Will, preferences and rights

3.27 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 ALRC considers that a principle of general application needs to embody this emphasis.

3.28 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.

3.29 There is a range of formulations of this idea, 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’.^[16] 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’.^[17]

3.30 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 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 formulation.

3.31 CRPD art 12(4) uses the formulation ‘rights, will and preferences’. The ALRC formulation follows the logic of the spectrum of decision-making from the will and preferences of a person, underpinned by a human rights focus in circumstances where the will and preferences of a person cannot be determined.

3.32 By placing the emphasis on ‘will and preferences’, the emphasis is clearly shifted from ‘best interests’ approaches. Even in those examples of approaches where ‘best interests’ is defined by giving priority to ‘will and preferences’,^[18] the standard of ‘best interests’ is still anchored conceptually in regimes that the ALRC is seeking to distinguish clearly in the National Decision-Making Principles.

3.33 The inclusion of ‘rights’ is the crucial backdrop. 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 particular decision to be made.

Will, Preferences and Rights Guidelines

3.34 The Will, Preferences and Rights Guidelines address the determination of will and preferences and what happens when the ‘will and preferences’ of a person who needs decision-making support cannot, or no longer can, be ascertained.

3.35 These Guidelines provide detail around the limits on the appointment and mode of operation of representative decision-makers that are consistent with the CRPD.Any supported decision-making model should reflect the Guidelines.

Representative Decision-Making Guidelines

3.36 Paragraph (a) of the Wills, Preferences and Rights Guidelines contains several elements. First, there is an acknowledgment that a person may need to be appointed to act for another when that other does not have legal capacity to make decisions for themselves. Secondly, the person who is appointed is described as a ‘representative decision-maker’. Thirdly, the appointment is expressed in limited terms.

3.37 By including such a threshold the ALRC acknowledges that there are times when a person may need to be appointed to act for another, beyond supporting a person who remains as the primary decision-maker. The ALRC has chosen a new term to reflect the role of the person appointed, to embody the model being proposed in this Discussion Paper. By choosing the word ‘representative’ the ALRC seeks to signal that the role is not as a ‘substitute’ for the person who requires support. Whatever the understanding of the concept of ‘substitute decision-maker’,^[19] the ALRC considers that it is better to create some distance from any controversy surrounding this usage and to find a new term.^[20]

3.38 The limitation of the appointment of a representative decision-maker reflects the safeguards provision in art 12(4) of the CRPD.

3.39 The Terms of Reference require the ALRC to consider ‘presumptions about a person’s ability to exercise legal capacity’ and ‘how a person’s ability to independently make decisions is assessed’. The ALRC considers that the threshold needs to be defined in terms which emphasise the ability of a person and proposes Representative Decision-Making Guidelines reflecting this approach.

3.40 The Representative Decision-Making Guidelines sit within the Wills, Preferences and Rights Guidelines. They are set at a fairly high, general, level. They should guide the assessment of decision-making ability, although the exact definition of ability and the way in which it is assessed will vary depending on the particular context in which the assessment is being made. More fine-grained assessments will depend on the kinds of decision to be made. As one stakeholder commented, a tool is needed to assess capacity and it should include

clear legal definitions to determine capacity, and appropriate training on how to use the tool, to reduce the risk of incorrect conclusions relating to an individual’s capacity^[21]

3.41 The ALRC acknowledges that capacity assessments are part of a process of ‘gatekeeping’—and a complement to respect for autonomy. As Dr Mary Donnelly explains,

Where the right of autonomy is recognised, the law has relied on the requirement for capacity to act as gatekeeper for the application of the right. Thus, while respect for autonomy provides the principled foundation for the law’s approach to decision-making, the question of whether or not each individual’s decision will actually be respected is dependent on whether she meets the legal standard for capacity in respect of the decision in question.^[22]

3.42 Because assessments of capacity have served this gatekeeping role, they ‘sort’ people:

People with capacity represent the norm. Those who do not are defined in contrast to this norm; they are, in this sense, the ‘other’.^[23]

3.43 Although this sorting has negative connotations, the ALRC recognises that some form of ‘sorting’ is inescapable in a number of cases. As Donnelly acknowledged, ‘[w]hile capacity is a flawed gatekeeper, it is nonetheless probably the best way of sorting decisions’.^[24] What the ALRC proposes is, however, that the place of such assessments be reconsidered—and, in particular, that it is not a starting point in an expression of principle. The starting point, as National Decision-Making Principle 1, is the right to make decisions. Any assessment should be seen as much further along a spectrum, with the focus being squarely on supporting decisions, rather than assessing whether or not a person can make a decision.

