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. 2025 Sep 13;29(10):1379–1386. doi: 10.1007/s10995-025-04162-y

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

Kohei Takashima 1,2, Masahito Hitosugi 1,✉, Masahito Yamamoto 1,3, Yoshihiro Maruo 2
PMCID: PMC12484261  PMID: 40944801

Abstract

Objectives

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.

Methods

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.

Results

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.

Conclusions for Practice

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.

Supplementary Information

The online version contains supplementary material available at 10.1007/s10995-025-04162-y.

Keywords: Perinatal palliative care, Birth plans, Life-threatening condition, Child death review, Retrospective studies

Significance

What is Already Known on this Subject?

What this Study Adds?

Perinatal palliative care is crucial for fetuses with life-threatening conditions and their families, but its implementation varies across healthcare settings. Most studies have focused on well-resourced medical facilities, leaving community-based perinatal palliative care underexplored.

This study describes the current state and challenges of community-based perinatal palliative care, including birth planning, is feasible. The prolonged decision-making process in the comfort care group may indicate the significant psychological burdens on families, emphasizing the need for comprehensive, individualized support. The lack of professionals trained in perinatal palliative care and limitations on home discharge for end-of-life care indicate the need for tailored interventions in community care settings.

Supplementary Information

The online version contains supplementary material available at 10.1007/s10995-025-04162-y.

Introduction

Palliative care aims to maximize quality of life and comfort. It now extends to the perinatal period, serving patients with life-threatening conditions, including chromosomal abnormalities, multiple malformations, and central nervous system disorders (ACOG, 2019; Carter, 2018). A key component is the creation of birth plan, which outlines medical interventions (comfort care, noninvasive, invasive), pregnancy duration, delivery mode, and location of care, based on family values and wishes (Carter, 2018; Cortezzo et al., 2020). However, the psychological burden on families to make decisions is overwhelming (Cortezzo et al., 2020). A multidisciplinary team, including obstetricians, neonatologists, nurses, and psychologists, should offer both medical and emotional support (Cortezzo et al., 2020; Medicine, 2010)

Advances in prenatal testing and imaging have enabled earlier and more frequent diagnoses of life-threatening fetal conditions (Benn et al., 2013; Cortezzo et al., 2020). Despite this, evidence regarding the involvement of perinatal palliative care teams and family decision-making about care plans remains limited and unstandardized (Balaguer et al., 2012; de Barbeyrac et al., 2022). Most existing studies focus on resource-rich facilities, with little knowledge about how perinatal palliative care is provided in community settings. Specifically, the roles of decision-making, multidisciplinary teams, and the feasibility of transition to home care remain unclear, raising concerns about implementation in regional areas (McMahon et al., 2018)

This study aims to describe the current status and challenges of the perinatal palliative care for fetuses with life-threatening conditions in regional communities in Japan and identify issue requiring improvement. To further explore decision-making processes and care outcomes in these settings, this study also compares families opting for comfort care versus intensive care.

Perinatal Care System in Shiga Prefecture

Japan had a population of 120 million and approximately 860,000 births in 2019 (Ministry of Health, 2019). The country has among the lowest neonatal (0.9 per 1,000 live births) and perinatal mortality rates (3.4 per 1,000 total births) globally (WHO, 2022). Termination is legally permitted only before 22 weeks and when the mother's life is at risk. Universal health insurance and public subsidies greatly reduce medical costs, with neonatal care covered for all infants (Tikkanen et al., 2020). Perinatal services are decentralized, and about half of deliveries occur in regional obstetric clinics (Unno, 2011).

Shiga Prefecture, located in central Japan (Fig. 1A), had a population of 1.4 million and 10,000 births in 2019 (Ministry of Health, 2019). Its live birth rate (7.7 per 1,000 people) was the fourth highest in the country, and perinatal mortality remained low at 2–4 per 1,000 total births (Ministry of Health, 2019). The prefecture has four perinatal centers and eight cooperative hospitals (Fig. 1B). Two-thirds of births occur in 30 primary obstetric clinics, and the rest in hospitals. Forensic autopsies are conducted at Shiga University of Medical Science.

Fig. 1.

