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CapacityAndTheLaw

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Chapter 1- What is capacity?

28 July 2021 - 14:09 | Version 18 |

Contributed by Nick O'Neill and Carmelle Peisah and current to 30 April 2021.

1.1 Introduction

The field of capacity and decision-making is a truly “medico-legal” field, representing an interface between the legal and medical (actually health professional) disciplines. Much major decision-making involves execution of legal documents and is regulated by the common law and legislation. It requires the involvement of legal professionals, while the relationship between decision-making and health and well-being often necessitates the involvement of health care professionals.

Good practice for health care professionals working in this area requires a careful balance between the sometimes-competing medical and ethical principles of promoting autonomy (the individual’s right to self-determination and independence) and beneficence (the need for the clinician to act for the benefit of the patient). Ultimately the goal is to ensure that decisions are not made by patients or clients without capacity, while facilitating where possible, the participation of impaired clients in important and meaningful processes from which they might otherwise have been excluded. Lawyers and health professionals alike need to be conscious of the rights of people with either cognitive impairment or mental illness to have agency and autonomy, and to have independence in making their own decisions and choices where possible, or if not, to be supported to maximise their participation and involvement.

This requires both an understanding of human rights frameworks and the law which underpin decision–making as well as the kind of conditions which afflict humans and impair their ability to make decisions. Surprisingly, although determining decision-making capacity is part of everyday business for many health professionals, there are known gaps in knowledge and education regarding capacity amongst health professionals, who frequently report a lack of confidence in assessing capacity (1). In this book, we aim to redress these gaps, but further education for health care professionals can be gained from a brief online capacity education tool (2).

The United Nations Convention on the Rights of Person with Disabilities (CRPD), the first binding international human rights instrument explicitly to address disability,(3) opened for signature in March 2007 and entered into force in May 2008. Australia ratified the CRPD in July 2008 and the optional protocol in 2009. As noted by the Australian Law Reform Commission, the CRPD consolidates and clarifies the application of existing human rights to persons with disabilities, and can assist with the interpretation and the development of the common law domestically.(4)

The CRPD provides the framework for many of the legal and ethical principles espoused in this text, and where relevant, we refer to its application. In particular, maximising individual independence autonomy, choice and personhood, while safeguarding against abuse and undue influence underpins the exploration of the concept of capacity. Accordingly, we highlight and focus those CRPD Articles which have special relevance to this, namely, Articles 1, 12 and 16.(5)

Article 1 of CRPD -"Purpose" - states:

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

Article 12 - "Equal Recognition Before The Law" states:
  1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
  2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
  3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
  4. States Parties shall ensure 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. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
  5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

Article 16 - "Freedom from exploitation, violence and abuse" states:
  1. States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.
  2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive.
  3. In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities.
  4. States Parties shall take all appropriate measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self-respect, dignity and autonomy of the person and takes into account gender- and age-specific needs.
  5. States Parties shall put in place effective legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.

Article 25 - Health

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
  1. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
  2. Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
  3. Provide these health services as close as possible to people’s own communities, including in rural areas;
  4. Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
  5. Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
  6. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

How is Article 25 relevant to capacity? Too often, in our increasingly resource-poor or resource-restricted health environments, non-competent refusals to have health care or treatment are used as justifications to deny people with disability their due right to health care. A non-competent refusal to have health care or treatment should never be used as reason to deny a person that right and that rather, a decision should be made about the treatment by a proxy or substitute decision-maker based on the person’s best interests.

Legal Capacity is one of the significant principles of CRPD. Flynn and Arstein-Kerslake (2012) define legal capacity as:

[A] possession of the individual. It includes the ability to be a holder of rights as well as an actor in law. Legal capacity obligates the state to protect, promote, and enforce an individual’s rights. Simultaneously, an individual’s legal capacity allows her to interact with the law to have her rights enforced. Furthermore, an individual’s legal capacity allows her to take actions that the law must recognise such as signing a contract, getting married, voting, and making medical decisions. Legal capacity is the law recognizing an individual’s personhood. Without legal capacity, you are a mere ‘object’ under the law (not a ‘subject’ within it).(6)

As such, legal capacity (7), a fundamental human right, must be distinguished from the concept of decisional capacity which we address in this book. Supported decision making, we suggest below, is reliant on capacity assessment. Browning et al suggests that supported decision-making is a process that enables some people to exercise their legal capacity, and thus greater autonomy and self-determination.(8)

In this book, we provide myriad practical examples where the application of the CRPD has relevance, and by explicitly referencing these we encourage those working in health, law and social policy to understand and fulfil their responsibilities under the CRPD. This is particularly important for, but not limited to, older people with decision-making disabilities. In bringing together perspectives of law and medicine, this book addresses the call for law and health to bring their mutual insights “into the process of norm development and implementation in relation to the human rights of older persons” in an Australian context which is otherwise described by Byrnes as having “rights anaemia” (9). This has led to a call for a specific convention on the rights of older persons in order to raise awareness and accountability regarding the human rights of older people not only amongst governments, but also amongst lay and professional communities.(10) Longstanding ageism (11)(12) and related human rights violations brought to the fore during the COVID pandemic have prompted a call for advocacy by health care professionals to support the human rights of older persons in their everyday clinical roles.(13)(14) In the context of dementia and mental health conditions, specific areas where human rights are particularly salient include lack of consent for psychotropics(15) expression of sexuality(16); inclusive rather than segregated living(17)(18) death and dying(19)(20), suicide(21) oral health(22) justice(23) and older women.(24)

1.3 What is capacity?

Capacity is the ability to make decisions.(25) The term “capacity” has been used synonymously with competence, although some have sought to distinguish competence as being a legal determination, and capacity a health care professional’s determination.(26),(27),(28),(29),(30) Although the accepted legal standards that define capacity and competency vary, operational definitions of the cognitive elements of capacity usually comprise combinations of the following abilities:
  1. To understand the specific situation, relevant facts or basic information about choices
  2. To evaluate reasonable implications or consequences of making choices
  3. To use reasoned processes to weigh the risks and benefits of the choices
  4. To communicate relatively consistent or stable choices.(31), (32),(33),(34)
There is general consensus that capacity is not a unitary concept but rather refers to specific decisions, tasks or domains.(35),(36),(37),(38),(39),(40) Capacity is therefore task or domain-specific, that is, peculiar to the particular type of decision made. Thus, the capacity task is different for entering into a contract; executing a power of attorney, will or deed; appointing an enduring guardian or an attorney under a power of attorney; or consenting to treatment, divorce or marriage. This has been acknowledged in Australia in Gibbons v Wright when a unanimous High Court said:

[T]he mental capacity required by law in respect of any instrument is relative to the particular transaction which is being effected by means of the instrument, and may be described as the capacity to understand the nature of the transaction when it is explained.(41)

Thus, capacity cannot be extrapolated from one capacity task to another. For example, a person’s capacity to make a will cannot be inferred from their capacity to consent to medical treatment. The concept of global capacity, whereby a person is deemed capable or incapable of making all decisions, has been rejected. Consequently, it is inappropriate to state that a person “lacks capacity”, without further reference to the type of capacity.

Capacity is also issue-specific. As suggested in Gibbons v Wright:

One cannot consider soundness of mind in the air, so to speak, but only in relation to the facts and the subject-matter of the particular case.(42)

This suggests that even within a particular type of decision or task category, capacity may vary. Within a single domain or capacity task there is a spectrum of decisions from simple (e.g. having a blood test) to complex (e.g. carotid artery surgery) and accordingly, people may be capable of making simple decisions but not more complex ones. Further, the greater the complexity and conflict within the decision-maker’s environment (the ‘situation-specific’ nature of capacity),(43),(44)the higher the level of cognitive function or emotional stability/mental health necessary in order to be considered capable when making decisions which involve others. This might include, for example, the weighing up of potential beneficiaries in a will or potential appointees as attorneys under (enduring) powers of attorney or as enduring guardians or recipients of a gift, or whether to propose or accept a proposal to marry.

