What is an advance care plan?

An advance care plan details your future wishes for your health, care and other personal preferences, particularly for the end of your life. It should include a legal document called an Advance Care Directive (AD) or ‘living will’, which formalises your health care wishes. This is particularly important if you’re unable to speak for or make decisions for yourself.  Click here for ideas on how to create an Advance Care Plan for a loved one living with dementia.

An advance care plan will often also have information about your goals and values for care, and this can help family members, or an appointed decision maker, make decisions in a wider range of situations.

The more detailed the plan, the easier it is for loved ones to ensure you are advocated for in the way you would want to be, that your wishes are respected and your final moments are as meaningful as possible for you and your loved ones.

Forms and requirements for creating an advanced care directive vary depending on the state or territory you live in.

Click here to access the relevant forms.

Starting the conversation

Although death is a part of life, talking about it openly can be confronting, emotional and scary. But it’s an important conversation to have, particularly as we get older, or if we’re living with a serious illness.

Jan Hatch, a guide with support group Violet, says while starting the conversation might be difficult, talking openly about death and creating an advance care plan can provide a lot of comfort to the person and their loved ones. “The not talking about it can potentially lead to a lot of distress, confusion and upset if someone is faced with the situation where a loved one is dying,” says Jan.

“It also can create not just confusion for an individual, but also for the whole range of people who are surrounding the person who is coming to the end of their life.”

Jan stresses the conversation is particularly important before a person is in a situation where they are facing a terminal diagnosis or is actively dying. “Although people consider this to be a challenging topic in general, it’s much more challenging when the rubber hits the road and you have to do something and you have to do it quickly.”

Jan says the conversation will be very different depending on your relationship with the person and where they are in their lives.

Jan suggests:

• Picking a time when you’re relaxed and have the time and space to talk.
• Do some research beforehand and have some ideas to help guide the conversation.
• You might want to rehearse what you want to say or how you want to say it with someone else to get yourself comfortable with the words you’re going to use and the things you’re going to say in advance.
• If you are a religious or spiritual person consider talking to others in your religious environment who might be able to guide you or give you some ideas.
• You don’t need to do it all in one session, you might want to state the conversation, see how far you get and come back to it.
• Some documentation is really complicated and medically based so it’s a good idea to find something that suits the individual and what makes sense to them.

Violet has some great resources on how to start having a conversation about death and dying.

Advance Care Planning Australia also has some useful conversation starters.

What should you include in an advance care plan?

According to support group Violet, an Advance Care Plan should detail whether you want to be cared for at home, in a hospital, hospice or Aged Care home, remembering that this may change depending on the stage of life you are at. It’s also important to think about pain management and provide guidance on the level of medical intervention you want.

Jan says you should also consider how you would like your loved ones to help ensure your final moments are as meaningful as possible. “It’s not just about whether you want a tube stuck up your nose or not it’s really how do you want those last days and weeks to be,” says Jan. “And that can help your loved ones figure out how to do that for you.”

“You might want to put in your notes how you want to be treated, who you want to see, how often you want visitors, and whether you want to have a lively active time around you or whether you’d prefer the quiet.”

Keep the conversation going

While creating an end of life plan or directive is important, Jan says it’s also vital to communicate your wishes with those you love.

“If you’ve chosen a guardian, it’s a good idea to tell everyone close to you who that guardian is and why you chose them,” she says.

While starting a conversation about death is the first step, it’s important to have an ongoing, open dialogue about your wishes.

“In my view it’s not something you do, put in a draw and forget about,” says Jan. “It’s something to have in the back of your mind all the time because things change, relationships change and friends in your life change so you do need to think about what you want now as opposed to what you wanted three years ago.”

This article is originally published as “How to create an advance care plan” from Bupa Blue Room