• Kerstin Hein, Kathrin Knochel, Vedrana Zaimovic, Daniel Reimann, Anna Monz, Nari Heitkamp, Gian Domenico Borasio, and Monika Führer.
• Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.
• Palliat Med. 2020 Mar 1; 34 (3): 300-308.

BackgroundAlthough international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning.AimThe study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.DesignThe study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis.Setting/ParticipantsWe included bereaved parents, health care providers and stakeholders of care networks.ResultsKey elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge.ConclusionA paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

14 keywords...

hide…