Chapter 7 154 It is always too soon, until it is too late Relevance – end of life association One of the main themes throughout our research is (perceived) (ir)relevance and the association with the end of life. Two items that are inextricably linked. The expectation that care decision conversations belong to the end of life and focus on resuscitation seem quite persistent. From the beginning of our research we defined care decisions as 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, which is far broader than ‘do you want to be resuscitated’. Besides, we attempted to refrain from the end of life association by purposefully not using the term advance care planning and not selecting specific patients that are ‘more at the end of life’ (e.g. based on age, disease, or the in ACP commonly used ‘surprise question’ (i.e. Would you be surprised if this patient died within the next 12 months?). Despite our efforts, perceived irrelevance and the end of life association played a role in all our studies. In chapter 2, the perceived irrelevance at this moment in time explains the low number of care decision discussion. As well as naming that the patient education is informative, but not helpful in forming an opinion or talk about care decisions. Also in chapter 3, we observed the perceived irrelevance in the low number of care decision discussions, the extensive use of accounts to create common ground, and the relevance paradox of the topic being framed as ‘relevant in the future’, but ‘needs to be discussed now’. Furthermore, the end of life association makes it a sensitive topic, which is seen by the use of hesitations, repairs and restarts by physicians when introducing the topic of care decisions. However, at the same time all efforts by the physician (e.g. hesitations, accounts) and the relevance paradox sustain the image of the topic of care decisions belonging to the end of life, sensitive and irrelevant at this moment in time. In chapter 4, we discovered patients are deeply convinced that care decisions are associated with the end of life, and therefore irrelevant at this moment in time and a sensitive topic, explaining part of our results in chapter 2. The physicians’ perspective we explored further declared this problem in the intermezzos. There was no consensus amongst physicians on what an appropriate time is for conducting care decision conversations, and when it was deemed relevant. The lack of criteria
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