A new review published in Health Affairs Scholar highlights significant limitations in the existing evidence base for perinatal palliative care (PPC) in the United States, raising concerns about its capacity to adequately support a growing, vulnerable patient population increasingly directed towards it due to abortion restrictions.
The review, titled "Dobbs-driven expansion of perinatal palliative care: a scoping review of the evidence and its limits," was conducted by a team of researchers led by Abigail B. Wilpers, PhD, WHNP-BC , Assistant Professor, in Penn Nursing 's Department of Family and Community Health . PPC is an interdisciplinary approach that provides comprehensive support from prenatal diagnosis through labor, birth, neonatal care, and end-of-life support for families facing pregnancies complicated by life-limiting fetal conditions (LLFCs). This care integrates medical management with psychosocial and bereavement support, aiming to facilitate values-driven decision-making for families.
"Our review reveals a significant and concerning gap in the evidence for PPC in the United States, especially at a time when more families are being directed to this care due to abortion restrictions," said Wilpers. "We urgently need robust, U.S.-based research to truly understand if PPC can effectively and equitably meet the needs of all vulnerable patients, ensuring their safety, comfort, and well-being in an increasingly complex landscape of reproductive health.
Key Findings and Identified Gaps:
- Understudied Area: The review of 13 U.S.-based studies found that PPC programs are largely understudied, with limited evidence on crucial outcomes such as maternal health and neonatal comfort.
- Limited Data on Uptake and Diversity: Studies lacked comprehensive data on PPC use rates for all eligible individuals, hindering a full assessment of overall uptake. Furthermore, existing studies showed a lack of diversity in their samples, making it difficult to determine if PPC adequately serves diverse populations.
- Patient Satisfaction vs. Policy Impact: While most PPC patients reported high satisfaction, often citing compassionate care, emotional support, and parental validation, none of the reviewed studies examined the specific experience of receiving PPC due to abortion restrictions.
- Insufficient Evidence for Policy Shifts: The review concludes that the current evidence is insufficient to determine whether PPC can adequately support the escalating number of patients now being directed to this care by policy rather than personal choice.
The authors underscore that existing PPC evidence is limited, leaving critical gaps in understanding its safety, effectiveness, acceptability, and equity—factors essential for assessing if PPC meets its intended goals and serves diverse populations. This comprehensive review serves as a crucial call to action for more rigorous research to inform policy and ensure appropriate care for vulnerable families.
