Outpatient Pediatric Palliative Care: A National Survey of Clinic Structures and Operations

Abstract

Context

Inpatient pediatric palliative care (PPC) programs are increasingly expanding into the outpatient setting; however, limited information is available to guide clinic operationalization.

Objectives

We asked outpatient PPC (OPPC) clinicians about their clinic structure and operations to support future programmatic growth.

Methods

In 2019, national palliative care organizations reported 48 freestanding children’s hospitals with specialty PPC programs. As part of a larger study on OPPC services, a PPC liaison at each hospital was asked to complete an online survey regarding clinic operations and metrics of success.

Results

Out of 36 respondents, 28 (78%) reported provision of OPPC in a clinic setting. Most OPPC clinics were located within another subspecialty clinic and managed by PPC (64%) and/or non-PPC subspecialty staff (54%). Respondents reported utilizing various clinic models including floating (62%), freestanding (50%), and/or embedded (39%), with more than half (58%) using more than one model. Fifty percent of PPC clinicians restricted their schedule to specific half day clinics, offering a median of 2.5 half day clinics per week. OPPC clinic schedules typically consisted of two 60-minute initial consultations and one to five 30- to 60-minute follow-up appointments per week. Most respondents self-reported that their OPPC program design and workflow facilitated the provision of high-quality care; however, only half of respondents felt their program design and workflow was successful and promoted team resilience.

Conclusion

Hospital-based OPPC clinic operationalization varies significantly across the nation, with many programs utilizing more than one clinic model simultaneously. It remains unclear how various clinic structures and workflow practices influence OPPC program sustainability and success.