Advance care planning for people who can’t make their own decisions

Including people in decisions

Everyone is presumed to have capacity to make decisions about their own health care. If a person has impaired decision-making capacity they should still be included, where possible, in any decision-making. The person should always be central in advance care planning conversations and be given opportunities to express their wishes and preferences.

A person may have capacity to express preferences about some things, like their preferred place of care, but not make decisions about others, like whether to have chemotherapy.

Remember, advance care planning is an ongoing process which is not just about specific medical treatments or legally binding instructions. It also includes wishes and preferences about things like where to be cared for, or what brings comfort.

Find out more about decision-making capacity.

Supported decision-making

People may be able to make some decisions with support from a family member, friend or health care professional. This is called supported decision-making. Every effort should be made to include a person in decisions, with substitute decision-making as a last resort.

Find out more about being a substitute decision maker.

A supported decision-making approach should be used as far as practical to enable the person to participate in advance care planning to the full extent that they are able.

Supported decision-making is tailored to the person’s specific needs and circumstances, but may include:

• getting to know the person well and building trust
• understanding their specific needs for decision-making
• identifying preferred methods of receiving information, including simple language and visual aids
• understanding preferred methods to communicate their wishes to others, including gestures or other non-verbal means, sign language, communication boards, or assistive technologies
• identifying the best time and place to assist the person in working through decisions:
  • using a calm and familiar environment
  • allowing extra time
  • including trusted supporters
  • choosing a time of day that is best for the person
• collecting relevant information in advance including knowing who their other supporters are
• presenting options in a balanced way, simplifying where suitable, and explaining things several times if needed
• drawing on strengths of cognitive functions they do have, such as reading and long-term memory.

Options for documentation

The options for a person with impaired decision-making to complete advance care planning documentation are more limited. They aren’t able to complete legally-binding documents such as advance care directives, and they can’t legally appoint a substitute decision-maker. Other people can’t complete these documents on their behalf either.

There is no requirement to have written advance care planning documents. If there's no document, decision-makers should make decisions based on their understanding of what the person would want.

Read more about being a substitute decision-maker.

Sometimes, a person doesn’t have capacity to complete an advance care directive, but there is still a desire to create some kind of written document. This might be to support understanding by different services involved in a person’s care, such as aged care or disability support services.

There are some alternative documents which can be used in these circumstances, but they do not carry the same weight as formal advance care planning documents prepared by the person themselves. It's very important to make a clear distinction between a document that was prepared by the person themselves, and a document that has been prepared by someone else.

A substitute decision-maker can record what is known about a person’s wishes and preferences. This document can help substitute decision-makers and clinicians make decisions that align with the person’s values and what is important to them.  Some states and territories (ACT, Queensland, and Victoria) have specific forms for this purpose. ACPA has also created a form which can be used in other places to capture this information.

Read about how to record your choices in your state or territory.