Accordingly, a person with dementia may have the capacity to make a simple will, for example leaving a single asset such as their house to their spouse, but may not have capacity to make a complex will, for example dividing a complex estate involving a share and real estate portfolio amongst multiple, conflicting beneficiaries with fractional bequests.(45)

Also, in any discussion about incapacity, it must be appreciated that there is, in the common law, a presumption of capacity in relation to anyone 18 years or more.(46) That presumption is sometimes confirmed in legislation(47),(48) and it is also reinforced by obligations under the CRPD.

The presumption may be rebutted by evidence to the contrary. Consequently, incapacity is not “status” or diagnosis bound.(49) Incapacity cannot be assumed because of a diagnosis of mental disorder, such as dementia or schizophrenia. Rather, the question of whether or not a person has capacity is assessed in the context of the person’s cognitive abilities in relation to the decision. A person with mild dementia may therefore have enough insight, memory and reasoning to know they need help and accept it in the way of community services but not have enough reasoning to decide on the pros and cons of a carotid endarterectomy to relieve plaque formation in the carotid artery. A useful formula in this context might be:

Capacity = brain reserve/decision

Put another way, this means that the bigger the decision, the more brain reserve (preserved cognitive or intellectual ability) one needs to have capacity.

Freedom is maximized when a person is allowed to make the decisions they are capable of making.(50)

1.4 Supported Decision-Making

Supported decision-making is an obligation that countries that have ratified the Convention have under Article 12 of CRPD. It is a collaborative process(51) of decision making between a person with impaired capacity and a supporter or supporters. The focus is on the how as well as on the why of decision making, involving knowledge building and shared learning that facilitates the choices and decisions of the person with impaired capacity.(52)

This definition of supported decision-making hinges on a starting point of impaired capacity, which needs to be reconciled with a presumption of capacity. We propose a model that reconciles the presumption of capacity, with capacity assessment (including an assessment of the person’s strengths and weaknesses in regards to decision-making) and supported decision-making, as outlined in Figure 1.

Figure 1.png

This model starts with the presumption of capacity for all, including people with disabilities. If a decision needs to be made, or a choice or preference sought, then discussion should begin with ensuring that the person is equipped with adequate information to make the decision. This crucial 'Education Step' - so penned by Darzins et al in their 'Six Step Capacity Assessment Process' - ensures that people are given every chance to understand their problems, choices and the reasonably foreseeable consequences of these choices.(53) This is crucial to equitable participation in decision-making, which should not be a guessing game for the person involved.

An applied clinical example of such is in end of life decision-making. In a qualitative study of community living staff working with residents with intellectual disability, Wiese et al emphasised the fundamental right of people with disability to know about dying and death, which can only occur in residential care settings if staff initiate discussions with residents. This study showed that there was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death.(54) It was acknowledged that sophisticated communication skills are required to ensure that people with intellectual disability can meaningfully engage with end-of-life issues as opportunities arise. Such opportunities included: when family members die, incidental opportunities, when clients live with someone who is dying and when a client is dying,(55) although to leave such discussions until the latter stage might preclude many from actively participating in decision-making. These principles of the right to early information must be extended to people with and without disabilities alike.

Parallel to the entire process of information sharing and exchange is the need to ensure that there are no adverse effects of, or distress arising from, decision-making. Put simply, decision-making should not be “shoved down people’s throats”. Again, when it comes to discussing end of life with people with disability, Wiese et al noted:

More evidence is needed, however, before a compelling case can be made that the balance between beneficence and non-maleficence is firmly in support of intervention. Researchers evaluating interventions should not only monitor benefits, such as increased knowledge, but also measure potential harms, such as anxiety, depression, and fear of death.(56)

The most sensitive and person-centred solution to this dilemma is to treat each person as an individual and to monitor their responses to decision making, particularly looking for any evidence of distress. Clinically, it is usually very obvious when a person doesn’t want to talk about a subject, and our predominantly Western agenda of autonomy should not be the driver of whether a person has to participate in decision-making. People without disability frequently choose to defer decision-making or abdicate their right to have a voice. People with disability similarly choose to,(57) and have an equal right to do so.

If the person wishes to be involved or proceed, the task of eliciting their will and preferences must start obviously with the person themselves; but may involve input from others. The assessment of capacity should proceed with a focus only on the decision at hand, according to the task specific nature of capacity. If there are doubts about capacity, an assessment of strengths and weaknesses will assist with supported decision making. Key to this model is the symbiotic relationship between capacity assessment and supported decision-making. We suggest that supported decision-making that is tailored, individualised and person-centred can occur only if informed by strength and deficit-based capacity assessment. This sort of capacity assessment is not to be confused with traditional, ill-informed, human rights-incompatible capacity assessment that was status or diagnosis-bound (i.e. disability or diagnoses = lack of capacity) and dependent upon the “reasonableness” of the decision, or whether the assessor agreed with the decision.(58)

A systematic "how to" approach for supported decision-making, based on collaborative principles and a positive, relational concept of autonomy, can be captured with the acronym ASK ME:(59)

Step 1. ASSESS the person's strengths and deficits, starting with an assessment of their mental state and cognitive abilities, in particular assessing crucial skills such as executive function and awareness. Important executive functions relevant to decision-making include holding information in working memory, weighing alternatives, projecting and planning with consequences. Additionally, memory and language and communication functions are important, and, if found to be lacking following assessment, can be buttressed.(60) However, without such assessment and identification, they can’t be buttressed. Awareness is a more dimensional and inclusive concept than the alternative construct of insight, which tends to be categorical and exclusive, and thus awareness is a more useful construct for supported decision making. This has been borne out in the work by Clare et al which demonstrated that even people with severe dementia show awareness, although this is influenced by the extent to which the environment provides opportunities for engagement and by the way in which care staff notice awareness and interact with residents.(61) In addition to preserved awareness, other strengths that need to be identified include carer support, including friends, family members and professional carers. Knowing strengths and weaknesses helps to determine exactly how best to approach the next test, to simplify the task and maximize the ability to understand.

Step 2. SIMPLIFY the task. The best way to maximize participation is to limit the capacity task to the specific decision at hand and not to overstate the decision. This might mean obtaining choices and preferences about the part of decision that the person understands. For example, a person with mental illness may merely understand they have a problem or a dysphoric (negative, unpleasant) experience for which they want relief. A person who is not capable of understanding a full advance care directive may be capable of expressing a desire for care, pain relief and comfort (i.e., participating in advance care planning) rather than making a full advance care directive.

Step 3. KNOW the person. It is essential to find out what the person considers important, what their long held values and decisions were, and, if there is a neurodegenerative condition such as dementia, whether they still affirm these values. Information about past allegiances and trust might be evident in documents such as powers of attorney or wills. This is particularly crucial if the person has a neurodegenerative disease and had decisional capacity previously. It is essential to understand what is important and meaningful to the person in their life right now as it pertains to the decision at hand (e.g., in a decision to decide about residential aged care, the person may be more interested in food or family than accommodation specifically). Respect the person's precedent autonomy where possible, but also, where appropriate, respect their right to change their mind when their mind has changed. In the case of dementia, reconciling differences between precedent and current choices may involve updating a person’s self-concept. For example, a person may have previously written an advance care directive consistent with their former values and subsequently, in the face of dementia and their “new self” change their mind.(62)

Step 4. MAXIMIZE the ability to understand. Attend to and remedy all factors which hinder communication. Give time, optimize the environment, simplify and concretise information, and provide it in an accessible format, e.g., visual aids if necessary. Depending on the person’s cognitive deficits, visual aids should encompass both written and visual information, with simple pictorial or linear representations of the choices to be made. Obviously, interpreters are essential for decision making where people’s language skills are limited to their cultural and linguistic background. Finally, approach the individual at a time when they are optimal in their cognition such as first thing in the morning or after a course of treatment such as dialysis or blood transfusion.

