Primary palliative care in the delivery room: patients' and medical personnel's perspectives

OBJECTIVE: To investigate circumstances of primary palliative care (PPC) in the delivery room (DR), medical personnel's experience with neonates who died under PPC in the DR and perceived sources of care-related distress in DR staff. STUDY DESIGN: Retrospective chart review of all neonates who were cared for under PPC in the DR during the years 2000-2010 at Charite University Medical Center Berlin, and structured face-to-face interviews with DR nursing staff and physicians. RESULT: Neonates undergoing PPC could be grouped as preterm infants at the limits of viability with a gestational age between 22 0/7 and 23 6/7 weeks (n=86, 76%) and newborn infants with complex chronic conditions (n=27, 24%). The median age of neonates at death was 59 min (interquartile range [IQR] 28-105 min). Most of DR staff did not report relevant signs of distress in dying neonates, and providing palliative care was not named as a relevant care-related source of distress by medical personnel. However, half of the participants reported on high degrees of caregiver's emotional distress in PPC situations, identifying insecurity of how to communicate with parents and to provide emotional support as the most common source of distress. CONCLUSION: Caregiver's emotional distress primarily originates from providing support to parents and not from providing medical care to the dying newborn. Implications for future practice include the need for structured education to improve DR staffs communication and counselling skills related to parents in PPC situations.