NICE publishes major new children’s palliative care guideline

Together for Short Lives has welcomed the new National Institute for Health and Clinical Excellence (NICE) clinical guideline on providing palliative care to seriously ill babies, children and young people. 

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. Significantly, NICE recommends that:

  • 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.

Together for Short Lives played an active role in shaping the guideline, and in collaboration with Martin House Children’s Hospice ran three focus groups across England with children and young people with life-limiting and life-threatening conditions, the outcome of which was drawn on significantly by NICE in developing this guideline. We also submitted evidence to the consultation process which was informed by our members, families of children with life-limiting conditions and bereaved parents. We are pleased that NICE has further enhanced the guideline so that it now recommends:

  • asking the child who they would like to be involved in discussions about their care, such as “other family members (for example siblings or grandparents) or people important to them (for example friends, boyfriends or girlfriends)”.
  • stressing the importance of parallel planning, so that families and professionals are prepared for a change in the course of the child’s condition.
  • involving neonatal medical teams in care planning for a child if there is an antenatal diagnosis of a life-limiting condition.
  • recognising importance of managed clinical networks in delivering high-quality coordinated children’s palliative care.

Despite these improvements, Together for Short Lives is concerned that the guideline development process highlighted the lack of an adequate evidence base available for NICE to draw upon to inform the clinical guidance. We look forward to working closely with NICE and partners within the children’s palliative care sector to ensure that such research is developed to underpin the development of any future guidelines.  

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 area. 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.”


  • Francis Robson Nyachowe 28 March 2017, 19:33

    This is a great statement, Hope it will enhance paediatric palliative care. and will also give the patient more say in improving quality of care.

  • Professor Luisella Magnani 01 May 2017, 11:50

    This Guide is so Precious, and its Preciousness is concentrated in one sentence 'Use an age-appropriate approach that takes account of the stage of development and the ability to communicate' and this sentence is focused on Prenatal, Perinatal, Preverbal, Non-Verbal and Verbal Age. Surely, the way of Being Before a Child, the way of speaking to the Baby-in-the-Womb, is the Very First Care which contains all the OtherCares.
    Luisella Magnani

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