Step 5. ENABLE participation in decision-making by using the assessment process outlined above to tailor the degree of support to the complexity of the decision and the seriousness of the consequences of the decision. Assist and facilitate the communication and implementation of the decision.

Any discussion of supported decision-making must acknowledge the risks and complexities of this process. Bigby et al(63) have identified the multiple dilemmas and tensions associated with supporting someone with cognitive disability to make a decision. These include remaining neutral, managing conflicting perspectives amongst differing supporters, balancing rights with risk and best interests, resource constraints, managing power differentials and the risk of undue influence, the latter risk having been noted by others.(64),(65) It has been suggested that in order to address these risks, supporters need to collaborate with other supporters involved in the life of the person with disability and be provided with training;(66) although this may not be enough. There may be an argument for discouraging lay or family supporters and advocating for a more “professional” approach to supported decision-making, not the least because the field of supported decision-making is in its infancy in terms of proper theoretical and scientific development. Conversely, if we look at who is most likely to "know" the person, it is the lay family member, and for people with dementia, this is often the spouse. A small study of dyads (two person groups) of people with dementia and their carers found that dyads naturally and intuitively transitioned from supported decision-making, where the person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum demonstrated carers' active involvement in retaining their relative's engagement by providing cues, reducing options, using retrospective information, and using the best interests principle.(67) This was all done without training.

Using a model of supported decision-making that is based on similar collaborative and relational goals to the ASKME model, Smebye et al emphasised the need to adapt to the realism of interdependency in dementia care. They discuss the value of a triadic (three person group) perspective involving the family carer, the professional and the person with dementia, with a clear responsibility of the health professionals to balance needs and facilitate decision-making through optimal participation of the person with dementia.(68)

Areas needing future empirical development and research include the issue of balancing rights with risks and best interests, identified as challenging and problematic by people providing supported decision making. Lightbody, in the context of decision-making regarding sexuality, discusses the concept of positive risk management or risk enablement, using a four step approach of:
  1. understanding the person’s needs;
  2. understanding the impact of risks;
  3. enabling and managing risk (including risk to human rights and quality of life); and
  4. risk planning.(69)
There is potential for general application of this model to supported decision-making, which makes a paradigm shift by discouraging risk aversion, and replacing it with enabling and managing risk. But this needs very clear guidance. Certainly, asking family member supporters to tolerate risk for the sake of autonomy of the person with impaired capacity is a big ask. Not surprisingly, family members of people with dementia, upon noticing that the person is unable to regulate his or her own activities to avoid risks, employ unilateral practices to manage the individual's autonomy usually involving deceits and ruses to discourage them from engaging in activities perceived as potentially dangerous.(70)

Clearly, challenges for future development in the field of supported decision-making remain both macroscopic/systemic and microscopic/process-based. In essence, we need more work on the “whether to” and the “how to” of supported decision-making. Certainly from a “whether to” perspective, paradigm shifts are still needed in health, where professionals are often not familiar with the concept of supported decision-making, particularly in mental health,(71) and resort overly to substituted decision-making regimes.(72) In the rest of the book we demonstrate the myriad opportunities for supported decision making and some of the emerging legal precedents for such.

1.5 What sort of disorders compromise capacity?

Any disorder causing acute or chronic impairment of cognitive function might potentially compromise capacity. Such disorders include:
  1. Intellectual disability
    1. head injury;
    2. neurodegenerative diseases such as dementia (e.g. Alzheimer’s disease, vascular dementia, dementia with Lewy bodies); or
    3. delirium which is a transient reversible perturbation of cognitive function due to medical illness.
  2. Cognitive impairment, either associated with
  3. Mental illness such as schizophrenia, depression, bipolar disorder, usually in their acute phases.
The capacity of a person with any of these disorders can vary according to the nature, severity and fluctuation of their condition and the person’s medication or treatment. Throughout this book we will address the nature of many of these disorders as they affect different types of capacity.

1.6. How do we test capacity?

Capacity must be tested in relation to the decision at hand and at the specific time the decision has to be made. Sometimes it is assessed contemporaneously when the decision is being made. Sometimes it is assessed retrospectively to check the validity of a past decision.

The question the health professionals must ask themselves is: Does X (or did X) have capacity to make a decision about Y? The answer to this question is determined by the cognitive ability of X to understand and appreciate the context of and the decisions they are making; not the actual outcome of the choice. A bad outcome or “bad decision” does not imply incapacity, nor does a “good decision” imply capacity.

Importantly, the person must be aware of the “what and who” of the decision. The “what” of the decision refers to the person’s understanding of the decision. For example, do they understand what a will is, or what an (enduring) guardian or an (enduring) attorney does? The “who” of the decision refers to the appointee - capacity often involves giving appointments to other people - making them decision-makers or giving them certain powers or bequests. The choice of the appointee must be rationally considered, and preferably, in the case of those with neurodegenerative disease such as dementia, consistent with choices made prior to the onset of the disease (or if inconsistent, the inconsistency must be a manifestation of rational choice and not of influence from others). A person must understand the implications of making changes to previously established patterns of appointments or legal documents.

However, as Debelle J warned in Dalle-Molle by his next friend Public Trustee v Manos, there is a limit on how much weight can be given to the lack of rationality of a decision is assessing whether or not a person had capacity to make the decision. He said:

[O]ne of the neuro-psychologists called to give evidence, pointed out, a person suffering a mental or intellectual impairment may be capable of making a decision but that decision may have no logical or reasonable base. In my view, that last comment sounds a salutary warning that the barrier as to what constitutes a rational decision should not be raised too high.(73)

In order to assess capacity, the health care professional must be equipped with the following:
  1. The legal tests that define capacity in the area in question (e.g. the legal definition of will-making capacity or capacity to appoint a power of attorney);
  2. Information about the person’s health status and cognitive functioning and, if possible, an opportunity for the health care professional to test the person’s cognitive functioning;
  3. The history of family relationships and the “emotional and psychological milieu”(74) of the person - including history of any family conflict; and
  4. The pattern of decision making in relation to the decision or document in question (e.g. pattern of previous wills or appointments of attorneys under powers of attorney)

1.6.1. The general principles of assessment

There are no scientific tests for capacity, but rather an application of clinical assessment of the individual person (and/or the evidence relating to the person’s health and psychological status) applied to the legal tests relevant to the decision at hand. A general outline for an assessment of capacity would include the following:
  1. Introduction:
    1. a. expertise or CV annexure,
    2. b. questions asked/ legal tests used,
    3. c. acknowledgement of having read any expert code,
    4. d. evidence upon which opinion is based,
    5. e. circumstances of assessment if contemporaneous
  2. Personal history and family relationships,
  3. Medical and psychiatric history,
  4. Diagnosis including issue of cognitive impairment and severity,
  5. Specific answers to the relevant legal tests,
  6. Conclusion
  7. References
While this is a general guideline, we will address report writing throughout this book with reference to specific capacity tasks.

1.7 Capacity to give instructions

One of the most fundamental tasks of solicitors is to take instructions from their clients. Nevertheless, clients must have the capacity to give those instructions. Consequently, and not disregarding the presumption of capacity, when a solicitor interviewing a client realises that the client has questionable capacity, the solicitor must then determine whether or not the client can indeed give instructions.

