Dunja Dreesens

111 views expressed by the participants seemed to confirm that mainly the non-treatment related decisions where shared, or the less ‘serious’ ones. Combined with the situation that the clinician ‘decides’ which information to share with a patient, the stage for SDM is not ideal (69, 270, 274). The intention of the Dutch Pediatric Association was to potentially enhance the practice of SDM in pediatric palliative care and to do so by integrating SDM in the guideline PCFC. Therefore, recommendations on SDM were included in the guideline and the necessity of SDM was explained in a separate chapter. However, these SDM-recommendations have not been integrated in the treatment related recommendations. The integration of SDM could be done e.g. by re-phrasing these recommendations to increase option awareness and/or to include patient preferences. Other possibilities are to structure the deliberation process and describe it more explicit in the guideline, and/or providing patient support tools (275). These tools could be linked to a specific recommendation or to the guideline as a whole (249). In the current format, the guideline might not encourage the interviewed pediatricians to involve patients/parents when talking about treatment choices which might inadvertently contribute to SDM only being used for non-treatment related decisions in children’s palliative care. Participants were open to recommendations related to an SDM-approach to treatment decisions (i.e. structuring the options in a recommendation to increase option awareness), as was shown when we discussed the modified recommendation on pain relief. More than half preferred the ‘SDM’-recommendation because it can help open the discussion, it shows underlying arguments for different treatments, such as pros and cons, and it enables patients and/or parents to choose. Recommendations such as these are preferable according to the Institute of Medicine (IoM). In its report ‘Clinical practice guidelines we can trust’, IoM suggests refraining from so-called blanket recommendations: a recommendation for all patients to choose one particular treatment, irrespective of the patient’s characteristics, preferences and values. IoM recommends to describe the options and trade-offs in a recommendation encouraging SDM, as its respects the individual choice. In this way guidelines, according to IoM, become tools for patient engagement and activation (157). The last couple of years more CPGs are being developed in which recommendations address trade-offs and mention more than one option (199, 209, 276-278). Another strategy to adapt guidelines so that they could enhance SDM is imbedding patient support tools – such as PDAs – in CPGs. The majority of participants thought that a guideline (recommendation) accompanied by a PDA would be beneficial to engaging patients and sharing the decision-making. Systematic reviews have shown that the use of PDAs supports patients to engage in deciding about their care (279). Our interviews suggest that the use of PDAs could also help pediatricians to check if they have covered all the topics (PDA as a checklist) and address issues they would normally forget or not consider important. Another benefit of PDAs mentioned by pediatricians was that patients can take the PDA home and reread it. Patients often do not remember everything when talking with the clinician, and by taking it home they can weigh the pros and cons in a more comfortable and less time-pressured setting. PDAs can also help patients to ask questions, as patients not always dare to ask their pediatrician everything (280, 281). The pediatricians who were not convinced of the benefit of a PDA Chapter 6