A patient’s perspective on care decisions 81 4 and irrelevant for the patient at this moment in time. The perceived ‘definiteness’ makes some patients hesitant towards discussing the subject. One of the more practically orientated themes is: (3) (when relevant) care decisions are about balancing whether a treatment is ‘worth it’, in which several subthemes carry weight: quality of life, culture/ family, being informed and patient in charge. The final (also more practically orientated) theme is (4) the physician. Patients assign the physician a key role in the care decision process. To show this important position we visualized the physician as the wheel that moves the process along. Table 1 shows illustrative quotes for each (sub)theme taken from the interviews. We dig deeper into these themes and the connected subthemes in the following paragraphs. Table 1. Quotations illustrative for the theme’s End of life “Oofh (laughter) yes then I think about the last phase (…) suppose you are terminally ill or there is no more treatment possible, then you start thinking about this stuff (…) Yeah (laughter) I- you don’t start thinking about this stuff when you’re healthy and when there’s nothing wrong” (37) Sensitive topic “I walk away from that kind of sensitive subjects” (12) “otherwise I think people feel like oh why do I receive this, why does he say that, ouch” (40) “Because it’s about a precarious thing, you can die or not, do you want to be resuscitated or not.” (39) Currently irrelevant “it was not really relevant, it did not come up, because I visited for a silly cholesterol-story and there was nothing life-threatening about that (…) I can imagine if I ever get a diagnosis like madam you have cancer and it can take a few more years but, etcetera. That then I would think about things like that” (36) Definite choices “it depends on many factors and how you are at that moment and what happens, to record this now already I think noh”(40) * “I would not want to have answers to this recorded in my medical file because you can absolutely not oversee how you would react in certain circumstances or would like to react” (5) Is a treatment worth it? “you state your own boundaries for whether you want to be treated and what is acceptable concerning side effects and what not” (43) “it depends on many factors and how you are at that moment and what happens, to record this now already I think noh”(40) * Quality of life “but if the quality of life is so low then I think you should have the right to say well until here, no further” (42) Being informed “Of course I am unaware of what all possibilities are and what its limitations are”(28) “But I think it is nice to be able to put the possibilities in context” (1) “I think that it starts with such a patient education, through which eh based on the information you receive eh yes actually get the knowledge to first check for yourself, gosh what is my point of view, how do I think about that” (41)
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