3.44 By proposing Representative Decision-Making Guidelines, the ALRC seeks to foster a nationally consistent approach. In the Issues Paper the ALRC asked whether there should be a nationally consistent approach to defining capacity and assessing a person’s ability to exercise their legal capacity; and, if so, what was the most appropriate mechanism and what should the key elements be?^[25] Stakeholders supported strongly the idea of a nationally consistent approach. For example, the Mental Health Coordinating Council said that it agreed

with the Law Council of Australia that a nationally consistent approach to the assessment of capacity in the context of substitute decision-making ‘is highly desirable in order to promote greater clarity and ultimately, to more effectively provide protection and foster individual autonomy as circumstances require’.^[26]

3.45 The Representative Decision-Making Guidelines reflect an approach to ability that is functional (ability to make the particular decision in question), not outcome-based (the result or wisdom of the decision), or status-based (because of a condition). A functional approach of this kind ‘seeks to maximise the circumstances in which the right of autonomy is protected’.^[27] As the Law Commission of England and Wales concluded in a review of ‘mental incapacity’ in 1995, status-based assessments should be rejected as being ‘quite out of tune with the policy aim of enabling and encouraging people to take for themselves any decision which they have capacity to take’.^[28] In that inquiry, the Law Commission received a ‘ringing endorsement’ of the functional approach.^[29]

3.46 In its extensive inquiry on Queensland’s guardianship laws, the QLRC commented that the functional approach is a ‘widely accepted modern capacity model’:^[30]

It has been suggested that one of the advantages of the functional approach is that it ‘best accommodates the reality that decision-making capacity is a continuum rather than an endpoint which can be neatly characterised as present or absent’. In contrast to the status model, there is no requirement for the presence of a particular type of disability or condition. The relevant question is whether the adult lacks capacity for making a decision about a given matter, for whatever cause and for whatever reason.^[31]

3.47 The ALRC notes some criticism by the UNCRPD of what it described as a functional approach in its General Comment on art 12:

The functional approach attempts to assess mental capacity and deny legal capacity accordingly. … This functional approach is flawed for two key reasons. The first is that it is discriminatorily applied to people with disabilities. The second is that it presumes to be able to accurately assess the inner-workings of the human mind and to then deny a core human right—the right to equal recognition before the law—when an individual does not pass the assessment. In all these approaches, a person’s disability and or decision-making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law. Article 12 does not permit such discriminatory denial of legal capacity, but rather requires that support be provided in the exercise of legal capacity.^[32]

3.48 When the General Comment was in draft form, the emphasis in this paragraph was softened by a later comment that ‘functional tests of mental capacity, or outcome-based approaches that lead to denials of legal capacity violate Article 12 if they are either discriminatory or disproportionately affect the right of persons with disabilities to equality before the law’ (emphasis added).^[33] However, the final form of the General Comment dropped these words. The ALRC considers that, with appropriate safeguards, and a rights emphasis, there is no ‘discriminatory denial of legal capacity’.

3.49 The starting point of any list of Representative Decision-Making Guidelines needs to include a presumption of ability.^[34] It reflects the object of CRPD art 12(2)—‘that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of their lives’. It also reflects the ALRC’s framing principles, particularly of equality and autonomy. A presumption of capacity is also the starting point of the common law as discussed above. It places the onus on those who wish to contest that a person has decision-making ability with respect to a particular transaction, or generally.

3.50 Legislative statements of this presumption often use the word ‘capacity’ and include the rider ‘unless it is established that he or she lacks capacity’. The ALRC proposes keeping the rider out of the Guidelines, reflecting the rights emphasis of the CRPD, rather than its qualification.

3.51 Paragraph (b) of the Representative Decision-Making Guidelines focuses on having ability, rather than not having it:

(b) A person has ability to make a decision if they are able to:

(i) understand the information relevant to the decision and the effect of the decision;

(ii) retain that information to the extent necessary to make the decision;

(iii) use or weigh that information as part of the process of making the decision; and

(iv) communicate the decision.

3.52 There are many other comparable provisions.^[35] The VLRC, for example, includes both ‘Defining Capacity’ and ‘Defining Incapacity’, which are mirror images of each other.^[36] The ALRC proposes to keep the focus on the affirmation of ability, rather than its converse.

