Dataset Information

The accuracy of surrogate decision makers: informed consent in hypothetical acute stroke scenarios.

ABSTRACT:

Background

Over one third of stroke patients have cognitive or language deficits such that they require surrogate consent for acute stroke treatment or enrollment into acute stroke trials. Little is known about the agreement of stroke patients and surrogates in this time-sensitive decision-making process. We sought to determine patient and surrogate agreement in 4 hypothetical acute stroke scenarios.

Methods

We performed face to face interviews with ED patients at an academic teaching hospital from June to August 2011. Patients and the surrogates they designated were asked to make decisions regarding 4 hypothetical stroke scenarios: 2 were treatment decisions; 2 involved enrollment into a clinical trial. Percent agreement was calculated as measures of surrogate predictive ability.

Results

A total of 200 patient/surrogate pairs were interviewed. Overall patient/surrogate percent agreement was 76.5%. Agreement for clinical scenarios ranged from 87% to 96% but dropped to 49%-74% for research scenarios.

Conclusions

Surrogates accurately predict patient preferences for standard acute stroke treatments. However, the accuracy decreases when predicting research participation suggesting that the degree of surrogate agreement is dependent on the type of decision being made. Further research is needed to more thoroughly characterize surrogate decision-making in acute stroke situations.

SUBMITTER: Bryant J

PROVIDER: S-EPMC4225766 | biostudies-literature | 2013 Nov

REPOSITORIES: biostudies-literature

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Publications

The accuracy of surrogate decision makers: informed consent in hypothetical acute stroke scenarios.

Bryant Jessica J Skolarus Lesli E LE Smith Barbara B Adelman Eric E EE Meurer William J WJ

BMC emergency medicine 20131113

<h4>Background</h4>Over one third of stroke patients have cognitive or language deficits such that they require surrogate consent for acute stroke treatment or enrollment into acute stroke trials. Little is known about the agreement of stroke patients and surrogates in this time-sensitive decision-making process. We sought to determine patient and surrogate agreement in 4 hypothetical acute stroke scenarios.<h4>Methods</h4>We performed face to face interviews with ED patients at an academic teac ...[more]

PMID: 24219014

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Project description:The prevalence of patients who are Incapacitated with No Evident Advance Directives or Surrogates (INEADS) remains unknown because such data are not routinely captured in structured electronic health records. This study sought to develop and validate a natural language processing (NLP) algorithm to identify information related to being INEADS from clinical notes. We used a publicly available dataset of critical care patients from 2001 through 2012 at a United States academic medical center, which contained 418,393 relevant clinical notes for 23,904 adult admissions. We developed 17 subcategories indicating reduced or elevated potential for being INEADS, and created a vocabulary of terms and expressions within each. We used an NLP application to create a language model and expand these vocabularies. The NLP algorithm was validated against gold standard manual review of 300 notes and showed good performance overall (F-score = 0.83). More than 80% of admissions had notes containing information in at least one subcategory. Thirty percent (n = 7,134) contained at least one of five social subcategories indicating elevated potential for being INEADS, and <1% (n = 81) contained at least four, which we classified as high likelihood of being INEADS. Among these, n = 8 admissions had no subcategory indicating reduced likelihood of being INEADS, and appeared to meet the definition of INEADS following manual review. Among the remaining n = 73 who had at least one subcategory indicating reduced likelihood of being INEADS, manual review of a 10% sample showed that most did not appear to be INEADS. Compared with the full cohort, the high likelihood group was significantly more likely to die during hospitalization and within four years, to have Medicaid, to have an emergency admission, and to be male. This investigation demonstrates potential for NLP to identify INEADS patients, and may inform interventions to enhance advance care planning for patients who lack social support.

Project description:In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates' perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia.Semistructured interview with prestudy and poststudy design for surrogates in the intervention group.Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial.Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups.For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions.The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale.Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid.A structured decision aid can be used to improve decision making about feeding options in dementia care.

Project description:BackgroundDialysis is often initiated in the hospital during episodes of acute kidney injury and critical illness. Little is known about how patients or their surrogate decision makers feel about dialysis initiation in the inpatient setting.MethodsWe conducted a prospective cohort study at a large academic center in the United States. All patients who initiated dialysis during a 30-day period in 2016 were approached for enrollment. Study participants were defined as individuals who provided consent for dialysis initiation - either the patient or a surrogate decision-maker. Decisional satisfaction and the degree of shared decision-making were assessed using the decisional attitude scale and the control preferences scale, respectively. These scales were incorporated into a study questionnaire along with an exploratory structured interview.ResultsA total of 31 potential participants were eligible and 21 agreed to participate in the study. Continuous renal replacement therapy was used in 14 out of 21 cases (67%) and there was 33% in-hospital mortality in the study cohort. A majority (62%) of patients were unable to participate in the consent process for dialysis initiation and had to rely on a surrogate decision-maker. The mean score for the decisional attitude scale was 4.1 (95% CI 3.8-4.3) with a score of 5 corresponding to high decisional satisfaction. Most of the decisions were classified as shared and incorporated input from clinicians as well as patients or surrogates. Although 90% of participants agreed that they had a choice in making the decision, 81% were unable to mention any alternatives to dialysis initiation.ConclusionsDialysis initiation was associated with high decisional satisfaction and most participants felt that the decision incorporated input from patients and providers. However, inpatient dialysis initiation was commonly associated with loss of decisional capacity and reliance on a surrogate decision-maker. This finding is likely driven by critical illness. Survivors of critical illness who remain dialysis dependent may need to revisit conversations about the rationale, risks, and benefits of dialysis.

Dataset Information

The accuracy of surrogate decision makers: informed consent in hypothetical acute stroke scenarios.

Background

Methods

Results

Conclusions

Publications

The accuracy of surrogate decision makers: informed consent in hypothetical acute stroke scenarios.

Similar Datasets

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