Background Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. Clarification of underlying normative principles of ACP is crucial in understanding both motivation and hesitation to initiate ACP among health care professionals and patients. This study aims to clarify normative principles of ACP and to get insight in the range of normative principles that comprise the legitimacy of ACP.
Methods Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library, using various search terms for ‘ACP’ and ‘ethics’. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. Sensitivity analysis was performed to guarantee that unfrequently mentioned goals and objections were found as well.
Results In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 211 codes concerning normative principles of ACP. We identified 5 main normative principles for ACP: respecting individual patient autonomy, improving quality of care, strengthening relationships, improving quality of life, and reducing overtreatment.
Conclusion Defining normative principles of ACP should serve as a starting point when developing ACP interventions and selecting outcome measures to evaluate ACP interventions.
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