Capacity Assessment

Abstract

Capacity is the ability to make decisions. Autonomy in decision-making and being safeguarded against abuse and undue influence are fundamental human rights. This chapter will demonstrate how “good” capacity assessment can support these human rights. The assessment of capacity is a complex and highly specialized task, governed by principles of the presumption of capacity, that capacity is not diagnosis bound, and the need for individualized, task-, and situation-specific assessments. The clinician engaged to undertake a capacity assessment has a responsibility to act as gatekeeper, and sometimes advocate, for the actualization of human rights. Capacity assessment presents opportunities to identify strengths and weaknesses to inform and enable supported decision-making. It also provides opportunities and obligations to identify abuse. When people with disability such as mental illness are empowered to make the decisions they are capable of making, while protected from making the decisions they are incapable of making, human rights are supported. Such principles are universal, regardless of the jurisdictional variations in the laws that govern capacity and competency determinations internationally.

Introduction

Capacity is the ability to make decisions. The term “capacity” has been used interchangeably with the word “competence,” although some consider competence a legal determination and capacity a health-care professional’s determination (Kolva and Rosenfeld 2012). In this chapter, the two concepts will be regarded synonymously. What is more important is the distinction between decisional capacity and legal capacity, the former an ability, the latter a human right (Quinn 2010). Flynn and Arstein-Kerslake (2012, p1) 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).

This chapter will demonstrate how “good” capacity assessment can support legal capacity and other related human rights. Such principles are universal, regardless of the jurisdictional variations in the laws that govern capacity and competency determinations internationally. These variations arise out of the legal systems that govern different countries. Common law legal systems are governed by case law, which is law developed by judicial rulings or precedents, i.e., developed by judges through decisions of courts or tribunals. Common law countries are also governed by statutory law which is law determined by legislation. Common law (which originated in England) is in practice in Commonwealth countries such as Canada, Australia, New Zealand, South Africa, India, Fiji, as well as the USA on a state level (except Louisiana).

In contrast to common law, civil law (also known as continental European law ) is based on codified statutes and ordinances. Countries governed by civil law include China, Japan, most African nations, all South American nations (except Guyana), and most of Europe. Some jurisdictions such as South Africa and Hong Kong use a combination of civil and common law. It is beyond the scope of this chapter to address both civil and common law so where legal principles are referred to in this chapter, they will reference the common law. For a comparative review of capacity and substitute decision-making across Asia and Australia, see Tsoh et al. (2015).

Capacity and Human Rights

The United Nations Convention on the Rights of Person with Disabilities (CRPD) , the first binding international human rights instrument explicitly to address disability (Australian Law Reform Commission (ALRC) 2014), opened for signature in March 2007 and entered into force in May 2008. As of February 2016, it had 160 signatories and 162 parties to it (United Nations Treaty Collection 2016). 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. For example, in the Australian Capital Territory (ACT), Section 30 of the Human Rights Act [2004] [ACT] states that:

Territory law must be interpreted in a way that is compatible with human rights

The CRPD provides the framework for many of the legal and ethical principles espoused in this chapter. In particular, maximizing individual autonomy, choice, and personhood, while safeguarding against undue influence and abuse, underpins the exploration and study of the concept of capacity. The CRPD Articles which have special relevance to these constructs are Articles 1, 12, and 16.

Article 1 states that the purpose of the convention is to promote full and equal enjoyment of human rights and freedoms by persons with disabilities and respect for their dignity. Notably, included in those persons with disabilities are people with long-term “mental or intellectual impairments.”

Article 12 – “Equal recognition before the law” is perhaps the cornerstone for all human rights discourse in relation to capacity. It 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 that 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. In particular, support should include the provision of information and education on how to avoid, recognize, and report instances of exploitation, violence, and abuse.

An interesting and oft-forgotten human right in the capacity field is Article 25, the right to health, which states that 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. In particular, states parties shall provide persons with disabilities with the same range, quality, and standard of free or affordable health care and programs as provided to other persons. Further, health professionals shall 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.

How is Article 25 relevant to capacity? The role of free and informed consent is clearly stated, the assessment of which is crucial to the enactment of human rights. For example, a noncompetent 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 rights, will, and preferences, if known, and if not known, in their best interests. Clinicians may need to act as advocates in climates of limited public health resources where noncompetent refusals for treatment are seen as opportunities to save or divert health resources .

The Capacity Construct: Definitions and Key Principles

Although the legal standards that define capacity vary across jurisdictions internationally, 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 and use reasoned processes to weigh the risks, consequences, and benefits of the choices

• 3. To communicate relatively consistent or stable choices

Capacity is not a unitary concept but rather refers to specific decisions, tasks, or domains. To conceptualize capacity as a global construct – for example, by referring to someone as “lacking capacity” without specifying for what decisions the person lacks capacity – is antithetical to human rights of autonomy and minimizing intrusion, in essence antithetical to principles of legal capacity. The concept of an “incapable person” or an “incapacitated person,” although sprinkled throughout legislation around the world, is similarly flawed. Rarely is anyone incapable of making any decisions or expressing any choices.

By stating that capacity is task or domain specific, we ensure that it is specific to the particular type of decision made (Peisah et al. 2009a). Accordingly, 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. Thus, capacity cannot be extrapolated from one capacity task to another. For example, a person’s capacity to write a will cannot be inferred from their capacity to consent to medical treatment.

Even within a particular type of decision or task category, capacity may vary. Within a single domain or capacity task, there is a spectrum or hierarchy of decisions from simple (e.g., having a blood test) to complex (e.g., amputation) 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), (Shulman et al. 2007) 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 real estate and share portfolio amongst multiple, conflicting beneficiaries with fractional bequests. It is for this reason that when making statements or writing reports about capacity, it is inappropriate to state that a person has or lacks capacity to write “a will” or “execute a power of attorney” but rather, to write “the will in question” or “the power of attorney appointing x for y matters.”

