Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study
Abstract Background 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 predicti...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2019-05-01
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| Series: | BMC Medical Ethics |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12910-019-0368-8 |
| _version_ | 1818455805759848448 |
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| author | Muhammad M. Hammami Kafa Abuhdeeb Muhammad B. Hammami Sophia J. S. De Padua Areej Al-Balkhi |
| author_facet | Muhammad M. Hammami Kafa Abuhdeeb Muhammad B. Hammami Sophia J. S. De Padua Areej Al-Balkhi |
| author_sort | Muhammad M. Hammami |
| collection | DOAJ |
| description | Abstract Background 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. Methods Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), 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. Results Mean (SD) age was 35.4 (10.3) 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 (0.58) and 75% were ≥ familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), 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 (rho = 0.18, p = 0.01). 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 (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002). Conclusions 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. |
| first_indexed | 2024-12-14T22:16:37Z |
| format | Article |
| id | doaj.art-4f5bda8ddeba44d8bde84a5afe879557 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-12-14T22:16:37Z |
| publishDate | 2019-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-4f5bda8ddeba44d8bde84a5afe8795572022-12-21T22:45:36ZengBMCBMC Medical Ethics1472-69392019-05-0120111710.1186/s12910-019-0368-8Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology studyMuhammad M. Hammami0Kafa Abuhdeeb1Muhammad B. Hammami2Sophia J. S. De Padua3Areej Al-Balkhi4Clinical Studies and Empirical Ethics Department, King Faisal Specialist Hospital and Research CentreClinical Studies and Empirical Ethics Department, King Faisal Specialist Hospital and Research CentreFlorida Atlantic UniversityClinical Studies and Empirical Ethics Department, King Faisal Specialist Hospital and Research CentreClinical Studies and Empirical Ethics Department, King Faisal Specialist Hospital and Research CentreAbstract Background 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. Methods Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), 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. Results Mean (SD) age was 35.4 (10.3) 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 (0.58) and 75% were ≥ familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), 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 (rho = 0.18, p = 0.01). 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 (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002). Conclusions 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.http://link.springer.com/article/10.1186/s12910-019-0368-8End-of-life choicesQ-methodologySurrogate decision-makingSubstituted judgmentLife-story narrativeSurrogate decision-making confidence |
| spellingShingle | Muhammad M. Hammami Kafa Abuhdeeb Muhammad B. Hammami Sophia J. S. De Padua Areej Al-Balkhi Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study BMC Medical Ethics End-of-life choices Q-methodology Surrogate decision-making Substituted judgment Life-story narrative Surrogate decision-making confidence |
| title | Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study |
| title_full | Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study |
| title_fullStr | Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study |
| title_full_unstemmed | Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study |
| title_short | Prediction of life-story narrative for end-of-life surrogate’s decision-making is inadequate: a Q-methodology study |
| title_sort | prediction of life story narrative for end of life surrogate s decision making is inadequate a q methodology study |
| topic | End-of-life choices Q-methodology Surrogate decision-making Substituted judgment Life-story narrative Surrogate decision-making confidence |
| url | http://link.springer.com/article/10.1186/s12910-019-0368-8 |
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