Advance Care Planning
Advance care planning is about making sure your wishes, values and priorities are understood and respected throughout your care. Planning ahead can support both you and your loved ones, including information about Advance Care Directives, decision-making, palliative care and what to expect if care shifts towards comfort and quality of life.
Overview
Thinking about future care, including end-of-life wishes, can feel daunting. Many people prefer to focus on treatment and the present, but making these plans does not mean giving up. Advance care planning can take place alongside active treatment. It’s about ensuring your values, preferences and priorities are clearly understood, so that if a time comes when you cannot speak for yourself, your care still reflects what matters most to you.
For many, planning ahead brings peace of mind. It reduces uncertainty, helps families feel supported in decision-making and gives doctors the guidance they need to care for you in line with your wishes.
What Advance Care Planning Covers
Advance care planning can cover both medical treatment and broader aspects of daily life.
These choices help your family, carers and healthcare professionals understand your wishes with clarity and confidence.
It may involve:
Advance Care Directives (ACD)
A legally recognised document that records your healthcare preferences. An ACD can outline treatments you would accept or decline, such as resuscitation, ventilation or artificial feeding. It can also describe goals of care, such as prioritising comfort, avoiding particular interventions or maintaining independence where possible. Legal requirements vary between states and territories. Your care team or a legal service can explain what applies in your area.
Appointing a Decision-maker
Choosing someone you trust to make health decisions if you cannot. This person may be called an Enduring Guardian or Medical Power of Attorney, depending on your state or territory.
Values and Goals Statements
A short explanation of what quality of life means to you. This might include staying at home as long as possible, avoiding unnecessary hospital stays or honouring cultural or spiritual practices important to you and your family.
Personal and Practical Preferences
Preferences such as where you feel most comfortable receiving care, cultural or spiritual needs, and whether you wish to consider organ or tissue donation.
Preparing Important Documents and Access
Making sure someone you trust can manage practical matters if needed. This may include access to essential accounts such as MyGov, My Health Record, Medicare, banking, utilities or insurance, and keeping key documents in one place. You can choose how much access to give and to whom, but having a clear plan reduces pressure later.
Why Planning Ahead Helps
Advance care planning often brings relief rather than fear. Families describe it as a “guidebook” that helps them feel confident in the decisions they make. For your care team, it allows treatment to be tailored to your values, not just medical routines. And for you, it means peace of mind knowing that even if your condition changes, your voice will still be heard.
Importantly, advance care planning is not fixed. You can revisit and update your decisions at any time as your circumstances or priorities shift.
Conversations and Timing
Good planning starts with talking. These conversations can happen gradually with the people you trust most. You do not need to cover everything at once. You can begin with simple reflections, such as:
- “If I were too unwell to speak, what would I want others to know about my wishes?”
- “Who do I trust to make decisions on my behalf if I can’t?”
- “What matters most to me: more time, or comfort and quality of life?”
- “Are there any treatments or interventions I would or wouldn’t want in certain situations?”
- “Where would I feel most comfortable being cared for?”
Bringing your thoughts into the open helps others feel confident supporting your choices. Many people find it easier to start these conversations earlier, while they feel well enough to think and decide clearly.
Trigger Warning: Discussion of Life-limiting Illness
When Care Shifts Toward Comfort
If treatment is no longer controlling the tumour, the focus of care may change. This does not mean care stops. It means the emphasis moves to comfort, dignity and quality of life. Palliative care specialists can help manage symptoms such as pain, nausea, seizures or fatigue, while also supporting your emotional and spiritual wellbeing.
Palliative care is available in hospitals, hospices and at home. You may receive it alongside active treatment, or later if your focus turns to comfort. Many people and families say they wish they had known it could be introduced earlier, because it offers not only medical support but also counselling, social work and guidance for families.
What to expect in advanced stages
Everyone’s experience is unique, but there are common changes that often occur as the body slows down. Understanding these can help ease fear and support comfort and presence – but if you’re not ready, it’s okay to skip this section and return later.
Eating and drinking less:
As metabolism slows, hunger and thirst usually decrease. Swallowing may become difficult, and forcing food or fluids can sometimes cause discomfort. Instead, care often focuses on mouth care, ice chips or small sips for comfort. Once drinking stops altogether, it often signals that life is entering its final days.
Spending more time asleep:
Many people become drowsy and less responsive, sleeping more during the day and engaging less with their surroundings. This is part of the body conserving energy.
Changes in awareness:
Some people may become confused, agitated or experience restlessness, while others withdraw quietly. Hearing is often one of the last senses to fade, so gentle words or touch can still bring comfort.
Breathing changes:
Breathing may become irregular, with pauses or noisy sounds caused by fluid in the throat. These changes are usually more distressing for families to witness than for the person experiencing them.
Physical changes:
Hands and feet may feel cool as circulation slows. Skin may become pale or mottled. Muscle weakness and loss of bladder or bowel control can also occur.
Neurological symptoms:
Because brain tumours affect the nervous system, symptoms such as seizures, weakness or difficulty speaking may continue or worsen. These are usually managed with medications or comfort-focused care.
These changes are a natural part of the dying process. Your care team will provide support and interventions to manage discomfort, reduce distress and maintain dignity. While timeframes vary, many of these changes unfold gradually over weeks, though some may appear over days.
Guidance and Support
Advance care planning is most effective when it’s supported by professionals who can guide and reassure you.
- Healthcare team: Your GP, oncologist and palliative care specialists can help prepare documents, answer medical questions and ensure your wishes are medically respected.
- Social workers, care coordinators and NAS Advocates: They can assist with paperwork, connect you to services and guide families through practical decisions.
- Legal and community organisations: They provide templates and information about Advance Care Directives, guardianship documents and decision-making laws in your state or territory.
- Palliative care services: They offer medical and nursing care, counselling, home visits and guidance for families as needs change.
Support is also available for those close to you, including counselling, respite care and bereavement services.
You are not alone. There are a range of support services available throughout Australia that provide practical, emotional, financial and wellbeing support. Find trusted organisations, helplines and resources designed to help patients, families and carers navigate the challenges of a brain cancer diagnosis and beyond.