Dunja Dreesens

101 Background It is estimated that 750-1,000 children with a life-threatening illness die each year in the Netherlands and 5,000 children are diagnosed with a life-threatening illness (245). Of the 1,200 Dutch pediatricians, 60 pediatricians (being part of pediatric palliative teams in university medical centers) regularly encounter children with a life-threatening disease. Most Dutch pediatricians – and other healthcare professionals – infrequently encounter children who are in need of palliative care, making them less sure how to proceed in these cases. Moreover, a life- threatening illness has an enormous impact on both the parents and the child. The pediatrician can help in coping, and counseling on treatment related issues as well psycho-social aspects should start as early as possible. Furthermore, new developments in pediatric palliative care and limited knowledge thereof among pediatricians led to unwarranted practice variation (245, 246). The Dutch Association of Pediatricians therefore deemed it necessary to develop the clinical practice guideline (CPG) Palliative care for children to improve the quality of care for these children. The objective of this guideline is to provide pediatricians support and guidance when caring for children with a life-threatening disease. The guideline was published in the summer of 2013 (247). The introduction of the CPG Palliative care for children stresses the importance of knowing and discussing the needs of the patient and his or her parents. In addition to palliative intervention recommendations, the guideline consequently also contains recommendations on communication and shared decision-making (SDM) (see Box 1) (247). The underlying assumption of SDM models is that the doctor-patient relationship is based on mutual respect and on a joint interest to achieve the most beneficial outcomes for the patient, with partners sharing decisions. In this process it is important to understand the patients’ preferences and values, and to acknowledge the doctor’s expertise (248). However, it is still unclear if and how SDM can be incorporated in CPGs (199, 249-252). Van der Weijden et al described how guidelines can be adapted to facilitate SDM, e.g. by incorporating patient-centered questions, flagging recommendations for which considering patient preferences is particularly important, or by embedding relevant patient support tools (249). The Institute of Medicine recommends including patients in the guideline panels to address heterogeneity in patient preferences and include trade-offs in recommendations (157). Prior to 2013, only a few guidelines tried to do this (253-255). Sharing decisions in pediatric care is triadic in nature as parents or other care givers may be as much or even more involved as the child (256). Furthermore, in the Netherlands children have a right to be involved in deciding about their care from the age of 12 years (257). A majority of both parents and children prefer to participate in treatment decision-making and consider it an essential component of quality of care, together with relationship building, demonstration of effort and information exchange (258, 259). Chapter 6