Section 5.2 Assessing Capacity in Health

 

This section has three parts. Select a link from the list below for more information about each topic:

Or select the section that relates to the areas of decision-making relevant to the situation.

Advance care directives

A person’s capacity to make health care decisions is often reduced by serious illness. However, this is the time when decisions of that nature need to be made, including end-of life care decisions. Planning ahead by making an advance care directive will help a person who needs decisions made for them when they lack the capacity to make them for themself. An advance care directive can be in addition to, or instead of, appointing an enduring guardian.

In NSW an advance care directive usually contains:

  • details of a person’s health care preferences
  • any values and beliefs that may guide future treatment
  • instructions regarding the future use or restriction of particular medical treatments
  • details of who a person wants to make these decisions for them when they aren’t able to do so. 25

There are two points at which a person’s capacity might be assessed when dealing with an advance care directive.

1. When the advance care directive is being made

For the advance care directive to be legal, the person making the directive must have capacity when signing the document. It is often a legal or health professional who will undertake, or seek, an assessment of a person’s capacity at the time of the making of the advance care directive.

2. When the advance care directive needs to be used

This assessment is triggered by concern about whether the person who made the advance care directive still has the capacity to make their own medical or dental decisions. If they are found to lack capacity to make a certain decision, the individual named in the directive can make the decision for the person.
It may be the individual named in the directive that will undertake, or seek, an assessment of whether the other person has lost the capacity to make medical and dental decisions. Or it may be a medical or dental practitioner.

The remainder of this section is concerned only with the first point: to test whether the person has capacity to make an advance care directive. Advice about the test for the second point is in Section 5 ‘Medical and dental treatment’ on page 10

Legal test

This is what you are looking for when you are assessing whether a person has the capacity to make an advance care directive:   

CAPACITY = UNDERSTANDING THE NATURE + EFFECT OF THE DOCUMENT AT THE TIME IT IS MADE        

Checklist

Does the person understand the nature and effect of the advance care directive at the time it is being made, not hours or days before or after it is made?

Do they understand the ‘nature’ of what they are doing by making an advance care directive? Are they familiar with the general idea of advance care directives? More specifically, do they understand the following:

  • They are providing instructions about their health care preferences that will be followed if they lack the capacity to make these decisions?
  • They can provide information about their values, and general and specific information about what they want in particular health care circumstances?
  • The directive can’t be used to allow assisted suicide, which is illegal in NSW?

Does the person understand the ‘effect’ of the directive? Can they tell you the general result of the advance care directive? That is, do they understand the following:

  • The directive will come into effect when they lack the capacity to make medical and dental decisions?
  • The person named in the directive will make medical and dental decisions on their behalf?
  • The directive will continue to be in effect as long as they lack the capacity to make medical and dental decisions?
  • They can’t revoke or change the directive while they lack capacity?

Is the person freely and voluntarily making the advance care directive?

Can they communicate the above, with assistance if necessary?

If the person wants to change or revoke an existing advance care directive, capacity needs to be assessed at that time. As well as the above, the person must know the following:

How and why the new document differs from the old.

The nature and effect of changing or revoking the existing advance care directive.

Tips on Questioning

Remember, when assessing whether a person has the capacity to make an advance care directive, it is important that you:

  • ask open-ended questions
  • do not ask leading questions
  •  frame your questions to quickly identify any areas of concern for which a person may need support or help, or require a substitute decision-maker 
  •  ensure it is the person being assessed who answers the questions. In some circumstances the person may need support from a neutral person such as an advocate or an interpreter. 26

Questions

Here are some specific questions you may ask as part of the assessment process to determine if the person has capacity to make an advance care directive.

  • Explain to me what an advance care directive is.
  • Why do you want to make an advance care directive?
  • When will the advance care directive be used?
  • What sorts of decisions do you think it will cover?
  • How will it help someone make those decisions in the same way as you would make them?
  • Tell me about your family and friends.
  • Who would you want to be able to make medical and dental decisions for you?
  • Why would you choose that person?
  • What happens if you decide that you want to change or cancel your advance care directive?
  • When would you be able to do this?

