The new guideline, entitled End of Life Care for Infants, Children and Young People: Planning and Management, describes the care and support that children with life-limiting conditions – and their families – should expect to receive from the point at which their needs are recognised until the end of their lives.
It covers a range of issues such as advance care planning, hydration and nutrition and emotional and psychological support and seeks to involve children, young people and their families in decisions about their care, and improve the support that is available to them.
The new guideline is aimed at health and social care professional, as well as all other professionals involved in caring for infants, children and young people with life-limiting conditions and also commissioners and providers.
Its recommendations include:
- the child and their family should play an active role in discussions about their care
- where possible, the child should receive palliative care, including end of life care, in the place they choose
- children with life-shortening conditions should be cared for by a multidisciplinary team who meet regularly to discuss the child’s care
Commenting on the new guideline, Chief Executive of Together for Short Lives Barbara Gelb OBE said:
“This guideline is a vital tool for professionals delivering children’s palliative care and for commissioners who plan services for their local aea. Despite excellent examples of good practice in planning, funding and providing children’s palliative care across the UK, the services available to children with life-limiting conditions vary hugely from area to area. This is demonstrated by our survey of commissioners, which found that over a quarter of clinical commissioning groups in England do not commission community children’s nurses out of hours, for example.
“The government’s response to the Review of Choice at End of Life stated that commissioners in England ‘must prioritise children’s palliative care in their strategic planning’. This commitment, together with the recommendations set out in the NICE guideline, provides a clear direction for commissioners and providers to work together to plan, fund and deliver high quality children’s palliative care. We look forward to working closely with them to achieve this.”
Dr Ros Taylor, MBE, Clinical Director, at Hospice UK, added:
“This guideline is a very valuable resource for all the professionals involved in children’s palliative care. We welcome in particular the focus on parallel planning and sensitive skilled communication, key aspects of care which are vitally important for families coping with the emotional and practical challenges of caring for a child with a life-limiting condition.
“Local children’s hospices are vital players in the care of dying children and we hope this guideline will raise awareness of the complexity of care they provide, and the funds needed to support expansion of services.
“This guideline marks considerable progress, however, we are aware that more evidence is needed to support best practice in children’s palliative care. Hospice UK is leading a major project to improve research in hospices across the UK which will help support this.”