Table 4.
Codes and discourse of patients and relatives on the need for communication during the end-of-life process.
| Dimension | Codes | Cites | Informant | Discourse |
|---|---|---|---|---|
| Communication | Conspiracy of silence | 10 | Patient | PA14: “From the beginning, I felt like something didn’t quite fit. He didn’t have much information. There have been times when he has felt that things were being saved. I understand that they wanted to protect me, but the lack of transparency also led to anxiety and confusion. I would have preferred to be spoken to sincerely to process reality together. In the end, open and honest communication is what is really needed to deal with this situation in the best possible way”. |
| 7 | Relative | FA3: “I didn’t want her to find out anything so she wouldn’t suffer… what I found difficult to understand that she also knew everything without telling her… But everything comes when you have professionals next to you who know what they do. A disease like this does not let you see reality It is a very big suffering to see the person you love most in the world suffer, always keeping in mind that the end is near…”. FA20: “This lack of communication did not allow him or us to express ourselves, which made everything that was happening even more difficult…”. |
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| Express preferences and concerns | 14 | Patient | PA3: “I know that talking about death is difficult, but I want to express my thoughts and desires without restrictions, although I notice that sometimes they are not prepared to hear it”. | |
| Loneliness | 6 | Patient | PA5: “There were times when I craved a candid conversation about what was happening, but silence seemed to envelop everything. I understand everyone was trying to protect me”. | |
| Autonomy | 6 | Family | FA13: “That morning when the situation was no longer enough, they explained to my mother-in-law what was happening, the symptoms could not be controlled and the best option to reduce suffering was sedation. I shook my mother-in-law’s hand and asked her if she agreed. She nodded to me yes and it all started…. I didn’t want to (sob), we are very selfish and we want to keep her by our side despite everything but when you see her suffer so much… you understand that this cannot go on like this”. |
Source: own elaboration.