In Masterman-Lister v Brutton & Co, Chadwick LJ described the test to be applied for capacity to give instructions:
[T]he test to be applied, as it seems to me, is whether the party to legal proceedings is capable of understanding, with the assistance of such proper explanation from legal advisers and experts in other disciplines as the case may require, the issues on which his consent or decision is likely to be necessary in the course of those proceedings. If he has capacity to understand that which he needs to understand in order to pursue or defend a claim, I can see no reason why the law – whether substantive or procedural – should require the interposition of a next friend or guardian ad litem …(75)

Similarly, in Dalle-Molle by his next friend Public Trustee v Manos,(76) Debelle J noted the following matters:
  1. the person must have the capacity not only to give sufficient instructions to prosecute or defend the action but also the capacity to give sufficient instructions to compromise the proceedings;(77)
  2. the term “sufficient instructions” in Rule 5 of the Supreme Court Rules (of the South Australian Supreme Court) signifies that the person is able, once an appropriate explanation has been given to them, to understand the essential elements of the action and is able then to decide whether to proceed with the litigation or, if it is a question of agreeing to a compromise (a settlement) of the proceedings, to decide whether or not to compromise (settle the case);(78)
  3. the person’s understanding must be in relation to the facts and the subject-matter of the particular case. Legal proceedings have a spectrum of complexity. They can extend from the most simple issues through a range of complexity to quite involved and complex litigation;(79) and
  4. The person’s level of understanding must be greater than the mental capacity to understand in broad terms what is involved in the decision to prosecute, defend or settle the proceedings, they must be able to understand the nature of the litigation, its purpose, its possible outcomes, and the risks having to pay costs if they are unsuccessful in the case.(80)
In a case regularly referred to in relation to the test for capacity to make an enduring power of attorney, Ranclaud v Cabban, Young J noted in relation to giving instructions:
It must also be realised that being able to understand what a solicitor is and what one is doing when one is retaining a solicitor is not the whole of the matters which must be considered when working out whether a person is capable of retaining a solicitor. A solicitor is not the alter ego of a litigant. Doubtless it is possible for a person who is sui juris and well aware of the commercial risks involved to give a solicitor a retainer which just says “achieve result X by whatever means you think sufficient with no regard as to cost”. Generally speaking, however, a person retains a solicitor to advise one and one reserves to oneself the ultimate power of making decisions after receiving the solicitor’s advice.(81)

These are useful references for health care professionals, asked to give opinion about capacity to give instructions. Some important common themes evident here are that every case is different and that, understanding must be in relation to the facts and the subject-matter of the particular case. Notwithstanding this, the tests for capacity to give instructions described above are complex and require a significant amount of intact cognition, specifically mental flexibility, judgment and memory.(82)

How can a solicitor screen for the presence of this capacity or detect those needing assessment by an expert, or indeed direct appointment of a tutor? The NSW Law Society(83) has described a number of signs or “red flags” for when a client’s capacity is in doubt, based on signs reported by the American Bar Association Commission on Law and Aging and the American Psychological Association. While this does not specifically refer to the capacity to give instructions, which like every task, is distinctly different from other capacity tasks, they are a useful guide. These signs include:
  1. A client demonstrates difficulty with recall or has memory loss
  2. A client has ongoing difficulty with communications
  3. A client demonstrates a lack of mental flexibility
  4. A client has problems with simple calculations which they did not previously have
  5. A client is disoriented
  6. There is a sense that “something about the client has changed”, including deterioration in personal presentation, mood or social withdrawal
  7. A client is in hospital or a residential aged care facility when instructions are taken
  8. A client has changed solicitors several times over a short period, particularly if there has been a change from a solicitor who has advised the client for many years
  9. A client is accompanied by many other friends, family or carers to interviews with the solicitor but is not given the chance to speak for themselves
  10. A client shows a limited ability to interact with the solicitor
  11. A client shows a limited ability to repeat advice to the solicitor and ask key questions about the issues

For those unable to give instructions, a tutor may be appointed. The provisions regarding the appointment and removal of tutors and the manner in which those tutors will represent the person due to “legal incapacity” are set out in the legislation and rules of procedure for the court system each State and Territory. For example, in NSW the Uniform Civil Procedure Rules 2005, Rule 7.18 states that any person under legal incapacity may have a tutor appointed by the court and the court may remove a tutor and appoint another tutor. The term “person under legal incapacity” is defined to mean; “any person who is under a legal incapacity in relation to the conduct of legal proceedings (other than an incapacity arising under s.4 of the Felons (Civil Proceedings) Act 1981 (NSW)) and, in particular, includes:
  1. a child under the age of 18 years, and
  2. an involuntary patient or a forensic patient within the meaning of the Mental Health Act 2007(NSW), and
  3. a person under guardianship within the meaning of the Guardianship Act 1987 (NSW); and
  4. a protected person within the meaning of the NSW Trustee and Guardian Act 2009(NSW ; and
  5. an incommunicate person, being a person who has such a physical or mental disability that he or she is unable to receive communications, or express his or her will, with respect to his or her property or affairs.(84)
The NSW Court of Appeal considered the need to appoint a tutor for litigation in the 2002 case Murphy v Doman. The Court noted:
The cases do not consider the level of mental capacity required to be a “competent” litigant in person but it cannot be less than that required to instruct a solicitor. It should be greater because a litigant in person has to manage court proceedings in an unfamiliar and stressful situation.(85)

1.8 Capacity to give evidence

Not infrequently, people with mental or intellectual/cognitive impairments are asked to give evidence in either criminal or civil justice settings. Indeed, such persons are overrepresented at all levels of the criminal justice system, as both defendants and victims of crime.(86) This is thought to be due to the complex interplay of the specific vulnerabilities faced by this population on the basis of their cognitive, behavioural and functional limitations. In persons with intellectual disability or dementia, for example, these factors can lead to a greater propensity for criminal victimisation.(87) Moreover, such persons are often considered the “vulnerable witness” by virtue of their potential for suggestibility, memory distortion and comprehension deficits.(88) This, together with their increased tendency to acquiesce and their reticence to seek clarification when they do not understand, may impact on their capacity to give evidence and their reliability as a witness.(89) In the case of defendants, mental or cognitive impairments may also play a role in fitness for trial.(90)

The vulnerability of people with mental or intellectual/cognitive impairment is well recognised in Australian legislation. For example, under the Criminal Procedure Act 1986 (NSW) deals specifically with the giving of evidence by vulnerable persons.(91) That Act also defines a "vulnerable person" to mean a child or a cognitively impaired person. It also describes a "cognitive impairment" as including any of the following:
  1. an intellectual disability,
  2. a developmental disorder (including an autistic spectrum disorder),
  3. a neurological disorder,
  4. dementia,
  5. a severe mental illness,
  6. a brain injury.(92)

In light of Australia’s obligations under CRPD to afford people with disability equal rights to recognition as “persons before the law” and the support they require in exercising such rights,(93) together with, for example, the New South Wales Charter of Rights of Victims of Crime(94), the more appropriate question is how can a person with cognitive disability can give evidence, and what support they need, rather than whether they can give evidence. Clearly this depends on the severity of the disability and the complexity of the witness task.

