Improving Perinatal Palliative Care in the Communities: A Regional Population-Based Study

Area of Science:

• Perinatal Medicine
• Palliative Care
• Public Health

Background:

• Perinatal palliative care (PPC) is vital for families with life-threatening fetal conditions, requiring tailored, community-based systems.
• Shared decision-making and multidisciplinary care are essential components of effective PPC.
• Variability in medical resources necessitates adaptable PPC models.

Purpose of the Study:

• To examine the status and challenges of PPC delivery in regional communities using child death review (CDR) data.
• To analyze decision-making processes, care planning, and home care transitions in PPC.
• To compare care processes and outcomes between families choosing comfort care versus intensive care.

Main Methods:

• Retrospective cohort study utilizing regional CDR data from 2018-2020 in Shiga Prefecture, Japan.
• Data collected from perinatal centers and cooperative hospitals for children under 18 with eligible conditions.
• Analysis focused on 17 cases discussing care plans for life-threatening fetal conditions.

Main Results:

• Of 17 cases, 65% chose comfort care and 35% opted for intensive care.
• The comfort care group experienced a significantly longer decision-making period (median 29 vs. 9 days).
• Specialized psychological and palliative care support was lacking; only 4 of 17 patients were discharged home.

Conclusions:

• Implementing community-based PPC presents significant challenges, including prolonged decision-making and psychological burden on families.
• Individualized support is crucial, as care plans impact family burden.
• Absence of specialized support and low rates of home care transition require critical improvement in PPC systems.