7 General discussion and summary 163 with patient preferences, not just ‘the resuscitation question’, and therefore relevant at any given time and circumstance should be shared. However, physicians should also be aware of the caveat that patients often (still) associate the topic with the end of life. Until that association is removed, common ground has to be created and accounts must be provided to introduce the topic of care decisions. It is important to point out that using utterances to frame the topic as relevant in the future sustain the relevance paradox. It is helpful to practice the creation of common ground, use of accounts, and sensitive communication skills in small groups. Patient education – be willing to dance and learn how to dance Patients should be on board to conduct care decision conversations as well. Removing the barriers that come from the association with the end of life and fear for fixed decisions are the first step. Therefore, the narrative of care decisions being about the alignment of treatment with the patients’ preferences, desires, goals, and values, inclusive of the potential for opting out of further diagnostic or treatment interventions or put limits to this. A continuous, dynamic process, relevant at any given time and circumstance, should be disseminated. The best way to do so is yet to be determined. Only after the patient is aware of the relevance (is willing to dance) information provision about certain treatments and its outcomes sustains (and the patient can learn how to dance). Community awareness – music Although the best way to create awareness is not determined yet, the COVID-19 pandemic showed us that engagement of the community at large can be effective. We recommend creating public awareness, by media attention or even a national campaign. Practical necessities – dancefloor Lack of time is a vast barrier to care decision conversations. Although we believe that by making care decisions a more normal and regular part of the consultation, it will become less time-consuming, time is still needed to provide information and explore patients’ wishes. Although prioritizing the topic with more awareness might help, the current system does not support
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