How to determine someone’s decision making capacity

If one of your loved ones appears to have reduced mental clarity and is planning to make significant decisions regarding changes to their Will, or is considering signing legal documents such as Enduring Powers of Attorney, how should you proceed?

Rosa Bazzanella spoke with Dr Tracey Wardill, a Principal Neuropsychologist at Neuropsychology Melbourne, to gain a better understanding of cognitive testing, the processes involved and why someone might see a neuropsychologist to have their capacity assessed.

Tracey has over 30 years of experience as a clinical neuropsychologist in both the private and public health systems.

What are the key symptoms or characteristics family members should look out for if they have concerns about a loved one’s decision making capacity? At what point should they come to someone like you to undertake formal testing?

Let’s first consider what we mean by capacity. It is important to highlight that capacity is never defined in the abstract. It is always a question of the capacity to do what. Testamentary capacity refers to someone’s capacity to make or change a Will.

We can look at a person’s capacity to appoint an attorney under an Enduring Power of Attorney (EPA). More specifically, do they have the capacity to appoint an attorney to make financial decisions? For personal or lifestyle decisions? Or to appoint a Medical Treatment Decision Maker (MTDM) to make medical decisions?

There may come a point in time when the question arises as to whether someone has the capacity to make particular types of decisions.

If a person is found to lack the capacity to make informed decisions, the question will arise as to whether they have an attorney appointed who can make decisions on their behalf.

If not, do they have the capacity to appoint an attorney or a MTDM?

For some people, questions about their capacity to do all these things might arise at the same time. For others, the question of their capacity may be raised only in relation to a specific area.

There are various circumstances when it may be important for a person to have their decision making capacity assessed. If someone lacks the capacity to make informed decisions, they may make decisions which are not in their best interests or that place them at risk. It is important to know if a person has the capacity to sign legal documents, including a Will, EPA or MTDM.

Family members should consider having the capacity of their loved one assessed by a neuropsychologist if they are concerned that changes in their loved ones’ memory or thinking skills may be having an impact on their ability to make informed decisions.

Family members may have noticed changes in the person’s ability to think or remember. They may have observed changes in the person’s behaviour and think that they have been acting out of character. Concerns might be raised if there have been changes in the way the person communicates. The person may not appear to understand everything that is said to them, may express themselves in odd ways, or frequently lose track of conversations. Family members might be concerned if the person is often confused, is lost easily, or can no longer manage tasks they once did without difficulty. All, or any of these things, might raise the question of whether the person has developed, or is developing, a cognitive disability.

It is important to note that people can have changes in their cognition – that is, changes in their memory or thinking abilities – and still retain the capacity to make decisions. It is incorrect for people to assume that their loved one has lost decision making capacity because she has become forgetful. It is also possible that a person with a cognitive disability can have the capacity to make some types of decisions but not others.

Neuropsychologists are trained to assess and determine whether a person has memory and thinking problems that constitute cognitive disability. The neuropsychologist can determine the nature and extent of a person’s cognitive disability and then provide an opinion as to whether a person’s disability is impacting on their capacity to make decisions.

There is no ‘one size fits all’ capacity assessment. The neuropsychologist will tailor the assessment to the individual, taking into account what types of decisions are to be made and the concerns raised by the family members.

Can members of the public come directly to you for an assessment, or do you require a formal referral from a medical practitioner or lawyer?

There is no formal requirement for a medical referral in order to see a neuropsychologist, however, the neuropsychologist will often ask for a referral from a doctor and/or a letter of instruction from a lawyer. These provide the neuropsychologist with:

• The context and background for the person and their circumstances. It is important to understand why the person has been referred for assessment, especially if there is a medico-legal question at issue;
• Information as to whom the neuropsychologist needs to report back to; and
• A line of communication should further medical investigations be needed.

It is, however, possible for an individual to go directly to a neuropsychologist without a referral from a doctor or lawyer.

As a neuropsychologist, how do you assess a person’s decision making capacity? What does your formal testing consist of?

An assessment of someone’s decision making capacity involves both a detailed interview with the person and formal testing of their cognition, that is, formal testing of their memory and thinking skills.

Testing by a neuropsychologist involves the administration of tasks that range from simple to complex. Tests predominantly involve asking the person questions and administering pencil and paper tasks. A person’s performances on the various tests are interpreted, taking into account their age, education, gender, and cultural background.

When conducting an assessment, neuropsychologists have a range of tests to choose from.

They will select those appropriate for the person they are seeing. For example, if the person has suffered a stroke and lacks the ability to speak, then appropriate non-verbal tools are used which cater for the person’s disability. The person can be provided with a way to indicate a ‘yes’ and ‘no’ response to questions. If a person has poor literacy or numeracy skills, this can be taken into account. If English is not their preferred language, the testing will be conducted with the help of a professionally trained interpreter.

Apart from formal testing, what else about the person do you take into account when assessing capacity?

In addition to formal testing, the person will also be interviewed in detail about information that is relevant to the type of decisions being made.

For example:

• If the person’s capacity to make medical decisions is being investigated, the neuropsychologist will ask the person about any illnesses they have and treatments being proposed or already received;
• If financial decision making capacity is being questioned, the person will be asked about their understanding of their financial situation; and
• If the question is one of testamentary capacity, the person will be asked about their estate, which assets they own, the value of the assets, who are their beneficiaries, and if anyone has been left out of the Will, and why.

