Abstract

BackgroundIt is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is also not well documented.MethodsWe explored the relative importance of 28 surrogate decision-making factors to 120 Middle-Eastern (ME) and 120 East-Asian (EA) women from three perspectives, norm-perception (N), preference as patient (P), and preference as surrogate decision-maker (S). Each respondent force-ranked (one to nine) 28 opinion-items according to each perspective. Items’ ranks were analyzed by averaging-analysis and Q-methodology.ResultsRespondents’ mean (SD) age was 33.2 (7.9) years; all ME were Muslims, 83% of EA were Christians. “Trying everything possible to save patient,” “Improving patient health,” “Patient pain and suffering,” and/or “What is in the best interests of patient” were the three most-important items, whereas “Effect of caring for patient on all patients in society,” “Effect of caring for patient on patients with same disease,” and/or “Cost to society from caring for patient” were among the three least-important items, in each ME and EA perspectives. P-perspective assigned higher mean ranks to family and surrogate’s needs and burdens-related items, and lower mean rank to “Fear of loss” than S-perspective (p<0.001). ME assigned higher mean ranks to “Medical facts” and “Surrogate own wishes for patient” and lower mean rank to “Family needs” in all perspectives (p<0.001). Q-methodology identified models that were relatively patient’s preference-, patient’s religious/spiritual beliefs-, or emotion-dependent (all perspectives); medical facts-dependent (N- and S-perspectives), financial needs-dependent (P- and S-perspectives), and family needs-dependent (P-perspective).Conclusions1) Patient’s health was more important than patient’s preference to ME and EA women; society interest was least important. 2) Family and surrogate’s needs/ burdens were more important, whereas fear of loss was less important to respondents as patients than as surrogate decision-makers. 3) Family needs were more important to EA than ME respondents, the opposite was true for medical facts and surrogate’s wishes for patient. 4) Q-methodology models that relatively emphasized various surrogate decision-making factors overlapped the ME and EA women’ three perspectives.

Highlights

  • It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures

  • 3) Family needs were more important to EA than Middle Eastern (ME) respondents, the opposite was true for medical facts and surrogate’s wishes for patient

  • Q-methodology involves construction/collection of a concourse of opinion statements related to the topic under study, sorting the statements into groups and collapsing them into a Q-set that adequately covers the various thematic domains, presenting the Q-set to respondents to model their point of view by rank-ordering the statements into piles (Qsort) along a continuum defined by certain instructions, performing a special type of by-person exploratory factor analysis using the Q-sorts as variables, grouping of respondents who rank-ordered the statements into similar arrangements into models, and interpreting the models [32, 33]

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Summary

Introduction

It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is not well documented According to extended autonomy/precedent consent, a prevalent thesis in Western cultures, surrogate decisionmakers are expected to make substituted judgments based on stated or predicted patient’s wishes [1, 2]. Patients may believe that such decisions are not their right, responsibility, or even important to them and may not perceive deviations from their preferences as infarctions of their autonomy

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