Advanced Planning In Perinatal Palliative Care – Are We Making Clear End Of Life Plans?


Advanced Planning In Perinatal Palliative Care – Are We Making Clear End Of Life Plans?


Downie J; A Khader; M Campbell; Murdoch E



Archives Of Disease In Childhood




Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in the postnatal period, including BAPM (2010) and Managed Clinical Networks. An important consideration which is highlighted in all guidance is the use of end of life care plans. These are plans which combine clinical care plans with parental wishes and multidisciplinary team assessment. The aim of this audit was to assess the frequency of use of end-of-life care plans across central Scotland.

Methods A retrospective case note review of all neonatal deaths occurring after 23 weeks gestation in two large tertiary neonatal units in Scotland. A record of neonatal deaths within each unit was obtained from the electronic patient record ‘Badger’ database, between January 2014 and December 2014. A review of both the units admission databases and death certification logs were also undertaken to ensure that all deaths were captured. Full notes were requested from medical records and reviewed by the authors. All neonatal deaths following planned reorientation of care were included, acute deaths in the delivery room or neonatal unit were excluded due to their often sudden and unpredictable nature. The authors reviewed full case notes for completed or partially completed end-of-life care planning.

Results A total of 47 deaths occurred over 2014 between both units. 60% of deaths followed planned reorientation of care. Parents were often involved in discussions regarding plans to reorientate care and parental wishes, both before and after death, were documented in 68% of case notes. The most common plans documented related to planned extubation (94%), however planning regarding analgesia (23%), feeding (4%) and bereavement care (28%) was limited.

Conclusions At present, a large proportion of infants approaching end of life do not have a clear care plan documented. This study has identified that there remains a need for clear and concise documentation of clinical and parental wishes following reorientation of care.


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Downie J; A Khader; M Campbell; Murdoch E, “Advanced Planning In Perinatal Palliative Care – Are We Making Clear End Of Life Plans?,” Pediatric Palliative Care Library, accessed December 3, 2023,