. 2025 Feb 26;15(2):221-230.

doi: 10.1136/spcare-2023-004673.

End of life care in paediatric settings: UK national survey

Andre Bedendo¹, Andrew Papworth¹, Bryony Beresford², Bob Phillips³, Chakrapani Vasudevan⁴, Gabriella Lake Walker⁵, Helen Weatherly⁶, Richard Feltbower⁷, Sebastian Hinde⁶, Catherine Elizabeth Hewitt⁸, Fliss Murtagh⁹, Jane Noyes¹⁰, Julia Hackett¹, Richard Hain^{11

12}, Sam Oddie⁴, Gayathri Subramanian¹³, Andrew Haynes¹, Lorna Fraser^{1

14}

Affiliations

¹ Department of Health Sciences, University of York, Heslington,York, UK.
² Social Policy Research Unit, School for Business and Society, University of York, York, UK bryony.beresford@york.ac.uk.
³ Centre for Reviews and Dissemination, University of York, York, UK.
⁴ Bradford Hospitals National Health Service Trust, Bradford, Bradford, UK.
⁵ Parent Advisory Panel Member, Department of Health Sciences, University of York, Heslington, York, UK.
⁶ Centre for Health Economics, University of York, Heslington, York, UK.
⁷ Leeds Institute for Data Analytics, School of Medicine, University of Leeds, Leed, UK.
⁸ York Trials Unit, University of York, Heslington, York, UK.
⁹ Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
¹⁰ School of Health and Medical Sciences, Bangor University, Fron Heulog, Bangor, UK.
¹¹ All-Wales Paediatric Palliative Care Network, Cardiff and Vale University Health Board, Cardiff, UK.
¹² College of Human and Health Sciences, Swansea University, Swansea, UK.
¹³ Manchester University National Health Service Foundation Trust, Manchester, UK.
¹⁴ Cicely Saunders Institute, Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.

PMID: 39609076
PMCID: PMC11874335
DOI: 10.1136/spcare-2023-004673

End of life care in paediatric settings: UK national survey

Andre Bedendo et al. BMJ Support Palliat Care. 2025.

. 2025 Feb 26;15(2):221-230.

doi: 10.1136/spcare-2023-004673.

Authors

Affiliations

¹ Department of Health Sciences, University of York, Heslington,York, UK.
² Social Policy Research Unit, School for Business and Society, University of York, York, UK bryony.beresford@york.ac.uk.
³ Centre for Reviews and Dissemination, University of York, York, UK.
⁴ Bradford Hospitals National Health Service Trust, Bradford, Bradford, UK.
⁵ Parent Advisory Panel Member, Department of Health Sciences, University of York, Heslington, York, UK.
⁶ Centre for Health Economics, University of York, Heslington, York, UK.
⁷ Leeds Institute for Data Analytics, School of Medicine, University of Leeds, Leed, UK.
⁸ York Trials Unit, University of York, Heslington, York, UK.
⁹ Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
¹⁰ School of Health and Medical Sciences, Bangor University, Fron Heulog, Bangor, UK.
¹¹ All-Wales Paediatric Palliative Care Network, Cardiff and Vale University Health Board, Cardiff, UK.
¹² College of Human and Health Sciences, Swansea University, Swansea, UK.
¹³ Manchester University National Health Service Foundation Trust, Manchester, UK.
¹⁴ Cicely Saunders Institute, Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.

PMID: 39609076
PMCID: PMC11874335
DOI: 10.1136/spcare-2023-004673

Abstract

Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.

Methods: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.

Results: 91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.

Conclusions: Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.

Keywords: Paediatrics; Service evaluation; Terminal care.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Figures

**Figure 1. Graphical representation of differences between respondents in terms of core elements of end of life care.**

See this image and copyright information in PMC

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References

1. Child Death Review Programme Patterns and trends of child deaths in wales 2011-2020. 2022
1. National Health Service What end of life care involves - end of life care. 2022
1. Downar J, Goldman R, Pinto R, et al. The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ. 2017;189:E484–93. doi: 10.1503/cmaj.160775. - DOI - PMC - PubMed
1. Yarnell CJ, Jewell LM, Astell A, et al. Observational study of agreement between attending and trainee physicians on the surprise question: “Would you be surprised if this patient died in the next 12 months?”. PLoS One. 2021;16:e0247571. doi: 10.1371/journal.pone.0247571. - DOI - PMC - PubMed
1. Burke K, Coombes LH, Menezes A, et al. The “surprise” question in paediatric palliative care: A prospective cohort study. Palliat Med. 2018;32:535–42. doi: 10.1177/0269216317716061. - DOI - PubMed

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End of life care in paediatric settings: UK national survey

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End of life care in paediatric settings: UK national survey

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Conflict of interest statement

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