Table 2.

The four dimensions of the best interest standard and shared decision-making

Dimension	Exemplary quotes
Attitude	FGB1: “It’s about helping parents to find the best, to find out what they want for their child and what wishes they have.” C36: “Some families have religious objections to the concept of brain death and so may still feel that withdrawing extracorporeal membrane oxygenation is equivalent to killing [their child].” A12: “The social components in which children will grow up vary a lot; you cannot generalise. I think there are so many factors, not just the decision to operate or not, but also the way a child develops.” C40: “Some families, they just want time, it does not matter to them, [...] it’s like they just search for religious faith. No matter what historical, cultural beliefs they have, they feel they need to have that person there, even if that person is just literally only smiling, every now and then, and they love that child, they love that child even until they are in their 30s they love that child.”
Optimal choice	A6: “The BIS aims to support a child’s spiritual, physical and emotional development in an optimal way.” A5: “The maximum is not possible, but one must try to facilitate the optimum of all things feasible.” A12: “How parents cope with a certain problem, how parents communicate a certain problem to their child altogether plays a much more crucial role than simply the decision for or against surgery.” C40: “I used to be against [prolonging life based on cultural beliefs], and now, I’m like, you know, we have the ability to help them and to be with them and that’s what we should do.”
Harm	C31: “The bottom line is, I guess, if it’s thought to be clearly harmful then we are dealing with a situation of medical neglect or abuse essentially and that would call for the legal standard, but at that point […] there would probably be an ethics consult […] to try to resolve the difference in view between families and staff.”
Process	A5: “It’s not about simply the best, it’s about finding something better for this child, [it’s about] a process and about progress.” C33: “Shared decision-making from my perspective is part [of] everything that we do.” B21: Patient: “They tell me what they plan to do and so, and they ask if I can do that and hmm, that’s actually good.” A9: “The interest of a child [in a futile situation] is not to die in a traumatic setting. Therefore, if parents agree, a psychiatrist and the palliative care team should be involved, for not having an emergency but facilitating a process – even if only for some hours or a day, that makes a huge difference for all people involved, the siblings, the family, for everybody.”