Also, in any discussion about incapacity, it must be appreciated that there is, in common law jurisdictions, a presumption of capacity in relation to anyone 18 years or more. This concept originated from a case in the UK, re MB (An Adult: Medical Treatment) [1997] 2 FCR 541 (at [553]) which involved a 23-year-old woman with a needle phobia who required an emergency caesarian section, for whom capacity was presumed until it was rebutted because she [at paragraph 22]:

lacked the mental competence to make a decision about the treatment that was proposed because she was incapable of weighing up the considerations that were involved. She was called upon to make that decision at a time of acute emotional stress and physical pain in the ordinary course of labour made even more difficult for her because of her own particular mental history

Consequently, incapacity is not “status” or diagnosis bound (Peisah et al. 2009a). This means that incapacity cannot be assumed because of a diagnosis, such as dementia or schizophrenia, which means nothing in relation to decision-making other than to raise a possible question as to capacity. The presumption may be rebutted by evidence to the contrary, but such evidence can only be derived when the person is given the opportunity to make the decision and appears to struggle as a result of a mental illness, disorder, or intellectual disability.

The question of whether or not a person has capacity is assessed in the context of their cognitive abilities and mental status 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 colostomy for a necrotic bowel. A useful formula in this context might be:

$$ \mathbf{Capacity}=\mathbf{brain}\ \mathbf{reserve}/\mathbf{decision} $$

Put another way, this means that the bigger and more complex the decision, the more brain reserve 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.

Importantly, many of these basic capacity principles, namely, the importance of presumption of capacity, the acknowledgment that capacity is not status or diagnosis bound, and that it is task specific, have statutory support in the USA in the Californian Due Process in Competency Determinations Act (DPCDA), Probate Code sections 810–813, and Civil Code section 39(b).

Supported Decision-Making: The Link Between Capacity Assessment and Legal Capacity

Supported decision-making is a collaborative process (Browning et al. 2014) of decision-making between a person with impaired capacity and a supporter or supporters. The process involves knowledge building and shared learning that facilitates the choices and decisions of the person with impaired capacity (Peisah et al. 2013).

This definition of supported decision-making, which is contingent upon a starting point of impaired capacity, needs to be reconciled with a presumption of capacity. Is this possible?

This model still 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” – penned by Darzins et al. (2000) 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. This is crucial to equitable participation in decision-making, which should not be a guessing game for the person involved.

Supported decision-making is reliant on capacity assessment. Browning et al. (2014) suggest that supported decision-making is a process that enables some people to exercise their legal capacity and thus greater autonomy and self-determination.

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. (2014) emphasized 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 assisted clients in understanding the end of life, both prior to and after a death, such discussions relying on sophisticated communication skills to ensure that clients 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 (Wiese et al. 2013), 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. (2015) 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.

The most sensitive and person-centered 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 (Bamford and Bruce 2000) 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. Supported decision-making that is tailored, individualized, and person-centered 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 (Quinn 2010).

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 (Peisah et al. 2013):

Step 1. ASSESS the person’s strengths and deficits, starting with an assessment of mental state and cognitive abilities, particularly assessing crucial skills such as executive function and awareness. Important executive functions relevant to decision-making include holding information in working memory, weighing alternatives and consequences, projecting, and planning. Additionally, memory, language, and communication functions are important and, if found to be lacking following assessment, can be buttressed (Zuscak et al. 2015). Another important cognitive construct for capacity is awareness. As a more nuanced and inclusive concept than the traditional notion of insight, which tends to be categorical and exclusive, awareness is a more useful construct for supported decision-making. Importantly, awareness seems to lack the floor effects of insight and as such, is often present at severe ends of disability severity, providing it is identified. For example, Clare et al. (2013) 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. In addition to preserved awareness, other strengths that need to be identified during assessment 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 may merely understand they have a problem or a dysphoric (negative, unpleasant) experience for which they want relief. Alternatively, they may be able to articulate what makes them happy. 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), or where they want to have that care, rather than making a full advance care directive.

Step 3. KNOW the person. It is essential to ascertain the will and preferences of the person. This includes finding out what the person considers important and what their long-held values and decisions were. In particular, if there is a neurodegenerative condition such as dementia, it might be useful to cue past decisions (precedent autonomy) and check whether the person still affirms these values. Information about past trusts and allegiances might be evident in documents such as powers of attorney or wills. It is equally important to understand current preferences, understanding what is important and meaningful to the person in their life right now as it relates to the decision at hand (e.g., in an accommodation decision for residential care, the person may be more interested in food or family than accommodation). If possible respect the person’s precedent autonomy, but also, where appropriate, “respect their right to change their mind when their mind has changed.” 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 (Hertogh 2015).

Step 4. MAXIMIZE the ability to understand by addressing and buttressing factors which hinder communication (Zuscak et al. 2015). This might include giving more time, optimizing the environment, simplifying, and concretizing information and providing it in an accessible format. Visual aids should be tailored to the person’s cognitive deficits including either written or visual information, with simple pictorial or linear representations of the choices to be made. People with expressive or receptive language deficits, confrontational naming, visual agnosia, dyslexia will all require different aids, and supported decision-making can be usefully assisted by a speech pathologist or neuropsychologist (Zuscak et al. 2015). Provide interpreters where necessary or written cues in the person’s language. Finally, it is respectful to elicit decisions when a person is at their best, when they are not delirious, when they are not sundowning, or when they are not in pain, drowsy, or fatigued. This might be first thing in the morning or after a treatment such as blood transfusion or dialysis.

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

Statutory support for supported decision-making is growing, and it is beyond the scope of this review. However, one illustrative and progressive example is Ireland’s Assisted Decision-Making (Capacity) Act 2015 which emphasizes will and preferences and outlines three levels of decision-making assistance: “decision-making assistant,” “co-decision-maker” (joint decision-maker), and “decision-making representative” (substitute decision-maker) .

Capacity Assessment

Capacity assessment occurs in two contexts, in the medicolegal setting and in the clinical setting. The two roles are distinctly different and require different processes in regard to engagement of the assessor or “expert,” setting up the assessment and the purpose and use of the report.

Assessing Capacity as a Medicolegal Expert

Capacity assessment that relates to execution of legal documents such as wills, powers of attorney, and enduring guardianship should be a truly medicolegal interaction. Ideally, formal assessments of capacity in that context should be requested by a lawyer who outlines the applicable legal test or procedures to apply. Clinicians should not take instructions from patients or fellow clinicians, and the duty of the clinician is to the court and not as an advocate for any party or lawyer. This process is governed by a code of conduct or civil procedure rules legislated in most common law legal systems around the world. Examples of the kind of principles embodied in such codes are:

• i. An overriding duty to assist the court impartially.

