General introduction 11 1 “Discuss whether treatment limitations are needed when talking to patients about treatment options” (10). This recommendation was one of the motivations for our research proposal. Care Decisions – Definition – Behandelwensen en -grenzen In the initial phases of this research, we deliberated to articulate an appropriate terminological framework for our objective: 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. This includes, but is not limited to, patient preferences regarding resuscitation, mechanical ventilation, Intensive Care admission (often referred to as the code status) and other possible treatment options such as hospital admission, dialysis, tube feeding, et cetera. During the discussion within the Dutch context, consensus was rapidly reached on the term ‘behandelwensen en -grenzen’ (treatment wishes and boundaries), averting alternatives such as ‘behandelbeperkingen’ (treatment restrictions) or ‘behandelcode’ (treatment code, code status), and ‘Advance Care Planning (ACP)’. This lexical choice was informed by a desire to avoid potential negative connotations associated with restrictions or limitations, address the general population’s unfamiliarity with the meaning of code, and disassociate from the end-of-life implications often linked with advance care planning. The aim was to abstain from using medical jargon, difficult words, and non-native (non-Dutch) terminology in patient communication as much as feasible. Nonetheless, within the dominantly English-language corpus of medicalscientific literature, the term ‘treatment wishes and boundaries’ is notably absent and presents as a neologism derived from Dutch. Although the internationally recognized definition of ACP, as delineated by Rietjens et al., aligns closely with our interpretation of ‘behandelwensen en -grenzen’ (11), ACP is predominantly linked with end-of-life contexts, a bias reinforced by the extensive research in predominantly end-of-life settings (12). To circumvent this association, we have adopted the term ‘care decisions’ across our academic publications and within this thesis. Care decisions are the alignment of treatment with the patients’ desires, goals, and values, inclusive of the potential for opting out of further diagnostic or treatment interventions or put limits to this.
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