This information is for parents who have had conversations with their care team, either during pregnancy or after birth, suggesting that their baby’s future is uncertain.
The information guides families through the different aspects of perinatal palliative, ongoing, end of life and bereavement care. This is specifically designed for families who have either received an antenatal diagnosis of a life-limiting or life-threatening condition, or those with a baby in neonatal care who have been told their baby’s future is uncertain.
Parents who have lost a baby often say that they regret not being introduced to the support of children’s hospice and community palliative care sooner. They say they feel they missed out on quality time to bond with their baby and make memories of that precious time.
In these difficult circumstances families need to have honest, simple information so that they are aware of all the options open to them.
The charities hope the information helps families facing uncertainty over their baby’s future to be fully informed about their care and involved in making decisions, together with the care team. The information should also help families to make the most of their quality time together with their baby, and to access the vital support available from children’s hospice and other palliative care services.
Caroline Lee-Davey, Bliss Chief Executive, said: “Families faced with the devastating reality of caring for a baby whose future is uncertain deserve to have clear and honest information about the services that can support them. This new resource is intended to give families the information they need to make informed decisions, together with their baby’s care team, and to understand more about the options available to them.
“We are pleased to have worked with Together for Short Lives to create a resource we hope can be a comfort and a guide for families navigating neonatal palliative care, while also providing professionals with a way of building partnership in what can be extremely difficult conversations.”
Helena Dunbar, Director of Service Development and Improvement at Together for Short Lives said: “We hope that this new resource will support families facing an extremely unsettling and devastating time when they are told that their baby’s future is uncertain. We encourage staff caring for families facing this difficult time to direct them to this new resource so that they can better understand neonatal palliative care and the options available to them. We have been so pleased to work alongside Bliss when creating this new resource.”
This information for parents is complemented by newly-updated professional guidelines in the BAPM Framework for Practice: Recognising uncertainty: an integrated framework for palliative care in perinatal medicine, developed with the Association of Paediatric Palliative Medicine. Together, these parallel resources for parents and health professionals support an integrated approach in this most sensitive and challenging area of healthcare.
