Chapter 4 82 Patient in charge -) “I think anyway regardless of the disease also diabetes or other diseases it is important to think about what you want for yourself and what you do not want and make that a topic of discussion” (26) Culture/ family and loved ones “But if it is that moment, and maybe you are too late, then my husband should decide (…) he knows very well what I want and what I don’t want” (7) “it is something you together, if you make a decision your family has consequences of that as well (...) see my father is a kidney-patient and he dialyses three times a week (…) so, he has a do not attempt resuscitation. He did discussed that with us and we respect that”(18) Because unexpectedly you can get into an accident resulting in being unconscious and then somebody else should know how you want it”(33) Physician Open and sensitive communication “In -if possible but yeah those doctors are not all equally empathic and you name it- but in a friendly, calm and clear way” (23) Physician initiates “what comes to my mind is that it is well how should I say it a necessary topic could be what comes up in the conversation with a physician the moment there is a reason for it eh yeah given the disease development of the patient” (41) “because then the physician makes it discussable, because probably a lot of patients are not thinking about this yet”(15) Discuss “I think that is important I think you have to know what the options are but also that the doctor knows how you feel about it”(1) Knowledge deficit “You really need the doctor for that (…) I have no idea about that and I don’t know what the costs of that are, the costs in pain and in discomfort it gives the patient for example” (28) * Some quotes relate to more than one (sub)theme, as for example the quote marked with an Asterix from interview 40 relates to both definite choices and is a treatment worth it? 3.1 End of life Most patients shared a deep conviction that care decisions are about the endof-life. They associated it with ‘a certain age’, ‘a bit older’, ‘terminal cancer’, ‘terminal illness’, ‘your last phase’, ‘the end-of-life’, ‘a severe illness’, ‘very sick’, ‘dying’, ‘life-threatening’, a bad diagnosis or prognosis’, ‘people who are worse’, and so on. As can be seen in these examples, some patients explicitly connected care decisions to the ‘last phase’ of life, or a certain illness. Others described it more vaguely as ‘something for later’, without being able to exactly indicate when ‘later’ will be. This basic attitude towards care decisions, i.e. it belonging to the end-of-life, results in two subthemes: sensitive topic and currently irrelevant. Table 1. Continued
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