Creation of a Novel Pediatric Palliative Care Navigator to Improve End-of-Life Care for Children with Serious Illness

Pediatric end of life care is starkly different compared to adults. There are no benchmark quality metrics in pediatric palliative care, advance care planning conversations are poorly documented and there are no pediatric-specific electronic health record navigators to guide standard of care. This leads to suboptimal care at the end of a child’s life. An interdisciplinary group of three nurses and two physicians with quality and information technology experience developed the first comprehensive and interdisciplinary pediatric palliative navigator to help tailor pediatric needs, drive development of benchmarks in our field, and ensure gold standard, quality and equitable care delivery to children dying of serious illness.

The navigator includes custom pediatric end of life topics, order sets, templated notes using SmartData elements, checklists and risk scales, clinician order specific prompts with order signing, flowsheet based SmartForms, hyperlinks, and more. Primary process changes that drove improvements in our outcomes include carrying out focus groups with key stakeholders to assess needs and using quality improvement science for rapid cycle implementation. After implementation, advance care planning documentation improved by 35%, deaths were attended by interdisciplinary team members 80% of the time (increased from 50%), post-mortem paperwork became electronic, and quality metrics were developed and collected electronically. This led to Epic writing the first clinical program of its kind, The Joint Commission Certification in Advanced Palliative Care and federal funding awards.

Critical elements and lessons learned for success include ensuring nursing leadership collaboration because nurses are essential users. While nurses received extensive training as part of their quarterly training track, at-the-elbow support was essential at go-live, particularly in areas where pediatric deaths are less common (outside of the intensive care unit). Rounding with users was helpful to get them comfortable with the new workflow and allowed for feedback for rapid cycle changes. Partnering with pathology was essential, as they had a different workflow. These critical elements impacted nursing training modules and physician education throughout the institution.