Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience

Arch Dis Child Fetal Neonatal Ed. 2017 Jan;102(1):F12-F16. doi: 10.1136/archdischild-2016-311027. Epub 2016 Sep 16.

Abstract

Background: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal decision-making.

Methods: A single-centre retrospective cohort study was undertaken for patients referred for outpatient antenatal counselling by a neonatologist over a two-and-half-year period. Patients also receiving APCC were compared with infants with similar prognoses who did not. Outcomes assessed included antenatal decision-making, obstetric and neonatal outcomes.

Results: 24 (17%) of the 144 referred fetuses received APCC; nearly all had been given the prognoses of 'non-survivable' or 'uncertain, likely poor'. Fetal or neonatal outcome included: fetal demise 5 (21%), in-hospital death 16 (67%) and survival to discharge (DC) 3(12%). 24 fetuses with similarly poor prognoses were not referred, but had similar outcomes: fetal demise 5 (21%), in-hospital death 16 (67%) and survival to DC 3 (12%). Those with APCC were more likely to choose comfort care than those without (67% vs 17%, p<0.01) and those who died in hospital had a shorter time to death than those who did not receive APCC. Less racial diversity was noted in the group receiving APCC. Infants with identified/suspected genetic syndromes were more likely to receive consultation despite similar mortality to the remaining cohort.

Conclusions: Long-term outcomes with and without APCC were similar for infants with poor prognoses, though non-survivors with APCC were more likely to have a comfort care plan and shorter time to in-hospital death.

Keywords: Congenital Abnorm; Ethics; Fetal Medicine; Neonatology; Palliative Care.

MeSH terms

  • Adult
  • Decision Making*
  • Female
  • Follow-Up Studies
  • Humans
  • Infant, Newborn
  • Male
  • Palliative Care / methods*
  • Pregnancy
  • Pregnancy Outcome
  • Prenatal Care / methods*
  • Referral and Consultation / organization & administration*
  • Retrospective Studies
  • Young Adult