434 - Words for when there are No Words: Developing Primary Perinatal Palliative Care Conversation Tools for NICU and MFM Learners
Sunday, April 27, 2025
8:30am – 10:45am HST
Publication Number: 434.7004
Rachel J. Vandermeer, University of Texas at Austin Dell Medical School, Austin, TX, United States; Mariza Rodriguez, University Health, San Antonio, TX, United States; Patricia K. DeForest, The University of Texas Health Science Center at San Antonio Joe R. and Teresa Lozano Long School of Medicine, San Antonio, TX, United States; Jody Huber, Sanford Children's Hospital, Sioux Falls, SD, United States; Jean Petershack, UT Health San Antonio, San Antonio, TX, United States
Associate Professor of Pediatrics University of Texas at Austin Dell Medical School Austin, Texas, United States
Background: Conversation tools (CT) are the standard in palliative care but do not exist for perinatal palliative care (PPC). In the US, stillbirth plus neonatal loss rates are 25 times higher than pediatric cancer deaths. Further, perinatal death is linked to longstanding maternal mental health concerns. Also, studies show the medical team is key to family-infant bonding. As perinatal loss occurs over a short period of time, providers must say the right the words the first time. Vitally then, the fields of PPC, neonatology and obstetrics must develop CT for perinatal loss. Objective: One aim of a PPC curriculum (4-workshop series for NICU and MFM physician learners) was to adapt existing CT to perinatal loss and generate legacy facilitation CT. Design/Methods: The Kern’s 6 Step approach and the reflective practice conceptual framework were used to design a yearlong longitudinal PPC curriculum. A needs assessment and literature search were completed. No specific PPC CT was found. Gold standard palliative CT (SPIKES and Ask Tell Ask) were adapted and piloted in clinical practice. Legacy CT were created using articles that identified meaningful interventions to families. The adapted CT and legacy CT were compiled into a “cheat sheet” for the PPC curriculum. The “cheat sheet” was reviewed by institutional experts in PPC. The CT were introduced over three sessions: two contained drama-based skills practice, the third used an OSCE. The evidence of efficacy was evaluated in 4 ways: 1) observation of implementation in the sessions, 2) final journaling assignment reflecting on clinical practice, 3) post session evaluations and 4) end series focus groups. Results: Seventeen learners participated in the PPC curriculum. On post workshop evaluations for each cohort, 100% of learners reported it was very or extremely important to utilize CT. Further, 100% of participants indicated they were very or extremely likely to utilize CT with patients. Skills practice and OSCE observation demonstrated active incorporation of CT into fellow’s communication strategies. In each cohort’s focus group, fellows reported using the cheat sheet or it's phrases multiple times clinically and gave examples of its use clinically. Fellows also reported increased confidence leading difficult conversations.
Conclusion(s): In this small curriculum project, perinatal palliative CT increased fellow comfort with regards to delivering bad news, developing a birth plan and facilitating legacy. While developed for one institution, this cheat sheet is widely applicable to other institutions and staff (nurses, child life specialists, chaplains, etc).
