Dunja Dreesens

107 Table 2: Illustrative quotes on possibility (or desirability) of CPGs enhancing the practice of SDM THEME POSSIBILITY (OR DESIRABILITY) OF CPGS ENCOURAGING THE PRACTICE OF SDM ILLUSTRATIVE QUOTE INTERVIEW # Useful/helpful “Perhaps it could help a clinician who is SDM-minded, but doesn’t dare. I mean, if you aren’t experienced in palliative care yet, it can be quite, um, scary.” 3 “Sure, especially when it comes down to points of disagreement, it can be helpful to choose a certain direction. In other guidelines, it is mentioned explicitly that you need to check with other specialists before you proceed. And with the patient and parents, of course. ” 4 “For some aspects, it could be the case that you yourself don’t consider them, or that you are partial to certain things. But by mentioning all the aspects in a structured way in the guideline and discussing these with the patients, all topics that matter are covered.” 12 “If you go through a list the patient probably thinks that you are a meticulous doctor who makes sure to tick all the boxes. However, it can also appear as being callous because it is not a conversation, you just go through the list.” 3 “It must be useful when your peers have thought about it and decided to add recommendations on SDM, to support you or make it easier for you to do it yourself.” 11 “It means you can adhere to the guideline more often without you having to explain time and again why you didn’t adhere.” 14 Guidelines are paternalistic “A guideline will not immediately contribute to SDM. SDM depends on communication. And a guideline can obstruct that, as it says ‘do this’ and some people will claim that they are legally required to follow the guideline.” 13 “Often guidelines say do A, B or C. They don’t say consider A, B or C because there’s the same amount of evidence. And if it would say consider A, B or C then you can discuss it with the parents.” 1 SDM is an attitude/skill “You don’t need a guideline on how to have a conversation.” 9 “If doctors don’t do SDM, a guideline will not make them do SDM.” 1 “I think that the way you involve the parents is ‘the art of medicine’ and not medicine. So, I think it comes down to the competencies of the doctor. You can’t capture those in a guideline.” 2 SDM irrespective of guideline subject “I don’t think it will help to integrate SDM in the guideline. A guideline helps when there’s no common sense. This is common sense.” 10 “Maybe we need a guideline on SDM; namely involve the parents and the patient with every choice concerning their care. These two lines, easy as that.” 1 Chapter 6