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Use of home parenteral nutrition in severely neurologically impaired children

Objective To review the outcome of children with severe neurological impairment (NI) and intestinal failure (IF) referred to our specialist multidisciplinary IF rehabilitation service and to discuss implications. Design Case report series, descriptive analysis. Setting IF rehabilitation programme at a tertiary children’s hospital in the UK. Patients Children with severe NI referred to our IF rehabilitation programme from 2009 to 2019. Main outcome measures Demographic and social data, diagnosis, clinical condition, use of home parenteral nutrition (HPN), complications, ethics review outcome and advance care plans. Results Six patients with severe NI were referred to our IF rehabilitation service. Consent for publication was obtained from five families. After thorough medical review and clinical ethics committee assessment, three children started HPN, one had intravenous fluids in addition to enteral feed as tolerated and one intravenous fluids only. The HPN children survived 3–7.08 years (median 4.42 years) on treatment. Objective gastrointestinal signs, for example, bleeding improved without excessive HPN-related complications. Symptomatic improvement was less clear. Analgesia was reduced in three of the five children. All cases had detailed symptom management and advance care plans regularly updated. Conclusions HPN can play a role in relieving gastrointestinal signs/symptoms in children with severe NI and IF. HPN can be conceptualised as part of good palliative care if judged to be in the child’s best interests. However, given its risks and that HPN has the potential to become inappropriately life-sustaining, a thorough ethics review and evaluation should be performed before it is initiated, withheld or withdrawn in children with severe NI. This case series explores the decision making around home parenteral nutrition (HPN) for a group of five children with a combination of severe neurodisability and intestinal failure, the involvement of a clinical ethics team and subsequent outcomes. The authors conclude that HPN can help relieve difficult symptoms and be justified as part of good palliative care. The importance of thorough assessment before committing to long term treatment is emphasised.