A patient’s perspective on care decisions 83 4 Sensitive topic Patients described the topic of care decisions as a sensitive topic. Because they associated the topic with the end-of-life and dying, they characterized it as ‘difficult’, ‘not a fun topic’, ‘precarious’, ‘a tricky subject’, ‘sensitive’, ‘heavy’, ‘loaded’, ‘confronting’ or ‘threatening’, and articulated feeling hesitant to talk about it. Patients expressed this is especially the case when it is unclear to them why the subject is discussed, or why they received the patient education. This makes sense in the light of the end-of-life association: when the topic is brought up, the patient thinks this implies they are at the end-of-life. In this way it might give the impression of being sicker than expected or getting an unfavourable test result, which can make them anxious. A few patients assumed discussing care decisions was (mainly) about whether or not to resuscitate, which could be contributing to the sensitivity of the topic. Currently irrelevant Patients perceived care decisions as a ‘far-flung’ event. The majority of patients identified care decisions as not relevant for themselves, at least not at this moment in time, because they did not consider themselves in that phase of life. They described it as ‘not really necessary yet’, ‘just not relevant’, ‘does not apply’, ‘ it is not on the agenda at the moment’, ‘too early’, ‘don’t really care too much about it yet’. The exact moment they believed it does become personally relevant varied. This is best summarised as: ‘when it gets a little closer’, and can be explained by the fact they related it to the end-of-life. This perceived current irrelevance is reflected in the evaluation of the patient education: patients assessed it as unhelpful in forming an opinion or discussing care decisions, because they felt they did not need to form an opinion or discuss care decisions yet. 3.2 Definite choices The second theme that represents a deep conviction is definite choices. Thinking about care decisions, discussing and talking about it and making choices seems to be irrevocably linked to the definite documentation of these choices in the electronic health record. Some patients saw this as an advantage: the physician is aware of the patient’s point of view in case of an unexpected situation in which the patient cannot express his opinion. On the other hand, however, several patients were hesitant towards discussing
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