• ii. To restrict opinion to matters relevant to the expert witness’s area of expertise.

• iii. A paramount duty to the court and not to any party to the proceedings (including the person retaining the expert witness). An expert witness is not an advocate for a party.

• iv. Duty to work cooperatively with other expert witnesses and endeavor to reach agreement with the other expert witness where possible.

• v. To include in a report:

  • (a) The expert’s qualifications as an expert on the issue

  • (b) The facts, and assumptions of fact, on which the opinions in the report are based

  • (c) The expert’s reasons for each opinion expressed

  • (d) Any literature or other materials utilized in support of the opinions

  • (e) Any examinations, tests, or other investigations on which the expert has relied

• vi. To acknowledge limitations, i.e., to specifically state:

  • (a) If a particular issue falls outside the expert’s field of expertise

  • (b) If the report is incomplete or inaccurate without some qualification

  • (c) If the opinion is not a concluded opinion because of insufficient research or insufficient data or for any other reason

• vii. If an expert witness changes opinion on a material matter after providing an expert’s report then a supplementary report to that effect should be provided.

These “rules” or “codes” have emerged with the proliferation of experts and the perception of some experts as “hired guns” who give “opinions for sale.” Courts have faced real difficulties in understanding and evaluating the reasoning and conclusions of expert witnesses, particularly in relation to abstruse areas of expertise (McDougall 2016). The court needs to know what facts opinion is based upon, if those facts are “assumed” or “accepted,” and if the opinion is founded upon the expert’s specialized knowledge. In an Australian case, Makita (Australia) Pty Ltd v Sprowles (2001), Heydon JA stated that the prime duty of experts in giving opinion evidence: to furnish the trier of facts with criteria enabling the evaluation of the validity of the expert’s conclusions.

These concepts are held fairly widely in common law jurisdictions and resonate for with a ruling from the Queen’s Bench Division of the High Court of the UK, Lawton LJ in R v Turner [1975] which stated that … counsel calling an expert should in examination in chief ask his witness to state the facts upon which his opinion is based.

Similarly, in an earlier Scottish decision in Davie v Lord Provost, Magistrates and Councillors of the City of Edinburgh (Davie 1953) SC 34 at 39–40 where Lord President Cooper stated of expert witnesses that:

Their duty is to furnish the Judge or jury with the necessary scientific criteria for testing the accuracy of their conclusions so as to enable the Judge or jury to form their own independent judgment by the application of these criteria to the facts proved in evidence.

Capacity Assessments in Clinical Settings

Capacity assessments in clinical settings should be restricted to assessments that are related to clinical need, such as assessment of treatment consent and end-of-life decisions, guardianship applications for nursing home admissions, or action to address abuse. A valid “trigger” must exist to rebut the presumption of capacity and a need for assessment of capacity beyond merely a relative or lawyer’s request. This is particularly so for inpatients within hospitals. For some people, assessment per se is perceived as intrusive, and they may be offended that their capacity is being doubted or challenged.

The General Approach to Capacity Assessment

Whenever tasked with the role of assessing capacity, it is useful for the clinician to consider the following protocol:

• 1. History. The clinician must first obtain a comprehensive medical and personal history, as well as obtaining the “history of documents” to obtain information about the person’s precedent choices, their will, and preferences prior to the onset of mental disorder. They must be armed with relevant documentation such as, in the case of assessment of financial capacity, a list of assets and bills; with Will making, the past Wills; or with power of attorney or enduring guardianship appointments any past documents of appointment.

• 2. General examination. This must include both an examination of mental and cognitive state.

• 3. Specific functional capacity assessment. Broadly, capacity assessment can be divided into a consideration of the “why,” the “what,” the “who,” and the “freedom” of the decision:

  • i. The why of the decision. The trigger for assessment must be ascertained. Who has initiated the assessment? Answering this question provides a useful screen for ensuring there is a valid reason to rebut the presumption of capacity or to identify possible undue influence or elder abuse. Ideally, assessments that are initiated or at least understood by the person, the subject of the assessment, are most robust to such screens. An example of an unnecessary trigger might be when a clinician is asked to do a capacity assessment for appointment of financial power of attorney by the brother of a woman who has recently been hospitalized with a stroke but had already made a valid enduring financial power of attorney a year earlier.

  • ii. The what of the assessment. The specific tasks or domain being tested must be clarified and the relevant legal tests outlined if possible. Accordingly, an understanding of the specific nature of the decision and the facts and information relevant to the decision are integral to this part of the assessment. This must always be expressed in the person’s own words. An answer to the closed question, “Do you understand?” is never sufficient proof of capacity.

  • iii. The who of the assessment. When decisions are made that involve appointment of others or benefits to others, the person’s understanding of their relationship with the appointee or beneficiary and rationale for this choice are an important part of the assessment. Ideally, the assessor should be informed of genograms and family relationship history.

  • iv. The freedom of the assessment. It is an obligation of any capacity assessor to screen for the presence of coercion, undue influence (Peisah et al. 2009b), or abuse, regardless of the specific area of capacity being tested.

Clearly, this is but one of the enumerable approaches to capacity assessment that have been proposed (Wood and O’Bryan 2012). Regardless of which conceptual model that is used to frame clinical assessments of capacity, commonalities include combinations of a medical diagnosis (psychiatric, cognitive), assessment of values, a functional component (including risk assessment), a contextual component looking at the complexity of decision-making, and a reference to the appropriate legal standards and opportunities to enhance capacity (Wood and O’Bryan 2012). An example of statutory support for a schedule for capacity assessment, or “determination that a person is of unsound mind or lacks the capacity to make a decision or do a certain act,” has been codified in the Californian Due Process in Competency Determinations Act (DPCDA), Probate Code sections 810–813, and Civil Code section 39(b).

