Chapter 7 146 “(…) that on the basis of this, by reading about the subjects, you actually start thinking about them, you start talking about them more, like ‘what do you think?’” (daughter of patient 4) Two participants said that the QPL helped patients to think about and to report their end-of-life wishes, and it is important not to leave this to their family. Patients and family felt that the QPL enhanced a sense of control by informing them, structuring their thoughts and questions, lowering thresholds to discuss matters, and supporting reporting end-of-life wishes. They often had experienced loss of control because they regarded themselves as knowing nothing about palliative care and palliative care consultations. “(…) for us, it was actually the very first time we thought about palliative care, and we really had no idea what to make of it.” (patient 4) Additionally, their minds were often occupied with many questions, their palliative diagnosis, and the elusiveness of their future: “I wasn’t lying there for the fun of it. There was a lot of stuff going through my mind.” (patient 8) Asking their questions helped them to gather concrete solutions for current and future problems: “Yes, and with the answers I now have a better idea of what I am in for. (…) you know what to expect, and what you can do, and what you need help with and how that works.” (patient 17) “Maybe later, yes, then this can, you have something to hold on to [indicating the QPL].” (patient 14)
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