3.53 The formulation in paragraph (c) of the Representative Decision-Making Guidelines is suggested to get away from status-based assessments:

(c) A person must not be assumed to lack decision-making ability on the basis of having a disability.

3.54 It reflects comments by the UNCRPD in its General Comment on Art 12, and its criticism of conflating legal and mental capacity:

Legal capacity and mental capacity are distinct concepts. Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency). It is the key to accessing meaningful participation in society. Mental capacity refers to the decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors. … Under article 12 of the Convention, perceived or actual deficits in mental capacity must not be used as justification for denying legal capacity.^[37]

3.55 The ALRC has deliberately omitted any qualification, such as ‘solely on the basis of disability’ in the proposed guideline.

3.56 Arnold and Bonython submitted that stereotyping detracts from equality, and prevents the ‘flourishing’ of people with disability:

Ultimately equality is a pernicious abstraction unless it fosters flourishing. Equality is significant because inequality is associated with discrimination, in particular the non-recognition of capabilities on the basis of stereotypes and the retention of barriers to the fulfilment of both people with disabilities and people around them.^[38]

3.57 Paragraphs (e)–(f) of the Representative Decision-Making Guidelines reflect a functional assessment of ability:

(e) A person’s decision-making ability will depend on the kinds of decision to be made.

(f) A person’s decision-making ability may evolve or fluctuate over time.

3.58 These Guidelines may apply to a decision, or types of decision, depending on the circumstances. As NCOSS submitted:

Determinations about capacity must be made not only on a person-by-person basis, but also about every separate decision for each person, because people may have different capacity to make different decisions at different times.^[39]

3.59 Other law reform bodies have reached similar conclusions.^[40] The New South Wales Legislative Council Standing Committee on Social Issues recommended, for example, that

the legislative definition in NSW should define ‘capacity’ with reference to the ability to understand, retain, utilise and communicate information relating to the particular decision that has to be made, at the particular time the decision is required to be made, to foresee the consequences of making or not making the decision and to separate the concepts of ‘incapacity’ and ‘disability’.^[41]

3.60 Paragraph (d) of the Representative Decision-Making Guidelines rejects an outcomes-based approach:

(d) A person’s decision-making ability is to be assessed, not the outcome of the decision they wish to make.

3.61 Paragraph (d) captures what is described as ‘the dignity of risk’, which is underpinned by the framing principle of autonomy. As Donnelly explains,

Respect for the liberal principle of autonomy requires that external factors, including the outcome of the decision reached and the degree of risk assumed, are irrelevant to the determination of capacity. … [R]espect for autonomy is premised on allowing each individual to determine for herself what is good. Therefore, whether or not a person’s decision complies with other people’s perception of ‘the good’ is irrelevant to whether the person has capacity. In the words of the Law Commission, according a role to the nature of the decision reached is inappropriate because it ‘penalises individuality and demands conformity at the expense of personal autonomy’.^[42]

3.62 Paragraph (g) of the Representative Decision-Making Guidelines reflects the second of the National Decision-Making Principles concerning support:

(g) Decision-making ability must be assessed in the context of available supports.

3.63 The VLRC recommended, similarly, that a person ‘should not be considered to lack the capacity to make a decision if it is possible for them to make that decision with appropriate support’.^[43] An assessment of ability in terms of support incorporates the encouragement of supporting—and thereby enhancing—a person’s ability. The Mental Capacity Act 2005 (UK) s 1(3) provides, for example, that ‘[a] person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’. Donnelly describes this provision as ‘one of the most striking innovations’ in the UK Act.^[44]

3.64 Paragraph (h) of the Representative Decision-Making Guidelines focuses on communication:

(h) In communicating decisions, a person is entitled:

(i) to communicate by any means that enables him or her to be understood; and

(ii) to have his or her cultural and linguistic circumstances recognised and respected.

3.65 The Terms of Reference require the ALRC to consider ‘the use of appropriate communication to allow people with disability to exercise legal capacity’. Comparable examples include:

• for (i), the QLRC recommendation that ‘a person is not to be regarded as unable to understand the information relevant to a decision if he or she is able to understand an explanation of it given to the person in a way that is appropriate to his or her circumstances (using simple language, visual aids or any other means)’;^[45] and

• for (ii), the VLRC recommendation that ‘[p]eople with impaired decision-making ability … ‘should have their cultural and linguistic circumstances recognised and respected by others’.^[46]

Appointment

3.66 Paragraph (b) of the Will, Preferences and Rights Guidelines provides that:

The appointment of a representative decision-maker should be limited in scope, be proportionate, and apply for the minimum time

3.67 This proposed guideline reflects CRPD art 12(4)—a safeguards provision stipulating that ‘all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law’. The measures referred to relate to decision-making support, and can apply to appointment of representative decision-makers, who must be ‘free of conflict of interest and undue influence’. The appointments covered by art 12(4) must also be ‘proportional and tailored to the person’s circumstances, apply for the shortest time possible’. A further aspect of art 12(4) is the provision that the ‘measures’ should be ‘subject to regular review by a competent, independent and impartial authority or judicial body’. The ALRC includes this aspect of art 12(4) in the Safeguards Guideline, considered below.