Ethical Considerations

Many of the ethical issues which abound in the area of capacity assessment have already been discussed. Firstly, there are the aforementioned human rights of autonomy and dignity, safeguarding against abuse and undue influence, and equitable right to health. Secondly, many of these principles align with the medical ethical principles of autonomy, equitable justice, beneficence, and non-maleficence (Katona et al. 2009). Thirdly, in medicolegal settings, there are the ethical duties embodied within the aforementioned codes of conduct in each jurisdiction. Finally, in addition to these much studied or codified principles, there are a number of incidental ethical issues that arise in the process of capacity assessment.

An obvious example is the urgent or high-risk situation that arises during capacity assessment. When it is incidentally found that the person is acutely unwell or suicidal, a clinical responsibility and imperative to ensure safety and treatment obviously override the medicolegal role. Another example is the nonurgent need for clinical care. Sometimes the only impetus for bringing someone to the attention of a clinician are capacity issues driven by a financial or family conflict imperative, rather than a diagnostic or treatment-driven impetus. As a result, it is not unusual for the capacity assessor to be the first clinician to set eyes on a person with dementia or, in some cases, mental illness. In such circumstances, it may be appropriate with the person’s permission to ask the lawyer to ensure that the person is referred to an appropriate clinician and to ask permission of the person to forward a copy of the report (which should contain a comprehensive report on cognition and diagnosis) to the clinician .

The Assessment of Specific Capacity Domains

The following presents a brief overview of the “what” of capacity assessment, the specific legal tests relevant to commonly assessed domains of capacity. Using the protocol outlined earlier, any assessment would proceed with history, general examination, and specific capacity testing including the why, the what, the who, and the freedom.

Capacity and Treatment Consent

The area of capacity and treatment consent provides us with ample opportunities for the actualization of human rights of autonomy, respect for will and preferences, and provision of supported decision-making for people with disability. Equally at stake is the right of people with disability to equitable access to health care, particularly for those who are unable to give consent to treatment. Again, a noncompetent refusal to have treatment should never be used as reason to deny a person that right.

In a recent case before the UK Supreme Court, Montgomery v Lanarkshire Health Board (Scotland) [2015] UKSC 11, the social and legal developments which are pointing away from a relationship of paternalism between doctor and patient were noted:

They also point away from a model based upon a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices. [81]

Capacity is essential for treatment consent. For a treatment consent to be valid, the person must be (i) competent (or have capacity) to make the decision, (ii) acting voluntarily without pressure or duress, and (iii) provided with enough relevant information about the treatment options and alternatives to enable them to make the decision.

Broadly speaking, using a simple derivation of the definition of capacity used above, capacity for treatment requires:

• i. An understanding of the situation, facts, and information relevant to the decision (i.e., the illness or problem, treatment choices, risks, consequences, and alternatives)

• ii. An ability to use and weigh that information

• iii. An ability to communicate the decision

This broad-brush approach to capacity for treatment results from the infinite permutations of this concept that have emerged from research (Grisso and Appelbaum 1995; Grisso et al. 1997) common law and statutory law (Ryan et al. 2015).

Regardless of which definition is used, the pivotal role of information provision, Darzin and Molloy’s (2000) “education step” referred to earlier, is clearly evident. Before assessing whether a person can understand the situation, facts, or information relevant to the decision, they must be informed of these. This includes discussing the material risks of the treatment. A risk is material if, in the circumstances of the particular case, a reasonable person in the patient’s position, if warned of the risk, would be likely to attach significance to it or if the medical practitioner is or should reasonably be aware that the particular patient, if warned of the risk, would be likely to attach significance to it. Importantly, this places the onus on the doctor to sufficiently inform the patient. As noted in Montgomery v Lanarkshire Health Board (Scotland) [2015] UKSC 11:

there is something unreal about placing the onus of asking upon a patient who may not know that there is anything to ask about (Wiese et al. 2014)

In keeping with current societal, legal, and ethical expectations, this is not merely about enough information but also how that information is presented. It must be presented in a form that can be understood, and, that means, if we are to meet our obligations under Article 12 of the CRPD, providing supported decision-making for those who require it.

The Principle of Necessity: When Capacity for Treatment Is Not Needed

The principle of necessity evolved from an English Case, Re F (1990) 2 AC 1, 77; (also F v West Berkshire HA [1991] UKHL 1 (17 July 1990)], which upholds the actions of agents (doctors) who are unable to get instructions from their principals (the patient) but must act in an emergency provided they act in a way that, in the judgment of a wise and prudent person, is in the best interests of the patient. The intent from that case was to provide guidance for doctors dealing with patients who were likely to be incapable only for a short period because, for example, they were unconscious or delirious and, with care and treatment, would soon regain capacity. In such cases, doctors could treat patients by doing no more than was reasonably required in their best interests.

It is important to note that in the same judgment it was stated:

So intervention cannot be justified when another more appropriate person is available and willing to act; nor can it be justified when it is contrary to the known wishes of the assisted. Accordingly, if a person presents to the emergency department, is unable to give consent and treatment is urgent and necessary, there is no obvious advance treatment directive, and there is no-one available to give substitute consent, the person can be treated. [p25]

Capacity and Advance Care Directives

Clinicians are sometimes asked to comment on or certify a person’s capacity or, in some jurisdictions (e.g., Medical Treatment Act, 1988. (Victoria, Australia) Schedule 1. Section 3, 5(2)] “soundness of mind” to make an advance care directive (ACD). As an advanced treatment refusal, the approach to assessing capacity in this context is similar to that for treatment consent or refusal, particularly if the ACD relates to a current condition, as is required in some jurisdictions. In other words, does the person understand the condition, illness or problem, treatment choices, risks, alternatives, and consequences, which in this case is death? Can they weigh that information and communicate their decision? The moot point in this area of capacity is that using the risk hierarchy or threshold approach, death is perhaps the most “risky” decision a person can make.

A suggested approach to assessing capacity in this area is firstly to address all reversible or potentially irreversible conditions that will impact upon the ability to make a decision. This might include pain, sleep, noisy, or non-private environment. Most importantly, identify and address the two most common conditions facing people about to make an ACD, namely, delirium and depression.