Despite their intellectual and other impairments, empirical research has demonstrated that people with intellectual disability can make reliable and accurate witnesses when they are questioned in an appropriate and non-leading manner.(95) This has led to a raft of supports, including the availability of a support person and modifications to the way in which evidence may be given as well as closed circuit television in some cases, or pre-recorded interviews as evidence in chief.(96) Also of importance is legislation which disallows inappropriate questioning in the courtroom for all witnesses, not only the vulnerable.(97)

The issue of supported decision making and the use of Registered Intermediaries (RIs) with vulnerable witnesses, particularly in reference to children and people with intellectual disability, and also in relation to defendants and fitness for trial are discussed at length elsewhere.(98) In the RI model currently implemented in parts of the United Kingdom, communication difficulties on the basis of cognitive and other impairments are not viewed as insurmountable obstacles; rather, engagement with the RI provides a means to circumvent many of these barriers in the courtroom, thereby enabling the vulnerable to access justice. Importantly, the RI takes an active role during police interviews and in the courtroom, such that they must intervene if improper questions are put to the witness. Many of the principles elucidated, particularly in regards to communication facilitation, can be extrapolated to other types of cognitive impairment, and positive steps have been taken towards the implementation of an RI-like model in a number of Australian jurisdictions, including New South Wales, Victoria and South Australia.

Nonetheless, access to justice for vulnerable persons remains a vexed issue, with many cases not proceeding to trial due to perceived concerns regarding witness reliability, the ability to participate in legal proceedings and the capacity to give evidence.(99) Encouragingly, there has been increasing recognition that the capacity to give evidence, for both witnesses and defendants, is decision specific, issue specific and support dependent.(100)

The capacity to give evidence is defined in the Evidence Acts of the Commonwealth, the States and the Territories. For example, the Evidence Act 1995 (Cth) states:
  1. A person is not competent to give evidence about a fact if, for any reason (including a mental, intellectual or physical disability):
    1. the person does not have the capacity to understand a question about the fact; or
    2. the person does not have the capacity to give an answer that can be understood to a question about the fact;
and that incapacity cannot be overcome.
Note: See sections 30 and 31 for examples of assistance that may be provided to enable witnesses to overcome disabilities.
  1. A person who, because of subsection (1), is not competent to give evidence about a fact may be competent to give evidence about other facts.
  2. A person who is competent to give evidence about a fact is not competent to give sworn evidence about the fact if the person does not have the capacity to understand that, in giving evidence, he or she is under an obligation to give truthful evidence.
  3. A person who is not competent to give sworn evidence about a fact may, subject to subsection (5), be competent to give unsworn evidence about the fact.
  4. A person who, because of subsection (3), is not competent to give sworn evidence is competent to give unsworn evidence if the court has told the person:
    1. that it is important to tell the truth; and
    2. that he or she may be asked questions that he or she does not know, or cannot remember, the answer to, and that he or she should tell the court if this occurs; and
    3. that he or she may be asked questions that suggest certain statements are true or untrue and that he or she should agree with the statements that he or she believes are true and should feel no pressure to agree with statements that he or she believes are untrue.
  5. It is presumed, unless the contrary is proved, that a person is not incompetent because of this section.
  6. Evidence that has been given by a witness does not become inadmissible merely because, before the witness finishes giving evidence, he or she dies or ceases to be competent to give evidence.
  7. For the purpose of determining a question arising under this section, the court may inform itself as it thinks fit, including by obtaining information from a person who has relevant specialised knowledge based on the person's training, study or experience.(101)

A number of important principles related to human rights and capacity assessment discussed elsewhere in this text are illustrated in the Evidence Act 1995 (Cth), and may be helpful to the practitioner assessing capacity to act as witness. First and foremost, there is a presumption of capacity. Merely because a person is a “vulnerable” person, or a person with a cognitive disability does not exclude them from giving evidence or acting as a witness. Secondly, the requirements for capacity to act as a witness are:-
a) Ability to understand a question about the fact;
b) Ability to give an give an answer that can be understood to a question about the fact; and
c) Ability to understand that they are under an obligation to give truthful evidence.

Thirdly, the Act addresses the task specific nature of capacity, namely that a person may be not competent to give evidence about one fact, but still competent to give evidence about other facts. Finally, an opportunity for supported decision-making exists whereby if a person is not competent to give sworn evidence, they can give unsworn evidence and in doing so are encouraged to ask questions and to feel no pressure to acquiesce to statements.

Clinically, an assessment of the capacity to give evidence includes consideration of factors related to the witness, for instance the degree of cognitive impairment and any conditions that might exacerbate cognitive impairment, for instance, sensory impairments or anxiety. Cognitive impairments in one area should not be extrapolated to other areas of cognition, thus while a person might have impairments of semantic memory (memory of general world knowledge and facts), they could have less impairment of episodic memory (memory of events or experiences in our own lives), rendering them capable of giving evidence about a distressing personal events, such as an instance of abuse.(102)

The nature of the witness requires consideration. For example, a witness of fact such as the observer of a motor accident might undergo take the stand for a shorter period, not undergo cross examination and thus be less cognitively taxed when giving evidence than the victim of an alleged assault.

Finally, the capacity of a person to be a witness should also consider the ability of the court to assist the witness. For instance, support persons might be permitted to be beside the person as they give their evidence whether sworn or unsworn, and the provision of hearing loops or assisted listening devices and aides memoires might mitigate impairments to a degree.

1.9 What matters relating to capacity and the law that are dealt with in the rest of the book?

As has already been indicated, the law in Australia requires that anyone who enters into a contract or other transaction, or executes a document like a deed conveying their land to someone else, or a will or an enduring power of attorney, should have the mental capacity to understand the nature and effect of that transaction or document. However, the starting point is that everyone who has reached the age of majority, namely 18 years, is presumed to have the capacity to enter into contracts or other transactions. If they, or someone acting on their behalf, assert they lacked capacity when they entered the transaction or executed the document, they must prove their lack of capacity. Similarly, if another party asserts that the person lacked capacity, they must prove that the person lacked capacity.(103)

While these matters are clear, there are many factors that are relevant to the question of whether a person had the capacity to enter into a transaction or execute a document. When it comes to entering or leaving interpersonal relationships, considerations including indicators and patterns of influence, the vulnerability of cognitively impaired persons to influence and the assessment of the capacity to form and cease interpersonal relationships apply. They matters are dealt with in Chapter 2.

When it comes to contracts and gifts made during lifetime, a number of other considerations apply including the obligation to pay for necessaries. Undue influence, unconscionability and the defence non est factum can be relevant. These matters are dealt with in Chapter 3.

Chapter 4 deals in detail with the capacity to make a will and the pressures that may be applied to the will-maker. It also deals with the considerations relevant to having a will set aside because the will-maker did not have will-making capacity.

Those three chapters deal with the circumstances which may lead to a transaction an incapable person entered or a document they signed being set aside.

The next group of chapters briefly trace the history of and then the current law in Australia relating to the appointment by tribunals of guardians for incapable people who need a guardian as their substitute decision-makers for personal matters or administrators (financial managers) to manage their property and financial affairs and to make substitute decisions for them in relation to those matters.

Chapter 5 traces the development in England of the common law relating to the guardianship and the administration of the estates of people with decision-making disabilities, the introduction of that law into Australia and its further development here as a result of legislation and court decisions. It also considers the transition of the system from a Supreme Court based system to a tribunal based system.

Chapter 6 deals with the bodies in each State and Territory that have jurisdiction to make guardianship orders and the matters they have to consider before making such orders. Chapter 7 deals with the functions, powers, duties and responsibilities of those appointed as guardians. Chapter 8 deals with the powers of the tribunals and courts empowered to appoint administrators (financial managers) and the roles and functions of the administrators so appointed.

The next two chapters deal with the legislation recently enacted to allow people to appoint their own substitute decision-makers to act for them if they lose capacity. This legislation allows the appointment of enduring guardians or their equivalents to make substitute personal decisions and attorneys under enduring powers of attorney to make substitute financial decisions and to manage financial affairs. Versions of this legislation have been enacted in all of the States and Territories in Australia. Chapter 9 deals with enduring guardianship and its equivalents while Chapter 10 deals with enduring powers of attorney.

