578 - Documentation of shared-decision making practices in neonatal and pediatric ECMO: a mixed-methods study

Publication Number: 578.4078

Brittany Lyons, Children's Hospital Los Angeles, Burbank, CA, United States; Jenny Kingsley, Children's Hospital Los Angeles, Los Angeles, CA, United States; Asavari Kamerkar, Children's Hospital Los Angeles, Los Angeles, CA, United States; Sabrina Derrington, Children's Hospital Los Angeles, Los Angeles, CA, United States

Background: Pediatric extracorporeal membrane oxygenation (ECMO) use poses challenges for communication and decision-making. ECMO is the ultimate “rescue” therapy and is associated with significant morbidity, mortality, and uncertainty. Initiation often occurs in emergent circumstances placing unique pressures on communication, shared decision-making (SDM) and informed consent. There is a lack of data about and no established consensus on SDM in ECMO.

Objective: Describe documentation practices and identify elements of SDM for patients receiving ECMO.

Design/Methods: In this retrospective, single center descriptive and qualitative study, we reviewed charts of children 0-18 years cannulated to ECMO from January 2022 to December 2023 and assessed physician daily documentation. Patient and caregiver characteristics were recorded. Excerpts from physician notes were extracted for qualitative analysis. Investigators developed a codebook through an iterative process and used thematic content analysis to code data, validate themes, and reach consensus. Deductive coding was used for elements of SDM (information sharing, eliciting parental preference, and decision made); inductive coding was used for other themes related to documentation.

Results: We reviewed notes from ICU physicians, surgeons, and ECMO specialists, neurocritical care, and cardiology consultants pertaining to ECMO at our center in a 2-year period (n=87), including 26 (30%) NICU, 51 (59%) CTICU, and 10 (11%) PICU patients. Of 599 documentation days, only 27 (4.5%) had documentation of all 3 elements of SDM and 145 (24%) had no decision-making documentation. The most frequently documented element of SDM was information sharing (76%), and the most common missing element was parent preference (5%). Parent preference was most often documented (22/32, 69%) at decannulation. We noted clinician driven decision making most frequently on the day of cannulation (53% of cases) and decannulation (53% of cases).

Conclusion(s): SDM is inconsistently documented surrounding pediatric ECMO use. Parental preference is the least frequently documented aspect of SDM, though most likely to emerge on the last day of ECMO. Information sharing is most consistently documented, and clinician driven decision-making is frequently utilized for both cannulation and decannulation. These findings suggest that clinician-driven ECMO decision-making may still be the predominant model in our hospital and likely others, and there may be opportunities to increase SDM use and documentation of communication with families.