As part of the interview, the neuropsychologist will determine the person’s level of insight. That is, does the person know and understand the extent of their problems and how these might impact on their life and any decisions they might make.

If a person has insight into their problems, they are in a better position to make informed decisions and choices. If they lack insight, which can often occur as part of a brain injury or illness, then it is difficult for the person to make an informed decision.

It may often be the person’s level of insight that is the deciding factor in determining capacity.

Are the person’s family members involved in the assessment? How can they be of assistance?

Family members usually accompany a person to the assessment or assist with organising for the assessment to take place at the person’s place of residence.

It is important to note that family members are unable to sit in on the assessment. The presence of a family member can be very distracting and can potentially result in misleading or un-reliable test results. When there are legal issues at stake, it is particularly important that an independent assessment is conducted with no other parties present.

With the person’s permission, the neuropsychologist will speak to relevant family members to obtain background information. This might include information about the person’s medical history, any disabilities, and their current circumstances and needs.

Importantly, the family will be asked about any changes they have noticed in the person’s memory, thinking skills or behaviour.

The history of change in a person’s memory, thinking skills, or behaviour can be crucial to establishing a diagnosis of dementia. Dementia means a progressive loss of brain function over time. These changes normally occur relatively slowly. Sometimes it is only when a family member is helped to look back over time that they are able to realise what has changed for their loved one. Establishing the nature and timing of any changes provides vital information which helps the neuropsychologist identify the relevant history for the person who is being assessed.

We have noted, particularly in VCAT matters, that increasingly the Tribunal is presented with conflicting medical reports about a person. These vary considerably between GPs, neuropsychologists, geriatricians and clinical psychologists. What do you put this down to?

Determining a person’s capacity to make decisions is a complex matter. The consequences of saying someone does or does not have decision making capacity can be very significant for the person and their family. It is vital, therefore, that a thorough assessment of their capacity is conducted. This involves both a detailed interview and appropriate testing.

The proper assessment of a person’s decision making capacity is a time consuming process. It often involves seeing the person on more than one occasion.

Not all health professionals have the time to conduct a detailed assessment. Not all health professionals have either the training or experience to conduct these types of assessments. This may explain why sometimes the findings from different professionals will vary. It is VCAT’s role to decide which health professionals’ report/s they will accept.

It is not uncommon for different family members to have quite different views about their loved one’s decision making capacity. It is important, therefore, that assessments are conducted thoroughly and independently and that the health professional is not unduly influenced by just one family member. Unfortunately, we occasionally see cases where a family member, with their “own agenda” and reasons (usually self interest), take their elderly loved one to a doctor or other health professional to try and influence the opinion of the health professional.

Why is it important to assess a person on separate occasions?

A capacity assessment can take a number of hours. An elderly person may tire if tested over an extended period. An assessment may, therefore, be broken into two or three shorter sessions. It is always important to work within the person’s limits and not to overtire them as this may impact their performance.

Conducting an assessment over a number of sessions also allows the neuropsychologist to determine if the person’s responses to questions are consistent over time.

What is the key information lawyers should provide when briefing you to assess capacity? What can lawyers do to best assist you to prepare a report that will be useful for a Court or Tribunal?

What type of decision making capacity is to be assessed?

As neuropsychologists, when we have someone referred to us for a “capacity assessment”, the first question we ask is “capacity to do what?”. It is imperative that this question is answered prior to the assessment being undertaken.

It is important that the referring lawyer always tells the neuropsychologist what types of capacity are in question before the person is seen for the assessment.

Which legal documents is the person proposing to sign?

We need to know if the person is making or changing a Will. If so, we will require information about their estate, details of potential beneficiaries, including those being excluded from the Will, and changes being made to previous Wills. This information remains confidential and it is usually not described in our report. It is needed, however, if the neuropsychologist is to determine whether or not the person has an adequate understanding of all the matters relevant to making their Will.

If the person wants to appoint an attorney under an EPA, or a MTDM, we need to know which documents they are proposing to sign.

Any relevant background information about the client.

This may include information about their current circumstances; relevant medical or psychiatric history; any disabilities; their educational or occupational history; and their cultural background.

In summary, if a lawyer is referring someone to a neuropsychologist, they need to provide the neuropsychologist with as much detail as possible on the client. They need to provide a complete account of the legal issues involved. For example, the neuropsychologist does not want to undertake a capacity assessment to determine if a person can appoint an attorney under an EPA, only to have the lawyer later ask if the person has the capacity to make a Will.

All relevant legal questions need to be laid out prior to the assessment being undertaken to ensure the relevant assessment is completed.

As our aging population continues to increase and people continue to live longer, assessments of a person’s decision making capacity will become a necessary part of caring for our loved ones. It is important that this assessment is taken seriously and conducted by professionals in this field. A GP’s assessment will not always be sufficient, and you may need to obtain specialist opinion from a geriatrician or a neuropsychologist.

If you have concerns about a loved one’s decision making capacity, it is important that you speak with a lawyer. Our Wills, Trusts & Estates team can help you identify the concerns and issues, guide you through the steps of a capacity assessment and assist with the activation of an enduring power of attorney or applying to VCAT to have an administrator or guardian appointed.