Sometimes you may need to be involved in advance care planning for a family member or friend who is no longer able to make medical decisions. You may have been legally appointed to be their substitute decision-maker.
Depending on the state or territory, a substitute decision-maker may be called:
- an enduring guardian
- an attorney
- an agent
- a person responsible
- a decision-maker
Support person versus substitute decision-maker
A support person is someone who helps a person with reduced capacity make decisions. A substitute decision-maker makes decisions for someone who has no decision-making capacity.
How you can be appointed
You may be appointed as a substitute decision-maker in one of three ways:
- chosen by the person
- assigned to the person by the law in the absence of an appointed substitute decision-maker
- appointed for the person (e.g. a guardian appointed by a guardianship tribunal)
States and territories have different legislation and considerations for appointing a substitute decision-maker. Some may allow for more than one substitute decision-maker. They may be:
- spouse or de facto spouse
- unpaid carer
- nearest relative or friend who has a close personal relationship with the person
Learn more about the legislation in your state or territory.
What to consider before agreeing
If someone asks you to be their substitute decision-maker, think about what it might mean for you before you agree.
Ideally, you need to be:
- available (live in the same city or region) or readily contactable
- over the age of 18
- prepared to advocate and make decisions clearly and confidently on the person’s behalf when talking to doctors, other health professionals and family members
- comfortable with encouraging the person to talk through their preferences with you, their family members and close friends
The person who chooses you may also choose a second person (an alternate substitute decision-maker). They will be called on if you are unable to make decisions on the person’s behalf or you are both jointly appointed.
Your role as a substitute decision-maker
As a substitute decision-maker, you have some important responsibilities. These may include:
- speaking with the person about their values and preferences for health care
- encouraging them to create an advance care directive
- making important decisions on their behalf if they are ever unable to communicate
Speak with them
As a substitute decision-maker, it’s important for you to understand the values, beliefs, acceptable outcomes and health care preferences of the person who has appointed you.
The best way for you to understand these things is by talking with them. Don’t be afraid to raise the subject. To help you, we’ve created some suggestions for how to start the conversation.
Make sure you understand and respect their approach to health care, living well and end-of-life decisions.
If you and the person have conflicting beliefs, be honest with them. Remember that you may be called upon to advocate for them. If your beliefs are too different, it may be better for them to choose someone else.
Talk about any potential issues that may arise with family members or partners who have different views. How will you cope with any disagreement that could arise? If you are chosen as a substitute decision-maker, do they know?
Encourage them to create an advance care directive
Encourage the person to document their values and health care preferences. The documents and process for doing this are different in each state and territory. You can help them by learning about the process in their state or territory.
Ask for a copy of their documents and keep them safe. The documents should contain information about their values and preferences. Familiarise yourself with these and ask them to explain anything that isn’t clear. This information will help you as a substitute decision-maker to decide on what they would want.
The documents should also include your name and contact details and the details of any other substitute decision-makers.
Encourage them to review their plan every year or if there is a change in their health or personal situation.
Making decisions on their behalf
As a substitute decision-maker, you might have to make important medical decisions for a family member or friend who is no longer able to make decisions for themselves. If you are in a situation needing to do this, ask doctors, nurses and care workers for health care information about the person.
The best way to approach this is to try to make the decision the person themselves would have made if they had been able to. This means ‘standing in the shoes’ of the person and seeing the choice to be made from the perspective they would have had.
A substitute decision-maker should understand the various treatments that are available. It’s particularly important to understand various life-prolonging treatment options.
It is important to consider whether a person could make their own decision if they had additional support. Even if the person cannot make the decision themselves, you may be able to get some information from them about their preferences.
Family members and friends can still let doctors know what sort of treatments and care they believe the person would want. This advice is based on what you know about the person and what they have said to you. Health professionals can also assist with assessing and supporting a person to make the required decision.
Consider any written or spoken preferences
If they have documented their preferences into a formal plan, these preferences must be respected when relevant decisions are made on their behalf.
A person’s preferences may directly relate to specific medical interventions or they may be more general relating to their values, what’s important to them and their goals for care.
Preferences may not have been written down but have been expressed through conversations. Speak with friends, family members or the person’s GP to see if the person expressed anything relevant previously.
Consider what’s important to them
Consider the cultural, spiritual, religious and other preferences of the person. These might influence what care is wanted.
If there are no written preferences, consider how the person lived their life and how they made decisions in the past. What things are important for them to live well?
Consider the likely outcomes and whether the person would want, or tolerate, these outcomes.
You should refuse health care that is likely to result in outcomes that the person wanted to avoid. Remember that you are trying to make the decision the person would have made, not the decision you want or would make for yourself in the same situation.
Making a decision about living arrangements
You may be required to make decisions about living arrangements for the person. These decisions may depend on the availability of family or a carer.
The abilities and personal circumstances of those providing care must be considered. For example, while most people would prefer to remain at home rather than entering residential care, they may also put a high value on their family and would not wish to cause ‘burn-out’ or impose an extended duty of care on those they love.
If possible, follow the person’s written or spoken preferences. Discuss with family members and others. Consider costs linked to decisions – you may need to speak to the financial decision-maker. Choose the option that gives the most independence but still provides care and maximises wellbeing.