Palliative care for children in the community with static neurological conditions-are we getting it right?

Abstract

Background It is notoriously difficult to predict life expectancy for children with static neurological conditions (e.g. cerebral palsy). Identifying factors that make a child likely to be life limited and require an early palliative focus to their care is an ongoing challenge. Referrals for palliative services happen late, or not at all. Recent guidance developed by Helen and Douglas House Hospice, published by Together for Short Lives, aims to redress this using an evidence based traffic light tool. Aims To determine whether children with static neurological conditions enrolled at a special needs primary school for pupils with profound and multiple learning disabilities are being identified as life limited and referred for palliative care input according to best practice recommendations. To ensure all children felt to clinically warrant palliative care are identified by the traffic light tool. Methods Enrolment records for 2013 and 2015 from one special needs primary school were obtained. Retrospective review of electronic and paper notes was undertaken to identify children with static neurological conditions, determine whether palliative input had been discussed/utilised and score them according to the traffic light tool. The paediatrician responsible for each child was asked whether they were felt clinically to require palliative services. Results Across two year groups, 63 children had static neurological conditions. According to the scoring tool, 16 (25%) may have benefited from palliative services. Of these; seven had no palliative input or discussion, nine had hospice involvement, seven were documented as life limited, three had advance care planning and two were referred to palliative care. No children were felt to have been ‘missed’ by the tool’s criteria. Conclusions In line with national data, we are not identifying many children likely to benefit from a palliative care approach. This hinders timely discussion with parents and onwards referrals. The traffic light tool identifies all patients felt clinically to warrant referral and highlights a proportion of children whose palliative needs are not currently met. Routine scoring has been introduced as a prompt to consider discussions about prognosis, treatment goals and palliative care involvement.