Year: 2024
Type: conference-paper
Study design: Observational Study
Abstract: Background West Midlands Perinatal Palliative Care Service (WMPPCS) is the busiest such service in the United Kingdom with 62 referrals for the 12 months 2023 to 2024 to date. A large cohort of babies with Trisomy 18 and 13 are referred to this service. These conditions are associated with poor outcomes such that colloquially has been described as ‘incompatible with life’. Increasingly services involved are recognising a variety of outcomes though, and questions about what interventions should be offered are being raised. Parallel planning varies and may or may not include offers of a doctor attending delivery, subspecialist review, access to respiratory support, access to Neonatal Intensive Care Units and surgical intervention. This balance between recognising potential to survive and need best possible care, and poor average survival makes care complex to navigate. Objectives We reviewed the number of babies with a trisomy 18 or 13 diagnosis referred to the service and reviewed what service was provided, what interventions were undertaken and for those babies that died what their length of survival was. Using this information we hope to broaden understanding of possible outcomes and precedent clinical journeys to improve and provide consistency in parallel planning for these babies. Results In total 25 babies were referred with Trisomy 18 and 6 with Trisomy 13 from November 2021 to May 2024 (2 years 7 months). There was a variance in approach to care during pregnancy including whether or not subspecialty reviews were offered. After birth there was a variance in approach to formalising diagnosis if amniocentesis had been declined. At birth different approaches to care were offered including around access to NICU admission, provision of respiratory support and other resuscitation measures. Interventions provided included surgery before and after formalised diagnosis. Prognosis varied, with a large cohort not surviving to delivery (8 trisomy 18; 1 trisomy 13), many having short lives (11 trisomy 18; 4 trisomy 13) a cohort continuing to survive at time of writing (6 trisomy 18; 1 trisomy 13). Discussion Our findings support clinicians having an open mind in their approach to families with a baby diagnosed with or highly likely to have trisomy 18. True parallel planning, a cornerstone of palliative care, should include planning for both the best and worst possible outcomes. Families need to be aware of the possibility of IUFD but also extended time at home together to help them navigate choices effectively. Care that supports both pathways should be carefully considered, alongside an understanding of the family’s goals and preferences.
Source: Oral Presentations
Author: Christine Mott
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W4402325498