Similar questions to those above should be asked if the person wants to change or cancel an advance care directive. Also ask:

  • What are your current advance care directive arrangements? How do you want to change them and why?
  • Is anyone prompting you to change the current arrangements and, if so, why?

Case Study

Advance care directives

‘I have a client who asked me to assist him in writing an advance care directive. He has Multiple Sclerosis (MS) and is fearful that one day he will have trouble communicating decisions. I told him that there really is only a tiny chance of this, but he said that you can never be too prepared. That’s true, and it’s generally a good idea to make plans for the future anyway.

We went through the form that he had, and I helped him understand the types of medical scenarios that may come up and the decisions which may need to be made. It was clear to me that he understood what the document was all about, how it related to him, when it would be used, and for what purpose. He signed the advance care directive after we had discussed it thoroughly and I then witnessed it to show that I believed that he had capacity to make it.’

Margaret, community nurse

More information    

Advance Care Directives Association Inc

Ageing, Disability and Home Care (ADHC)

NSW Health

Law Society of NSW

LawAccess NSW

Legal Aid NSW

Community Legal Centre (CLC)

The Benevolent Society

Medical and dental treatment

It is important that people make their own decisions about medical or dental treatment, when they can, based on their beliefs and values. If there is a question about a person’s medical or dental decision-making capacity it is usually a medical or dental practitioner, or other health professional, who conducts or seeks a capacity assessment.

Practitioners have a legal and professional responsibility to get consent before treating any person. Generally, the person gives this consent themself. Before assessing whether a person has capacity to make decisions about specific treatment, the practitioner must provide the person with all relevant information about treatment options.

If the practitioner assesses a person as lacking the capacity to make a decision, and the treatment is not urgent, they must seek consent from either:

  • a ‘person responsible ’ 27
  • a guardian, appointed under an enduring guardianship or by the Guardianship Tribunal
  • a person named in an advance care directive
  • the Guardianship Tribunal or the Mental Health Review Tribunal.

Legal test

This is what you are looking for when you are assessing whether a person has the capacity to make medical or dental decisions:   

CAPACITY = UNDERSTANDING THE NATURE + EFFECT OF THE ACTUAL TREATMENT BEING PROPOSED AT THE TIME THE CONSENT IS REQUIRED
 

Checklist

Does the person understand the nature and effect at the time that the medical or dental decision is required, not hours or days before or after it is made?
Does the person know the ‘nature’ of the treatment? That means, do they understand broadly and in simple language:

  • what the medical or dental treatment is?
  • what the procedure involves?
  • why it is proposed?
  • that there are other options? If choosing between options, the person must understand what each option is, what it involves, the effect of each option, and the risks and benefits
  • what it means if they don’t have the treatment?

Does the person understand the ‘effect’ of the treatment? Are they aware, in simple terms, of the main benefits and risks of the treatment?
Does the person have the ability to indicate whether they want the treatment? Can they communicate any decision made, with assistance if necessary?
Has the person made the decision freely and voluntarily?

Also consider that a person has a right to refuse treatment. What most people would decide to do in the situation is irrelevant. Consider the following:
Is refusal of treatment consistent with the person’s views and values?
Is this behaviour usual for the person?
Has all the relevant information been given to the person in a way they can understand?

Tips on Questioning

Remember, when assessing whether a person has the capacity to make medical or dental decisions, it is important you:

  • ask open-ended question
  • do not ask leading questions
  • frame your questions to quickly identify any areas of concern for which a person may need support or help, or require a substitute decision-maker
  • ensure it is the person being assessed who answers the questions. In some circumstances the person may need support from a neutral person such as an advocate or an interpreter. 28

Questions

Here are some specific questions you may ask as part of the assessment process to determine if the person has capacity to make medical and dental decisions.

