1. A Perinatal Palliative Care improvement project for the North West
No baby is born with footsteps so small that they cannot leave an imprint on this world
A Perinatal Palliative Care improvement project for the North West
Authors: The Northwest Neonatal Operational Delivery Network perinatal palliative group
Introduction
Perinatal palliative care focuses on the enhancement of quality of life for the baby and support for the family where a life-limiting condition has been identified and continues throughout life, death, bereavement and beyond. The North West Neonatal Operational Delivery Network (NWNODN) recognised that there were examples of excellent palliative and end of life care across the North West but that it was often difficult to “learn from each other”. The aim of the project was to improve palliative care and end of life care for babies and their families across the North West Operational Delivery Network, by introducing an integrated care framework approach.
Method
A regional audit was carried out in 2013 to evaluate all neonatal deaths over a 12-month period and within that perinatal palliative care provision in the North West. This led to the formation of a multi-disciplinarily, cross-organisational perinatal palliative group (PPG) to act on the results
Results and what we did
Palliative care provision was not equitable and was disjointed across the NWNODN.
The audit found that 100% of babies died in the hospital setting
Only 10% of families were offered an alternative to care in the hospital setting
The PPG produced a suite of on-line documents to assist health care professionals and promote the highest standard of family-centred care with a programme of education and integration into units
Suite of online documents held on NWNODN website
Antenatal Discussion Form to document advanced care planning
Guideline for non/pre-viable births (including live birth following termination)
‘Lactation after loss’ leaflet.
Two Care Plans
babies who were expected to die in hospital
babies who could be cared for at home or in a hospice (with an accompanying Transport Guideline)
Organ Donation
Pain and Comfort Measures
Guidance on family psychological, social, spiritual and sibling support with memory making guide
Care after Death: post mortem, coroners, death certification, funerals
A Guideline for Staff support
A Palliative Care Education Framework
What we want from this work……….
24 hour, seamless care for babies and their families/relatives, offering choices in palliative and end of life care
Standard NWNODN guidelines and resources
Opportunity to commence parallel planning from the onset
Experts delivering the service
Standardised symptom management plans
Access to counselling services as soon as possible
Access for babies to go home if the parents would like this
Outreach for community support pre and post death
The North West Neonatal Operational Delivery Network
Staff – “lets make this happen”
With support from Labour ward, the bioengineering department and the neonatal staff, children's hospices, the wishes of these parents for the time they had with their 4 month old baby girl were fulfilled.
Parents – “we know our baby is going to die, but we would love to swim with her just once”
Conclusion
This work has promoted the right conversations taking place at the right time, in the right place and with the right people at this devastating time