As health professionals it can be challenging to know when to introduce the concept of advanced care planning (ACP) to a family and to recognise if they are ready​ to have these important but often difficult conversations. The purpose of these plans is to try to ensure that the child’s care is in accordance with theirs and their family’s wishes and their care happens in a place that they choose, and unnecessary interventions are avoided. 

 

A case study will be used to demonstrate how we can be brave and embrace important end of life conversations even with children as young as four years. Emily was a bright, very clever four-year-old girl who was diagnosed with a DIPG brain tumour, fifteen months before she died. Emily took the lead by asking her mother if the lump in her head was going to make her die. Her parents chose to be honest and give Emily a voice, engaging her in important discussions about her care. Utilising a number of advance care planning tools including, My Wishes and the Paediatric Statement of Choices, Emily’s parents shared who Emily was, her likes and dislikes and helped her to share how and where she wanted to be cared for. They also documented their goals and hopes, plans for when Emily deteriorated and their wish for tumour and tissue donation. These conversations occurred over time and were anticipated in advance, meaning her parents felt better prepared for her end-of-life phase. There was also enhanced communication between all health care providers and a sense that the best possible care could be delivered to Emily and her family.