During a routine telehealth outpatient review in the middle of 2020, a paediatrician (myself) discussed various aspects of care of patient Maddy with her mother and father.  Maddy, was aged  7 years, and had a complex diagnosis of herpes encephalitis diagnosed as a neonate, and a subsequent autio-immune encephalitis.  During this consultation, Madelyn’s Paediatric Acute Resuscitation Plan was reviewed.  Maddy’s mother, Melissa, gave some feedback about how health professionals could broach the topic of the resuscitation plan with parents.  This was particularly in the context where, despite the child having a life limiting condition, and being supported by the palliative care service, the family’s still wanted CPR and resuscitation.  The excellent suggestion was made that health clinicians could choose their words carefully.  For example, check in with parents about the plan “Is this the latest plan” rather than ask a question such as “Are you sure you are okay with this plan?”.  This led to a broader discussion of how health professionals can best respond to parents of children with life limiting conditions within the emergency department in a holistic way – particularly in relation to pain and symptom management.  Finally, at this time a trial advance care planning document was being implemented in Queensland called the “paediatric Statement of Choices”.  This provided a tool for Madelyn’s parents, Marcus and Melissa, to fully engage in their preferences around Maddy’s care in relation to resuscitation, but also other aspects of care such as location of care, major surgeries, spiritual aspects of care and consideration of tissue donation.   Around this time, through project funding, we were developing some educational video resources and developed three videos where Maddy’s parents presented on care within the emergency department and the paediatric statement of Choices.  Maddy sadly died approximately 6 months after these videos were made, and these videos a just one of many legacies of Maddy’s life and the huge impact she had on so many people, including health professionals.

The presentation will present 2 videos highlighting the “Paediatric Statement of Choices” advance care planning tool and also parental suggestions on how to approach acute care within the emergency department from a holistic perspective.  The presentation will be co-presented by Maddy’s palliative care paediatrician and her mother.