A patient’s perspective on care decisions 87 4 4. Discussion We aimed to gain deeper insight in patient’s perspective on the topic of care decisions. Most patients considered care decisions as belonging to the endof-life, and therefore currently irrelevant. Consistent with other research, reading, talking or deciding about care decisions is perceived as unnecessary at this moment in time, because patients feel relatively healthy [15, 21–25]. There seems to be a vicious circle: literature about and research on care decisions is predominantly conducted in end-of-life settings. Furthermore, patients associate care decisions with the end-of-life. And in a previous study we showed that doctors frame the topic often as ‘relevant in the future’ as well [26]. Altogether, this results in postponement of the discussion of care decisions, and consequently research can only be conducted in the end-oflife phase. As is recognised by the Dutch Association of Internal Medicine by incorporating it in the Choosing Wisely campaign, this cycle should be broken, otherwise care decision conversations keep being assessed as being too soon, until it is too late [1]. We attempted to address this perceived irrelevance in our current patient education by emphasizing the current importance of care decision conversations. However, our study shows this attempt was insufficient. Several behavioural models have described differences in information processing and likelihood of persuasion depending on motivation [27, 28]. Probably, the relevance and thereby motivation to process information about care decisions should be even further emphasized. In order to break the vicious cycle, we might need to do more than patient education alone. Another important connection patients made with the topic of care decisions was the need to make definite, binding decisions. This created a barrier, because patients expressed that the balance whether a treatment is ‘worth it’ depends on the situation. This barrier corresponds with previous research [29, 30]. Care decision discussions should not focus on fixed decisions, but on goals of care and the regular discussion of treatment options and preferences, as it better fits patient’s changing needs [30]. Our research shows patients should be aware of that as well.
RkJQdWJsaXNoZXIy MTk4NDMw