  • Tell me about your health or teeth and why you need some medical or dental treatment.
  • What is the medical or dental treatment that you might be having? Can you explain it to me?
  • Where will you be having the treatment?
    How long will it take?
  • How will the treatment help you? What are the good things about the treatment?
  • Will there be any bad things about the treatment? What are they?
  • How do you think you will be able to deal with these?
  • What are the risks of having the treatment?
  • Is there any other treatment you might be able to have? Can you tell me about it?
  • How would this other treatment help you?
  • What are the risks of having this other treatment?
  • Which do you think is the best treatment? Why?
  • What would happen if you didn’t have any treatment at all?
  • What do your family and friends think of the treatment?
  • What do they want you to do? Why?

Case Study

Medical decisions

‘Jovesa and I were visiting the doctor because he had developed tremors and a very fast heartbeat. The doctor explained that the problem was actually because of a part of his body in his neck called his thyroid. He needed medication and regular blood tests to monitor whether his new medication was working.

The blood tests showed that things were not settling down. The doctor then talked about what he could do next to stop the thyroid from causing these things to happen. He gave Jovesa a pamphlet to explain:

  • why the thyroid was playing up and why the medication wasn’t working
  • the different things that he could do to stop the thyroid causing problems
  • the treatment he recommended for Jovesa and why
  • the risks of having or not having the treatment
  • that Jovesa has a right to decide whether or not to have the treatment.

The pamphlet used really simple language and photos to explain everything. When I took Jovesa home we went through the pamphlet together on a few occasions. I asked him various questions to work out whether he understood the information or not. Then we went back to the doctor. Jovesa told the doctor that he had decided to have the treatment, even though he was scared about it.

The doctor asked Jovesa some questions about how the treatment worked and why he had decided to have it, and came to the conclusion that he had the capacity to make the decision about the treatment himself.’

Felise, carer

Other health decisions

There may be a need to assess the capacity of a person to make other health decisions, such as whether to:

  • have a non-intrusive examination by a doctor or dentist, for example, having the mouth, teeth, throat, nose, ears or eyes looked at
  • take over-the-counter chemist medication
  • have alternative therapies such as physiotherapy, acupuncture, reflexology, chiropractic or naturopathic treatment.

The person needs to understand the nature and effect of the type of examination, medication or therapy that they are deciding upon.

You can use the capacity test (checklist and questions) from the medical and dental treatment section, on page 102, as a guide to capacity assessment for other health decisions.

More information

Guardianship Division of NSW Civil & Administrative Tribunal

Mental Health Review Tribunal (MHRT)

NSW Public Guardian

NSW Health

Law Society of NSW

The Benevolent Society

LawAccess NSW

Legal Aid NSW

Community Legal Centre (CLC)

NSW Civil & Administrative Tribunal

Guardianship Division
Phone: (02) 9556 7600
Toll free: 1800 463 928
People who are Deaf or hard of hearing use the national relay service to contact us call: 133 677.

People with speech impairments use the national relay service speak and listen service 1300 555 727.
www.ncat.nsw.gov.au
You can contact the Guardianship Division to speak with someone about persons responsible, medical and dental decisions. Alternatively you can find the following publications by going to the Tribunal’s website and clicking on the ‘Publications and community education’ tab then scrolling down the page to the ‘Consent to medical or dental treatment’ section:
• Person responsible: This publication defines ‘person responsible’ and lists their role and functions when giving substitute consent to medical or dental treatment.
• Substitute consent: This explains what ‘substitute consent’ is and when it is required for medical or dental treatment.

Mental Health Review Tribunal (MHRT)
Toll free: 1800 815 511
Ph: (02) 9816 5955
www.mhrt.nsw.gov.au
When the person is a patient in a mental health facility, the Mental Health Review Tribunal (MHRT) may approve certain medical or dental treatment or procedures.

