Table 2 Definitions of PPC

a) Positive definitions

i.) PPC is gold standard (WHO)

For me palliative care means comfort care, holistic care, it means taking care of the child and his/her family in a physical and psychological sense; total care of the entire family. (Nurse, speaker 2, center 1)

It really means «not to abandon» … to provide palliative care is something very active, to stand by all the life projects until the very last second. (Nurse, speaker 1 with PPC specialization, center 2)

The most important thing is really the quality of life and (...) to create a network for families, for the whole family (...) important is also to collaborate and to have a multidisciplinary team. (Nurse, speaker 3, center 3)

For me it is important that the persons who cared for the patient before do not just disappear and leave the patient alone (…) but that the contact remains until the end and even beyond the end, ideally. (Physician, speaker 1, center 5)

b) Ex-negativo definitions

i.) PPC is not end-of-life care

To me it is quite clear that palliative care is something for the child (…) within a comfort approach and with the aim of increasing the child’s quality of life. But it does not necessarily imply the imminent end-of-life. (Nurse, speaker 4, center 2)

End-of-life care starts normally during the last 4 weeks, but PPC starts of course much earlier. (Physician, speaker 1, center 4)

ii) PPC is not curative treatment

[PPC] is the total care of a pediatric patient from the moment one knows that the oncological disease is incurable. (Physician, speaker 5, center 1)

In some other areas of PC it is different – in the case of a chronic condition the child cannot be cured anyway. In oncology, however, we always start with a curative treatment, but then there are situations (…) in which we say: we cannot cure the child (…) and then there is a switch to palliative therapy, which can take a long time, but then we know that the child will die either of the illness or the treatment. (Physician, speaker 1, center 3)

The shift from curative to palliative, I think that in Switzerland that is very different from the UK where palliative care teams are integrated from the time of diagnosis (…) until there is still hope for a cure, that they will find a treatment ... Here [in Switzerland] they will not consider them [patients] palliative. (Nurse, speaker 2 with PPC specialization, center 2).

iii.) PPC is not an abrupt shift

It’s true that from a medical point of view there is never an abrupt shift from a curative to a palliative approach, there is always a transition phase (…) often the family and the patient, but maybe physicians too need such a transition time before coming to terms with the fact that the child will not heal. It’s not something on/off. (Physician, speaker 5, center 1)

The decision-making regarding the shift from curative to palliative treatment, is a process (…) in which one goes back and forth, in which one is not fully certain … it is not a fixed point in time. (Psycho-oncologist, speaker 5, center 4)

c) Definitional problems

i.) Disagreement on the meaning of PPC

I do not agree. For me curative and palliative are not in opposition, or consecutive, they are often rather concurrent, especially in the case of our patient group [pediatric oncology] where once the one aspect then the other one can be more important. (Physician, speaker 3, center 4)

ii.) Acknowledgement of various definitions

I believe that you can understand many different things under palliative care and that is precisely the problem. (Physician, speaker 2, center 4)

i.) Uncertain timing due to definition

The shift from curative to palliative is not that clear. From when can we say that a person is in palliative care? In practice this passage is not so clear to me. On the other hand what palliative care stands for I think is very clear here [to professionals in the hospital] (Social assistant, speaker 2, center 2)

ii.) team discussions due to unclear definition

I still find it really difficult to say that now a patient is palliative or not. (…) I really notice that nurses and doctors often have a different view on the whole. Sometimes we do not immediately find a consensus. Maybe the concepts are not clear (…) I remember the last big roundtable we had over a difficult case in order to all have the same understanding and to bring in ideas in order to know: “what next”? (Nurse, speaker 4, center 5)

It [PPC] was introduced quite late in the service (…) in some situations the children felt more and more uncomfortable, they had a poor quality of life and the nurses were the ones who shouted: “Help!” (…) (Nurse, speaker 2, center 1).

The individuality within the team, the different values, the different attitudes towards life, are often not explicitly made (…) what remains unsaid can create barriers (…) it can lead to fractions or different fronts, without it being made explicit (Psycho-oncologist, speaker 5, center 4)

It’s [PPC] about human perceptions and everyone has their own perception and suddenly, when we change the therapeutic goal everyone is put into confrontation (Physician, speaker 5, center 1)

iii) need to overcome conflicts

Consensus is absolutely necessary (…) you have to try to find it. Which way do you want to go, how do you want to go there? (…) perhaps you need to get together two or three times. Even if you want to avoid conflicts (…) you have to face them (Physician, speaker 1, center 5).