life—art 29.

3.68       While the ALRC has sought distance from the ‘best interests’ standard of previous eras, the Law Council of Australia submitted that

the ‘best interests’ of an individual should be consistent with their will and preferences in the majority of circumstances. If these are inconsistent, or if one is unable to be ascertained, the objective and subjective elements of each approach can be balanced by reference to appropriate international human rights standards.

The Law Society of New South Wales advises that ‘best interests’ standards should be retained as a last resort for people with disabilities whose will and preferences cannot be determined, for example, to prevent elder abuse.[63]

3.69       Some have suggested the retention of the ‘best interests’ approach as a fallback.[64] Part of the issue with the ‘best interests’ standard was said to be that it was poorly understood. The Office of the Public Advocate (Qld) observed that

what is in a person’s best interests has often been conflated with ‘medical judgement’ or another professional’s judgement. Such determinations do not take into account the particular views, wishes and needs of the person.

‘Best interests’ is often applied in an unsystematic way without any unpacking of relevant considerations, including the values and principles applied in the decision-making process.[65]

3.70       The OPA (Qld) also argued that, without ‘careful guidance, education, training and advice’, a rights-based approach could be similarly fraught and that the ‘kind of cultural change that needs to be achieved will be difficult to effect without a holistic strategy’.[66]

[S]upporters and other decision-makers must be provided with guidance about how to apply a rights-based approach, including how to evaluate and weigh different considerations. Formal guidelines or codes of practice under the relevant legislation should also be provided to guide decision-makers in implementing a rights-based approach.[67]

3.71       The importance of developing codes of practice was also emphasised by the Mental Health Coordinating Council:

Whilst we agree that there needs to be a consistent approach to the assessment of capacity in the context of representative decision making, promoting individual autonomy as circumstances require, it is important that the process does not become too proscriptive and therefore run the risk of leading to, for example, harm or neglect. At the end of the day the legislation must have an underpinning code of practice that provides the key framework and principles of best practice.[68]

3.72       In its General Comment on art 12, the UNCRPD suggested that, if the will and preferences of a person could not be determined, the new standard to replace ‘best interests’ should be the ‘best interpretation of will and preferences’.[69]

3.73       CDLP Galway referred to this ‘best interpretation’ approach in submitting that,

Whereas good efforts should be made to determine the will and preference of the relevant person, where the ‘best interpretation’ arrived at leads to a conflict of human rights (eg right to health in conflict with right to self-determination), it may be better for outside decision-makers to adhere to subjective guidance and follow the principle of ‘best interpretation’ rather than setting forth ‘objective’ rules which would allow the representative to decide which balance of human rights to achieve.[70]

3.74       CDLP Galway also referred to amendments to Irish legislation, which inserted the following definition of ‘best interpretation’:

the interpretation of the relevant person’s past and present communication (using all forms of communication, including, where relevant, total communication, augmented or alternative communication, and non-verbal communication, such as gestures and actions) that seems most reasonably justified in the circumstances.[71]

3.75       It was suggested that ‘this language could be used to guide the ALRC in its development of final recommendations on how will and preferences may be determined in situations of last resort’.[72] Such an approach may sometimes be instructive in terms of how current and past will and preferences are determined under paragraphs (2)(a) and (b) of the Will, Preferences and Rights Guidelines.

3.76       Consistently with the CRPD, it is important to leave the ‘best interests’ language behind in advancing supported decision-making in Australian laws and legal frameworks. However, it is not clear that the ‘best interpretation’ approach should necessarily be the default standard when a person’s will and preferences are not known, nor are capable of being made known. Judges have developed other approaches in such contexts, for example:

  • what a reasonable and ordinary man might do in the position of a ‘lunatic’ with respect to the disposition of his surplus income—the standard developed by Lord Eldon LC in the leading case concerning the ‘substituted judgment’ approach;[73] and
  • the ‘wise and just husband and father’ approach in relation to family provision litigation.[74]

3.77       The danger in such approaches is that they reveal a certain blurring of the subjective and objective in the creation of a ‘legal fiction’.[75] They also run the risk of contradicting other principles advocated by the UNCRPD in its General Comment, in particular that

All forms of support in the exercise of legal capacity (including more intensive forms of support) must be based on the will and preference of the person, not on what is perceived as being in his or her objective best interests.[76]

3.78       The ALRC considers that it is better to use human rights standards as the benchmark, accompanied by appropriate guidelines, codes of practice and other explanatory material, developed over time. Such material should be accompanied by appropriate training and guidance.

