P3B033: Assessing End-of-life Care at a Growing Pediatric Palliative Care Program

Background: Pediatric palliative care (PPC) teams work with multiple disciplines to coordinate complex needs of patients and facilitate a “good death,” defined by the National Academy of Medicine as “free from avoidable distress and suffering, for patients, families, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards.” A needs assessment was performed to analyze end-of-life care at our hospital and identify opportunities for growth to better support patients and families.

Methods: A retrospective chart review was conducted for all patients who died within our children’s hospital or at local hospital-affiliated emergency departments from 2021-2022. Using REDCap, collected data included demographics, final admission length of stay (LOS), death location, primary diagnosis, diagnosis date, PPC or hospice involvement, and code status. Additional services and therapies provided in the final 14 days of life were also recorded: social work, spiritual care, speech therapy (ST), occupational therapy (OT), physical therapy (PT), integrative therapy, music therapy, child life specialist, psychiatry, psychology, and bereavement.

Results: 137 eligible patients were identified. Patients were predominantly male (60%), African American (34%), English-speaking (85%) and Christian (20%).
Median age was 0.65 years, and most common primary diagnoses were prematurity (21%) and trauma (15%). 3% of patients were receiving hospice care. Most patients died in the pediatric intensive care unit (50%) or neonatal intensive care unit (37%) with limitations on resuscitation (65%).

Over half of patients received PPC (57%, Table 1) with a median of 0 days from last PPC note until death. Few (3%) had PPC consults ordered but not performed prior to death. Prematurity was the most common primary diagnosis receiving PPC (15%). Almost half (41%) of all patients with prematurity received PPC, whereas the majority of patients with cancer received PPC (90%). Few patients with trauma received PPC (14%). Most patients were not met by PPC during a previous admission (74%). Of those who received PPC previously, PPC was re-consulted for nearly all patients during their final admission (95%).

Conclusion: PPC was involved in end-of-life care for over half of patients. Patients not receiving PPC had shorter final admissions. DNR status did not differ among the two groups; however, PPC involvement had increased likelihood of proper advanced care planning (ACP) documentation. Patients receiving PPC experienced increased support from multidisciplinary services and therapies. As primary providers anticipate death, earlier PPC consultation may allow for better facilitation of ACP and multidisciplinary support. Timeliness of bereavement outreach did not differ between the two groups; however, more patients who received PPC had bereavement contact. Further studies hope to identify differences in decisions around life-sustaining therapies and staff distress between the two groups to better support patients through a “good death.”