Chapter 4 88 Very recently, Harris et al. conducted a qualitative interview study on goals of care discussions in acute hospital admissions in Australia [15]. Although their study population differed from ours (experiences of acute hospitalized patients with goals of care discussions versus the perspective of an outpatient population), we found many similarities. Both patient populations perceived care discussion irrelevant at this moment in time. Also, they described the connection to dying and death, a focus on resuscitation, a knowledge deficit, and the need for involvement of family. There are several strengths and limitations to our study. The qualitative approach and semi-structured interviews provided us the ability and flexibility to get in-depth information about aspects of patients’ perspective on the topic of care decisions. In line with the growing awareness that care decision discussions should take place ‘earlier’, we investigated the perspective of the, relatively healthy, internal medicine outpatient clinic population. In this study, the median age was 57,5 years (interquartile range 53–67,5) and the patients had a median Charlson Comorbidity Index of 2,5 (interquartile range 1–4), which means they were relatively healthy and not in the end of life. This adds to existing research which mostly revolves around patients with severe chronic diseases, elderly patients or patients with a terminal illness [8, 15]. We are aware that in an interview-study the ways in which questions are asked have an effect on the patient responses and can thus have an effect on the themes that are identified. To minimize this risk, we mostly asked open questions. For instance, all physician-related factors patients mentioned, were an answer to “what is necessary/ helpful in care decision discussions”. We did not ask “what should the physician do” or “what is the role of the physician” (which inevitably would have resulted in a theme physician). Another potential limitation arises from the notable amount of eligible patients that did not answer the phone or did not want to participate in the interviews, as this might originate from a certain perspective or emotional response to the topic of care decisions. However, numerous participants expressed hesitance regarding the topic, which pleads against this group being underrepresented. Furthermore, patients with insufficient command of the Dutch language could not participate in this study. One patient (from a non-western culture), pointed out some cultural differences, but we have too little data to draw conclusions on cultural differences. Lastly, the amount of
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