More and more people are making advance directives in which they set out how they wish to be treated when they reach certain levels of functioning but cannot make decisions for themselves at that time. Because these tend to deal mainly with questions of medical treatment, they are dealt with in the final section of the book.

That section of the book deals with substitute consent to medical treatment and related matters. Chapter 11 deals with the development of the law relating to people unable to give a valid consent to their own treatment. Chapter 12 sets out the law relating to substitute consent to medical treatment in Australia. Chapter 13 deals with advance directives while Chapter 14 deals with decision-making at the end of life. Chapter 15 deals the sterilization of people unable to give a valid consent to their own treatment. Chapter 16 deals with the law relating to those unable to give a valid consent to their own treatment being involved in clinical trials and gaining access to medical treatments that are still in their experimental later stages. Chapter 17 deals with the capacity and the right of a patient within the mental health treatment system to refuse psychiatric treatment. Chapter 18 deals with capacity in the context of doctors practising their profession.

ACKNOWLEDGMENTS

The authors wish to thank Dr Sharon Reutens and Dr llana Hepner for their contributions to the content of Section 1.8, Capacity to Give Evidence.

Mitchell B, Byrnes A, Bergman A, Peisah C, The human right to justice for older persons with mental health conditions The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof

Notes

1 : Young, G., Douglas, A. and Davison, L. (2018) What do doctors know about assessing decision-making capacity? New Zealand Medical Journal, 131, 58 -71; Preston-Shoot M, McKimm J. (2013) Exploring UK medical and social work students' legal literacy: comparisons, contrasts and implications. Health Soc Care Community 21, 271-82

2 : Peisah C. Yaffa Lerman Y. Herrmann N., Rezmovitz J Shulman K Piloting the Global Capacity Education e-Tool: can capacity be taught to health care professionals across different international jurisdictions International Psychogeriatrics (In Press) Jul 16:1-4. doi: 10.1017/S1041610219000723. [Epub ahead of print]; for the tool see https://capacityaustralia.org.au/globalcapacity/

3 : ALRC Discussion Paper 81, 2014

4 : Ibid.,

5 : United Nations Convention on the Rights of Persons with Disabilities (UNCORPD). (2012). Available at: http://www.un.org/disabilities/convention/conventionfull.shtml

6 : Flynn E., Arstein-Kerslake A “Equal Recognition Before the Law: Exploring a Support Model of Legal Capacity” 10 March 2012, 'Equality: Are We There Yet?’ The Kent Critical Law Society Conference at the University of Kent, Canterbury, p1.

7 : Quinn G. Personhood and legal capacity Perspectives on the paradigm shift of article 12 CRPD HPOD Conference Harvard Law School Feb 2010

8 : Browning, M. Bigby C. Douglas J. (2014): Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice, Research and Practice in Intellectual and Developmental Disabilities, DOI: 10.1080/23297018.2014.902726

9 : Byrnes A. (2019) Human rights unbound: an unrepentant call for a more complete application of human rights in relation to older persons -- and beyond.’ Australian Association of Gerontology Annual Conference. Sydney, 6-8 November 2019

10 : Doron I. & Apter I (2010). The debate around the need for an international convention on the rights of older persons. The Gerontologist. 50 (5):586-593.

11 : Ayalon L, Peisah C, de Mendonça Lima C, Verbeek H, Rabheru K, Ageism and the state of older people with mental conditions during the pandemic and beyond: Manifestations, etiology, consequences, and future directions The American Journal of Geriatric Psychiatry In Press

12 : Chang, E. S., Kannoth, S., Levy, S., Wang, S. Y., Lee, J. E., & Levy, B. R. (2020). Global reach of ageism on older persons’ health: A systematic review. PLOS ONE, 15(1), e0220857.CRPD.

13 : Peisah C, Byrnes, A, Doron, I, Dark, M, Quinn G (2020) Advocacy for the human rights of older people in the COVID pandemic and beyond: a call to mental health professionals. International Psychogeriatrics. 32:1199-1204.

14 : Peisah C, de Mendonça Lima, C, Verbeek, H, Rabheru K. (2020) IPA and WPA-SOAP Joint Statement on the Rights of Older Persons with Mental Health Conditions and Psychosocial disabilities International Psychogeriatrics (In Press)

15 : Peisah C, Jessop T. (2021) Australia’s problem with obtaining consent for psychotropic use in older people Internal Medicine Journal. Intern Med J.;51(4):604-607

16 : Peisah C, Ayalon, L, Verbeek H, Benbow SM, Wiskerke E, Rabheru K, Sorinmade O Sexuality and the human rights of persons with dementia The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof Published online: May 30, 2021

17 : Verbeek H, de Mendonça Lima CA, Rabheru K, Peisah C, Ayalon l. Human rights to inclusive living and care for older people with mental health conditions The American Journal of Geriatric Psychiatry In Press published online: June 8 2021.

18 : Steele, L., Swaffer, K., Phillipson, L., and Fleming, R. (2019) Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes. Laws, 3, 18, doi:10.3390/laws8030018

19 : Peisah C, Sampson EL, Rabheru K, Wand A, Lapid M. The human rights of older people with mental health conditions and psychosocial disability to a good death and dying well The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof Published online: May 30, 2021

20 : Peisah C, Jessop T In search of the holy grail of quality dying with dementia. Int Psychogeriatr. 2021 Jun 9:1-3. doi: 10.1017/S1041610220003658. Online ahead of print

21 : Wand, A, Verbeek, H, Hanon, C, de Mendonça Lima, CA, Rabheru, K, Peisah C. Is suicide the end point of ageism and human rights violations?The American Journal of Geriatric Psychiatry In Press, Published online: June 10, 2021

22 : Gibney J, Naganathan V., Lim MAWT nAGANOral health is essential to the well-being of older people The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof Published online: DOI: https://doi.org/10.1016/j.jagp.2021.06.002

23 : Mitchell B, Byrnes A, Bergman A, Peisah C, The human right to justice for older persons with mental health conditions The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof

24 : Hamilton,M, Peisah, C, Rabheru, K, Ayalon, L, ilde Verbeek, H, de Mendonça Lima CA, Understanding barriers to the realization of human rights among older women with mental health conditions The American Journal of Geriatric Psychiatry In Press Journal Pre-Proof Published online: June 09, 2021

25 : Katona C. Chiu, E, Adelman, S.Baloyannis, S., Camus, V., Firmino, H., Gove, D., Ghebrehiwet, T., Graham, N., Icelli, I., Ihl, R. Kalasic, A., Leszek, L., Kim, S., de M. Lima, C. Peisah, C., Tataru, N., Warner J. (2009). World Psychiatric Association Section of Old Age Psychiatry Consensus Conference on Ethics and Capacity in old people with mental disorders. <i>International Journal Geriatric Psychiatry, </i>24(12): 1319-24.

26 : Kolva E.A. and Rosenfeld, B. (2012) In: Demakis G.J (ed) Civil Capacities in Clinical Neuropsychology, Oxford University Press, New York, p 17–36.

27 : Kim SYH Karlawish JHT, Caine E.D. (2002) Current state of research on decision-making competence of cognitively impaired elderly persons American Journal Geriatric Psychiatry 10:151-165.

28 : Marson DC, Schmitt FA, Ingram KK, Harrell LE. Determining the competency of Alzheimer patients to consent to treatment and research.Alzheimer Dis Assoc Disord. 1994;8 Suppl 4:5-18.