3.79       Where a representative is appointed, the decision-making standard to be applied is, therefore, to give priority to the will and preferences of the person but, if these cannot be determined, decision-making must emphasise the human rights of the person, particularly as articulated in the CRPD. Decisions must also be made on the basis of the least restrictive option—a point included specifically in the Safeguards Guidelines.[77] This approach uses objective standards—because the subjective cannot be determined.

3.80       The NSW Council for Intellectual Disability (NSWCID) questioned whether human rights provide an adequate basis for decisions where a person’s will and preferences cannot be ascertained. The NSWCID noted that there is limited understanding of human rights and there are many international instruments. Different rights may point to different outcomes ‘so that quite complex balancing exercises are required to make a decision’.

The result of all this might be that only highly educated people were qualified to make representative decisions. We are concerned about the prospect of removing from eligibility as representatives down to earth practical family members who have a lifetime’s knowledge of a person with disability.[78]

3.81       The NSWCID preferred the standard recommended by the VLRC—that representatives be required to exercise their powers ‘in a manner that promotes the personal and social wellbeing of the person’, with guidance from a list of relevant factors.

3.82       Autonomy is a key principle of the CRPD, but a human rights approach places autonomy in a much wider context. As Donnelly suggests, a human rights framework ‘provides a mechanism within which to deal with questions of limitations on the right of autonomy’:

The contribution of the CRPD is likely to be most significant in providing human rights support for the development of legal obligations to empower patients, in the context of capacity assessment, decision-making on behalf of people lacking capacity and treatment for a mental disorder.[79]

3.83       The human rights approach is also reflected in the paragraph 2(d) of the Will, Preferences and Rights Guidelines, which provides that a representative may override the will and preferences of a person only where necessary to prevent harm. This is consistent with the CRPD in that, for example, art 17 of the CRPD may require the representative to make a decision that protects the person’s ‘physical and mental integrity’, notwithstanding the decision conflicts with the person’s expressed will and preferences. A qualification of this kind tests the limits of autonomy, particularly where the limitation concerns harm to oneself. Examples are seen usually in the context of mental health legislation: to save a patient’s life, or to prevent a patient from seriously injuring themselves or others. Safeguards may be included in terms of ensuring that the course of action proposed is the ‘least restrictive’ option.[80] The latter approach is captured in the Safeguards Principles, considered below.

3.84       Whenever a limit is included, considerable care is needed in translating it into practice. A provision that a person’s will and preferences may be overridden based on the outcome of a decision—in this case, harm—runs contrary to a focus on ability that is not outcomes-based.[81] However, it is not necessarily inconsistent with a principle of autonomy, as autonomy is not an absolute concept. The classical conceptualisation of autonomy, by John Stuart Mill, recognised some limit—that it may be limited in order ‘to prevent harm to others’.[82] He gave the example of a wayfarer, summarised by Donnelly as follows:

Mill describes a wayfarer approaching a dangerous bridge in circumstances in which it is uncertain whether she is aware of the danger. He states that it is permissible to stop the wayfarer and warn her of the dangers ahead but if, following the warning, the wayfarer still wishes to proceed, she should be permitted to do so. Mill also recognised that interference with individual freedom could be justified in order ‘to prevent harm to others’. However, this justification does not allow a wholesale overriding of individual freedom. While acknowledging that ‘no person is an entirely isolated being’, Mill argued that a person can be stopped from doing something only if, in doing that thing, she would ‘violate a distinct and assignable obligation’ to others.[83]

3.85       Overriding will and preferences on the basis of preventing harm to others is one aspect of a harm principle; another concerns the issue of preventing harm to oneself. Arnold and Bonython defended the need to make decisions on behalf of people in some contexts and suggested that this is consistent with human rights law and with ‘accepted bioethical standards and with the practicalities of both health care and social activity’:

