Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)

This paper analysed the nature of autonomy, in particular respect for autonomy in medical ethics/bioethics in Japan. We have undertaken a literature survey in Japanese and English and begin with the historical background and explanation of the Japanese wordJiritsu (autonomy). We go on to identify patterns of meaning that researchers use in medical ethics / bioethics discussions in Japan, namely, Beauchamp and Childress’s individual autonomy, relational autonomy, and O’Neill’s principled autonomy as the three major ways that autonomy is understood. We (...) examine papers discussing these interpretations. We propose using the term ‘a form of autonomy’ first used by Edmund Pellegrino in 1992 and examine the nature of ‘a form of autonomy.’ We finally conclude that the crux of what Pellegrino calls ‘something close to autonomy,’ or ‘a form of autonomy' might best be understood as the minimization of physician paternalism and the maximization of respect for patient preference. Simultaneously, we introduce a family-facilitated approach to informed consent and respond to criticism by Laura Sullivan. Finally, we discuss cross-cultural approaches and global bioethics. Furthermore, we use the term ‘Bioethics across the Globe’ instead of ‘Global Bioethics’, calling for international scholars to write works to provide an in-depth understanding of each country. We conclude that deep understanding of others is pivotal for dialogue to be of value. We hope this article will deepen the reader’s understanding of Japan and will contribute to the progress of bioethics worldwide. (shrink)