A Survey of Perinatal Palliative Care Programs in the United States: Structure, Processes, and Outcomes

Abstract

Background: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.

Objective: To explicate structure, processes, and outcomes of PPC programs, specifically how they coordinate care and manage goals of care meetings, as well as providers' perceptions of the most beneficial components of care and their expected care outcomes.

Design: Free-text response data were taken from a 48-item online survey organized around the eight domains defined by the National Consensus Project for Quality Palliative Care (NCP). Responses related to NCP Domain 1 (Structure and Process of Care) were analyzed using conventional content analysis.

Subjects: U.S. PPC program representatives (N = 75) from 30 states.

Results: The majority of programs have a care coordinator, but roles vary from direct patient care to program administration. Participants described a range of topics discussed during family meetings to determine parental goals across the perinatal period. Support and respect for parent preferences and choices were the most important components of care. Desired program outcomes include parental satisfaction with physical and psychosocial support, help with the decision-making process, opportunity to parent their infant, infant comfort, and positive personal and family growth.

Conclusions: While PPC programs do not often measure quality, their goals are family centered, with a focus on parent satisfaction with decision making and psychosocial support. PPC programs coordinate interdisciplinary care by arranging meetings and advocating for families. More research is needed to understand parent perspectives on care provided.