National Advance Care Planning Week is a good reminder that the most important conversation many of us will ever have is also one of the easiest to put off.
Most people have some sense of how they would want to be cared for if they became seriously unwell. They know whether they would want every possible medical intervention, or whether comfort and dignity would matter more to them than life prolonged at any cost. Many people also know who they would trust to make decisions on their behalf if they were unable to speak for themselves. They just haven’t said any of it out loud.
When a health crisis arrives unexpectedly, the people closest to us can be left trying to make decisions without knowing what the person at the centre of the situation would want. Families may be asked difficult questions by doctors in stressful circumstances and unfamiliar environments. Without prior conversations, decisions often have to be made under pressure.
It is one of the most distressing situations a family can face, and advance care planning exists to prevent it.
What is advance care planning?
Advance care planning, often shortened to ACP, is a process that helps people think through their values and preferences for future health care, and then communicate those preferences with people you trust. It involves personal reflection, conversations with family or friends, and sometimes recording those wishes in a formal document, which we highly recommend.
It is helpful to understand the difference between two related terms. Advance care planning refers to the overall process of reflection and conversation. An advance care directive (ACD) is one possible outcome of that process. It is the document that records your preferences for future health care.
The directive can guide doctors and substitute decision makers if serious illness or an emergency makes it impossible for someone to speak for themselves. However, the document is only one part of the process. The conversations that happen beforehand are equally important. When people have openly discussed their values and preferences, those around them are far better prepared to honour those wishes when it matters most.
Advance care planning can also open broader questions about life, wellbeing, and care. It not only relates to emergency situations; it relates to long-term care and a variety of other health situations that may arise, such as the diagnosis of a chronic illness, terminal disease, or advancing in age and needing long-term care.
It invites people to think about what a meaningful life looks like for them, what experiences feel essential, and what kinds of care they would want if their health changed significantly. These are thoughtful and often deeply meaningful conversations, not simply administrative tasks.
The conversation is not only for later in life
Many people assume advance care planning is something to think about later in life, or only when a serious diagnosis has occurred. In reality, health can change at any age, and accidents or sudden illness do not arrive at convenient moments. Having a plan in place helps ensure a person’s voice remains present in decisions about their care, regardless of when circumstances change.
Starting the process earlier also removes the urgency that often surrounds these discussions. People have time to reflect, revisit the conversation more than once, and make sure those they trust genuinely understand what matters to them.
Why the process can feel confusing
While the idea of advance care planning is simple, the practical steps can sometimes feel complicated.
In Australia, the laws and forms that govern advance care directives are determined by each state and territory. This means the names of documents, the witnessing requirements, and the legal status of different forms vary across jurisdictions.
Some states rely on specific statutory forms, while others also recognise directives created under common law. In some places a doctor must sign the document, while in others medical involvement is recommended but not required. Because the rules differ, it is important to use the forms and guidance that apply in your own state or territory.
For many people, this patchwork of legal frameworks can feel confusing. This is one reason it is helpful to think of advance care planning primarily as a process rather than a form to complete. The process begins with conversation and reflection, not paperwork.
Starting the conversation
Beginning does not require a formal meeting, a long discussion, or anything written down. It can start with a simple question:
- What would matter most to you if your health changed significantly?
- What would feel like a good quality of life, and what wouldn’t?
- Who do you trust to speak for you if you couldn’t speak for yourself and what would you want them to say?
Sharing these reflections with someone you trust can open the door to deeper conversation. Many people find that once they begin, the discussion feels less heavy than they expected. Family members often feel relieved rather than burdened. Knowing what someone wants removes the burden of guessing.
For more, see our blog on how to start a conversation about end of life.
How an end of life doula can help
For some people, the combination of emotional difficulty and practical complexity is enough to stop the process before it starts. This is where an end of life doula can make a genuine difference.
End of life doulas are trained to support individuals and families as they think about and prepare for the later stages of life. They are not medical professionals or legal advisers, and they do not replace either. What they offer is something different: a calm, knowledgeable presence that helps people find their way through conversations that matter deeply.
A doula can help you clarify your own values before you try to articulate them to others. They can support conversations between family members when those conversations feel fraught. They understand the patchwork of state-based laws and forms well enough to help you navigate them without feeling overwhelmed, and they can help you prepare to have a productive conversation with your doctor or specialist.
In short, an end of life doula can help you move from knowing you should do this to actually doing it, in a way that feels considered rather than rushed.
One conversation can make all the difference
Advance care planning is not about predicting every possible situation. It is about making sure the people around you understand your values and preferences well enough to honour them, even in circumstances none of you can foresee.
National Advance Care Planning Week offers a meaningful opportunity to start this conversation. You might begin with a conversation over the kitchen table, or you might reach out to an end of life doula who can help you approach the process with greater clarity and confidence.
Either way, the best time to have this conversation is before you need to. And the best place to start is wherever you are.