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

Perinatal palliative care, defined as support for creating birth plans that include treatment and care decisions, is crucial for families facing life-threatening fetal conditions. However, the variability in medical resources across communities necessitates the development of tailored, community-based perinatal palliative care systems that support shared decision-making through multidisciplinary care. This study uses child death review (CDR) data to examine the current status and challenges of perinatal palliative care delivery in regional communities, focusing on decision-making processes, care planning, and transition to home care. It also compares cases in which families selected comfort care with those choosing intensive care to explore differences in care processes and outcomes.

A retrospective cohort study was conducted using regional CDR data from children under 18 years who died in Shiga Prefecture, Japan, between 2018 and 2020. Data on children eligible for perinatal palliative care were primarily collected from perinatal centers and perinatal cooperative hospitals participating in the CDR.

Among 131 deaths, 19 involved life-threatening conditions considered for perinatal palliative care. Two lacked prenatal diagnoses, while 17 discussed care plans, including medical intervention options, and mode of delivery. Of these, 65% (11/17) chose comfort care, while 35% (6/17) opted for intensive care. A comparison between these groups showed that the comfort care group had a longer decision-making period (median, 29 vs. 9 days; p = 0.044). Decision support before birth, which included accurate information about fetal conditions, care planning options, and psychological support, was not provided by clinical psychologists or palliative care specialists. Of the 17, four patients were discharged home, and one died at home.

This study highlights the challenges of implementing perinatal palliative care in communities. The prolonged decision-making process associated with comfort care may reflect the significant psychological burden on families. Factors such as care plans influence family burden, emphasizing the need for individualized support. The absence of specialized support and low rates of transition to home care for end-of-life care are critical issue for improvement in community-based perinatal palliative care.