Fig. 1

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Location of study area and perinatal center in Shiga Prefecture

Child Death Review

Child death review (CDR) is a system for reviewing the deaths of children under 18 years old and propose preventive measures, such as avoiding prone sleeping and co-sleeping, excluding elective terminations (Yatake et al., 2022). It involves collecting data from relevant institutions, including hospitals, clinics, and public health centers, having experts’ review, and issuing recommendations to prevent recurrence of deaths where possible. Participants include medical professionals such as pediatricians and forensic pathologists, child guidance staff, educators, public health officials, and police. In 2020, the Ministry of Health, Labour and Welfare launched pilot CDR programs in seven prefectures, including Shiga (Fraser et al., 2014; Yatake et al., 2022). In Shiga, CDR aims not only to reduce preventable deaths but also to establish support systems for inevitable ones. The Department of Legal Medicine, Shiga University of Medical Science, is commissioned to perform this work and reviews all death certificates to investigate child deaths in the prefecture approved by the Ministry of Health, Labour and Welfare (Ito et al., 2023).

Methods

Study Design

A retrospective cohort study was conducted using data from the CDR in Shiga Prefecture.

Population

We included children under 18 years who died between January 1, 2018, and December 31, 2020, based on the CDR, which targets all deaths of individuals under 18 years. Eligibility for perinatal palliative care was determined by a pediatrician and a neonatologist based on life-threatening conditions. Termination cases were excluded due to unavailable data from the CDR. Data extraction and analysis were performed in December, 2021.

Fetal conditions previously reported to be incompatible with sustained survival or associated with a high risk of severe morbidity or mortality antenatally or postnatally were used as reference diagnoses. These included, but were not limited to, trisomy 13/18, holoprosencephaly, bilateral renal agenesis/Potter’s syndrome, severe osteogenesis imperfecta, polycystic dysplastic kidney associated with oligohydramnios, inoperable congenital heart defects, hydrops fetalis, and pulmonary hypoplasia (Cortezzo et al., 2020; de Barbeyrac et al., 2022; Medicine, 2010).

Data Collection

Information was obtained from medical records and interviews with pediatricians and obstetricians:

  • General characteristics: diagnosis, sex, gestational age, birth weight, Apgar score 5 min after the birth, type of birth facility.

  • Birth plans: comfort care (non-invasive, family-centered care without life-prolonging treatment), intensive care (active life-sustaining treatment), and mode of delivery (vaginal or cesarean delivery).

  • Decision-making processes: gestational age at key milestones (first visit to the perinatal center, diagnosis, initiation and finalization of the birth plan) and occupations of discussion participants.

  • Neonatal outcomes: transition to home care (whether discharged home), days of survival, and place of death (hospital or home).

These variables were selected primarily to describe the structure and components of perinatal palliative care in regional communities. Additionally, some variables were used to explore differences in decision-making processes and neonatal outcomes according to the selected care plan (comfort care vs. intensive care), in line with the study’s objective.

Statistical Analyses

Continuous variables are expressed as medians, minimums, and maximums. Categorical variables are expressed as frequencies and percentages. The Mann–Whitney U test was used for comparisons between groups. P-values < 0.05 indicated statistical significance. Data were analyzed using the JMP software (JMP Pro 16.2.0, SAS Institute Inc., Cary, NC, USA).

Ethical statement.

This study was conducted in accordance with the ethical principles of the Declaration of Helsinki and was approved by the Ethics Review Office of Shiga University of Medical Science on September 1, 2021 (RRB21-008). All methods were carried out in accordance with relevant guidelines and regulations. Consent procedures were waived as data were collected through the CDR, ensuring no identifiable information was included.

Results

We analyzed three domains to evaluate perinatal palliative care in regional settings: (1) general characteristics and care plans, (2) decision-making processes, and (3) neonatal outcomes. We also compared these variables between the comfort and intensive care groups.

General Characteristics and Care Plans

Among 131 child deaths in Shiga Prefecture, 19 involved life-threatening conditions considered for perinatal palliative care (Fig. 2). Of these, 6/19 (32%) were male, 10/19 (53%) were born premature (< 37 weeks), 14/19 (74%) had low birth weight (< 2,500 g), and 12/19 (63%) had neonatal asphyxia (Apgar < 7 at 5 min). All were born at perinatal centers or cooperative hospitals. Chromosomal abnormalities (trisomy 18 or 13) and hydrops fetalis were most common (6/19, 32% each) (Table 1) (Supplemental Table).

