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

RATIONALE:The 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. OBJECTIVES:To 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. METHODS:We 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 RESULTS:Among 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). CONCLUSIONS:More 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

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

<div><p>Background</p><p>Family 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.</p><p>Objectives</p><p>To 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.</p><p>Design</p><p>Phase I study of acceptability and immediate side effects.</p><p>Setting and participants</p><p>122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland.</p><p>Intervention</p><p>Reading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies.</p><p>Results</p><p>Enrolled 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.</p><p>Conclusions</p><p>This 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.</p></div

Patient characteristics and outcomes.

<p>Patient characteristics and outcomes.</p

Study flow diagram.

<p>Study flow diagram.</p

Proxies responses to the question: <i>“Which page or part of the booklet did you find upsetting and why was it upsetting</i>?<i>”</i> (N = 122).

<p>Proxies responses to the question: <i>“Which page or part of the booklet did you find upsetting and why was it upsetting</i>?<i>”</i> (N = 122).</p

Important booklet pages according to ICU proxies.

<p>Important booklet pages according to ICU proxies.</p

Proxy responses to questions about booklet content and delivery.

<p>Proxy responses to questions about booklet content and delivery.</p

Characteristics of interviewed proxies.

<p>Characteristics of interviewed proxies.</p

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

<div><p>Rationale</p><p>Clinical trials of interventions aimed at the families of intensive care unit (ICU) patients have proliferated but recruitment for these trials can be challenging.</p><p>Objectives</p><p>To evaluate a strategy for recruiting families of patients currently being treated in an ICU using limited human resources and time-varying daily screening over 7 consecutive days</p><p>Methods</p><p>We screened the Johns Hopkins Hospital medical ICU census 7 days per week to identify eligible family members. We then made daily, in-person attempts to enroll eligible families during a time-varying 2-hour enrollment period until families declined participation, consented, or were no longer eligible.</p><p>Measurements and main results</p><p>The primary outcome was the proportion of eligible patients for whom ≥1 family member was enrolled. Secondary outcomes included enrollment of legal healthcare proxies, the consent rate among families approached for enrollment, and success rates for recruiting at different times during the day and week. Among 284 eligible patients, 108 (38%, 95% CI 32%-44%) had ≥1 family member enrolled, and 75 (26%, 95% CI 21%-32%) had their legal healthcare proxy enrolled. Among 117 family members asked to participate, 108 (92%, 95% CI 86%-96%) were enrolled. Patients with versus without an enrolled proxy were more likely to be white (44% vs. 30%, P = .02), live in a zip code with a median income of ≥$100,000 (15% vs. 5%, P = .01), be mechanically ventilated (63% vs. 47%, P = .01), die in the ICU (19% vs. 9%, P = .03), and to have longer ICU stays (median 5.0 vs. 1.8 days, P<.001). Day of the week and time of day were not associated with family presence in the ICU or consent rate.</p><p>Conclusions</p><p>Family members were recruited for more than one third of eligible patients, and >90% of approached consented to participate. There are important demographic differences between patients with vs without an enrolled family member.</p></div

Characteristics of enrolled proxies and their loved ones by enrollment time.

<p>Characteristics of enrolled proxies and their loved ones by enrollment time.</p