STAGE ONE: PREPARING FOR THE ASSESMENT

Triggers: why is this person’s capacity being questioned now?

The starting point is that a person is presumed to have capacity. Concern or doubt about the person’s capacity usually occurs when the person has a medical or psychiatric condition affecting their mental state, and in the context of that condition the person is required to make a decision that has serious consequences or high risk. The combination of the mental condition and the significant decision can be thought of as a trigger for the assessment. The clinician will need to have a clear understanding of the trigger, which should be documented. In some situations the trigger for the assessment may be simply an unusual feature of a proposed decision, and the mental condition may only be discovered at the assessment. For example, assessment might be considered if a person makes a decision that deviates markedly from their known disposition, without justification. 

• The condition affecting the person’s mental state is most frequently cognitive decline or dementia, but may also be psychiatric illness such as severe depression, psychotic illness, profound grief or stress, or severe physical illness associated with pain, insomnia or emotional distress. 
  
  
• A number of factors about the decision may cause the person’s capacity to be questioned. These include significant risk or long-lasting consequences associated with the decision, the decision the person is proposing to make is contrary to reasonable advice, without justification (for example, refusal of standard medical treatment for a serious but treatable condition), or the person is unable to make a decision at all despite being provided with all the relevant information and the appropriate support, where it is imperative that a decision needs to be made (for example, about residential care).
  
  
• A person is unable to communicate a decision (for example, a person affected by a stroke).
  
  
• A family member, carer, lawyer or service provider has expressed concern about a person’s decision-making ability.  This may occur before a diagnosis of dementia has been made or it may be part of future planning, for example, encouraging a person to appoint an attorney for an EPOA.

People have the right to make unwise or imprudent decisions, as long as they retain capacity to make the decision at the time they are making it.  Nonetheless, an unwise decision may trigger a more detailed assessment, particularly if the decision is out of character or has significant consequences.

Identifying the decision

Clarify what the decision is that the person needs to make, why it needs to be made now, what information would be needed for anyone making a similar decision, what are the alternative options available, and what are the reasonably likely consequences of those options or of not making a decision at all. Where, for example, the decision concerns a legal matter, the clinician can reasonably expect this information to be provided in writing by the lawyer. If it concerns moving into residential care, the notes of the multidisciplinary team that assessed the person as needing to move, giving the reasons for the move being recommended, should be available to the clinician assessing capacity.

For the appointment of a welfare guardian or property manager, it is important to identify the kinds of decisions or aspects of them that will be relevant to a person’s current circumstances and those decisions that will need to be made in the foreseeable future.  For example, a person may be capable of consenting to routine treatment medical or dental treatment but would not be able to weigh up more complex decisions and the risks and benefits about whether to consent to elective surgery or chemotherapy.

Medical conditions that impair capacity

Consider whether there are any medical conditions that could be impairing the person’s capacity and if so, what treatment is being given and how effective it is. This step includes reviewing medical notes and contacting the person’s usual doctor if required.  Medical conditions that could impair capacity include:

• dementia and degenerative and other neurological diseases; 
• acquired brain injury, including traumatic injury and stroke;
• delirium;
• any physical condition that is causing severe discomfort or distress;
• severe mental illness, either persistent, such as schizophrenia, or acute such as acute depression or mania;
• alcohol and substance addiction; and
• learning disability, including intellectual disability and autistic spectrum disorder

Consider referring the person for further assessment if there is a realistic possibility that the person’s capacity is impaired by a condition that is outside the clinician’s scope or expertise.  The purpose of this referral will be for the condition to be diagnosed and treated, and not for the capacity assessment itself to be passed on to another health practitioner, although a second opinion about the person’s capacity may be helpful.

Support measures and communication

The clinician has a role in ensuring that the person to be assessed has already been given the best chance of making a decision, for example, by the existing health care team or service and/ or with assistance of the person’s family.  All reasonable attempts that have been made to support the person make a decision should be documented, including what these attempts have entailed. Examples of what may be done include:

• Treating a medical condition which may be affecting the person’s capacity (for example, delirium);
• Using a different form of communication (for example, providing written material) or by providing information in a more accessible form (for example, drawings); and
• Ensuring that discussions with the person about the decision have been conducted in an appropriate environment (for example, respecting a person’s privacy and minimising distractions on a busy hospital ward or visiting the person in their own home).

Where necessary, arrange to have the assistance of a professional interpreter with appropriate accreditation and experience in health interpreting.   If English is the person’s second language, it is common for a person whose capacity is deteriorating to lose their ability to communicate in a second language early in the process.   Using a family member or friend is not acceptable.  Even with an interpreter available, a fully bilingual clinician, if available, may be a preferable option for undertaking the assessment. 

Involvement of family/whānau and support

It is a matter of judgment as to whether an immediate family member should be present for the assessment interview.  If the person is accompanied by a family member or friend, it will be necessary to consider conducting at least part of the interview privately with the person, especially if there are reasonable grounds for suspecting undue influence or coercion.   In this case it may be necessary to consider having another professional person, such as a trusted carer, a health and disability advocate, or a cultural support person present.

Where the person being assessed is Māori, consider the relevant cultural competencies and tikanga Māori. For all persons being assessed, thought needs to be given to the process of engagement as capacity assessment, which is motivated essentially by doubts about the person’s capacity, may be experienced by some as demeaning or humiliating.

Where and when

Consider the time and place for the interview; ensure that enough time is available for the interview to be conducted at an easy pace and that the place chosen for the interview is comfortable and private.  It is important to avoid interviewing later in the day for older persons when they may be suffering from fatigue or “sundowning”.

Hearing, visual and communication aids, where used, should be brought to the interview.

Gathering information

It is vital that all relevant information to the decision is accurate and complete.  For example, the outcome of a needs assessment is relevant for the person to decide between living in supported residential care and living at home.  Family or other professionals involved, such as the person’s lawyer, should be consulted as appropriate.

It may be helpful, or even essential, to obtain background history from an informant, a friend or family member, particularly where the person has dementia and there is likely to be a progressive decline in the person’s capacity.   The purpose of contacting informants is to use the information objectively and to check the extent to whether the proposed decision is out of character or inconsistent with the person’s previous decisions and life patterns.  This information may include the history of cognitive decline, problems with previous decisions of a similar nature and may involve getting a range of views from other informants if need be.