Table 3 Perceived conceptual barriers & their causes

a) Among parents

i.) PPC equals death, giving up, loss of hope

There are parents where you have the feeling that they do not consent to the palliative care process because they think: «I am giving up on my child». (Psycho-oncologist, speaker 4, center 3)

For many families “palliative” means “death”, whereas palliative care does not mean that you will die. (Nurse, speaker 2, center 1)

The difficulty might be to address the issue of death, but it is also like (…) if we abandon all efforts. For parents this is hard, because they perceive it as “we give up” and it does not meet their expectations. (Psycho-oncologist, speaker 7, center 2)

The last case was a patient who medically speaking was in very bad shape (…) the mother fought with all her strength against the slow change of [treatment] course [from curative to palliative]. She had the impression that we were denying the boy the chance to heal. (Physician, speaker 7, center 5)

b) Among HC professionals

i.) Struggle to accept a next phase

There is much work to do regarding the wording; many things belong to us, to the caregivers, our difficulty to accept that we pass from a curative to a palliative phase. (Psycho-oncologist, speaker 7, center 2)

The concept [of PPC] is one thing, it is a bit the rational part, like safeguards and structures it offers support, orientation and security. On the other hand, you have the attitude of the department … how we [team members] actually experience palliative care (…), what we live (Psychologist, speaker 5, center 4)

a) Reluctance among professionals

i) HC professionals’ fear of PPC

If there is no pain yet or something that leads to palliative care (…) I feel it as an obstacle myself. We are afraid of pronouncing the word and at the same time we do not know how to tell it differently. (Physicians, speaker 5, center 2)

b) Late referral practice

i) PPC as the grim reaper

We only talk about PPC at the last minute; it’s like we sign the child’s death warrant (…). So maybe if we were introduced before, it [PPC] would not have the same effect on the family (Nurse with PPC specialization, speaker 1, center 2)

If we take the definition of palliative care, and ask ourselves whether death is probable, unavoidable within “6 months”, so the speak (…) then I think we do not anticipate the situation enough and then all of a sudden it declines very quickly most of the time. (Nurse, speaker 1, center 1)

c) Diluted meaning of PPC due to integrative approach of WHO

i) No clear distinction leads to confusion

It’s very hard to have a discussion and to state “not everything is lost yet” and at the same time mention “palliative care”. (Physician, speaker 5, center 2)

ii) Total care is always already provided

Holistic care is there already (…) that’s why there is confusion, I think. But ok, that is the WHO definition. Comprehensive care is present throughout the illness course, whether it is in the palliative or curative phase. (Nurse with PPC specialization, speaker 1, center 2)

The concept [PPC] disturbs me (…) I think we have been providing medical care in a humane way for centuries and I do not think (…) care has to be renamed (…) the patients must receive best supportive care from the beginning until the end of life. (Physician, speaker 7, center 5)

What would be the added value, which is currently missing, if one would integrate it [PPC] from diagnosis onward? (…) there is already a total care approach (…) I think there is not necessarily an advantage. (Physician, speaker 3, center 2)

d) Institutional meaning of PPC

i.) The term PPC is not related to the life-world of children

I think the word “palliative” (…) is inadequate in pediatrics because if we place a person of 50 or 60 years old in palliative care, we know that the person will die at an age close to the natural age of death with a palliative care treatment of 10–20 years depending on the type of illness. In the case of a child (…) we will not be able to reach the natural limit. (Nurse, speaker 4, center 1)

We knew that talking about palliative care might constitute a barrier to certain families, but for the public health sector who finances us, it was a must (…) we needed to call ourselves [the service] “palliative”. (Nurse with PPC specialization, speaker 1, center 2)

An important topic is the difference between the life-world of adults and the life-world of children (…) when one in Switzerland talks about palliative care or about its political or infrastructural aspects then one has to be aware that the child is not taken into consideration. (Physician, speaker 2, center 4)

e) Religious & cultural differences

Something that makes it difficult to address palliative care is that 80% of the immigrant population comes from far away (…) with many different cultural backgrounds (…) What does palliative care mean for a Swiss person, but also in the broader sense in the world. Culturally speaking, what does it [PPC] mean? (Nurse, speaker 4, center 1)