wisely to our paediatric patients, treating each child as an individual, selecting our management options carefully and adjusting them where there is no evidence of individual benefit. Key points Respiratory symptoms at the end of life are common, distressing and have a lasting impact on parents, yet research into their management is lacking Current management is based predominately on adult studies, often in specific disease groups that bear little resemblance to the paediatric population Even within adult studies, strong research evidence for the management of common paediatric symptoms (dyspnoea, cough and retained secretions) is lacking and it is difficult to extrapolate this data into recommendations for paediatric practice There is an urgent need for well-designed multi-centre paediatric studies to demonstrate the efficacy of commonly used interventions and the impact on the child and quality of life. family’s In the absence of a paediatric evidence base, each child must be treated individually, based on best practice derived predominately from adult studies, with treatment tailored according to observed individual benefit. References 1. Rapoport A, Shaheed J, Newman C, Rugg M, Steele R. Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-of-Life Care. Pediatrics. 2013;131(5):861-9. 2. Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, et al. Parental Perspectives on Suffering and Quality of Life at End-of-Life in Children With Advanced Heart Disease: An Exploratory Study*. Pediatric Critical Care Medicine. 2014;15(4):336-42.
wisely to our paediatric patients, treating each child as an individual, selecting our management options carefully and adjusting them where there is no evidence of individual benefit. Key points Respiratory symptoms at the end of life are common, distressing and have a lasting impact on parents, yet research into their management is lacking Current management is based predominately on adult studies, often in specific disease groups that bear little resemblance to the paediatric population Even within adult studies, strong research evidence for the management of common paediatric symptoms (dyspnoea, cough and retained secretions) is lacking and it is difficult to extrapolate this data into recommendations for paediatric practice There is an urgent need for well-designed multi-centre paediatric studies to demonstrate the efficacy of commonly used interventions and the impact on the child and family’s quality of life. In the absence of a paediatric evidence base, each child must be treated individually, based on best practice derived predominately from adult studies, with treatment tailored according to observed individual benefit. References 1. Rapoport A, Shaheed J, Newman C, Rugg M, Steele R. Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-of-Life Care. Pediatrics. 2013;131(5):861-9. 2. Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, et al. Parental Perspectives on Suffering and Quality of Life at End-of-Life in Children With Advanced Heart Disease: An Exploratory Study*. Pediatric Critical Care Medicine. 2014;15(4):336-42.