Family and carer rights

It is important that you are aware of your rights and options as a family member or carer. These include:

  • accessing information to assist you
  • accessing palliative care support and advice
  • respite – taking a break from caring
  • saying ‘no’ to things you are not comfortable doing
  • deciding that you can’t continue with your caring role
  • making a formal complaint about unsatisfactory services. 

Making health decisions on behalf of someone else as a carer

In Australia, the law recognises a person's right to control their own lives. People are presumed to have the capacity to make decisions for themselves unless proven otherwise.

However, sometimes people may need support from a family member or carer about decisions they need to make. As a family member or carer, you could be involved in this process. In some circumstances, you may be responsible for making decisions on behalf of another person. This may include important decisions about the person’s healthcare.

Who is a substitute decision-maker?

A substitute decision-maker is a person legally permitted to make important decisions on behalf of someone who does not have capacity. The decisions can be about health matters or financial matters. You can be a family member, carer and a legally appointed substitute decision-maker simultaneously.

A substitute decision-maker can be appointed formally through:

  1. An order of the Queensland Civil and Administrative Tribunal
  2. An enduring power of attorney
  3. An advance health directive

Find out more about substitute decision-makers.

Difference between a carer and substitute-decision maker

In legal terms, there is a difference between a carer and an appointed substitute decision-maker. The difference depends upon whether you are formally appointed as a substitute decision-maker.

If the person in your care has made an enduring power of attorney (for health matters) or an advance health directive appointing you as their health attorney, that is considered a formal appointment.

In this case you would become the legally-appointed substitute decision-maker as well as the person’s carer and/or family member.

Statutory health attorney

If there is no formal paperwork, you may be what is called a statutory health attorney for the person you are caring for.  Although not formally appointed, statutory health attorneys are considered substitute decision-makers and must be both readily available and culturally appropriate.

Statutory health attorneys can be, listed in order of priority:

  1.  A spouse if the relationship is close and continuing; if not, then
  2.  A person over 18  who is not a paid carer; if not, then
  3.  A person who is 18 years or more and who is a close friend or relation of the adult and is not a paid carer

Usually, you will know in advance if you are going to be a substitute decision-maker for your loved one.

Remember, you can only act as the person’s substitute decision-maker should they lose capacity.

Making health decisions for the person in my care

If you need to make decisions about medical treatment for the person in your care, the healthcare team will ask you about what may be important to him/her. They will also discuss options about available treatments. It is your right as a carer to ask as many questions about the medical treatment being proposed as you need to make an informed decision.

Decision-making at the end of life

Decision-making on behalf of someone at the end of life who has lost capacity is a very emotionally-charged time. Often, decisions will be difficult and you may not have had prior experience with these matters. The healthcare team can provide support at the time you are required to make decisions.

Decisions you make on behalf of the person you care for must be made in their best interests. As far as possible, you should take into account any views they have expressed to you previously. Any decisions you make on behalf of the person should preserve their dignity and not impose any unnecessary restrictions on them.

Unless it is an emergency situation and a decision is required immediately, you will be given time by the healthcare team to consider the information given to you. You are also required to consult with others who may also have substitute decision-making status, if relevant.

Information for people appointed as an enduring power or attorney