The experience of surrogate decision-making and deciphering critically ill patient values: A qualitative study.

Background: Surrogate decision-makers (SDMs) who make decisions for critically ill patients often face great challenges. Although shared decision-making has been advocated, its implementation has been less than satisfactory.

Aim: To explore the experience of the surrogate decision-making process and determine how SDMs understand the values and preferences of critically ill patients.

Study design: A constructivist qualitative study was used. The data were collected using semistructured interviews with four questions conducted between January and February 2023. The audio recordings were transcribed verbatim and analysed via thematic analysis. Fourteen SDMs (all family members) of 10 critically ill patients were recruited according to the inclusion criteria.

Results: We identified eight sub-themes that were classified into three themes: (a) the unbalanced act: no respite for the surrogates, conflict between rationality and emotion, and sacrifice in surrogate decision-making; (b) unclear values and preferences: ignored values, intentional silence and substituted values; and (c) unsatisfying surrogate decisions: decision regret and decreased surrogate decision-making self-efficacy.

Conclusion: These findings underscore the urgent need for enhanced communication strategies and support systems to better assist SDMs in navigating their roles. Effective interventions could help clarify patients' values and preferences, thereby improving the decision-making process and outcomes for both SDMs and patients.

Relevance to clinical practice: Misalignment between patient values and those of SDMs can potentially degrade the quality of decision-making. Clinicians should be skilled in stimulating SDMs to think about patient values and preferences.