NSW Public Guardian
Toll free: 1800 451 510
Ph: (02) 8688 6070 (information and support)
People who are Deaf or hard of hearing use the national relay service to contact us call: 133 677.

People with speech impairments use the national relay service speak and listen service 1300 555 727.
www.publicguardian.justice.nsw.gov.au

The NSW Public Guardian has useful information on their website at ‘Common questions – Consent to medical and dental treatment’. You can also get a copy of the ‘Person responsible fact sheet’ by phoning the office or on their website by clicking the ‘Publications’ tab then select ‘Fact sheets’.

NSW Health
Ph: (02) 9391 9000

People who are Deaf or hard of hearing use the national relay service to contact us call: 133 677.

People with speech impairments use the national relay service speak and listen service 1300 555 727.
www.health.nsw.gov.au
NSW Health has policies on Advance care directives and Advance care planning. You can phone them for a copy or access it on their website:
www.health.nsw.gov.au, by clicking on the ‘Publications’ tab, then selecting ‘Policies directives and guidelines’.
NSW Health also has an internal policy directive called Consent to medical treatment – patient information, which is available at: http://www.health.nsw.gov.au/policies/a-z/c.asp

Law Society of NSW
Ph: (02) 9926 0300
Toll free: 1800 422 713
www.lawsociety.com.au
Solicitors can also give you information and advice about medical and dental treatment decisions. The Law Society of NSW can give you a list of solicitors in your area if you phone its ‘Solicitor Referral Service’ or through its website www.lawsociety.com.au, by clicking on ‘Advance find a lawyer search’.

Benevolent Society
Ph: (02) 9339 8000
The Benevolent Society has a detailed publication, Your future starts now. It is available by phoning or on its website: https://www.benevolent.org.au/ ​ by clicking on the ‘What we do’ tab, then select ’Older people’ and then ‘Planning your future’.

LawAccess NSW
Ph: 1300 888 529
People who are Deaf or hard of hearing use the national relay service to contact us call: 133 677.

People with speech impairments use the national relay service speak and listen service 1300 555 727.
131 450 Telephone Interpreter Service
www.lawaccess.nsw.gov.au
You might also call LawAccess NSW which is a free government telephone service that provides legal information, advice and referrals for people who have a legal problem in NSW.

Legal Aid NSW provides free legal advice and in some cases can provide ongoing assistance. To locate the closest office call LawAccess NSW or visit the Legal Aid Commission’s website www.legalaid.nsw.gov.au

Your local Community Legal Centre (CLC) may also provide free advice. A directory of CLCs is available from the National Association of CLCs by phoning (02) 9264 9595 or at its website: www.naclc.org.au

Advance Care Directives Association Inc.
Ph: 0423 157 003
The Advance Care Directives Association Inc. Publishes a book called My health, my future, my choice, which is available at a cost on their website at:
www.advancecaredirectives.org.au by clicking on the ‘Publications’ tab or by calling and asking for an order form.

Ageing, Disability and Home Care
Ph: (02) 8270 2000
People who are Deaf or hard of hearing use the national relay service to contact us call: 133 677.

People with speech impairments use the national relay service speak and listen service 1300 555 727.
www.adhc.nsw.gov.au
Ageing, Disability and Home Care (ADHC) has a Planning ahead kit with information on advance care directives. You can contact ADHC for a kit. ADHC has also developed a planning ahead kit for members of Aboriginal and Torres Strait Islander communities called Taking care of business. Contact ADHC for a copy.


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25 This information comes from the NSW Health policy Using advance care directives published in 2005.
27 A ‘person responsible’ can be:
• the person’s guardian (if appointed to make medical and dental decisions).  If there is no guardian, then
• the spouse of the person
• a person who has the unpaid care of the person
• a close friend or relative of the person (in this order).
26 & 28 Multicultural NSW has information about interpreters on their website: www.crc.nsw.gov.au/ , select ‘Services’, click on ‘Interpreting and translation’ and ‘Fact sheets’. Or call on 1300 651 500.