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.

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

“…Clinicians who take these factors into account when discussing the future with parents, might create more openness and deeper insight in parental preferences and underlying values. Ongoing research continues to report that key barriers for ACP as perceived by clinicians, are, in their perspective, related to parental factors [8]. Our study illustrates that those perceived barriers need to be approached from a different point of view.…”

Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit

“…6,7 Barriers to ACP in paediatrics have included the fear of causing emotional distress in families and difficulties identifying the right time to start. [6][7][8] A growing number of programmes that support the implementation of ACP have been reported in palliative care. 4 These interventions have mainly focused on adults and might need adjustment for use in paediatrics.…”

‘Survey of paediatricians found them to be involved in advance care planning’: Are we there yet?

“…Because of the huge lack of robust paediatric ACP research, I was eager to read the study by Fahner et al in this issue of Acta Paediatrica . The authors present the results of a survey of 207 paediatricians from six university hospitals in the Netherlands.…”

“…The Fahner et al study showed that most topics related to ACP were not discussed with the children themselves. The most commonly discussed topic was their joy in living and even this was only discussed in 19% of the cases.…”

“…The authors concluded their paper by stating that interventions to support ACP in paediatrics need to focus on education for healthcare staff . They should be taught both the concept of ACP and the role that the child plays in it.…”