Chapter 4 76 just about a code status or treatment restriction, but about patient preferences and aligning treatment with these preferences, in which refraining from a treatment is also a possibility. To stimulate and improve care decision conversations at the internal medicine outpatient clinic, we previously conducted a study in which internal medicine physicians were trained on the topic of care decisions and patients were computer-randomized to receive a patient education on this topic [14]. Care decisions were not specifically related to current treatment of these patient, because the intention was to improve timely care decision discussions in all patients. This patient education was constructed based on expert opinions and in collaboration with a patient panel. The patient education is an online web page that emphasizes the relevance of discussing care decisions and provides background information, for instance about who can initiate the discussion (patient or physician), who can decide on treatment limitations, how this is documented/ for whom this information is available. Examples included treatment wishes for patients for ventilation at the intensive care unit or blood transfusion. Additional information, for instance about certain treatments and its consequences, is accessible through hyperlinks. Remarkably, patients assessed the patient education as informative and with good overall marks (median 7 out of 10), while at the same time not valuing it as helpful in forming an opinion about care decisions or discussing them [14]. To clarify this contradiction and gain insight in what would be more helpful for patients to aid them in care decision conversations, we conducted the current study. Most research on treatment wishes and limitations and advance care planning is conducted in end-of-life settings [8]. On the other hand Harris et al. conducted a qualitative interview study on goals of care discussions in acute hospital admissions in Australia [15]. Knowledge about the perceptions of a relatively healthy outpatient clinic population towards this subject is lacking. We used semi-structured interviews to (1) further evaluate our patient education, (2) gain in-depth insight in patient’s perspective on the topic of care decisions, and (3) gain insight in necessities (from the patients’ view) for discussing care decisions. In this article we focus on the results of the last two, as these insights are most relevant for a wide audience. Our results should enable us to improve patient education and discussion of care decisions.
RkJQdWJsaXNoZXIy MTk4NDMw