Delirium is highly prevalent amongst older patients and dying patients, not only as a preterminal event but also in the last weeks of life, with a prevalence up to 85% (Friedlander et al. 2004; Massie et al. 1983). Delirium is frequently missed by health-care professionals, both in hospital (Friedlander et al. 2004; Inouye et al. 2001) and in nursing homes (Voyer et al. 2008). Older patients (Voyer et al. 2008) and those with preexisting cognitive impairment or dementia (Fick and Foreman 2000) are more likely to have undetected delirium. Hypoactive presentations of delirium, characterized by less activity and more withdrawal and decreased speech (Meagher et al. 2007), are prevalent and frequently missed. For example, of 33% of 100 consecutive cases of delirium in a palliative care unit were classified as hypoactive, and these patients had the same impairment in cognitive functioning as patients with other types of delirium (Leonard et al. 2011), rendering them just as vulnerable to impaired capacity but perhaps less identifiably so.

With regard to major depression, thoughts of death and a wish to die are frequent symptoms of illness. In an interesting study undertaken some 20 years ago, 42% of 22 patients with major depression (mean age = 77) hypothetically expressed a preference for voluntary euthanasia in their present state, which reversed to 8% (n = 1) of those fully recovered and 11% of those improved from their depression (Hooper et al. 1997). Notably, there was less reversal when talking about hypothetical life-threatening illness with uncertain prognosis, where requests for euthanasia went from 83% before treatment to 58% after recovery.

Given the known association between depressive symptoms and interest in hastened death in patients who are seriously ill, and at some level in patients undergoing euthanasia/physician-assisted suicide (Levene and Parker 2011), depressive symptoms per se cannot be an exclusion criteria for making an ACD, but rather a pointer to potentially treatable or reversible conditions.

The next step after addressing reversible conditions in the approach to assessing capacity for an ACD is the education step. Ensure the person has been informed sufficiently about the nature of their current (or feared) condition to enable them to make a decision about whether or not to refuse medical treatment generally or of a particular kind. Secondly, ensure they are informed what an ACD is and its effect. Thirdly, ask the person to repeat this information in their own words. A person may not be capable of understanding all the risks, benefits, and consequences to make an ACD but still may be able to express a wish or preference and as such, a ripe opportunity for supported decision-making. Discussing an advance care directive may provide an opportunity for patients, families, and health professionals to discover and share values and expectation regarding end-of-life decisions (Tulsky 2005). Importantly, the ACD is not the “be all and end all” and that instead a higher-order priority is to engage in discussions around death or advance care planning with patients and their families or proxies as they confront the challenge of a progressive illness trajectory (Hertogh 2011; De Boer et al. 2010).

Although this section has started with the premise that a doctor might be involved in the assessment of capacity prior to making an ACD, and in some cases statutorily compelled to confirm soundness of mind, this is the exception rather than the rule. As stated by Hertogh (2011), “the presentation of the directive is customarily at the end of the enquiry instead of the beginning” (p. 512). In such cases, when presented with a directive, there is, as always, a presumption of capacity and, accordingly, of the validity of the document. If there is any doubt and a valid trigger for rebutting that presumption exists, obtain further information as to the medical, cognitive or psychiatric condition of the person at the time the ACD was made .

Capacity and Relationships

The fundamental right of every person to make decisions about sexual behavior and to choose not to engage in sexual activity is enshrined within very basic civil liberties and human rights to autonomy, dignity, and the right to be safeguarded against abuse. The enactment of these rights is equitably owed to people with disabilities such as mental illness and cognitive impairment. Doctors or other health-care professionals are sometimes asked about the appropriateness of two people – either one or both of whom have mental illness, cognitive impairment, or intellectual disability – entering into a sexual relationship. On the one hand, health-care professionals must tread carefully in regard to any interference in or abrogation of a person’s right to engage, in a non-abusive way, in a sexual relationship. On the other hand, there is a responsibility to identify when sexual expression impinges on the rights of others to be safeguarded against abuse. Complicating this are the various legal or statutory definitions of what constitutes a sexual offence and conversely what constitutes consent in this context. For example, consent in regard to sexual offences refers to free and voluntary agreement in some jurisdictions, although capacity to make the choice is included in others.

Generally speaking, when considering capacity for sexual activity, one might consider the person’s understanding of sexual activity, the identity of the other and the nature and consequences of the relationship if any (e.g., anxiety, genital trauma/itch, etc.). Importantly, with people in residential care facilities, rather than polarizing participants into victims and perpetrators, we should consider the capacity of both parties (Peisah et al. 2014).

Responses to expression of sexuality in facilities are often treatment focused with a goal of extinguishing the behavior. Rather, responses need to be needs and risk management focused, with decisions to intervene or not based on some of the following considerations:

• i. The relevant statutory definitions of consent and sexual offence in the jurisdiction.

• ii. The nature of the relationship, including the presence of a power imbalance or element of coercion.

• iii. Is the relationship associated with other exploitation, e.g., financial?

• iv. Is there a significant discrepancy between the two people’s age and cognitive capacity?

• v. What pleasure (or otherwise) do they experience in the relationship? Are they willing or content for it to continue? Can they advocate for their interests, say “no” when they want to; Can they understand and respond appropriately when the partner says “no”?

• vi. Is there evidence of protest, resistance, or coercion? Note that accession or assent does not equate to consent.

• vii. Is there evidence of harm or injury: physical (e.g., bruising, bite marks, rash) or psychological? Consider in the nonverbal or dysphasic or apathetic patient other signs such as behavioral change after conjugal visits, increased agitation, behavioral psychological symptoms of dementia, sleep, or appetite disturbance (Peisah et al. 2014a).

Once again there is an obligation under Articles 12 and 16 of CRPD to safeguard people with disability against exploitation, violence, and abuse. Yet, one of the most complex and challenging issues for clinicians is when an older person with a mental illness or dementia, who is a long-standing victim of abuse, usually domestic violence, chooses to return to live with the perpetrator. It is important in such cases to discern the difference between consent (which is contingent upon both capacity and acting voluntarily without duress or influence) and assent, which is mere agreement .

Capacity and Guardianship

The appointment of a guardian or conservator, a proxy or substitute decision-maker on behalf of another person who lacks capacity, can be made in advance by the person themselves with an enduring guardianship appointment in jurisdictions where this is available, or subsequently when needed, by courts or tribunals. The decision-making powers of guardians or conservators depend on the jurisdiction and may range from decisions about personal matters such as where the person can reside (accommodation), health care, what services they can receive, access (i.e., with whom they can have contact), and sometimes property and finances. In some jurisdictions, orders are plenary – that is, giving the guardian complete control (Kolva and Rosenfeld 2012) while in others they are limited to specific functions (O’Neill and Peisah 2017). Ideally, when capacity for needing or appointing guardian is assessed, it should focus on the specific decision-making powers to be divested to the proxy decision-maker.