It is axiomatic that all Australians, with or without disabilities, may experience life-threatening circumstances in which a decision should be made by a medical practitioner or other recognised decision-maker within a coherent and transparent legal framework to preserve the life of the individual. From a human rights perspective it is also axiomatic that interventions that are contrary to the will of some individuals will be necessary in order to both preserve the life of those individuals and the lives of the intimates or other associates of those individuals.[84]

3.86       Intervening to preserve the life of a person against their will and preferences is what CDLP Galway described as one of the ‘hard cases’. They give the example of a person with anorexia:

Many people with anorexia express a will to live, but a preference to not eat. In these cases, an outside decision-maker may be involved, but would still be restricted from making a decision that was contrary to the individual’s expressed will and preference. PEG feeding, for example, would only be allowed if the individual agreed to it. These situations will always be difficult—they are difficult under ‘best interests’ determinations and they will continue to be difficult under an approach that prioritises will and preference.[85]

3.87       While emphasising the support paradigm and the paramountcy of will and preferences, CDLP Galway said that this ‘does not mean that vulnerable individuals who are having difficulty expressing their will and preference are going to be left by the wayside in emergency situations’:

For example, in a situation in which an individual is displaying behaviours of serious self-harm, the support paradigm does not leave the individual to perish. Instead, it asks support people around the person to closely examine what is happening and to support the individual by taking actions that will facilitate her or his decision-making ability to a point at which she or he can clearly express her or his will and preferences. This could mean a variety of things, including but not limited to assisting the individual in stopping the self-harming behaviour and interacting with the individual in a caring and understanding manner and/or attempting to create an environment that the individual feels safe and comfortable in to allow her or him to be in an optimal decision-making scenario. Throughout any interaction, the goal remains of arriving at the will and preference of the individual. Further, according to the terms of the CRPD, any emergency interventions must adhere to the principle of non-discrimination by ensuring that criteria for crisis interventions do not discriminate on the basis of disability (for example, by using mental health diagnosis or mental capacity assessments).[86]

3.88       How does one achieve an intervention which is both respectful of will and preferences, but is also least restrictive of the person’s human rights? CDLP Galway argued that permitting intervention in the way they described is not the same, nor should it be, ‘equated to substitute decision-making systems that currently exist’:

There are clear distinctions, which are 1) using ‘will and preference’ as the guiding paradigm as opposed to ‘best interest,’ 2) not denying legal capacity to individuals with disabilities on a different basis, and 3) not imposing outside decision-makers against the will of the individual.

However, there are times in which a decision needs to be made and the relevant individual is not able to make a decision or needs assistance in making the decision. The foregoing explanation is meant to show that Article 12 can and does address these situations without the need for substituted decision-making. However, it is also important to stress that these solutions are ONLY intended to apply to the ‘hard cases’, and should not encroach into cases where an individual is expressing a will and preference—even where the will and preference of the individual is contrary to medical advice or to advice of mental health professionals. It should also not be used to impose an outside decision-maker on a person who is expressing an unpopular or unorthodox decision. The solutions proposed for these ‘hard cases’ only apply at the end of a process where there is a genuine inability to understand a person’s will and preference or where it is impossible to realise the person’s will and preferences without breaching some other aspect of the law.[87]

3.89       The Australian Guardianship and Administration Council (AGAC) submitted similarly that,

in certain circumstances, the views of the person might lead to outcomes that are significantly detrimental to the person’s health and welfare. In these circumstances, recognition of the representative’s authority to make decisions contrary to the wishes of the person is essential.[88]

3.90       CDLP Galway said that, while intervention ‘in some exceptional cases which conflicts with the individual’s will and preferences should be permissible’, they need to be ‘disability-neutral and not justified on the basis of an individual’s decision-making ability’.[89]

3.91       The development of codes of practice, guidance and accountability measures will, over time, lead to a shift in ‘culture’ and practice. An important aspect of this cultural shift arises in decisions where the person involved has expressed will and preferences that are likely to be financially detrimental. The issue is captured in the phrase ‘dignity of risk’. While the UNCRPD has referred to the need to protect people from ‘undue influence’, it has also said that protection must ‘respect the rights, will and preferences of the person, including the right to take risks and make mistakes’.[90]