Psychological determinants of shared decision-making at the end-of-life: development of a structured observation tool

Abstract Background There are currently no tools available for observing the psychological processes that guide shared decision-making at the end of life. Objectives This article aims to formalize a methodological framework for the design of an exploratory scientific study based on participant observation by psychologists. The main objective of the tool is to enable the observation of the psychological distress of patients and the psychological experiences of all those involved in shared medical decision-making (patients, relatives, professionals) during the end-of-life decision-making process. Methods An observation tool for psychologists in palliative care was developed through an integrative methodology based on a structured review of the literature. A preliminary version of the observation tool was submitted to 11 expert psychologists practicing in end-of-life care, via the Delphi method. Quantitative and qualitative analyses of the comments and content of individual and group interviews were conducted. Statistical analysis focused on measures of central tendency, dispersion, and distribution. Results The final version of the observation tool comprises 57 items. The tool was applied in 54 palliative care cases; 44 complete data sets were obtained. Statistical analysis demonstrates good acceptability, feasibility, and reliability of the tool. Conclusion The tool enables psychologists to observe shared decision-making by focusing on the psychological determinants of the process. Without any psychometric ambitions, the observation tool is designed to facilitate participant observation in a psychological context and adequately fulfils the objectives for which it was developed.