Publication
The butterfly pathway: Supporting families following the antenatal diagnosis of a life-limiting condition in a neonatal intensive care unit setting
Burleigh C, Ahsan S, Jones V, Vasudevan C · Palliative Medicine · 2021
Background: Perinatal palliative care pathways are highlighted as tools to improve care and achieve consistency for families facing a life-limiting diagnosis. There are inherent diagnostic and prognostic uncertainties associated with such conditions.This multidisciplinary service, known as the 'Butterfly Pathway', is led by a consultant neonatologist in collaboration with the perinatal palliative care team from a children's hospice, fetal medicine team and regional specialists.The main aims of this service are to support families in decision-making about their babies' care and offer comprehensive family support. Aim(s): To study the demographic and clinical profile of babies referred antenatally to the service and understand clinical outcomes. Method(s): Retrospective review of all babies referred to the pathway (Aug 2016 -Dec 2020). Data were obtained from electronic and paper medical records for mother and baby. Result(s): 52 referrals were accepted within the stated time period. The most common reasons for referral were structural, chromosomal and musculoskeletal abnormalities. 92% women agreed to the referral and were seen in clinic. Of the 40 patients seen, a limitation or avoidance of invasive treatment was agreed in 88% cases. Planned interventions at delivery were agreed based on the clinical situation and parents' wishes. Of the 52 patients referred, almost half (24) had an intrauterine death. 26 babies were born alive (50%), of which 11 died within 24 hours of birth.12 babies (23%) were discharged from hospital alive. This comprehensive service provides the opportunity for parents to advocate for their babies and make valuable memories. Conclusion(s): PPC pathways have the potential to ensure that families receive consistent, high quality care during a potentially devastating time. This study adds to the evidence that PPC services are usually welcomed by parents, aid decision-making and help support professionals to avoid distressing invasive interventions.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.