Fig. 2.

Fig. 2

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Flow chart of decision making processes and delivery mode

Table 1.

Perinatal and clinical characteristics of fetuses with life-threatening conditions

Total n = 19
Male sex, n (%) 6 (32%)
Gestational age, weeks + days (median [min–max]) 37w0d (28w1d–42w0d)
Birth weight, g (median [min–max]) 2,081 g (1,040–3,918)
Diagnosis, n (%)
 Trisomy 18 5 (26%)
 Trisomy 13 1 (5%)
 Hydrops fetalis 6 (32%)
 Bilateral renal agenesis/Potter’s syndrome 2 (11%)
 Holoprosencephaly 2 (11%)
 Thanatophoric dysplasia 1 (5%)
 Inoperable congenital heart defect 1 (5%)
 Giant Omphalocele with hypoplastic lungs 1 (5%)
Type of birth facility, n (%)
 Perinatal centers 18 (95%)
 Perinatal cooperative hospitals  1 (5%)
 Transition to home care, n (%) 5 (26%)
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Two patients were not prenatally diagnosed or suspected; the remaining 17 had advanced care planning discussions and are included in the analysis. Among them, 11/17 (65%) chose comfort care, and 6/17 (35%) selected intensive care. Four comfort care cases involved cesarean delivery with the intention of prolonging the infant’s life (Fig. 2). Two of the 19 patients (1 with trisomy 18, 1 with Noonan syndrome–related chylothorax) did not receive palliative care. Both were delivered by cesarean and received intensive care. Palliative care after birth was provided by neonatologists and neonatal nurses.

Decision-Making Processes

Median gestational ages were: first visit to one of the perinatal centers or cooperative hospitals with suspecting fetal abnormality, following referral from the obstetrics clinic at 26w3d (range 9w6d–30w4d), birth plan initiation at 27w5d (range 22w6d–36w4d), and final decision at 31w1d (range 25w0d–37w0d) (Fig. 3). Median number of planning discussions was 5 (range 2–8).

Fig. 3.

Fig. 3

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Timeline of perinatal palliative care: first presentation to death

Birth plan duration was longer in the comfort care group than in the intensive care group (29 days [0–85] vs. 9 days [0–18] p = 0.044) (Table 2). Although obstetricians participated in all discussions, pediatricians/neonatologists were involved in 13/17 (76%), obstetric nurses or midwives in 12/17 (71%), and pediatric nurses in 2/17 (12%). A genetic counselor participated in 1/17 (6%). No discussions included psychologists, palliative specialists, or caseworkers.

Table 2.

Timeline of prenatal care planning and postnatal outcomes by birth plan type

Total Comfort care Intensive care P Value
n = 17 n = 11 n = 6
First presentation to a perinatal center or cooperative hospital, gestational age

26w3d

(9w6d–30w4d)

24w6d

(9w6d–28w2d)

28w2d

(22w6d–30w4d)

 0.06
Timing of diagnosis of fetal condition, gestational age

29w6d

(22w3d–36w4d)

29w6d

(22w3d–36w4d)

29w1d

(24w4d–30w4d)

 0.87
Start of birth plan discussion, gestational age

27w5d

(22w6d–36w4d)

26w3d

(23w5d–36w4d)

29w1d

(22w6d–31w1d)

 1.00
Final birth plan decision, gestational age

31w1d

(25w2d–37w0d)

32w3d

(29w1d–37w0d)

30w3d

(25w2d–32w1d)

 0.048
Duration from first discussion to decision, days 16 (0–85) 29 (0–85) 8 (0–18) 0.044
Age at death, days after birth 3 (0–493) 2 (0–493) 104 (0–298) 0.17
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Data are presented as median (minimum–maximum)

Gestational age is expressed in completed weeks + days

Two patients who were neither diagnosed nor suspected prenatally to have life-threatening conditions were excluded

Neonatal Outcomes

All 17 patients were born alive. Median age at death was 1 day (range 0–493) in the comfort care group and 139 days (range 0–674) in the intensive care group (Table 2). Transition to home care was achieved in 2/11 (18%) of the comfort care group and 2/6 (33%) of the intensive care group. One comfort care patient was discharged on day 6 for end-of-life care at home, where only general care was provided by family members. Three others received home medical care (tube feeding, ventilation), mostly by family, with visiting nurse and physician support. Sixteen of 17 (94%) died in hospital; one died at home.

