The National Child Mortality Database (NCMD) Programme at the University of Bristol in the UK has launched a new thematic report on the deaths of children in England entitled ‘Infants, children and young people with life-limiting conditions: Learning from child death reviews on palliative and end of life care’[1]
“Every child who dies is a precious individual and their death represents a devastating loss for parents, siblings, grandparents, carers, guardians, extended family, and friends. With all child deaths there is a strong need to understand what happened, and why. We must ensure that anything that can be learned to improve services is identified and acted upon.”
(Taken from the introduction to the report)
This report, published on 10th July 2025, analyses data from the child death reviews in England of children who have died with, but not necessarily of, a life-limiting condition (LLC), in the period between 1 April 2019 and 31 March 2022, as recorded on NCMD. It presents the characteristics of the children who have died and an analysis of the national themes and learning on palliative care services, as recorded in the completed reviews by the Child Death Overview Panels (CDOPs).
Statistics
The period was restricted to child deaths that occurred between 1 April 2019 – 31 March 2022 to ensure that most (96%) of the deaths during this period had been reviewed by CDOP. This ensured the most complete information was reported. In addition, Hospital Episode Statistics (HES) data had only been provided for deaths up to 31 March 2022 and data linkage was not possible for deaths that occurred after this date.
- Between 1 April 2019 and 31 March 2022 there were a total of 9,517 deaths of children (aged 0-17). 5,134 (54%) of these were children who had LLC
- 58% of the children with LLC who died were in the under 1 year age group
- The highest proportion of deaths due to a LLC was in the 5-9 year age group (81%)
- 77% of children with LLC died in hospital
- More children with LLC who died were from the most deprived neighbourhoods, in comparison to the least deprived
- Children with LLC who were from Asian backgrounds had the highest proportion of deaths
Areas for improvement
As well as sharing key statistics on child deaths, the report also highlights learning about the provision of palliative and bereavement care for children. It analyses findings from the 2,016 CDOP reviews where the supplementary reporting form was completed, representing 39% of all child deaths from LLCs. The report authors acknowledge that one of the limitations of the work is that this supplementary information may not be representative of all age groups and causes of death (further information on limitation is available in the Supporting Material).
The following six areas for improvement were identified:
- Appropriate parallel planning and timely engagement with palliative care
- Documented and accessible Advance Care Plans
- Appropriateness, timeliness and accessibility of prescribed medicines
- Leading and coordinating care by a named specialist
- Use of cold bedroom or cot after death
- Commissioning and funding of palliative care services
- Bereavement support and allocation of a keyworker for families
Recommendations
Commissioning All Integrated Care Boards (ICBs) in collaboration with Children and Young People Palliative Care Operational Delivery Networks, Neonatal Operational Delivery Networks, Paediatric Critical Care Operational Delivery Networks, Surgery in Children Operational Delivery Networks should:
- Review commissioning arrangements to ensure all infants (including those who are preterm), children and young people with life-limiting conditions have 24-hour access to community nursing teams, specialists in paediatric palliative care, and other appropriate healthcare professionals as required, and especially at the end of life.
All ICBs, Local Authorities and NHS providers should:
- Ensure all bereaved families are allocated a key worker, which should be funded and embedded appropriately.
Education
The Royal College of Paediatrics and Child Health, Association of Paediatric Palliative Medicine, The College of Paramedics should:
- Ensure all named medical specialists working with infants, children and young people receive and complete appropriate training in parallel planning and documenting Advance Care Plans
All ICBs and hospital trusts should:
- Integrated Care Boards working with care providers looking after children with life-limiting conditions should ensure that the ReSPECT / resuscitation document is easily visible.
Medicines
All ICBs, the Royal College of General Practitioners and the Royal Pharmaceutical Society should:
- Ensure timely access to essential medications needed for the delivery of end-of-life care at home. This should include parenteral medication for subcutaneous infusions and medications needed off label or beyond their licence
Future research
The report concludes with recommendations for future research, with the priority being to explore the barriers to providing timely access to safe and effective medications for delivery of end-of-life care in the home setting.
The report also highlights themes that were previously identified as areas for further research in the NICE Guideline NG61. These relate to:
- impact on offering timely perinatal palliative care on the experience of bereaved families
- factors that help children/young people and parents decide on place of end-of-life care
- effectiveness of a home-based package of care as opposed to hospital or hospice care.
You can read the full report, family stories, data tables and an Easy Read version of the report here:
Children with Life Limiting Conditions and Palliative and End of Life Care Needs
[1] Authors: Sylvia Stoianova, Tom Williams, Vicky Sleap, David Odd, Joanna Garstang, James Fraser, Emily Harrop, Lorna Fraser, Emily Tammam, Emily Robertson and Karen Luy. With a foreword by Nick Carroll, CEO of Together for Short Lives
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