Dunja Dreesens

112 claimed that patients did not want to use them (251). Research has shown that patients do want to be involved in (deciding about) their care, and need to be involved (166, 269, 282), including children and adolescents (and their parents) (283-288). Another reason why some pediatricians were not inclined to use a PDA was that they felt they know best what to advise based on their expertise, experience with the treatments and the patient sitting in front of them. This attitude is risky for three reasons; firstly, well-informed patients who actively participate in their care are more satisfied with their decisions (289). Secondly, without using a PDA, the clinician will likely not be complete when providing information to the patient (69, 274). And thirdly, it has also been shown that clinicians are not always correct in predicting what the patient wants (32, 63). Moreover, the preferences of a clinician, from the perspective of being a patient herself or himself, often do not match with what they would recommend the patient (174). Instead of projecting their own opinion on their patients, clinicians should ask what the patient prefers; not only when it concerns treatment decisions but also when it comes to being involved and deciding about their care. Another important finding is that participants were worried about burdening parents with the responsibility of deciding on their child’s end-of-life care if they engaged them in SDM. However, instead of assuming that parents do not want to be burdened with this responsibility, discussing this with the parents, and/or child, acknowledging their autonomy in the decision-making process, seems to be justified and fitting with SDM. Some research has shown that parents want to be the ultimate decision maker for their child (290), and children value autonomous decision-making, without excluding their parents (286, 291). In the interviews the pediatricians used the words responsibility and sharing the decision-making interchangeably. It appears that the pediatricians are not aware that even when the decision-making is shared with the child and/or parents, they have the final responsibility for the decision. This unclarity might make pediatricians wary of SDM when it comes to sharing decisions. Regarding the comments made by the pediatricians that SDM is a skill, and that the recommendations in the PCFC guideline mainly addressed the what and not the how of SDM, the guideline could be enriched with examples of SDM in the pediatric palliative care context. For example, Van der Weijden et al suggest using a vignette describing how a patient and a healthcare provider discuss the options to reach a shared decision, or could provide scripts modelling SDM-language. However, enhancement of the practice of shared decision-making requires more than an isolated guideline which integrates SDM, especially when it comes to skills and attitude. It needs to be imbedded in an overall SDM contextualized effort for SDM to become common practice. Healthcare professionals could be trained, receive feedback on SDM-performance, be facilitated in an SDM-approach, work in organizations which advocate SDM and where there is senior-level buy-in of engaging patients in their care and sharing the decision-making with them (252, 270). Limitations and strengths Limitations of this study are that the findings are limited to the 15 participants and the university medical centers (3) they work at. Even though the participating centers were considered forerunners of SDM, it does not mean that other pediatricians in other medical centers have the Chapter 6