In some jurisdictions, the test for appointment is defined and includes a determination of capacity. Otherwise, the approach to capacity assessment should follow the same procedure of why, who, what, and freedom, namely:

• (a) The “why” of the appointment:

  • i. What is the trigger for the assessment? A mere diagnosis, for example, of dementia, is not per se sufficient justification for an assessment and application for a court or tribunal appointed guardian. In contrast, it is an entirely appropriate trigger for a self-appointed enduring guardian. For a court or tribunal appointed guardian, does a decision need to be made, and are there risks involved in not appointing a decision-maker or can current informal arrangements continue? Ideally court- or tribunal-appointed decision-makers should be appointed as a last resort and not “just in case.”

• (b) The “what” of the appointment:

  • i. For the appointment of an enduring guardian, does the person understand when it is explained to them that they are authorizing someone to make decisions in the future, when they are no longer capable, about the specific domains nominated in the document?

  • ii. For the appointment of a court or tribunal appointed guardian, does the person have capacity to make decisions about the domains under application, such as accommodation, lifestyle, health, or access to others? For example, with regard to accommodation, does the person understand their disability, what services they need to help them, and what risks are involved in rejecting them? Do they understand the accommodation options, their benefits, and risk?

• (c) The “who” of the appointment:

  • i. For the appointment of an enduring guardian, why has the person been selected for appointment as an attorney?

  • ii. Has the person executed any enduring guardian appointments previously? If so, how frequently have there been changes (i.e., revocations and new appointments)? Does the person recall making these past appointments and revocations?

  • iii. Have they considered the trustworthiness and wisdom of the person they are appointing and any past conflict with that person?

  • iv. Is this appointment in keeping with previous appointments (e.g., has someone else been consistently appointed as guardian in the past)?

  • v. What is the history of the relationship between the person and the attorney and has there been any radical change in that relationship coinciding with the onset or course of dementia?

• (d) The “freedom” of the appointment of an enduring guardian:

  • i. Has all the relevant information been given to the person in a way they can understand?

  • ii. Is the person making the appointment freely and voluntarily, not being unduly influenced or “schooled,” to make the appointment?

Capacity and Powers of Attorney

A power of attorney is a written authorization (instrument) made by a competent principal, grantor, or donor of another person to represent or act on their behalf in personal, lifestyle, health, or financial affairs. A range of legislation dealing with POAs has been developed around the world. This includes, to name but a few, the UK Mental Capacity Act 2005 (which created the Lasting Power of Attorney (LPA)), Adults with Incapacity (Scotland) Act (2000), Mental Health Ordinance Cap. 136 (MHO), Hong Kong Special Administrative Region of the People’s Republic of China, and a range of Powers of Attorney Acts across different states in Australia and the USA and provinces across Canada.

Although the definitions of capacity to appoint a power of attorney (POA) and the powers conferred by POAs vary across jurisdictions, consider the following generic framework for assessment as used above:

• i. The “why” of the appointment. Who has initiated the appointment? Is there a valid trigger to rebut the presumption of capacity? Is there already a valid document in place? Has it been revoked? Is the appointment in the best interests of the donor or someone else?

• ii. The “what” of the appointment. Does the person understand when it is explained to them:

  • i. That they are authorizing someone to look after and assume complete authority of their medical, personal, or financial affairs?

  • ii. The nature and extent of what they are authorizing the attorney to do (the more extensive and complex a maker’s affairs are, the greater their understanding needs to be)

  • iii. The sort of things the attorney can do without further reference to them

  • iv. Do the makers understand that the attorney can do anything with [their property or other decisions] which they themselves can do?

  • v. When the authority will begin, i.e., immediately (general), or “springing” into action, or continuing (durable or enduring POAs), when they are incapable of managing their [financial or other] affairs

  • vi. That they can revoke the POA while they have the capacity to do so

• (e) The “who” of the appointment:

  • i. Why has the person been selected for appointment as an attorney?

  • ii. Has the person executed any powers of attorney previously? If so, how frequently have there been changes (i.e., revocations and new appointments)? Does the person recall making these past appointments and revocations?

  • iii. Have they considered the trustworthiness and wisdom of the person they are appointing?

  • iv. Is this appointment in keeping with previous appointments (e.g., has someone else been consistently appointed as attorney in the past)?

  • v. What is the history of the relationship between the person and the attorney, and has there been any radical change in that relationship coinciding with the onset or course of dementia?

• (f) The “freedom” of the appointment:

  • i. Has all the relevant information been given to the person in a way they can understand?

  • ii. Is the person making the appointment freely and voluntarily, not being unduly influenced or “schooled” to make the appointment?

Financial Capacity (or Capacity to Manage Property)

The approach to the assessment of financial capacity must be driven by the same human rights and capacity assessment principles of presumption of capacity, maximization of autonomy with a task-specific focus and safeguarding against abuse. To that end, the clinician must always question the trigger for assessment: why am I being asked to do this? The intrusive nature of assessment and the potential affront to dignity and autonomy posed by questioning someone’s ability to manage their own financial affairs, particularly an older person who has managed such all of their life, cannot be ignored. Conversely, while many of these assessments are initiated in the context of family conflict or a grapple for control of finances (Peisah et al. 2006), where there must be careful scrutiny for a valid trigger, there are also clinical circumstances such as concerns regarding neglect and/or financial abuse that will mandate an assessment.

The next step is to ensure that the assessor is equipped with sufficient corroborative information regarding the person’s financial affairs, assets, bill payment, and provision of care to perform the assessment. A global mental state assessment must be performed remembering that mental disorders such as depression and psychosis, or specifically symptoms of depression, apathy and delusions can equally effect financial capacity as can impairment of cognition. It is sometimes useful to remind oneself that “it is not all about dementia.” Notwithstanding this, assessment of cognition with an extended cognitive screen supplemented by frontal lobe testing at minimum is essential, if not full neuropsychological assessment. Finally, a performance-based financial capacity assessment must be undertaken.

