The First 13 Years of “Percorso Giacomo”: Patients’ Outcomes

TL;DR

This study examines outcomes of a perinatal palliative care service over 13 years, showing high comfort care adoption and improved parental decision-making.

Contribution

The study demonstrates the growing need and effectiveness of perinatal palliative care in managing complex fetal and neonatal conditions.

Findings

The cohort showed a 90% cumulative rate of comfort care plans.

There was a high redirection of care goals from intensive to palliative.

The service's continuity supported parental decision-making processes.

Abstract

Objectives: To report the outcomes of a population of fetuses and neonates with life-limiting (LL) or life-threatening (LT) diagnoses leading to adverse prognoses cared for by a service of perinatal palliative care (PPC), the Percorso Giacomo (PG). Study design: This is a single center retrospective cohort study of all fetuses and neonates prenatally or postnatally diagnosed with LL or LT conditions whose families opted to continue the pregnancy at IRCCS Policlinico di Sant’Orsola in Bologna, Italy, from 2013 to 2025. Results: There were 83 fetuses and/or neonates including 64 diagnosed prenatally and 19 postnatally with annual significant increments in number. All families encountered the PG team. Overall, the cohort demonstrated a very high cumulative rate of comfort care plan (90%) with high rate of redirection of goals of care from intensive to palliative. Conclusions: PG showed a significant growth over 13 years suggesting the strong need of a service of PPC. The continuity of care provided by PG facilitated parental decision-making process towards redirection of goals of care. The outcomes observed provided valuable insights related to the wide range of prognoses for each diagnosis that will enable more informed counseling in the future.

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