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]
Summary
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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