Life-limiting conditions, and palliative & end-of-life care (NCMD)

Reports | Published: 10 Jul 2025

The National Child Mortality Database (NCMD) has published a report about service provision and policy recommendation learning relating to children with life-limiting conditions, and palliative and end of life care. Based on data from April 2019 to March 2022 in England, it seeks to understand how services can be improved to provide the best possible care for children who were very unwell, had congenital anomalies, cancer, or other conditions that meant that they may have been expected to die earlier than usual.

We must ensure that anything that can be learned to prevent future deaths from happening is identified and acted upon

Findings related to the characteristics of children who die with a life-limiting condition include:

  • 54% of all child deaths were of children who had a life-limiting condition
  • The proportion varied by age, with the highest proportion in those aged 5-9 years (81%) and the lowest in those aged 15-17 years (42%)
  • However, the highest number of deaths of children with a life-limiting condition was in the neonatal (0–27 days) age group, followed by those aged 28–364 days. These two age groups represented 58% of deaths of children with a life-limiting condition.

The report also identifies a number of themes from Child Death Overview Panel (CDOP) reviews: parallel planning and engagement with palliative care; advance care planning; prescribing or drug delivery issues; if there was a named medical specialist; the use of a cold bedroom or cot after death; issues relating to commissioning and funding of palliative care services; and bereavement support.

It also contains five key recommendations for improvement, including calls to:

  • Review commissioning arrangements to ensure access to 24-hour advice
  • Ensure all bereaved families are allocated a key worker
  • Ensure all named medical specialists receive and complete appropriate training
  • Ensure all advance care plans contain easily accessible information on resuscitation
  • Ensure timely access to essential medications needed for the delivery of end of life care at home.

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Life-limiting conditions, and palliative & end-of-life care (NCMD)