A patient’s perspective on care decisions 85 4 aware of the options, one can form their own opinion and become enabled to make choices. One patient mentioned being less overwhelmed when a critical situation occurs if you have thought about care decisions in advance. Patient in charge Numerous patients indicated the importance of thinking about your own wishes. Some viewed thinking about care decisions as beneficial, because it empowers a patient to take control rather than depending on the input of the physician. Patients named ‘being in charge’, ‘taking responsibility’ and ‘being aware of your own wishes’ both as a benefit from the patient education and as a necessity to be able to discuss care decisions. To be able to be in charge, the patient must be informed, as can be seen by the quote of patient 41 in Table 1. Some patients stated they had to be ‘forced’ to take responsibility for their treatment and think about care decisions and said the patient education was beneficial in doing so. Culture, family and loved ones Patients mentioned two more important factors in care decision discussions and decisions: culture and family and loved ones. One patient, from a non-western culture, pointed out differences in directness and openness in communication and the role culture plays in care decisions. Some other patients mentioned the position of family and loved ones in care decision discussions, either as a reason not to make decisions beforehand (because a family member can fulfil this duty when necessary), or as a reason to indeed make decisions beforehand and discuss these with family (so they are aware of your opinion and not burdened with this task). Some stated it was something you should decide together with you family, as it concerns them as well. 3.4 Physician The final theme we identified is the physician. As is visualized in Fig. 2 by the wheels, the physician plays a key role in care decisions according to patients. When we asked patients openly what they perceived as necessary or helpful in discussing care decisions, many patients mentioned factors related to the physician, and more specifically the physician’s communication. Words patient used to describe the desired communication style are for instance ‘honest’,
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