Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

Abstract

Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.