End of life care in paediatric settings: UK national survey

Bedendo, Andre; Papworth, Andrew; Beresford, Bryony; Phillips, Bob; Vasudevan, Chakrapani; Lake Walker, Gabriella; Weatherly, Helen; Feltbower, Richard; Hinde, Sebastian; Hewitt, Catherine Elizabeth; Murtagh, Fliss; Noyes, Jane; Hackett, Julia; Hain, Richard; Oddie, Sam; Subramanian, Gayathri; Haynes, Andrew; Fraser, Lorna

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.

Citation

Bedendo, A., Papworth, A., Beresford, B., Phillips, B., Vasudevan, C., Lake Walker, G., Weatherly, H., Feltbower, R., Hinde, S., Hewitt, C. E., Murtagh, F., Noyes, J., Hackett, J., Hain, R., Oddie, S., Subramanian, G., Haynes, A., & Fraser, L. (online). End of life care in paediatric settings: UK national survey. BMJ Supportive & Palliative Care, Article spcare-2023-004673. https://doi.org/10.1136/spcare-2023-004673

• Journal Article Type: Article
• Acceptance Date: Nov 18, 2024
• Online Publication Date: Nov 28, 2024
• Deposit Date: Dec 4, 2024
• Publicly Available Date: Dec 5, 2024
• Journal: BMJ Supportive & Palliative Care
• Print ISSN: 2045-435X
• Electronic ISSN: 2045-4368
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Article Number: spcare-2023-004673
• DOI: https://doi.org/10.1136/spcare-2023-004673
• Public URL: https://hull-repository.worktribe.com/output/4960342