Table 3 Presuppositions about palliative Care and palliative care referral

Self-efficacy and acknowledging own limitations

Symptoms like constipation, loose stools, some headaches, body pains. I think those are symptom care issues we as clinicians are trained to do that and we kind of manage it quite all right. (P 020)

The pain management that we were giving in the end-stage was not good enough. The sedation that we were giving was not good enough, and I just felt that we were doing a very bad job. (P 016)

The mother told me that it’s okay if he dies, because at least I have got somebody to listen to me and to my child [referring to the palliative care team]. So that was the first time I realised that we don’t really speak to them well. (P 011)

Client feedback as a mechanism to validate action

When somebody comes back, they themselves are in a very traumatic state to lose a child. And within a couple of weeks of the child’s funeral, to come back, seek us out and specifically mention what went well. It’s not just a general thanking, it was specifically about the care the boy received when he was dying. (P 007)

Parents of some of the children who died came and thanked us which is very unusual. (P 001)

Trust and trustworthiness

You need to know whether they are going to do a good job of taking care because you have been taking care of them for such a long time. (P 016)

So, faith in their competence is important (…) I would refer to somebody, but if that person is not very good then it is not helpful, it makes a huge difference. (P 007)

They should have a paediatric perspective of dealing with care or symptom control (…) Dealing with a child is always different than dealing with an adult. (P 017)

We are trained to look at things objectively (…) The response rate is 56% versus 63% (…) The overall survival is 90% versus 95%. Even if it’s not the same language used in palliative care, probably that clarity of thoughts is not present. (P 014)

They were not wholeheartedly in it (…) I felt a lot of lack of empathy in there (…) the parents have come back and told me that it’s better that you handle this than them (…) I feel the compassion is a big thing in palliation. (P 003)

Power relationships

We are always a little more one level higher (…) A shared care concept has not come in (…) It’s more like I’m referring a patient to you, and you do what I want you to do and take care of them because of the seniority and also one is DM [highest subspecialist qualification in oncology], the other one is a DCH [basic diploma in paediatrics]. (P 011)

They don’t deliver what I think they should deliver. Then I would not refer to them. (P 019)

Hurt of ending the therapeutic alliance

It is that kind of a feeling that you’re handing them over to somebody else, but you’re not sure whether they will take the same care of them and whether they will form the same bond with them. As I said they are like family. So, you know, it feels like you are handing over your part of your family to somebody and telling them, now you take care of them, but you always wonder whether they are doing a good job of it. (P 016)