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.
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:
There are two points at which a person’s capacity might be assessed when dealing with an advance care directive.
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.
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
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
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:
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:
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.
Remember, when assessing whether a person has the capacity to make an advance care directive, it is important that you:
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.
Similar questions to those above should be asked if the person wants to change or cancel an advance care directive. Also ask:
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
Advance Care Directives Association Inc
Ageing, Disability and Home Care (ADHC)
Law Society of NSW
Legal Aid NSW
Community Legal Centre (CLC)
The Benevolent Society
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:
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
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:
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?
Remember, when assessing whether a person has the capacity to make medical or dental decisions, it is important you:
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.
‘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:
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.’
There may be a need to assess the capacity of a person to make other health decisions, such as whether to:
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.
Guardianship Division of NSW Civil & Administrative Tribunal
Mental Health Review Tribunal (MHRT)
NSW Public Guardian
Law Society of NSW
The Benevolent Society
Legal Aid NSW
Community Legal Centre (CLC)
NSW Civil & Administrative Tribunal
Guardianship DivisionPhone: (02) 9556 7600Toll free: 1800 463 928People 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.auYou 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 511Ph: (02) 9816 5955www.mhrt.nsw.gov.auWhen 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 GuardianToll free: 1800 451 510Ph: (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.auThe 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 HealthPh: (02) 9391 9000
People with speech impairments use the national relay service speak and listen service 1300 555 727.www.health.nsw.gov.auNSW 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:
Law Society of NSWPh: (02) 9926 0300Toll free: 1800 422 713www.lawsociety.com.auSolicitors 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 SocietyPh: (02) 9339 8000The 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 NSWPh: 1300 888 529People 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 Servicewww.lawaccess.nsw.gov.auYou 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
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:
Advance Care Directives Association Inc.Ph: 0423 157 003The 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 CarePh: (02) 8270 2000People 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.auAgeing, 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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