A patient’s perspective on care decisions 89 4 time between reading the patient education and the interview varied between patients, and some were unable to remember the content very well. However, in a normal clinical setting, patients would not read a patient education on a daily basis either, and their perspective on care decisions was still insightful. 5. Conclusion This study showed that patients’ perception of the topic of care decisions is overshadowed by two (wrongful) convictions: the perception that it belongs to the end-of-life and therefore is not relevant for them at this moment in time, and the belief that care decision discussions leads to fixed decisions. This resulted in assessing our patient education as informative, but not helpful at this moment in time and no desire to discuss care decisions yet. Future perspective Our research shows some opportunities to improve care decision discussions. The top layer in Fig. 2 shows two deep convictions patients have, that prevents them from going to the actual, more practically orientated, balancing whether a treatment is ‘worth it’. These two associations, with the end-of-life and need for binding decisions, should be addressed first. These convictions seem persistent and call for a change of the care decision narrative. We propose care decisions should be a normal, regular, recurring part of the medical consultation. This “new” narrative, of care decision conversations as a continuous, dynamic process, relevant at any given time and circumstance, should be disseminated. Framing it as “a plan” could possibly be helpful in seeing it as currently relevant and flexible, rather than fixed. To accomplish this, both patient, physicians, and perhaps even society should be informed and engaged. One might think of patient education, a short informative movie in the waiting room, or even a national campaign. Patients assign the physician a key role in this process, so the physician should pick up the gauntlet and take this role. Physicians should be educated in this role, and specifically in the expectation of patients that the physician initiates this conversation, informs them, and does so with sensitive communication skills. As a regular part of the medical consultation. Acknowledgements We would like to thank all participants for their time and openness. We would like to thank A. Belt, medical student, for conducting the first round of interviews.
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