G483(P) ‘hardliners’ and ‘softliners’: approaches to end-of-life decisions for disabled children

Abstract

tubes (NGT) due to sensory processing difficulties. Despite reinsertions under general anaesthesia, he would remove them as soon as he woke up.Due to potential metabolic risks, he was transferred to intensive care (PICU) to be managed under sedation for a period of time. Low dose antipsychotic medication was started, to manage procedure-related agitation that worsened rumination. He learnt to tolerate the NGT upon gradual weaning of sedation. The severity of rumination improved and his weight stabilised. He was transferred back to his local hospital on a weaning sedation plan. However, rumination recurred with discontinuation of his medications.He was readmitted to PICU and rumination was re-stabilised under IV sedation. Following multidisciplinary team discussion (involving liaison psychiatry, general paediatrics, intensive care, gastroenterology and surgery) a gastrostomy was placed to break the cycle. Eight weeks on parenteral nutrition and gastrostomy feeds gave his upper gastrointestinal tract time to recover. He is currently feeding orally with minimal rumination. The gastrostomy is being used for medications and fluids. He has returned to his premorbid level of functioning, and his weight is stable. Conclusion Gastrostomies have been used in children with intellectual disability and 'avoidant and restrictive food intake disorder' linked to autism. This case, however, presented additional challenges due to the severity of rumination with sensory processing difficulties, and tested the ethical limits of intensive care. Management in these cases must be multidisciplinary, with the adolescent's best interests at the centre of decision-making.Background NICE has produced recent guidelines for the management of Cerebral Palsy in the under 25 s. It recommends every 'child or young person and their parents or carers [should be] provided with information, by a professional with appropriate expertise, about fertility and contraception, sex and sexuality, parenting and menstruation relevant to them that is tailored to their individual needs. Aim To audit our practice according to the NICE guidelines. To determine whether young people with Cerebral Palsy and their families are being provided with this information and whether they would want further information related to their sexual and reproductive health. Method A survey was sent to all young people older than 11 years seen in our hospital's movement disorder clinic. The survey asked whether, in a healthcare setting, they had been spoken to about their sexual and reproductive health. The survey also asked whether the young people and their families would find an information leaflet on these topics useful. Results Forty-two young people were identified to fulfil the criteria, with GMFCS ranging I-V. 40% of questionnaires were completed. Only two respondents (12%) had been asked about some aspect of their sexual or reproductive health in a