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When you realise that the person you are caring for is likely to die from their illness at some point in the future, it is important to consider having some difficult and important conversations. It may feel easier to avoid these conversations. However, talking about what care they would want at the end of life can help you both.
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Conversations can also have legal implications that are important to understand for the person and for you as the carer. It is never too early to sort out the legal arrangements you will need to make sure a person’s wishes can be respected. Remember that the laws relating to these decisions can vary depending on which state you live in.
Thinking about the following can help guide your conversation.
Advance care planning is a discussion which explores the person’s preferences for their end of life if they become unable to communicate and make decisions for themselves.
An Advance Care Directive is a legal documented instruction of the person’s preferences for their end of life if they become unable to communicate and make decisions for themselves.
As part of the above processes, you may want to discuss whether they would choose treatments to prolong life or choose treatments that focus on their comfort only. Some examples of treatments which prolong life include CPR or resuscitation, tube feeding, artificial ventilation, or kidney dialysis.
You and the person you are caring for may wish to speak about treatment options with other family members, a general practitioner or main treating specialist.
Some good conversation starters include:
Most people will also appoint a Substitute Decision-Maker, depending on your state or territory this might been known as an enduring guardian, attorney, or medical treatment decision maker. A Substitute Decision-Maker is the person nominated to make decisions on their behalf if they cannot communicate for themselves – that is they have lost capacity to do so. As the primary carer, you may be nominated as the Substitute Decision Maker.
The ways to be legally appointed as a Substitute Decision-Maker include:
If you are nominated as the Substitute Decision Maker, you can lawfully make decisions on a person’s behalf about:
It is going to be easier to make decisions for the person you are caring for, if you understand what is important to them and what their preferences for treatment are.
At times it can be challenging to make decisions for someone else. You may find that you are uncertain about making some decisions, particularly if their preferences are unclear. You may have questions about a treatment and may need to talk to different health professionals before making a decision.
You should be making the decision the person would make if they could do so, even if other people do not agree with that decision.
Consider whether you feel comfortable with the person’s end-of-life preferences and values. If you do not feel like you can carry out their wishes (due to your own values or beliefs) it is best to tell the person and get them to appoint someone else.
Other important conversations you may like to consider are:
Advance Care Planning Australia has all the information and forms that you need to do an Advance Care Directive or be a Substitute Decision Maker, including links to State based information (www.advancecareplanning.org.au or call 1300 208 582).