Erin Denney-Koelsch

Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States

BACKGROUND Congenital 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. OBJECTIVE To 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. DESIGN A cross-sectional survey design included 48 items addressing funding and domains of quality care. SUBJECTS Program representatives from 30 states (n = 75). PRINCIPAL RESULTS Perinatal 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. CONCLUSION This 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.

Parents’ Experiences With Ultrasound During Pregnancy With a Lethal Fetal Diagnosis

This longitudinal naturalistic study sought to describe parent experiences of ultrasounds during pregnancies with lethal fetal diagnoses (LFDs). We interviewed 16 mothers and 14 partners twice during pregnancy and twice after birth and death of their infant. Parents reported that ultrasound providers had a profound impact on their experiences with LFDs. Within three stages of pregnancy (pre-diagnosis, learning the diagnosis, and living with the diagnosis), themes of optimistic expectation, hearing bad news, need to know, and time with baby emerged. The dynamics of interactions with ultrasound providers included differing goals and expectations, and compatibility of interactions. These interactions were either satisfying or added to parents’ burden. Ultrasound providers have the opportunity to share valuable knowledge and facilitate understanding and precious time with the baby. Providers of obstetrical care can improve communication with parents with LFDs at critical time periods by matching their interaction to parents’ needs.