Julie Crawshay on Advance Care Planning for Brain Cancer Families in NSW
Some conversations are hard to start, and advance care planning is one of them. I am Julie Crawshay, a Sydney carer, and I have come to believe it is one of the kindest things a family can do together. Talking about wishes early is not giving up. It is making sure the people you love are heard, whatever the road ahead brings.
What advance care planning means
Advance care planning is the process of thinking and talking about the care a person would want if they became too unwell to speak for themselves. For families facing a brain tumour, this matters especially, because the illness can sometimes affect a person's ability to communicate or make decisions over time. Planning while things are calmer means those wishes are known and respected.
In New South Wales, this often involves a few connected ideas:
- Talking openly with family and the treating team about values, hopes and worries.
- Recording preferences so they are not lost in a stressful moment.
- Considering who a person would trust to speak on their behalf if needed.
- Making sure important people, including doctors, know a plan exists and where to find it.
The specific documents and legal instruments in NSW have their own rules, and they are reviewed from time to time, so please confirm the current forms and requirements with your treating team, and consider seeking proper legal advice for anything formal. I am sharing a carer's perspective, not legal guidance.
Starting the conversation gently
What helped our family was choosing a quiet, unhurried moment rather than the middle of a crisis. We began with values before paperwork, talking about what a good day looks like and what matters most. From there the practical questions felt less frightening. It is completely normal for these talks to happen in small pieces over time rather than all at once.
Support is available so you do not have to do this alone. Hospital social workers and palliative care teams in NSW are experienced in these conversations and can guide you with real gentleness. Cancer Council support lines and advance care planning services in Australia can also help you understand the steps and where to find reliable information.
I would say this to anyone hesitating: having the conversation does not make anything happen sooner. It simply means that if a difficult day comes, decisions are guided by love and by the person's own words rather than by guesswork. That is a gift to everyone, including the carer who might otherwise carry the weight of wondering.
Please treat this as a starting point only. Advance care planning laws, forms and services change, so always check the current position with your treating team and the relevant NSW service, and seek professional advice where appropriate. Julie Crawshay found that once the words were spoken, the fear around them softened, and Julie Crawshay hopes your family finds the same quiet relief.
By Julie Crawshay, Sydney, Australia