Dunja Dreesens

108 SDM integrated in guidelines Several options exist to address SDM in a guideline. The PCFC guideline opted to add recommendations on (shared) decision-making in the guideline as a separate chapter (see Box 1). The participants were asked how they felt about the innovative section on decision-making in the guideline. A participant noted that the recommendations on (shared) decision-making could help prepare the discussions with the patient/parents, and could help to put the patient in a social context. Several of the participants thought that most of the SDM-recommendations stated the obvious and that experienced pediatricians already practiced this. However, others said the recommendations might be useful for pediatricians who are less experienced or a bit hesitant. One participant indicated that the SDM-recommendations are valid for pediatrics in general and therefore need not be in this guideline. He suggested developing a separate guideline solely on SDM in pediatrics (see Table 3). Modifying a recommendation into an SDM-recommendation When showing the participants, the original single-option recommendation on pain relief and the modified multiple-option recommendation from the symptoms’ section of the PCFC guideline (see Appendix 1), most participants preferred the modified recommendation. The modified recommendation was viewed as beneficial to engage patients/parents in the decision-making by showing considerations that are important to the patient/parents (Table 3). According to one participant the usefulness of the short, single-option recommendation versus the longer, multiple-option recommendation depends on the context, e.g. in acute or neonatal intensive care, the original – shorter – recommendation would be more useful. Views expressed by the participants working in neonatal intensive care reflected this notion. Table 3: Illustrative quotes on added value of SDM integrated in CPGs THEME ADDED VALUE OF SDM INTEGRATED IN THE GUIDELINE PCFC AND GUIDELINES IN GENERAL ILLUSTRATIVE QUOTE INTERVIEW # SDM-recommendations in guideline PCFC “I feel that a disadvantage of this guideline is that, even though it is corroborated by evidence, that the recommendations state the obvious.” 1 “If you write it down in such detail, I would like to know the added value for myself. What’s in it for me when I have to deal with a high complex situation? However, do I think everyone applies these SDM- recommendations all the time in practice? No.” 10 “If you are inexperienced, you can read these SDM-recommendations. I think it’s nice, but they are not really practical.” 3 Modified multi-option(SDM) recommendation “It’s more agreeable. Also, because it contains the lines of reasoning.” 6 “It provides more information, more possibilities to consider.” 11 “This does represent the actual situation you’re dealing with in practice. Do you as a doctor take the lead, or do you provide more options? So that the parents are in a position to choose as well.” 7 “For the more complex decisions, of which there many in palliative care, it is beneficial to indicate the whole spectrum of care.” 12 “It will probably, even if it’s only subconsciously, prompt you to explain more to the parents, such as harms and alternatives, because it’s right in front of you.” 5 Chapter 6