A patient’s perspective on care decisions 75 4 1. Introduction “Discuss care decisions when discussing treatment with patients.” This is one of the ten Wise Choices compiled by the Dutch Association of Internal Medicine [1], to improve the quality and efficiency of healthcare in the spirit of the global Choosing Wisely campaign [2, 3]. Care decision discussions comprise a broad spectrum of topics, all with the purpose to align treatment with the preferences of the patient. This includes code status documentation (i.e. whether limitations to specific life-sustaining treatments are in place) and all forms of advance care planning. Although the Wise Choice above implies care decisions discussions should be a regular part of the medical consultation [1], both physicians and patients face multiple barriers in doing so [4–9]. Patients face difficulties such as lack of knowledge, passivity and refusing to think about the end-of-life [5]. Maybe even more important is the patient’s unawareness of the relevance of care decisions and the expectation that physicians will initiate the discussion when needed [8]. Avoidance by both parties results in care decision discussions not taking place [9], and therefore an opportunity to improve the efficiency and quality of healthcare is missed. Patients and physicians often perceive the care decisions discussion in the outpatient clinic as being too soon [4, 5, 10]. However, the quality standards of the Dutch association for Internal Medicine demand a code status is documented in every admitted patient [11]. Therefore, when discussions about care decisions are postponed, it could be the case that code status suddenly has to be discussed in acute settings (e.g. at the emergency department), when there is less time for discussion and thoughtful consideration of the patients preferences before making a decision. Besides, in acute settings preexisting physician-patient relationships are rare [5]. Therefore, the outpatient clinic setting would be a better option [12, 13]. There are some subtle differences in the Netherlands between hospitals and settings in how one refers to care decisions. Terms that are for instance used are: treatment restrictions, code status discussions, advance care planning (often associated with end-of-life) [4] and treatment instructions. In the communication with patients we used the term ‘treatment wishes and limitations’, as this makes clear that the discussion about care decisions is not
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