Making the plan
Calls to Advance Care Planning Australia's advisory service are often from people who have a family member who wants to do advance care planning but find the concept and process unclear - which is where the advisory service can help.
Helana Kelly is the manager of the advisory service. She has spoken with many people who have called the advisory service for help, including healthy people who wanted to begin the advance care planning process, people who have been recently diagnosed with a serious illness, and family members acting on behalf of parents or grandparents. Here, Helana describes a typical call for information about advance care planning.
Christie* called the phone line on behalf of her father, who had recently been diagnosed with early-onset dementia. Her dad had identified that he would like to do some advance care planning. He needed information relevant to his state, Victoria.
"I talked with Christie about her father's motivation for doing advance care planning, and why he felt it was an important thing for him to do. He had told Christie that he didn't want to be a burden on his children making what he thought would be very difficult decisions, and he wanted his own preferences to be respected," Helana says.
Christie noted that her father had appointed one of his children to be his decision-maker, but wanted to know what else he needed to do.
"I spoke to Christie for about 20 minutes, explaining the concept of advance care planning, and that by identifying a substitute decision-maker, her father had identified the person who he wanted to speak on his behalf if he couldn't communicate his preferences himself. The Advance Care Plan helps the substitute decision-maker know what decisions the person would want to be made," Helana says. She notes that, depending on the state/territory, more than one substitute decision-maker may be appointed.
She established with Christie that there had been a family discussion about advance care planning and that Christie's father was ready to make a written plan. Helana explained that the requirements for written Advance Care Directives vary from state to state (and territory) and so the next step was to understand the requirements of the specific state/territory.
"As a national service, we can link people to or send a form for the state that they are calling from. There is not necessarily a set form that people have to complete - it depends on the state or territory. But each state and territory government provides a form that people can use for advance care planning. Ideally, they will fill it out as part of a family discussion. And while the plan is being written, we really encourage the person to meet with their GP and discuss it in the context of their own health situation."
Once the plan is written, Helana says, it's important that copies of the plan are stored where they can be readily accessed.
"We provide advice about whether the Advance Care Directive should be stored and who needs to receive a copy. In this case the GP, the substitute decision-maker(s) and the specialist need to have a copy and we encourage people to also put a copy on MyHealthRecord.gov.au."
"The substitute decision-maker needs to keep a copy with all their other important documents. If the person making the plan has a local hospital they frequently go, we'd encourage them to leave a copy with the hospital to store their medical record."
As a final step, Helana explained to Christie that in Victoria, where her father lived, there is a statutory form where people can write their preferences and that doctors must follow.
"We're here to help explain and maybe simplify the process for people because it can seem quite overwhelming to some people", Helana says.
"One of the benefits of our advisory services is that we can explain the process for anyone in any state or territory in Australia. The legislation, forms an some of the terms are different between states and territories, but the principles are the same and we will speak using their terminology and in reference to the requirements of their own state or territory."
Helana also notes that the advisory service team have completed training, have up-to-date information available, and can direct people to the ACPA website hub or to eLearning modules for further information.
*Name has been changed.