Supporting substitute decision makers

Due to illness, injury or a disease like dementia, some people will lose the ability to make decisions for themselves.

Knowing when a person has lost capacity to make a decision is not always clear. Some people may be able to make some decisions but not others. Making decisions for oneself is a basic human right and health and aged care professionals have a responsibility to include people in decision making and provide assistance to maximise capacity as far as possible.

What is decision making capacity

Capacity is assumed under law unless there is evidence to the contrary.

Decision making capacity refers to their ability to:

  • Understand information that may be relevant to the decision, including the consequences;
  • Retain such information, even for a short time;
  • Use the information to make decisions; and
  • Communicate the decision (in any way).

A person’s decision making ability can vary at different times of the day and be influenced by the environment. Environmental factors may include;

  • time of the day
  • location
  • noise and disruptions
  • a sense of being rushed, or overwhelmed, with too much information at one time

Capacity may also be affected by medication, infection and psychological factors like anxiety.

If there is a need to assess capacity for legal reasons, an assessment of decision making capacity may be undertaken by a medical practitioner.

How to support a person to make their own decisions

A person may have the ability to make some decisions (such as what clothes to buy) but not others (like how they should invest their retirement savings).

Encouraging the person to make those decisions they are able to helps them maintain dignity and self esteem.

To maximise the ability of the person to understand and make a decision either independently or with support you need to consider how you present the information:

  • Consider who would be the best person to talk with the person making the decision. This could be a combination of a professional, the substitute decision-maker (if one is appointed), a trusted relative or friend of the person.
  • Keep the information only to what is needed.
  • Take time to explain the relevant information that might help the person to make the decision, and be willing to repeat the information if required.
  • Describe any foreseeable risks and benefits in practical terms.
  • If there are options, give the information about the choices in a clear and balanced way.

How to support communication

To assist the person to be able to communicate their preferences

  • Consider the best time to communicate with the person (e.g. are there times of the day when the person is more alert?).
  • Be prepared to have more than one discussion with the person about the decision that has to be made.
  • If the person has hearing difficulties ensure that appropriate aids are used.
  • Consider whether the person requires an interpreter.
  • Use simple language – avoid jargon or complex medical terms.
  • If appropriate, use photos or pictures and objects to communicate with the person.
  • If you are aware of the person’s past (e.g. occupation or interests) you may be able to refer to examples which help them to understand.
  • Speak at an appropriate speed and volume, and be careful of tone of voice.
  • Ask one question at a time and wait for a response before continuing.
  • Be aware of cultural and religious factors which might influence the person’s way of thinking, communication and behaving.

What to do when the person can’t decide for themselves?

If the person is unable to understand the decision and its consequences or communicate their preferences you may need to speak to the person’s substitute decision maker.

Substitute Decision Makers

While the general principles underlying legal appointment of a substitute decision-maker for health and personal care are similar across Australia, the terms used, regulations and witnesses required vary among the states and territories. For clarity the term ’substitute decision maker’ is used here.

In most states there is a hierarchy of who should make a decision if an individual cannot make it themselves.

For health and lifestyle or personal decisions, if there is a legally appointed substitute decision maker e.g. enduring guardian (enduring power of attorney - personal/health care ACT, Qld, Vic) or a guardian appointed by a tribunal then this person is the one who should make the decision. 

A person may also have nominated who they want to be their substitute decision maker in an advance care plan or advance care directive, and this person(s) would be the next to make the decision. If there has been no previous arrangements put in place, then each state/territory has an order of the person to make a decision and this is not necessarily next of kin. 

The Planning Tools section of this website contains more information

Consider any written or spoken wishes of the person

The person may have written down or spoken about their wishes for lifestyle, social, financial and health care decisions. They may have an advance care plan or advance care directive outlining the care they do, or do not, want to receive. It is important that these wishes and documents be considered when relevant decisions are made on their behalf.

Making the decision the person would have made

If you have to make a decision for another person, the best way to approach this is to try to make the decision they would have made if they had been able to. It means “standing in the shoes” of the person – seeing the choices to be made from their perspective. It means using your knowledge of the person and their wishes, as well as any planning documentation they have completed.

What you can do

Speak with the individual about any decision that affects them. If you are unsure whether they can make decisions independently, you may need to assess their capacity to make health and personal care decisions or refer for assessment of decision making capacity by a medical practitioner.

Assist individuals to make their own decisions.

Provide information and support to care partners to assist them in their role as a substitute decision maker.

Developing workplace systems to promote advance care planning