P0565 - Tracheostomy as a Bridge to Hope: Family Decision Making Surrounding Tracheostomy in a Variety of Clinical Settings

Introduction
Initiation of long-term technology, such as tracheostomy tube placement, can be a challenging and difficult decision for families. Palliative care consultation prior to tracheostomy placement can help support the family as they explore options. We hypothesize that there are a multitude of themes that drive family decision making.

Methods
This is a retrospective cohort study using data from the Pediatric Health Information System (PHIS) database looking at tracheostomy placement at one urban health center over a two year period. During this time period, there were data from 42 children 21 years of age and younger who had tracheostomy placement and were discharged between January 1, 2017 and December 31, 2018.

The following information was collected and statistically analyzed from PHIS and supplemental review of the electronic medical record (EMR): age, insurance type, length of stay, discharge location, primary diagnosis, tracheostomy placement, palliative care consultation, and a qualitative analysis of family meeting documentation per the EMR.

Results
Our age range was 0 to 17 years old. Primary diagnosis included cardiopulmonary disease (33%), neurological impairment (24%), and traumatic injury (21%). The average length of stay was 92 days (12 to 594 days). The average day of tracheostomy placement was day 44 of hospitalization (0 to 154 days). The majority of patients were black (62%) and spoke English (81%) as their primary language. Of the 42 patients, 27 (64%) were placed in the PICU and 15 (36%) in the NICU.

Hope was the predominant theme mentioned by families and was frequently documented in their rationale by the team. This hope could include hope for improvement in their underlying condition and hope for removal of technology in the future. Specifically, these hopes include hoping for walking and talking in the future, hoping for breathing more easily, and hoping that the overall patient’s overall clinical situation will improve. Surprisingly, the role of religion and concern for prolonging suffering were only rarely mentioned or documented. In our patient population, 12% of our patients had pediatric palliative consultation.

Conclusions
In families weighing the risks and benefits of tracheostomy tube placement, hope was cited an important factor in decision making. Understanding the role of hope for improvement in the future should be addressed during the process. Given how goals of care can evolve over time and the evolving health status of the child, having a connection to a pediatric palliative care team may be useful for these families to support their complex decision making.