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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 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.

SUBMITTER: Hammami MM

PROVIDER: S-EPMC6500001 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Publications

Prediction of life-story narrative for end-of-life surrogate's decision-making is inadequate: a Q-methodology study.

Hammami Muhammad M MM Abuhdeeb Kafa K Hammami Muhammad B MB De Padua Sophia J S SJS Al-Balkhi Areej A

BMC medical ethics 20190503 1

<h4>Background</h4>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.<h4>Methods</h4>Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements a ...[more]

PMID: 31053127

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Project description:ObjectivesResearch indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU.DesignQualitative study using semistructured interviews with ICU physicians, nurses, and interpreters.SettingThree ICUs at Mayo Clinic Rochester.SubjectsSixteen ICU physicians, 12 ICU nurses, and 12 interpreters.InterventionNone.Measurements and main resultsWe conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility.ConclusionsEnd-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.

Project description:Characteristics of the physician influence the essential decision-making in end-of-life care. However, the effect of special education in palliative medicine on different aspects of decision-making in end-of-life care remains unknown. The aim of this study was to explore the decision-making in end-of-life care among physicians with or without special competency in palliative medicine (cPM).A questionnaire including an advanced lung cancer patient-scenario with multiple decision options in end-of-life care situation was sent to 1327 Finnish physicians. Decisions to withdraw or withhold ten life-prolonging interventions were asked on a scale from 1 (definitely would not) to 5 (definitely would) - first, without additional information and then after the family's request for aggressive treatment and the availability of an advance directive. Values from chronological original scenario, family's appeal and advance directive were clustered by trajectory analysis.We received 699 (53%) responses. The mean values of the ten answers in the original scenario were 4.1 in physicians with cPM, 3.4 in general practitioners, 3.4 in surgeons, 3.5 in internists and 3.8 in oncologists (p?<?0.05 for physicians with cPM vs. oncologists and p?<?0.001 for physicians with cPM vs. others). Younger age and not being an oncologist or not having cPM increased aggressive treatment decisions in multivariable logistic regression analysis. The less aggressive approach of physicians with cPM differed between therapies, being most striking concerning intravenous hydration, nasogastric tube and blood transfusions. The aggressive approach increased by the family's request (p?<?0.001) and decreased by an advance directive (p?<?0.001) in all physicians, regardless of special education in palliative medicine.Physicians with special education in palliative medicine make less aggressive decisions in end-of-life care. The impact of specialty on decision-making varies among treatment options. Education in end-of-life care decision-making should be mandatory for young physicians and those in specialty training.

Project description:RationaleFamilies of critically ill patients are often asked to make difficult decisions to pursue, withhold, or withdraw aggressive care or resuscitative measures, exercising "substituted judgment" from the imagined standpoint of the patient. Conflict may arise between intensive care unit (ICU) physicians and family members regarding the optimal course of care.ObjectivesTo characterize how ICU physicians approach and manage conflict with surrogates regarding end-of-life decision-making.MethodsSemistructured interviews were conducted with 18 critical care physicians from four academically affiliated hospitals. Interview transcripts were analyzed using methods of grounded theory.ResultsPhysicians described strategies for engaging families to resolve conflict about end-of-life decision-making and tending to families' emotional health. Physicians commonly began by gauging family receptiveness to recommendations from the healthcare team. When faced with resistance to recommendations for less aggressive care, approaches ranged from deference to family wishes to various persuasive strategies designed to change families' minds, and some of those strategies may be counterproductive or harmful. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family's "substituted judgment" and the ability to control patient pain and suffering. Physicians reported concern for the family's emotional needs and made efforts to alleviate the burden on families by assuming decision-making responsibility and expressing nonabandonment and commitment to the patient. Physicians were attentive to repairing damage to their relationship with the family in the aftermath of conflict. Finally, physicians described their own emotional responses to conflict, ranging from frustration and anxiety to satisfaction with successful resolution of conflict.ConclusionsCritical care physicians described a complex and multilayered approach to physician-family conflict. The reported strategies offer insight into pragmatic approaches to achieving resolution of conflict while attending to both family and physician emotional impact, and they also highlight some potentially unhelpful or harmful behaviors that should be avoided. Further research is needed to evaluate how these strategies are perceived by families and other ICU clinicians and how they affect patient, family, and clinician outcomes.

Dataset Information

Prediction of life-story narrative for end-of-life surrogate's decision-making is inadequate: a Q-methodology study.

Background

Methods

Results

Conclusions

Publications

Prediction of life-story narrative for end-of-life surrogate's decision-making is inadequate: a Q-methodology study.

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