Discussion

This is the first regional population-based study in Japan to describe the structure and delivery of perinatal palliative care for prenatally diagnosed life-threatening fetal conditions. In Shiga Prefecture, perinatal palliative care was provided to all prenatally diagnosed or suspected cases. This interdisciplinary approach in obstetrics and neonatology focuses on maximizing comfort and quality of life for affected fetuses and infants (Cortezzo et al., 2020). It involves prenatal consultation, birth planning, access to neonatal and pediatric specialists, and support throughout the perinatal period (ACOG, 2019). A birth plan documenting gestational age, delivery mode, and level of intervention is a key component of care (ACOG, 2019; Cortezzo et al., 2020). A birth planning process that seeks the infant's best interests provides psychological support for families and serves as a crucial communication tool, enabling them to share their hopes and personal values with the care team (Cortezzo et al., 2020). Most existing reports on perinatal palliative care come from centralized systems, such as in the U.S. and France (Breeze et al., 2007; de Barbeyrac et al., 2022; Flaig et al., 2019; Kukora et al., 2017). A French study conducted at centralized perinatal diagnostic centers reported that 88% of patients with treatment limitations had a detailed birth plan (de Barbeyrac et al., 2022). In contrast, in many areas of Japan, patients requiring perinatal palliative care are not concentrated in specialized centers. In Shiga, however, birth plans were created for all cases, and all births occurred at perinatal facilities. A median of five multidisciplinary meetings (range 2–8) was held over 48 days (range 16–120) from planning to delivery. These findings suggest that early diagnosis, patient concentration at designated facilities, and repeated team discussions are essential to support individualized care planning in community settings without centralized systems.

Few studies have described care plans for fetuses with poor prognoses. In developing such care plans, families consider various factors, including parental age, medical history, religion, values, socioeconomic status, disease severity and prognosis, and presence of siblings (Chenni et al., 2012; Cortezzo et al., 2020; Schechtman et al., 2002). Although care plans are created before delivery, they may be revised due to changes in fetal or maternal condition (Kaufman, 2007). Bias among healthcare providers may influence the development and content of care plans (Carlton et al., 2009). In this study, no post-creation changes were observed, suggesting that the care team may have respected the families’ original preferences, although this was not directly confirmed. Regarding postnatal medical interventions, the rate of comfort care selection has increased significantly over time, from 40% in 2001–2005 to 69% in 2015–2016 (Breeze et al., 2007; de Barbeyrac et al., 2022). The rate of comfort care selection in this study (65%) is consistent with previous reports. However, three trisomy 18 patients in the intensive care group survived beyond 200 days. The 1-year survival rate for trisomy 18 of 17–29% has dramatically increased, and factors related to prolonged survival, such as esophageal atresia and cardiovascular surgery, have also been identified (Kato et al., 2019; Rasmussen et al., 2003; Suto et al., 2021). Comfort care is not appropriate for all life-threatening condition (de Barbeyrac et al., 2022). Therefore, up-to-date prognostic information and individualized assessment should guide care planning to avoid diagnosis-based decisions alone.

No prior studies have reported differences in the duration of decision-making for specific medical interventions. In this study, families in the comfort care group took significantly longer time to complete a birth plan than those in the intensive care group. Families face a dilemma between personal and societal values when planning care for a fetus with a poor prognosis (Cortezzo et al., 2020). Regardless of the care plan, families experience psychological burdens. Our findings suggest that those opting for comfort care may require stronger palliative support during and after planning due to greater emotional tolls. In this study, 5 of 11 (45%) fetuses receiving comfort care were delivered via cesarean section for fetal indications. This highlights a potential ethical conflict between maternal morbidity and the desire to reduce birth-related stress on the infant (ACOG, 2019; Cortezzo et al., 2020; Medicine, 2010). Therefore, the care team must support families by providing medical information on the prognosis and disease course, along with empathy and emotional support (Bratt et al., 2015; Cortezzo et al., 2020). Effective palliative care requires multidisciplinary teams including obstetric and neonatal providers, nurses/midwives, psychologists, counselors, and pediatric palliative specialists (ACOG, 2019; Cortezzo et al., 2020; Medicine, 2010). In a French study, neonatologists or pediatricians participated in all discussions for severe fetal diagnoses, and 90.6%, 80.2%, and 43.3% of cases involved obstetricians, midwives, and psychologists, respectively (de Barbeyrac et al., 2022). In contrast, pediatricians were absent in 4/17 (24%) of birth plan discussions, and neither obstetric nor pediatric nurses were present in 5/17 (29%) in our study. Interventions by pediatricians and psychological support were insufficient. Future improvements should include enhanced collaboration between obstetricians and other professionals, training in bereavement and psychosocial support, and expanded access to mental health services.

