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Abstract
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.
Results
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.