Over the last 30 years, a plethora of instruments or methodologies to assess financial capacity have been developed. Sousa et al. (2014) have categorized these instruments into:

• i. Neuropsychological assessment

• ii. Functional assessment scales, mostly self-report, which assess a range of activities of daily living including capacity to manage financial affairs

• iii. Performance-based functional assessment scales based on direct observation of performance of activities of daily living including ability to manage financial affairs

• iv. Forensic assessment scales which specifically and directly address legal and clinical questions about financial capacity

There is no single gold standard instrument, although the forensic assessment scales specifically and comprehensively address financial capacity, rather than individual tasks such as counting money or purchasing items and giving change. For example, the Financial Capacity Instrument (Griffith et al. 2003) and the Financial Capacity Assessment Instruments (Kershaw and Webber 2008) conceptualize financial capacity as comprising several domains, including basic monetary skills, financial knowledge, cash transactions, checkbook management, bank statement management, bill payment, financial judgment (including fraud risk), knowledge of personal assets/estate arrangements, and investment decision-making. Inclusion of fraud risk in the assessment of financial capacity is a significant advance in highlighting to clinicians their responsibilities in screening for and identifying financial abuse and undue influence, consistent with Article 16 of the United Nations Convention on the Rights of Person with Disabilities (CRPD).

Testamentary Capacity

Testamentary capacity refers to the capacity to make a will. Clinicians are commonly asked to do assessments of testamentary capacity for testators who are contemplating, or have recently made a will (contemporaneous assessment), and for deceased testators whose testamentary capacity has been challenged retrospectively (retrospective assessment).

The test for testamentary capacity is defined according to an English case of 1,870, Banks v Goodfellow, in which the court laid out four broad criteria to be satisfied, namely:

To understand the nature of the act [of making a will] and its effects;

To understand the extent of the property of which he is disposing;

To be able to comprehend and appreciate the claims to which he ought to give effect;

That no disorder of mind will poison his affections, pervert his sense of right, prevent the exercise of his natural faculties that no insane delusion shall influence his will in disposing of his property and bring about a disposal of it which, if the mind had been sound, would not have been made

Although this case has stood the test of time, Shulman et al. (2017) have proposed that these traditional Banks v. Goodfellow criteria be updated and attuned to advances in neuroscience and the modern environmental context of testamentary capacity. Specifically, cognitive disorders far outnumber “insane delusions” associated with schizophrenia (as suffered by John Banks) as the basis for modern will challenges. Proposed criteria (Shulman et al. 2017) for an updated test of testamentary capacity that assesses whether a testator, with a specific level of cognitive abilities, has the capacity to execute a particular will, in a particular life context at a particular time, are that the testator must be:

• 1. Capable of understanding the act of making a will and its effects

• 2. Capable of understanding the nature and extent of their property relevant to the disposition

• 3. Capable of evaluating the claims of those who might be expected to benefit from his estate and able to demonstrate an appreciation of the nature of any significant conflict and or complexity in the context of the testator’s life situation

• 4. Capable of communicating a clear, consistent rationale for the distribution of their property, especially if there has been a significant departure from previously expressed wishes or prior wills

• 5. Free of a mental disorder, including delusions, that influences the distribution of the estate

Guides for performing contemporaneous (Peisah 2005; Shulman et al. 2007, 2009; Frost et al. 2015) and retrospective assessments of testamentary capacity (Shulman et al. 2005, 2007; Peisah 2005; Frost et al. 2015) have been developed. The issues of deathbed wills (Peisah et al. 2014), testamentary capacity and delirium (Liptzin et al. 2010), and wills and suicide notes (Sinyor et al. 2015) have been addressed. In addition to considering whether a testator had, or did not have testamentary capacity, the clinician must also screen for risk factors for “undue influence” (Peisah et al. 2009b). The term “undue influence” is a legal concept referring to coercion or subversion of will, specifically in the will-making process. However, the concept also has salience in circumstances where others seek to persuade vulnerable individuals including those with mental illness or cognitive impairment to make decisions or execute legal documents, including gifts, in their favor. This is inter vivos (between the living) or equitable undue influence. As outlined above, the importance of this broader more inclusive concept is acknowledged in Article 12 of the CRPD.

Risk factors for undue influence in both will-making and other document procurement include:

• 1. Relationship risk factors

  • i. Anyone in position of trust or upon whom testator is dependent for emotional or physical needs

• 2. Social or environmental risk factors

  • i. Isolation and sequestration of the person

  • ii. Change in family relationships/dynamics

  • iii. Recent bereavement

  • iv. Family conflict

• 3. Psychological and physical risk factors

  • i. Physical disability

  • ii. Nonspecific psychological factors such as deathbed wills, sexual bargaining, serious medical illness with dependency, and regression

  • iii. Personality disorders

  • iv. Substance abuse

  • v. Mental disorders including dementia, delirium, mood, and paranoid disorders

• 4. Legal risk factors

  • i. Beneficiary instigates or procures the will

  • ii. Contents of the will include unnatural provisions

  • iii. Contents favor the beneficiary

  • iv. Contents not in keeping with previous wishes

  • v. Other documents have changed at the same time

  • vi. Evidence of inter vivos gifting

Capacity to Give Instructions and to Give Evidence

Sometimes clinicians are asked by lawyers to determine if a person has capacity to give instructions to the lawyer. Once again there is a presumption of legal capacity, until the contrary is established when a solicitor interviewing a client has caused to question or rebut this presumption, in which case they should seek assessment to determine whether or not the client can give instructions.

Two Australian cases provide guidance in relation to this. In an early Australian case, Ranclaud v Cabban, (1988) NSW ConvR 55-385, 57–548, Young J noted that a person must “understand what a solicitor is and what one is doing when one is retaining a solicitor.” Although some may be “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 “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.

Further to that, in Dalle-Molle by his next friend Public Trustee v Manos, [2004] SASC 102, at (Inouye et al. 2001; Katona et al. 2009; Kershaw and Webber 2008) and (Kim et al. 2011b). 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.

• 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).

• 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.

• 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.

