Objectives 

We describe a complex paediatric palliative care case, focusing on the challenges of diabetes management at end of life. Our patient had a rare degenerative condition with rapid deterioration over weeks. As feeds decreased, and then changed to oral rehydration solution and then could no longer be tolerated, we experienced challenges in diabetes management. These challenges included balance of comfort and need for testing of blood sugar level and ketone, decreasing tolerance of treatment needed to manage blood sugars, regular hypoglycaemic and hyperglycaemic episodes.  

Methods 

We searched for paediatric diabetes management at end-of-life guidelines, particularly looking for guidance around management where an insulin pump or Percutaneous Endoscopic Gastrostomy (PEG) were being used as in our described case study. We also reached out to the Australian and New Zealand Society of Palliative Medicine Paediatric Special Interest Group and the Association of Paediatric Palliative Medicine (UK) Paediatric Palliative Medicine Consultant Group for any known or recommended guidelines.  

Results 

We found no guidelines specific to the paediatric context or focussing on use of an insulin pump. Only one adult-based guideline recommended mentioned PEG access. We reviewed multiple recommended adult-based guidelines.  Colleague groups approached mentioned how uncommonly they need to be managing blood sugars and were supportive of development of a guideline. We present our international guideline progress to date, using concepts from adult-based guidelines and addressing gaps, seeking input from endocrinology and palliative care stakeholders from Australia and the United Kingdom.  

Conclusion 

This case represents an uncommon situation in paediatric palliative care, meaning a guideline would provide consistency in approach and confidence in managing the situation when it arises.