Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

Turnbull, Alison E.; Hashem, Mohamed D.; Rabiee, Anahita; To, An; Chessare, Caroline M.

doi:10.1371/journal.pone.0177741

Cited by 13 publications

(39 citation statements)

References 48 publications

(48 reference statements)

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“…In recruitment, subjects were approached in the ICU. These surrogate decision makers present visiting their family member may be different from those who are not present (46). Our hypothetical clinical vignette methodology does not fully replicate the circumstances and emotional responses that arise in an actual clinician-family encounter.…”

Section: Discussionmentioning

confidence: 99%

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU

Leiter

Motta

Reed

et al. 2018

Critical Care Medicine

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OBJECTIVE Clinicians caring for patients with intracerebral hemorrhage (ICH) must often discuss prognosis and goals of care with their patients’ surrogate decision makers, and may make numeric estimates of likelihood of survival and functional independence, informed by validated prediction models. Surrogates’ prognostic estimates are often discordant with physicians’, suggesting that physicians’ numeric statements may not be accurately interpreted. We sought to assess the relationship between numeracy and interpretation of prognostic estimates in ICH among surrogate decision makers. We also assessed surrogates’ application of prognostic estimates to decisions regarding goals of care. DESIGN Single-center, survey-based, cross-sectional study SETTING 22-bed neurologic intensive care unit (ICU) at an urban, academic hospital SUBJECTS Surrogate decision makers for patients admitted to the neurologic ICU INTERVENTIONS Participants completed a survey containing 5 clinical vignettes describing patients with non-traumatic ICH. For each patient, numerical estimates of survival and functional independence were explicitly provided, based on the validated ICH score, and the Prediction of Functional Outcome in Patients with Primary Intracerebral Hemorrhage (FUNC) score. MEASUREMENTS AND MAIN RESULTS Participants were asked to make their own prognostic estimates, as well as to describe their preferred goals of care for each hypothetical patient. Respondent demographics were collected, and numeracy was assessed using a modified Lipkus 11-item scale. Poor numeracy was common (42 out of 96 subjects) in this relatively highly educated population. Most prognostic estimates (55%) made by surrogates were discordant with the provided estimates. High numeracy correlated with better concordance (OR 23.9 [5.57–97.64], p<0.001), independent of several factors, including level of education and religion. Numeracy also affected goals-of-care decisions made by surrogates. CONCLUSIONS Poor numeracy, resulting in impaired understanding of statistics and risk magnitudes, is common among surrogate decision makers in an intensive care setting, and poses a barrier to communication between surrogates and clinicians regarding prognosis and goals of care.

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Section: Discussionmentioning

confidence: 99%

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU

Leiter

Motta

Reed

et al. 2018

Critical Care Medicine

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“…Five of the 111 patients (4%) had a legal document naming a healthcare agent in their medical chart. [15] Analyses regarding the external validity of this study sample have been previously reported. [15]…”

Section: Resultsmentioning

confidence: 99%

“…[15] Analyses regarding the external validity of this study sample have been previously reported. [15]…”

Section: Resultsmentioning

confidence: 99%

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More than one in three proxies do not know their loved one’s current code status: An observational study in a Maryland ICU

2019

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RationaleThe majority of ICU patients lack decision-making capacity at some point during their ICU stay. However the extent to which proxy decision-makers are engaged in decisions about their patient’s care is challenging to quantify.ObjectivesTo assess 1)whether proxies know their patient’s actual code status as recorded in the electronic medical record (EMR), and 2)whether code status orders reflect ICU patient preferences as reported by proxy decision-makers.MethodsWe enrolled proxy decision-makers for 96 days starting January 4, 2016. Proxies were asked about the patient’s goals of care, preferred code status, and actual code status. Responses were compared to code status orders in the EMR at the time of interview. Characteristics of patients and proxies who correctly vs incorrectly identified actual code status were compared, as were characteristics of proxies who reported a preferred code status that did vs did not match actual code status.Measurements and main resultsAmong 111 proxies, 42 (38%) were incorrect or unsure about the patient’s actual code status and those who were correct vs. incorrect or unsure were similar in age, race, and years of education (P>0.20 for all comparisons). Twenty-nine percent reported a preferred code status that did not match the patient’s code status in the EMR. Matching preferred and actual code status was not associated with a patient’s age, gender, income, admission diagnosis, or subsequent in-hospital mortality or with proxy age, gender, race, education level, or relation to the patient (P>0.20 for all comparisons).ConclusionsMore than 1 in 3 proxies is incorrect or unsure about their patient’s actual code status and more than 1 in 4 proxies reported that a preferred code status that did not match orders in the EMR. Proxy age, race, gender and education level were not associated with correctly identifying code status or code status concordance.

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“…Evaluation of this recruitment strategy have been previously published. [ 37 ] In this paper we refer to these people as proxies to encompass both healthcare agents and healthcare surrogates who have distinct legal definitions under Maryland state law. [ 38 , 39 ] If the family member initially enrolled was not the patient’s legal healthcare proxy, additional attempts were made to also enroll a legal proxy.…”

Section: Methodsmentioning

confidence: 99%

A brief intervention for preparing ICU families to be proxies: A phase I study

2017

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BackgroundFamily members of critically ill patients report high levels of conflict with clinicians, have poor understanding of prognosis, struggle to make decisions, and experience substantial symptoms of anxiety, depression, and post-traumatic stress regardless of patient survival status. Efficient interventions are needed to prepare these families to act as patient proxies.ObjectivesTo assess a brief “patient activation” intervention designed to set expectations and prepare families of adult intensive care unit (ICU) patients to communicate effectively with the clinical team.DesignPhase I study of acceptability and immediate side effects.Setting and participants122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland.InterventionReading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies.ResultsEnrolled proxies had a median age of 51 years old with 83 (68%) female, and 55 (45%) African-American. MICU mortality was 18%, and 37 patients (33%) died in hospital or were discharged to hospice. Among proxies 98% (95% CI: 94% - 100%) agreed or strongly agreed that the intervention was appropriate, 98% (95% CI: 92% - 99%) agreed or strongly agreed that it is important for families to know the information in the booklet, and 54 (44%, 95% CI 35%– 54%) agreed or strongly agreed that parts of the booklet are upsetting. Upset vs. non-upset proxies were not statistically or substantially different in terms of age, sex, education level, race, relation to the patient, or perceived decision-making authority.ConclusionsThis patient activation intervention was acceptable and important to nearly all proxies. Frequently, the intervention was simultaneously rated as both acceptable/important and upsetting. Proxies who rated the intervention as upsetting were not identifiable based on readily available proxy or patient characteristics.

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Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

Cited by 13 publications

References 48 publications

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU

More than one in three proxies do not know their loved one’s current code status: An observational study in a Maryland ICU

A brief intervention for preparing ICU families to be proxies: A phase I study

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