In a similar vein, in the UK case Masterman-Lister v Brutton & Co [2003] 3 All ER 162, at [75] Chadwick LJ described the test to be applied for capacity to give instructions:

… the 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 …

An important and familiar theme that emerges from these three common law rulings is that every case is different and that understanding must be commensurate with the complexity of facts and the subject matter of the particular case. Notwithstanding this specificity, the tests described above do necessitate a degree of mental flexibility, insight, judgment, and memory (Ashdown 2014) rendering a certain complexity to the task of giving instructions in general. For those unable to give instructions, a tutor, a next friend, or a guardian ad litem may be appointed in most jurisdictions.

Another aspect to court involvement is giving evidence. Not infrequently, people with mental or intellectual or cognitive impairment are asked to give “evidence about a fact” in either criminal or civil justice settings. Capacity to give evidence about a fact is usually defined in legislation, and is often stated in the negative, due to the presumption of capacity. Although the exact definition varies across jurisdictions, generally a person is considered not competent to give evidence if they are unable to understand a question about a fact and are unable to give an answer that can be understood to a question about the fact (O’Neill and Peisah 2017).

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 comorbid conditions that might exacerbate it, such as sensory impairment or anxiety. Cognitive impairment in one area should not be extrapolated to other areas of cognition such that a person may have impairment of semantic memory but relatively intact episodic memory, rendering them capable of giving evidence about a distressing personal event such as an instance of abuse (Sabat 2005).

The nature of the witness of fact also requires consideration. For example, a witness of fact such as the observer of a motor accident might 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 (O’Neill and Peisah 2017).

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 on the stand, and the provision of hearing loops or assisted listening devices and aides memoire might mitigate impairments to a degree. Supported decision-making and the use of registered intermediaries (RIs) with vulnerable witnesses have been a focus of interest and extensively implemented in parts of the UK (Hepner et al. 2014; Stewart et al. 2015). Once again, there has been increasing recognition that the capacity to give evidence, for both witnesses and defendants, is decision specific, issue specific, and support dependent (Australian Law Reform Commission (ALRC) 2014).

Capacity to Consent to Research

Older people with mental illness and/or dementia have an equitable right to research being conducted in areas relevant to their care and treatment and are owed an equitable opportunity to participate in such research. These rights must be extended to both those with and without capacity, although adequate safeguards need to be in place to respect their wishes and protect their interests (Katona et al. 2009; Peisah et al. 2012). Generally, people who lack capacity to consent for themselves should only be involved in research from which they, or others with similar conditions should benefit, and which cannot be undertaken otherwise involving people able to give consent (BMA and the Law Society 2004).

Over the last 10 years, there has been a massive proliferation of regulations, legislation, and policies to provide governance over ethical conduct of research internationally. The Office for Human Research Protections (OHRP) US Department of Health and Human Services has compiled the International Compilation of Research Standards, a list of over 1,000 laws, regulations, and guidelines that govern human subject research in 120 countries (http://www.hhs.gov/ohrp/sites/default/files/internationalcomp2016%20.pdf. Accessed 31 June 2016)

Specifically in regard to the participation in research of adults with impaired capacity, in 2009, the Secretary’s Advisory Committee on Human Research Protections (SACHRP) of the OHRP convened the subcommittee on inclusion of individuals with impaired decision-making in research making a number of recommendation in this area (SIIIDR).(http://archive.hhs.gov/ohrp/sachrp/20090715LetterAttach.html. Accessed 31 June 2016).

Research capacity is assessed using similar standards to treatment consent (Appelbaum and Roth 1982) although there are facts and issues that need to be understood and appreciated that are specific to research participation such as understanding the difference between treatment and research protocols, placebos, and randomization. An application of these standards to research consent includes:

• i. Understanding of the facts and issues including an understanding of the procedure and/or treatment, the risks and side effects, the available options, the advantages, disadvantages, and consequences of participation and nonparticipation, including random allocation, the use of placebos, and the difference between treatment and research

• ii. Rational manipulation of the above information and reasoning

• iii. Appreciation of the nature of the situation as it applies to the person

• iv. Communicating a choice, preferably a stable one (Resnick et al. 2007; BMA and the Law Society 2004)

These standards have been further operationalized to develop a range of instruments to structure and standardize the assessment of capacity due to the considerable variability in the judgment of capacity determination by clinicians (Peisah et al. 2012; Kim et al. 2011b).

The standards articulated above clearly reflect quite a high bar for understanding, and it has been suggested for over a decade that research involving older subjects who lack capacity will often need to rely on proxy or substitute consent (Mason et al. 2006). The role and obligations of such proxies and the types of research they may consent to on behalf of another varies from jurisdiction to jurisdiction. Notwithstanding these variations, whether it be individual proxies, tribunals, or courts who are providing consent, the kind of considerations they must take into account when making decisions about research participation usually include the past and current views of the person and the welfare and best interests of the person.

Although the notion of advance directives for research has been widely promulgated, it is generally held that the capacity for nominating a proxy for giving consent to research is probably less complex a task than giving consent for research or making an advance research directive. It is therefore probably retained longer in the course of neurodegenerative diseases such as Alzheimer’s disease, and it has been suggested that over 90 % of persons with early Alzheimer’s will likely be able to appoint a proxy decision-maker for research (Kim and Appelbaum 2006; Kim et al. 2011). It is therefore useful, as part of the advance care planning process that we encourage upon diagnosis of dementia, to encourage people to nominate not only a proxy for future health care but also for future research or at least document their wishes and preferences about such. In this way, we facilitate the equitable right to research and respect autonomous choice.

Conclusion

The assessment of capacity is a complex and highly specialized task and cannot be treated lightly by the clinician. Inevitably, when the question of capacity arises, a person’s human rights for autonomy and/or being safeguarded against abuse are on the line. As such, clinicians who are engaged to undertake capacity assessment are imparted with responsibilities as gatekeepers for the actualization or denial of human rights. This is worthy of more than a one-line report. When approached using a systematic methodology that is rule driven, using principles of presumption of capacity and individualized, task- and situation-specific assessment, capacity assessment can facilitate the actualization of human rights. When people with disability such as mental illness are empowered to make the decisions they are capable of making, while protected from making the decisions they are incapable of making, human rights are supported. Such principles are universal.