Introduction The need for pro-active planning and delivery of multidisciplinary (MDT) care to children with life-limiting conditions (LLC) is widely acknowledged, and ‘standards frameworks’ have been recommended by Together for Short Lives and others. Palliative and end-of-life care are important priorities of the United Kingdom government.
Methods We conducted a retrospective case-notes audit of 20 children (8 cancer and 12 non-cancer), aged 28 days to 16 years, who had died as a direct result of a LLC, against seven pre-agreed standards. Sudden deaths, neonatal deaths and deaths within a month of diagnosis were excluded.
A ‘breaking-bad-news’ meeting was documented in 95 % (Oncology 100% , non-oncology 91.6%), but this focussed on the diagnosis, and discussion of prognoses was lacking in most.
A MDT meeting was documented in 85% (Oncology: 100% , non-oncology: 75% ).
A key worker and a lead professional were both identified in 45% (Oncology: 87.5% , non-oncology: 16.7% ; p= 0.01).
MDT assessment of palliative care needs was documented in 60% (Oncology: 100% , non-oncology: 33.3% ; p= 0.015).
Symptom management plans were found in 65 % (Oncology: 100% , non-oncology: 41.7% ; p= 0.0225).
Family and psycho-social needs were documented in 75% (Oncology: 100% , non-oncology: 58.3% ).
End-of-life care plans were documented in full in 40% (Oncology: 75% , non-oncology: 16.7% ; p= 0.0325).
Recommendations and conclusion Recognition of needs and planning for palliative care in children remains sub-optimal overall, especially so in children with non-cancer LLC. This audit has led to much introspection and an acknowledgement of the need for hearts-and-minds change in clinicians’ approaches. We hope to influence commissioners to develop a robust children’s palliative care service with a complex-care co-ordinator, rolling MDT meetings and dedicated paediatrician time. A sub-regional working group is mapping services to needs, in order to identify further gaps. A comprehensive care pathway that will incorporate palliative and end-of-life care plans has been written, with input from parent groups.
- © 2017, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.