Is it time to have some difficult and important conversations?

When the person you are caring for has a chronic or life-limiting illness, it is important to have some difficult conversations. Many people avoid having these conversations. However, talking about your values and wishes for future medical treatment can help you both. 

Everyone should consider advance care planning, regardless of age or health. Ideally, you should start planning when you’re healthy before there is an urgent need for a plan. 

Who would make medical decisions if the person can’t speak for themselves?

A person can appoint a Substitute Decision-Maker. A substitute decision-maker makes decisions for someone who has no decision-making capacity.

Depending on your state or territory, this might be known as an enduring guardian, power of attorney, or medical treatment decision-maker. States and territories have different legislation and considerations for appointing a substitute decision-maker.

Do I have to accept the role of Substitute Decision-Maker?

It can be challenging to make decisions for someone else. You may feel uncertain, particularly if their preferences are unclear or other people do not agree with the decision. Consider whether you feel comfortable with the person’s medical treatment preferences and values. If you do not feel you can carry out their wishes, you can ask them to appoint someone else. 

As a carer, you may be asked to be a Substitute Decision-Maker and it is important to know what this involves and what to consider before agreeing to take on this role. More information on being a Substitute Decision-Maker is available from Advance Care Planning Australia, which includes state and territory differences and processes. 

 

 

Starting the conversation

Advance care planning is an ongoing conversation – it should not happen only once. Everyone’s values and goals change; what they consider acceptable outcomes might change, so they might want to update their plan. As a carer, there are many resources available to support you in starting these conversations or thinking about these issues for yourself. 

Uploading an advance care planning documents to a My Health Record 

Advance care planning information must be available to health professionals. You can share this information in the My Health Record where it will be available to healthcare providers at the time and place it is needed. 

The names and contact details of the people who have access to advance care planning documents can be added to a My Health Record, and doctors will be able to contact them should the need arise. This is particularly important as a carer. Your details can be added to the My Health Record for the person you care for as an emergency contact.

It is important as a carer to talk to the person you care for about becoming a nominated representative for their My Health Record. This will allow you to have access to the record to view or help manage it, in accordance with the persons preferences. For more information on nominated representatives, visit the Australian Digital Health Agency website here 

Advance Care Planning frequently-asked questions

Advance Care Planning and My Health Record for Carers

See the webinar collaboration between Carers Australia, Advance Care Planning Australia, and Australian Digital Health Agency, the webinar features an expert panel including Advance Care Planning Australia Community Ambassador and carer Jenny Dexter along with Carers Australia National Director of Programs Jane Bacot-Kilpatrick, Advance Care Planning Australia National Manager Samantha McCLoy and Australian Digital Health Agency Education Manager Kate Ellis.

Learn how you can upload advance care planning documents to My Health Record or get support to upload them. This will enable documents to be accessed when they’re needed most.

 

Advance care planning is for everyone 

As a carer, you may have experienced the challenges of making health care or lifestyle decisions for someone else. Even if the person you care for cannot engage in these difficult and important conversations, you can still have them with family and friends about your own future care. These conversations can help you decide who is the best person to appoint as your own Substitute Decision-Maker.

Look after yourself 

Thinking and talking about the person you care for if they cannot make health care decisions or considering your own plans can be distressing. Some people need time to think before they talk about their choices. Don’t press them – wait for another time when they may be more willing or encourage them to speak to their doctor.  

This information can be upsetting; call the Carer Gateway on 1800 422 737 for carer support and counselling. 

Useful links and other information