29 : Shulman KI, Cohen CA, Hull I. Psychiatric issues in retrospective challenges of testamentary capacity.Int J Geriatr Psychiatry. 2005 Jan;20(1):63-9

30 : Grisso T, Appelbaum PS. Comparison of standards for assessing patients' capacities to make treatment decisions.Am J Psychiatry. 1995 Jul;152(7):1033-7.

31 : Marson DC, Schmitt FA, Ingram KK, Harrell LE. Determining the competency of Alzheimer patients to consent to treatment and research.Alzheimer Dis Assoc Disord. 1994;8 Suppl 4:5-18

32 : Marson D.C (2001) Loss of competency in Alzheimer’s disease: conceptual and psychometric approaches International Journal of Law and Psychiatry 24: 267-283.

33 : Grisso T, Appelbaum PS, Hill-Fotouhi C. The MacCAT -T: a clinical tool to assess patients' capacities to make treatment decisions.Psychiatr Serv. 1997 Nov;48(11):1415-9

34 : Grisso T, Appelbaum PS.Comparison of standards for assessing patients' capacities to make treatment decisions.Am J Psychiatry. 1995 Jul;152(7):1033-7

35 : Shulman KI, Cohen CA, Hull I.Psychiatric issues in retrospective challenges of testamentary capacity.Int J Geriatr Psychiatry. 2005 Jan;20(1):63-9.

36 : Kim SYH Karlawish JHT, Caine E.D. (2002) Current state of research on decision-making competence of cognitively impaired elderly persons American Journal Geriatric Psychiatry 10:151-165.

37 : Verma S. Silberfeld M. 1997 Approaches to capacity and competency: the Canadian view Int J Law Psychiatry. 1997 Winter;20(1):35-46

38 : Sullivan, K., Neuropsychological assessment of mental capacity.Neuropsychol Rev. 2004 Sep;14(3):131-42

39 : Woods B Pratt R Awareness in dementia: ethical and legal issues in relation to people with dementia Aging Ment Health. 2005; 9(5):423-9.

40 : Darzins, P, Molloy DW, Strang D. (Ed) Who can decide? The six step capacity assessment process (2000) Memory Australia Press, Adelaide, p6

41 : [1954] HCA 17; (1954) 91 CLR 423, 438, [1954] HCA 17 [7].

42 : Ibid. 438, quoting Hodson LJ from In the Estate of Park Decd Park v Park [1954] P 112, 136. See also Dalle-Molle by his next friend Public Trustee v Manos [2004] SASC 102.

43 : Shulman K.I., Peisah C., Jacoby R, Heinik J, Finkel S. (2009). Contemporaneous assessment of testamentary capacity A consensus report from the IPA Task Force on testamentary capacity and undue influence. International Psychogeriatrics, 21(3),433-9.

44 : Shulman, K.I., Cohen, C.A., Kirsh, F.C., Hull, I.M., Champine, P.R. (2007) Assessment of testamentary capacity and vulnerability to undue influence. American Journal of Psychiatry 164:722-727.

45 : Shulman K.I., Peisah C., Jacoby R, Heinik J, Finkel S. (2009). Contemporaneous assessment of testamentary capacity A consensus report from the IPA Task Force on testamentary capacity and undue influence. International Psychogeriatrics, 21(3),433-9.

46 : For some recent judicial confirmations of this see, Dalle-Molle by his next friend Public Trustee v Manos [2004] SASC 102, 88 SASR 193; SA v Manonai [2008] WASCA 168; L v Human Rights and Equal Opportunity Commission [2006] FCA 114 and Lawrance v Federal Magistrate Driver [2005] FCA 394.

47 : For example see, Guardianship and Administration Act 2000 (Qld) Sch 1 cl 1

48 : Human Rights Act 2004.

49 : For some recent judicial confirmations of this see, Dalle-Molle by his next friend Public Trustee v Manos [2004] SASC 102, 88 SASR 193; SA v Manonai [2008] WASCA 168; L v Human Rights and Equal Opportuinty Commission [2006] FCA 114 and Lawrance v Federal Magistrate Driver [2005] FCA 394

50 : Darzins, P, Molloy DW, Strang D. (Ed) Who can decide? The six step capacity assessment process (2000) Memory Australia Press, Adelaide, p6

51 : Browning, M. Bigby C. Douglas J. (2014): Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice, Research and Practice in Intellectual and Developmental Disabilities, DOI: 10.1080/23297018.2014.902726

52 : Peisah C., Sorinmadeayo D. Mitchell L., Hertogh C., (2013) Decisional capacity: towards an inclusionary approach The International Psychogeriatric Association Task Force on Capacity International Psychogeriatrics 25 (10): 1571-9.

53 : Darzins P., Molloy D. W. and Strang D. (eds.) (2000). Who Can Decide? The Six Step Capacity Assessment Process. Adelaide, Australia: Memory Australia.

54 : Wiese M, Stancliffe RJ, Dew A, Balandin S, Howarth G. What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death J Intellect Disabil Res. 2014 Jul;58(7):679-90.

55 : Wiese M, Dew A, Stancliffe RJ, Howarth G, Balandin S 'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying J Intellect Disabil Res. 2013;57(10):980-92.

56 : Michele Wiese, Roger J. Stancliffe, Sue Read, Gail Jeltes & Josephine M. Clayton (2015): Learning about dying, death, and end-of-life planning: Current issues informing future actions, Journal of Intellectual and Developmental Disability, DOI: 10.3109/13668250.2014.998183

57 : Bamford C, Bruce E: Defining the outcomes of community care: the perspectives of older people with dementia and their carers. Ageing and Society 2000, 20:543–570.

58 : Quinn G. Personhood and legal capacity Perspectives on the paradigm shift of article 12 CRPD HPOD Conference Harvard Law School Feb 2010.

59 : Peisah C, Sorinmade OA, Mitchell L, Hertogh CM. Decisional capacity: toward an inclusionary approach.Int Psychogeriatr. 2013;25(10):1571-9.

60 : Zuscak SJ, Peisah C, Ferguson A. A collaborative approach to supporting communication in the assessment of decision-making capacity.Disabil Rehabil. 2015 Oct 12:1-8 epub ahead of print

61 : Clare L, Whitaker R, Woods RT, Quinn C, Jelley H, Hoare Z, Woods J, Downs M, Wilson BA AwareCare: a pilot randomized controlled trial of an awareness-based staff training intervention to improve quality of life for residents with severe dementia in long-term care settings. Int Psychogeriatr. 2013 Jan;25(1):128-39

62 : Hertogh C. (2015) Capacity and Awareness: How to Include People with Decision Making Disability Second International Conference on Capacity, IPA Congress, Berlin.

63 : Bigby, C., Whiteside, M., & Douglas, M. (2015). Supporting People with Cognitive Disabilities in Decision Making – Processes and Dilemmas. Melbourne: Living with Disability Research Centre, La Trobe University

64 : A critical assessment of supported decision-making for persons aging with intellectual disabilities. Kohn NA, Blumenthal JA. Disabil Health J. 2014 7(1 Suppl):S40-3.

65 : Peisah C, Sorinmade OA, Mitchell L, Hertogh CM. Decisional capacity: toward an inclusionary approach.Int Psychogeriatr. 2013;25(10):1571-9.

66 : Bigby, C., Whiteside, M., & Douglas, M. (2015). Supporting People with Cognitive Disabilities in Decision Making – Processes and Dilemmas. Melbourne: Living with Disability Research Centre, La Trobe University.

67 : Samsi K Manthorpe, J. 2013 Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. Int Psychogeriatr . 25(6):949-61

68 : Smebye,KL., Kirkevold,M Engedal K., How do persons with dementia participate in decision-making related to health and daily care? A multi-case study BMC Health Serv Res. 2012; 12: 241

69 : Lightbody, E. (2014). Sexuality and Dementia: For Better or Worse. Old Age Psychiatrist,58, Sex Dementia 1- 11.