Several families wish to spend limited time at home with children facing life-threatening conditions (Janvier et al., 2016). Home is often the preferred setting when appropriate medical support is available (McMahon et al., 2018). Therefore, birth plans should include the possibility of home discharge, even for a short period (Cortezzo et al., 2020). In Ireland, 47% of patients spent their final days at home through support from perinatal palliative care teams and local providers (McMahon et al., 2018). In contrast, only four patients were discharged in this study, and one died at home. Future efforts should focus on establishing home care systems and strengthening community collaboration to facilitate early transition to home care.

The strength of this study lies in its ability to capture all child death cases in a region of 1.4 million people. Death certificate-based surveys may underestimate eligible cases due to inappropriate descriptions (Mieno et al., 2016; Schuppener et al., 2020; Takashima & Hitosugi, 2022), In contrast, the CDR process collects detailed information from multiple child-related institutions, reducing such underestimation. Therefore, these findings provide a reliable understanding of perinatal palliative care in Japan. However, several limitations exist. First, survivors and termination cases were not included, as data were obtained from the CDR. However, given that 5-year survival rates for trisomy 13 and 18 are approximately 10%, the number of survivors was likely small (Meyer et al., 2016; Nelson et al., 2016). Future studies should include these populations. Second, the sample size was limited by the availability of only three years of CDR data in Shiga Prefecture at the time of the study. Nonetheless, the number of cases was comparable to previous reports, given that only continuing pregnancies were included and cases of extreme prematurity were excluded. Third, no interviews with families were conducted. Psychological burdens were inferred from clinical data. Future research should incorporate interviews to better assess family experiences, support received, and emotional changes throughout the perinatal period.

Conclusion

This CDR-based study clarifies the current state and challenges of perinatal palliative care in communities, focusing on decision-making, care planning, and home transitions. Although birth plans were implemented in all eligible cases, the prolonged decision-making in comfort care groups suggests greater psychological burden, highlighting the need for tailored, interdisciplinary support. Limited involvement of trained professionals and low rates of home discharge for end-of-life care indicate system-level gaps. The CDR is a valuable tool for understanding perinatal palliative care delivery and may inform improvements in regional care systems across Japan.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (PDF 69 KB) (68.6KB, pdf)

Acknowledgements

We thank the pilot child death review project members in the Shiga Prefecture for their cooperation in collecting the data on child death cases.

Authors Contributions

Conceptualization, K.T. and M.H.; methodology, K.T. and M.Y.; writing -original draft-, K.T. and M.H.; formal analysis, K.T.; investigation, K.T., M.Y.; writing -review and editing, Y. M. All the authors have read and agreed with the final version of the manuscript.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.

Data Availability

The datasets supporting the findings of this study are not publicly available due to privacy concerns, as they contain information that could compromise the privacy of research participants. However, they are available from the corresponding author, M.H., upon reasonable request.

Code Availability

Not applicable.

Declarations

Conflict of interest

All the authors declare that they have no conflict of interest.

Ethical Approval

This study was approved by the Ethics Review Office of Shiga University of Medical Science (RRB21-008).

Consent to Participate

Consent procedures were waived as data were collected through the Child death review.

Consent for Publication

Not Applicable. All data used in this study are fully anonymized and do not contain any identifiable information. Therefore, consent for publication is not required.

Footnotes

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplementary file1 (PDF 69 KB) (68.6KB, pdf)

Data Availability Statement

The datasets supporting the findings of this study are not publicly available due to privacy concerns, as they contain information that could compromise the privacy of research participants. However, they are available from the corresponding author, M.H., upon reasonable request.

Not applicable.

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