Practice considerations

Finding a person’s advance care planning documents

It’s important to ask a person if they have advance care planning documents when you begin their care. This may include an advance care directive and/or documented appointment of a substitute decision maker. If they don’t have existing documents but do have capacity to make them, you can start a conversation about whether they’d like to do so.

If it’s not possible to ask the person about existing documents, there are other things you can try.

1. Ask someone who knows them

A person’s family, support person or substitute decision-maker may have their advance care planning documents.

2. Check My Health Record

All health professionals with an AHPRA registration can use My Health Record.

3. Check state and territory repositories

• ACT – MyDHR, Canberra Health Services
• Northern Territory – Public Trustee of the NT
• Queensland – The Viewer also known as The ACP Tracker
• Tasmania – Tasmanian Civil and Administrative Tribunal

4. Check their medical records

Ask other health care providers if they have any advance care planning documents for the person. You can also check for any records of conversations that show or support their values and preferences for care. Check other places such as:

• GPs or specialists they’ve seen
• hospital records
• aged care or disability service providers
• prison health records in your state or territory.

5. If you can’t find advance care planning documents

If you can’t find any advance care directive or planning documents for a person and they don’t have decision-making capacity, it’s important to identify their substitute decision-maker.

Understanding decision-making capacity

Assessing decision-making capacity is a critical part of advance care planning. It ensures that adults can legally make informed choices about their future healthcare and provide consent. Learn more about decision-making capacity and what it means in the context of advance care planning.

Key points about decision-making capacity

• To complete legally binding documents, a person must have ‘decision-making capacity’
• An adult is presumed to have decision-making capacity unless there is evidence to the contrary
• Advance care planning is enacted at the time when a person has impaired capacity and a healthcare decision needs to be

In the state or territory where you practice, you should consider:

• how decision-making capacity is defined
• how decision-making capacity is determined
• when consent to treatment is and isn’t required.

Read more about on decision-making capacity and consent to medical treatment in your state or territory on the QUT End of Life Law in Australia website.

Reviewing and considering advance care planning documents

Health and aged care professionals are obliged to review and consider any advance care planning documents a person without decision-making capacity may have. Not all advance care planning documents include specific instructions. Some set out more general wishes and preferences about future care and treatment. Even where there are specific instructions, to be considered legally binding, they must be valid and applicable to the circumstances.

What makes an advance care directive valid?

An advance care directive is usually valid if, at the time it was created, the person making it:

• was over 18
• had decision-making capacity and was able to consent to medical treatment
• understood what an advance care directive is
• made it voluntarily.

A written directive must:

• be completed in English
• include certain details like name, date of birth and address
• contain written health care or medical treatment directives
• meet specific signing and witnessing requirements, dependent on the state or territory document.

In some states, oral directives (ACT and TAS) and video recordings (TAS) are valid advance care directives if certain people witness them. Common law directives don’t need to be signed, dated or witnessed in a document to be valid. Learn more about common law advance care directives on the QUT End of Life Laws in Australia website.

Read more about on formal advance care planning documents in each state or territory.

What is legally binding within an advance care directive?

Not everything in an advance care directive is legally binding. There are limited circumstances where instructions in an advance care directive don’t need to be followed. These differ in each state and territory. Read more about legally binding documents.

Values and preferences statements in an advance care directive aren’t legally binding, but they must be taken into account by substitute decision makers in making decisions on behalf of a person.

Learn more about state and territory laws on the QUT End of Life Laws in Australia website.

The decisions or instructions in an advance care directive may carry more weight if:

• they’re consistent with the person’s written values and preferences, or with decisions they talked about in the past
• the person’s substitute decision-maker has a clear understanding of their preferences and is willing to be a strong advocate for them
• the directive is in a written document, that uses clear and specific language
• there’s evidence the person had decision-making capacity and was willing when they signed or dated the written document, or a witness can support this
• the person made the directive recently or included information about a current condition.

You may be presented with advance care planning documents from another state or territory. It’s best to seek legal advice about the document, and whether it’s legally binding in the jurisdiction where care is being delivered.

Considerations when identifying the substitute decision-maker/s

A specific instruction can be used to make treatment decisions if it’s:

• documented in an advance care directive
• valid and relevant to the clinical circumstance.

It’s good clinical practice to discuss this with the substitute decision-maker, but they don’t need to make a decision in this case. Often specific instructions within an advance care directive aren’t available for every clinical eventuality. A substitute decision-maker for healthcare decisions is the person legally appointed or identified who can make treatment decisions and provide consent.

Appointing a substitute decision-maker is a formal legal process. Every state and territory has its own form for a person to appoint a substitute decision-maker. In some states and territories, it’s included in the advance care directive document.

If a person hasn’t appointed a substitute decision-maker and no longer has decision-making capacity, one can be identified using a legislated hierarchy within each state and territory. A substitute decision-maker can also be appointed by a court or tribunal.

When identifying the substitute decision-maker for health decisions:

• confirm the validity of the document appointing them, which will have specific signing and witnessing requirements
• review the powers of the substitute decision maker – this may include financial, health and/or personal depending on the appointment and state and territory you’re in
• review any instructions provided by the person and rules outlining how a substitute decision-maker should act.

Rules about how a substitute decision-maker should act can include whether there’s a sole decision maker, multiple decision-makers working together or separately, and their responsibilities.

You should review your state and territory legislation and any relevant clinical guidelines. Learn more about state and territory laws on the QUT End of Life Laws in Australia website.

Working with substitute decision-makers

The role of a substitute decision-maker is often challenging, especially when they must make critical treatment or end-of-life decisions for a person they care about. Adopt a sensitive, supportive, and non-judgemental approach when working with substitute decision-makers. Have empathy and patience, and help them understand and fulfil their role.

Work with the substitute decision-maker/s using a collaborative approach to support them to:

• understand their role
• understand any legal obligations and limits to guide how they act
• understand any specific instructions that a person has recorded and if they’re valid and applicable to a circumstance
• advocate for the person while considering any values and preferences that have been discussed or recorded.