. 2023 Jul 18;15(14):3656. doi: 10.3390/cancers15143656

Table 2.

First- and second-level code categories and illustrative quotations from the responses to the open-ended question.

First-Level Categories	Second-Level Categories	Quotations
1. No idea of what it was	1. Lack of knowledge about PC	“I didn’t know it.” (002-C-069) “We did not know early palliative care before the oncologist proposed it to us. But having explained to us that it was intended for pain management, we immediately accepted it.” (002-C-049) “I don’t know, I was afraid of it because a friend of mine went to a place to receive this treatment and then died in a short time. I was afraid of ending up like that.” (002-P-110) “I was afraid of it because it seemed to me the care for when there is nothing more to do.” (002-P-136)
2. Vague/uncertain idea of what it was	1. Lack of knowledge about PC
3. Identification with end-of-life care	2. Identification of PC with late PC	“(…) we thought it meant that there was nothing more to do.” (002-C-003) “To me, it was something negative, it was like saying there was no more hope, that you were already dead.” (002-P-109)
4. Synonymous of end of life/death	2. Identification of PC with late PC
5. Something/a word to be afraid of	3. Early reaction to PC	“To me, it sounded like something negative.” (002-P-109) “It was a bad word.” (002-P-087) “It was scaring.” (002-C-111) “It frightened me, they even terrified me (…).” (002-P-102) “I thought it was end-of-life care, (…) thus we refused it.” (002-C-017) “(…) I was afraid of it, and I tried to avoid it.” (002-P-140)
6. Something not to do/to reject/to avoid
7. Something to postpone
8. Lack of information in general	4. Lack of knowledge about PC among physicians and population	“Palliative care is a treatment that literally everyone identifies with death.” (002-C-050) “I don’t think anyone knows the difference between palliative care and early palliative care.” (002-C-058) “But to be honest the oncologist didn’t explain it correctly.” (002-C-070) “Well, as a doctor myself, I can say that physicians don’t know early palliative care and that they even consider it unnecessary or at least something they have to apologize for as if they are saying there is nothing more they can do.” (002-C-009) “A friend of mine went to a place to die and told me about this care.” (002-P-124)
9. Lack of information among the population
10. Lack of information among the physicians
11. Attribution of a new meaning of care of life/care of dignity	5. Acquired awareness of early PC meaning and benefits	“To me, palliative care was the equivalent of death (…). This was what I thought before coming here and before receiving it. Now I know this is not true.” (002-P-145) “I thought it was just the treatment they give you when you’re about to die, but then, when I came here, I realized I was wrong.” (002-C-063) “Then we learned that (…) early palliative care takes away the pain and allows to improve the quality of life and to be much more peaceful.” (002-C-059) “Early palliative care allowed me to resolve my great anguish, which was that of not being able to talk about my death. By coming here and talking about it with the doctor, I am more peaceful and even emotionally improved. I’m not saying I’m living without thinking about death, of course, but now I can accept to think about it.” (002-P-145) “And then I think that without this care my aunt would have certainly lived with a very bad quality of life, and she would have also lived much less time.” (002-C-046) “(…) it meant for us salvation and hope.” (002-C-058) “Now I am much more peaceful and my gratitude is huge.” (002-P-132) “If I hadn’t found this care, I wouldn’t be alive now, I had already decided to end it, I mean, to go to a clinic in Switzerland to ask for euthanasia. Now I think I would have done the most wrong thing of my life.” (002-P-140) “This care is what all cancer patients should do immediately, because both the patient and the family enormously benefit from it.” (002-C-106)
12. Impact on life in general
13. Impact on quality of life
14. Impact on physical and/or psychological pain
15. Impact on the idea of death
16. Feeling of gratitude
17. Alternative to euthanasia
18. Acquired awareness of differences with standard PC	6. Awareness of the differences between early PC and late PC	“Then we learnt that it is the opposite of palliative care; this a cure for life and its quality: care for life instead of care for death.” (002-C-059) “Well, in short, this care is very different from the idea we had before we come here.” (002-C-041) “We did not know palliative care before the oncologist proposed it to us. But once he explained to us that it was intended for pain, we immediately accepted it, discovering later that it was much more than pain therapy.“ (002-C-055)
19. Regret for not starting earlier	7. Regret for the delayed referral	“I didn’t know about early palliative care, as we later got to know, but unfortunately, due to the fear evoked by this name, too late. We should have come here earlier.” (002-C-056) “And now I’m very sorry for not coming here earlier.” (002-C-108)
20. Regret for wasting time pondering	7. Regret for the delayed referral
21. Belief that the name is misleading	8. Name as a barrier	“I would change the name, because my family and friends, when I say I attend the early palliative care unit, get worried. Therefore, I prefer to say that I attend the supportive care unit or that I meet the pain doctor. I think this makes them feel more relaxed.” (002-P-137) “I would propose to change the name, because ‘palliative care’ scares everyone.” (002-C-008)
22. Suggestion to call it supportive care/pain care	8. Name as a barrier
23. Belief that it should be mandatory/offered to everyone	9. Need to include early PC in the clinical routine	“If the benefits of this care would be known, everyone would ask for it.” (002-C-017) “(…) which should be proposed to every patient as soon as possible.” (002-C-001) “Moreover, I think that they should be mandatory for all patients with cancer and symptoms, so there would be no fear related to the name.” (002-C-070) “I think they should be mandatory so that the patient comes early. as any other routine visit.” (002-P-146)
24. Belief that everyone would request it if they knew about it	9. Need to include early PC in the clinical routine

Legend: at the end of each quotation the ID of the participant is reported: the first three numbers indicate the unit (002 for the Oncology and Palliative Care Unit, Civil Hospital Carpi), the letter indicates patient (P) or caregiver (C), and the last three numbers indicate the recruitment progressive number.