Table 3.

Illustrative quotes of goal-directed conversations, anticipated care, and guidance on the job taken from the interviews

Aspects of goal-directed conversations
Goals
Parents	MD, case 23, father: For me, he (son) does not have to suffer pain. In the end that is not what we want. […] We have indicated to the oncologist that in case something happens and he has to be resuscitated, that we do not want that because he will not survive it well. […] We really chose quality of life.
HCPs	MD, case 20, pediatrician: I discussed in the beginning, whether she would go to an ICU, [have] a DNR order. Parents were both very clear about it, which made it easier for me, no resuscitation and aiming for comfort.
Parents’ varying strategies to cope with anticipated loss
Parents	NMD, case 7, mother: Now that he is in such an advanced stage of the disease, and possibly because of my own character, I need to know [what I can expect in the future]. I do not live in the future, but I need to know, I need to understand. I somehow need to prepare myself, because for me it is also important to touch [the future] and see how that feels, because I have the feeling that if I do not do this, I will not survive the blow that is coming.
HCPs	MD, case 13, pediatrician: The father’s character is one of ‘what if, what if’. And the mother is much more the one who says ‘yes, yes’, and who gives me the feeling that she sometimes would rather not talk about it. They are two different people in this respect. It happens that father addresses me separately, he does a literature search […] and refers back to parts of the talks we have had before.
Framing
HCPs	MD, case 5, pediatric oncologist (after marking end of curative phase): What I usually try to do is a sort of looking ahead. The emphasis will often lie on the first weeks, but […] we always [try] to make a sketch of later phases. […] And later we go into those more deeply, when they are ready for it, but it is good to know that that phase will come, that we sometimes already have to take measures for that now. But talking about this also helps, […] to already prepare them for it. The next time we meet, I’ve noticed parents come back with a lot of questions. And in such a way you color in the drawings more and more, the closer it gets.
Revisiting discussions on future treatment
Parents	NMD, case 8, mother: I feel that Pim [son] is doing better than [the doctors] ever expected. So, then I believe it [decisions] should be adjusted, not regarding not resuscitating, […] if the heart would stop, it stops and then you might create more damage [if you would resuscitate]. But for example, with intense pneumonia, and you think he just needs help a little longer, then I would like him to be given supportive respiration.
Anticipated care
Closed
Parents	MD, case 5, father: The conversation with the lady working at the funeral company, I initiated it myself because I found it important to start with that on time. So, I looked for contacts in the neighborhood and it [meeting] was organized in a flash. And she [funeral organizer] found it very valuable, despite that it was a very unclear trajectory, […because] they could think ahead already now, or Pieter [son] can indicate for himself what he likes.
HCPs	NMD, case 18, PPCT nurse: At some point, he [child] will be able to do so little that he will give up. […] And I think that when certain things are no longer possible at some point, he will quit. I hope that that will still take some time, but it is not for him to get into a vegetative state […] My goal with him is, maybe a bit weird, [but] prepare him for death. I would want and [organize] someone [to] get into contact with him about the nearing end and the process of losing all that he could do.
Open
Parents	NMD, case 21, mother: During the last admission, […] I said then [that] I just do not dare take her home before I learn how to do deeper suction and how to resuscitate. Because when something happens to her [daughter], I want to be able to do something. […] That was a difficult topic, because the pediatrician was thinking […] how am I sending a parent home, with so many worries. But what is sometimes not understood is that you would send a parent home with even more worries when they are not able to resuscitate.
HCPs	NMD, case 12, pediatrician: Then we thought with the PPCT, what if he has pain, what if he becomes dyspneic, what if he gets a seizure, how will we treat that medically, who will we involve with the care for this patient. […] Then we wrote a palliative protocol together and […] visited the two family doctors […and] made agreements on who would do what. […] And only when you have that clear, you discuss those steps with parents.
Guidance on the job
Parents	MD, case 22, mother (about the further deterioration of her child): I find it comforting that those thoughts occur in steps and that the emotions also surface in steps. You are being taken by the hand [by the specialized nurse of the PPCT] a bit to look at the situation more from a meta level and to think about and make decisions together, for things that will come but not just yet. […] I think that that is good because […] now you can do it in a well thought-out manner.
HCPs	MD, case 5, homecare nurse (when child becomes increasingly dyspneic): He [child] of course did not want anything, he preferred to wait [what would come]. Then I discussed, ‘you [child] are now so uncomfortable, this is not pleasant’. And the parents also said, this is also not what we want. […] We have discussed it, there are many possibilities to make you [child] calmer. So, I am very open and discuss why I want to do it [start with morphine]. But I have also said that he will not die from the morphine plaster. […] Then we gave him extra medication because he [child] was very uncomfortable and told them that we would start the pump tomorrow and possibly tonight if things do not improve.

Some quotes are slightly modified to improve readability. Names are fictitious

DNR do not resuscitate; HCPs healthcare professionals; ICU intensive care unit; MD malignant disease; NMD non-malignant disease; PPCT pediatric palliative care team