3.68 The Guideline also reflects that, in some circumstances, another person may be needed to act for a person who requires full decision-making support.

Supporting decisions

3.69 Paragraph (c) of the Will, Preferences and Rights Guidelines provides:

(c) Supporting decision-making:

(i) a person’s will and preferences, so far as they can be determined, must be given effect;

(ii) where the person’s will and preferences are not known, the representative must give effect to what the person would likely want, based on all the information available, including communicating with supporters;

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

3.70 This Guideline is a key element in the National Decision-Making Principles and reflects the importance of the autonomy of the individual. Decisions for those who may require support in making decisions must be directed by the will and preferences of the individual. The Office of Public Advocate (Qld) submitted:

Regardless of views about the compatibility of guardianship laws with the Convention, there is general recognition that the focus must now move from the challenges facing a person with disability to the supports that should be provided to enable them to make decisions and exercise their legal capacity. This means that the appointment of a substitute decision-maker should not preclude efforts to support a person to make their own decisions.^[47]

3.71 The challenge in advancing a supported decision-making approach is, as Donnelly suggests, ‘to provide meaningful protection for autonomy notwithstanding incapacity’.^[48] She wrote that there are two broad ways ‘to protect the autonomy of a person lacking capacity’:

The first involves the preservation of the autonomy of the once capable person (sometimes described as precedent autonomy), either through formal advance decision-making mechanisms or the less formal means of taking account of past views, preferences and opinions in the decision-making proves. The second involves supporting people lacking capacity so as to enable them to participate to the maximum degree possible in decision-making. The first of these is most consistent with the traditional liberal approach to decision-making for people lacking capacity while the second is more in line with the approach favoured by the CRPD.^[49]

3.72 The starting point in paragraph (c)(i) of the Will, Preferences and Rights Guidelines is necessarily the ability to ascertain the will and preferences of the person being supported. Ascertaining the will and preferences of a person is central to the paradigm shift signalled in the CRPD. It involves an emphasis on participation and communication. In practice, however, there will be a limit: cases where it is not possible to determine a person’s will and preferences. In practice there may also be situations where the will and preferences of a person are known but are likely to cause harm to the person or others. Cases of possible harm are considered under the Safeguards Guidelines, Proposal 3–9.

3.73 Paragraph (c)(ii) of the Will, Preferences and Rights Guidelines provides the standard for how a representative should act, in circumstances where the supported person’s will and preferences are not known. The representative must seek to ascertain what the person would likely have wanted in the particular circumstances. This requires a consideration of past information about decision-making choices. A key source of such information is likely to be the person’s supporters. For example, the Mental Capacity Act 2005 (UK) includes a list of those who could provide such information.^[50] Similar lists have been included in, for example, the Mental Health Act 2014 (Vic);^[51] and the Mental Health Bill 2013 (WA).^[52]

3.74 Paragraph (c)(iii) of the Will, Preferences and Rights Guidelines is intended to embody a ‘human rights’ approach, where the will and preferences cannot be determined by any means:

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

3.75 The underlying idea in this guideline is that the default position should not be expressed in terms of a ‘best interests’ standard.^[53] There are different ways that this could be expressed. The VLRC, for example, recommended the ‘promotion of the personal and social wellbeing of the person’ to replace ‘best interests’.^[54] The QLRC recommended that powers in the amended legislation should be used in a way that ‘promotes and safeguards’ and is ‘least restrictive’ of the adult’s ‘rights, interests and opportunities’.^[55]

3.76 The kinds of human rights embraced by this 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.

3.77 Hence where a representative decision-maker is appointed, the standard to be applied in decision-making is to give priority to the will and preferences of the person—these must direct the decision or types of decision to be made—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 that is also included specifically in the Safeguards Principle.^[56]

3.78 While autonomy is a key principle of the CRPD, 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.^[57]