We are often asked by people about what can be done to ensure their Advance Care Directive will be followed when it matters most. Unfortunately, there are no iron-clad guarantees, particularly when it comes to an emergency situation. There are however some simple steps you can follow to increase your odds and having your choices respected.
Here are some tips and recommendations to help fortify and future-proof your Advance Care Directive ACD.
1. It starts with what's important to you
Advance care planning starts with knowing yourself and what’s most important to you. Think about what a good day looks like to you – whether it’s being physically active, socialising with friends and family, eating or travel, these activities are a great starting point for articulating your values and making clear what makes life worth living.
2. Use the right forms
It is recommended that you use the official, legislated form for your advance care plan. These forms tend to be well structured and capture the required information to guide your family and medical treatment team in decision making, should you ever be unable to speak for yourself. Remember, advance care planning requirements differ across Australia, be sure to use the relevant forms for your state or territory.
3. Make it valid
If you are going to the effort of writing an ACD, it’s worth getting right. One of the reasons that ACDs might not be followed is because of the quality of the ACD. In some cases the written instructions are unclear, inconsistent or not an accurate reflection of a person’s preferences, rendering the documents unusable. In other cases, it might not contain adequate identification such as date of birth, be signed, dated and/or witnessed.
4. Be clear about your values
While forms for ACDs differ across Australia, most of them provide an opportunity to complete both values and instructional directives. The values directive helps others understand what is most important to you and what outcomes you would find intolerable (ie unable to speak, unable to live independently). The instructional directive specifies which medical treatments you would consent to, refuse or prefer to avoid (eg tube feeding, CPR etc).
While you are able to complete both the values and instructional directives, it is recommended that you accurately capture your values as this clarifies what’s important to you and provides critical information to guide others who are left to make decisions on your behalf.
It’s worth noting that the instructional directive part of the document relies on a good working knowledge of medical treatments. It can be challenging for individuals to fully understand the benefits and burdens of different treatments. You may prefer to complete this with the support of your treating team.
5. Speak up
Completing the forms is a great step in securing your future health care however there’s no substitute for good old-fashioned conversation. Be clear with your family and loved ones about your choices and help them understand the choices you’ve made. If they ever need to advocate on your behalf or make decisions for you, it will be easier for them to work with your medical treatment team and communicate your preferences.
6. Keep it up-to-date
Life changes and so do you. It’s important to review your ACP every few years. Major life events such as retirement, divorce, the onset of a significant illness or a change in your prognosis are good opportunities to dust off your plan and review it with fresh eyes.
7. Make it accessible
If you are going to go to the effort of writing your advance care directive it’s critical that you make it accessible. Your ACD is of little use to anyone if the only copy is locked away in your solicitor’s office.
Given that most ACDs are needed in an emergency situation or crisis, we recommend that you have your ACD readily available at home, and be sure to give copies to your GP, loved ones and local hospital. We also advise that you upload your ACD to My Health Record making it accessible, anywhere, anytime.