PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

Foster E; Van Hasselt TJ; Brown S; Mackie F; Rajaraman N; Harnden F; Battersby C; Mott C

Archives of Disease in Childhood

2024

palliative therapy; brain malformation; conference abstract; diagnosis; female; fetus; heart disease; human; infant; long term survival; major clinical study; maternal care; multiple malformation syndrome; neonatal intensive care unit; nervous system malformation; newborn; newborn care; newborn intensive care; patient referral; pharmaceutical care; prenatal care; prognosis; routinely collected health data; therapy

Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed antenatal care records for two months during 2023 at Birmingham Women's Hospital, which provides specialist fetal medicine care and receives referrals from across the West Midlands. We identified foetuses with probable life-limiting conditions and reported those who received palliative care referrals, and those who did not but could have potentially benefited from this (on review by CM, Consultant in Paediatric Palliative Medicine). In addition, we obtained aggregate data from a wider research project using routinely collected data from the National Neonatal Research Database (NNRD)1 on all babies admitted to neonatal care in the West Midlands between 2015 and 2020 who had diagnoses compatible with BAPM 2010 palliative care categories 1 and 2: antenatal or postnatal conditions not compatible with long term survival or with a high risk of significant morbidity or death.2 Results Antenatal . Antenatal records at Birmingham Women's hospital across two months showed there were 10 palliative care referrals, of whom 1 foetus subsequently died in utero and 1 family declined palliative care referral. Of the remaining referrals, 2 had complex cardiac conditions, 1 severe congenital neurological anomaly, and 5 syndromic/ chromosomal/genetic disorders. There were an additional 12 babies who may have benefitted from palliative care referral, of whom 9 had cardiac disease with poor prognosis, 1 had cerebral malformation, and 2 multiple congenital anomalies. Neonatal . There were 75,492 neonatal admissions reported in the West Midlands 2015-2020 in the NNRD. 34 babies had Category 1 conditions and 495 babies had Category 2 conditions, who could benefit from palliative care (table 1). The most common discharge destination from neonatal units was transfer to another hospital for ongoing care (n=249). 140 babies died in a neonatal unit, and 130 went home (figure 2). Conclusion There is apparent unmet need for palliative care consultation antenatally, based on fetal medicine data showing only half of cases with poor prognosis having referrals. Between 2015 and 2020, an average of 88 babies each year were admitted to neonatal units in the West Midlands with antenatal or postnatal diagnoses that may have warranted palliative care referral. There is also a number of cases when palliative care is involved that would not be admitted to NICU, including those babies that die in theatre, ones that died IUFD, and ones that went to the maternity unit with parents instead. This service evaluation, aided by use of routinely-collected data, has strengthened the case for developing a perinatal palliative care network for the West Midlands.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

October List 2024