• Charlotte Wool, Denise Côté-Arsenault, Beth Perry Black, Erin Denney-Koelsch, Sujeong Kim, and Karen Kavanaugh.
• 1 York College of Pennsylvania , York, Pennsylvania.
• J Palliat Med. 2016 Mar 1; 19 (3): 279-85.

BackgroundCongenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.ObjectiveTo examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.DesignA cross-sectional survey design included 48 items addressing funding and domains of quality care.SubjectsProgram representatives from 30 states (n = 75).Principal ResultsPerinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.ConclusionThis study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.

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