P3B016: A Novel Interdisciplinary Tracheostomy Counseling Pathway

Background: Over the last decade there has been an increase in the number of children receiving tracheostomies. Caregivers frequently report not having been informed of the ongoing care their child will require after tracheostomy placement. As tracheostomies have many short- and long-term implications for the child and the family, it is imperative that caregivers receive appropriate counseling so they can give informed consent. A preliminary novel protocol for this in-depth counseling prior to tracheostomy placement has been developed at Oklahoma Children’s Hospital (OCH) and partners the palliative care team (PCT) with the complex care team (CCT).

Methods: We first identified key stakeholders in this process, specifically those that participate in the decision to place a tracheostomy and those that coordinate post-tracheostomy care and discharge from OCH. We identified a time this group could regularly meet to review patients potentially requiring tracheostomy placement. We then delineated patients appropriate for pre-tracheostomy counseling by CCT, PCT, or both teams.

Results: A tracheostomy team was identified in the NICU, while the CCT served this role for the PICU. The NICU team, CCT, social work, respiratory therapy, PCT, and liaisons from our local long-term care facility met weekly to discuss patients with potential of requiring a tracheostomy. Counseling for family was offered by PCT if the medical condition was noted to be static or progressive, thereby placement of the tracheostomy was palliative in nature. CCT completed counseling if future decannulation was the expected outcome. In situations of uncertainty or if the patient was an established PCT patient, both teams shared in counseling the families.

Conclusion: Caregiving burden is high for families caring for children with tracheostomies. Frequently, this is not addressed prior to tracheostomy placement. We describe the beginnings of a novel, standardized approach for counseling families about the long-term implications of their decision prior to tracheostomy placement to allow for true informed consent. Continued work on reaching all patients requiring a tracheostomy in our institution and education of medical teams, including our surgical colleagues, on how to use to this protocol remain.