Neonatal Palliative Care: A Quality Improvement Project


Neonatal Palliative Care: A Quality Improvement Project


TA Warlow; K Flood; S Jones



Archives Of Disease In Childhood




Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs.


Identify and describe the cohort of infants admitted to NICU requiring palliative care.

Assess the quality of palliative care provided.

Identify and implement quality improvement interventions improving care.

Methods Demographic data was collected from the BadgerNet Database for all infants admitted between January 2010 and March 2014 who died before 12 months old. A thorough notes review was performed for those who died during admission to NICU. Care was compared against national standards obtained from the ‘Together for Short Lives 2009’ and ‘RCPCH 2014’ national guidance. Qualitative data of staff views was collected by standard questions in group discussion.

Results and conclusions 2477 infants were admitted during the study period. 26 died within 12 months of life, 86%(22) requiring significant palliative care input. 38%(9) died during admission to NICU. Causes of death are shown in Figure 1. Decision to reorientate care was recorded in 59%(13), with only 50%(11) documenting any palliative care. Medical and Nursing assessments were comprehensive, whereas spiritual, psychological and social assessments were sporadic (Figure 2). Documentation of end of life planning was incomplete in all cases with no documented staff debriefings. Bereavement support was a single consultant appointment in 6 weeks. Staff felt under-confident providing quality palliative care to infants at the end of life.

Abstract G483 Figure 1
Abstract G483 Figure 1
Causes of death in Neonates admitted to NICU

Abstract G483 Figure 2
Abstract G483 Figure 2
Multiagency care assessments of infants with palliative care needs

Interventions A Bereavement team was formed including a parent representative, in line with SAFE principals. High impact, low cost interventions completed include:

Developing a locally applicable Neonatal palliative care pathway improving documentation and links with hospice and home care teams.

Medical team education sessions and online resource folder.

Nurse bereavement training

New Bereavement Sister role.

Psychologists input obtained for staff.

Procurement of bereavement resources and care equipment.

Following this initial intervention, structured questioning of staff demonstrated improved confidence in managing end of life situations, and improved communication between staff when providing quality palliative care. A formal re-audit is planned following another 20 neonatal deaths.


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Citation List Month

September 2016 List


TA Warlow; K Flood; S Jones, “Neonatal Palliative Care: A Quality Improvement Project,” Pediatric Palliative Care Library, accessed July 5, 2022,

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