Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

Abstract

Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term parenteral nutrition (LTPN) is technically feasible in these children. However, clinicians are concerned about whether it is appropriate in these circumstances or whether it constitutes a treatment ‘too far’. This narrative review of the literature identifies, categorises and explores the ethical foundations and reasons for clinician hesitancy about the use of LTPN in this population. The categories of reasons are: lack of clear diagnostic criteria for feeding failure; risks of LTPN to the child; burden of LTPN to the family/caregivers; burden of LTPN to the child; difficulty in cessation of LTPN; and the concept that feeding failure may be a preterminal sign. These reasons are all ultimately about risks and burden outweighing the benefits. We argue that the risks of LTPN have decreased over time, the burden for individual children and their parents may be less than imagined, and the benefit is a realistic prospect. Case-by-case consideration, giving due weight to child and parental perspectives, can show that LTPN is ethically justified for some children with severe neurological impairment.