70 : Berry Y., Apesoa-Varano EC, Gomez Y (2015) How family members manage risk around functional decline: The autonomy management process in households facing dementia Social Science & Medicine 130: 1-7-114.

71 : Piers Gooding (2014): Psychiatrists’ Perceptions of Supported Decision-Making: A Victorian Empirical Study, Psychiatry, Psychology and Law, DOI: 10.1080/13218719.2014.983217.

72 : Blanck P., Martinis J.G. (2015) ‘‘The Right to Make Choices’’: The National Resource Center for Supported Decision-Making. Inclusion 3: 24-33.

73 : [2004] SASC 102 [28]. See also Lane v Candura 376 NE 2d 1232 (1978) and Goldblatt, AD “Commentary: No more jurisdiction over Jehovah” (1999) 27 J.L. Med. & Ethics 190, 191 in which it was said: A competent patient's refusal to consent even to life-saving medical treatment should be assessed only with regard to its internal consistency. If a legally competent individual's refusal accurately describes its consequences and the consequences of accepting the treatment, the refusal is itself competent. To conclude that a refusal is incompetent and can be overruled if it does not seem "rational" to the attending physician …is to return to paternalism, a principle discarded since the earliest of the termination of life-sustaining treatment cases. Without consent, medical touchings (except emergency care given to save the life of an incompetent patient) are batteries, both crimes against the state and a tort against the battered person.

74 : Shulman, K., Cohen, CA., Kirsh F.C., Hull, I.M., Champine, P.R. Assessment of testamentary capacity and vulnerability to undue influence American Journal of Psychiatry 2007; 164(5): p724

75 : [2002] EWCA 1889 Civ [75]; [2002] EWCA Civ 1889; [2003] 3 All ER 162 at [75].

76 : [2004] SASC 102.

77 : Ibid. [21].

78 : Ibid. [22].

79 : Ibid. [23].

80 : Ibid. [26].

81 : (1988) NSW ConvR 55-385, 57-548. For more recent NSW cases on capacity to give instructions see, A v N [2012] NSWSC 354 and Smilevska v Smilevska [2015] NSWSC 1794.

82 : Masterman B. Legal Capacity and case Guardians- Part 1. Legal Capacity http://www.academia.edu/7850956/Legal_Capacity_and_Case_Guardians_-_Part_1_Legal_Capacity

83 : http://www.lawsociety.com.au/cs/groups/public/documents/internetcontent/023880.pdf

84 : Civil Procedure Act 2005(NSW) s 3.

85 : Murphy v Doman [2003] NSWCA 249 [35]; [2003] NSWCA 249; (2003) 58 NSWLR 51.

86 : Baldry, E., Dowse, L., & Clarence, M. (2011). People with mental and cognitive disabilities: pathways into prison. Background Paper for the National Legal Aid Conference. Darwin; Wilson, C., & Brewer, N. (1992). The incidence of criminal victimisation of individuals with an intellectual disability. Australian Psychologist, 27, 714-726.

87 : Hayes, S. C. (1992). Sexual Violence Against Intellectually Disabled Victims. In P. W. Easteal (Ed.), Without consent: confronting adult sexual violence (pp. 201-208). Canberra: Australian Institute of Criminology. Retrieved May 8, 2015, from http://www.aic.gov.au/media_library/publications/proceedings/20/hayes.pdf; Jones, R, & Elliott, T. (2005). Capacity to give evidence in court: issues that may arise when a client with dementia is a victim of crime. Psychiatric Bulletin, 29, 324-326

88 : Gudjonsson, G. H., & Clare, I. C. (1995). The Relationship Between Confabulation and Intellectual Ability, Memory, Interrogative Suggestibility and Acquiescence. Personality and Individual Differences, 19(3), 333-338.

89 : Cossins, A. (2009). Cross-Examination In Child Sexual Assault Trials: Evidentiary Safegard Or An Opportunity To Confuse? Melbourne University Law Review, 33, 68-104; Jones, R, & Elliott, T. (2005). Capacity to give evidence in court: issues that may arise when a client with dementia is a victim of crime. Psychiatric Bulletin, 29, 324-326

90 : White, A. J., Batchelor, J., Pulman, S. & Howard, D. (2012) The Role of Cognitive Assessment in Determining Fitness to Stand Trial. International Journal of Forensic Mental Health, 11(2), 102-109.

91 : Criminal Procedure Act 1986 (NSW) Pt 6.

92 : Ibid. s 306M.

93 : United Nations Convention on the Rights of Persons with Disabilities (UNCORPD) (2012). http://www.un.org/disabilities/convention/conventionfull.shtml; Accessed February 2015.

94 : Victims Rights and Support Act 2013 (NSW) ss 6 and 7.

95 : Kebbell, M. R., Hatton, C., & Johnson, S. D. (2004). Witnesses with intellectual disabilities in court: What questions are asked and what influence do they have? Legal and Criminological Psychology, 9, 23-35; Temes, M., & Yuille, J. C. (2008). Eyewitness Memory and Eyewitness Identification Performance in Adults with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 21(21), 519–531.

96 : See for example the Criminal Procedure Act 1986 (NSW) ss 306S, 306ZA and 306ZK . See also services offered by various support organisations across most Australian jurisdictions (e.g. Witness Assistance Service (WAS), http://www.dpp.sa.gov.au/02/was.php?s=02; Victim Support Service, http://www.victimsofcrime.wa.gov.au/V/victim_support_services.aspx?uid=3011-5800-2263-2039).

97 : See for example the Uniform Evidence Act 1995 (NSW) s 41 and Uniform Evidence Act 1995 (Cth) s 41.

98 : Hepner I.J., Woodward M.N., Stewart J. (2014) Giving the Vulnerable a Voice in the Criminal Justice System: The use of intermediaries with individuals with intellectual disability. Psychiatry, Psychology and Law DOI: 10.1080/13218719.2014.960032; Stewart, S., Woodward, M., & Hepner I. (2015). Fitness to stand trial, human rights and possibilities from England and Wales. Journal of Law and Medicine Jun;22(4):886-99.; Woodward M.N., Hepner I.J., Stewart J. (2014) Out of the mouth of babes: Enabling children to give evidence in the justice system. Alternative Law Journal, 39(1), 27-30

99 : Australian Human Rights Commission. Access to justice in the criminal justice system for people with disability. http://www.humanrights.gov.au/sites/default/files/document/publication/Access%20to%20Justice%20in%20the%20Criminal%20Justice%20System%20for%20People%20With%20Disability%20-%20Issues%20Paper%20April%202013.pdf Retrieved 25 May 2015

100 : Australian Law Reform Commission (LRC), 2014. Equality, Capacity and Disability in Commonwealth Laws. Discussion Paper 81. www.alrc.gov.au/sites/default/files/pdfs/publications/whole_dp81.pdf Accessed online 25 May 2015; Victorian LRC Report. 2014. Review of the Crimes (Mental Impairment and Unfitness to be Tried) Act 1997

101 : Evidence Act 1995 (Cth) s 13. See also Evidence Act 1995 (NSW) s 13;

102 : Sabat S. Capacity for decision making in Alzheimer’s disease: Selfhood, positioning and semiotic people. Australian and New Zealand Journal of Psychiatry, 2005, 39:1030-1035.

103 : Dalle-Molle by his next friend Public Trustee v Manos [2004] SASC 102, 88 SASR 193 and Masterman-Lister v Brutton & Co [2002] EWCA Civ 1889.

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