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

Abstract

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.

Measuring Goal-Concordant Care in Palliative Care Research

“…Further, even when patients and their caregivers are asked about their current treatment, they may not be capable of evaluating goal-concordance of care because they do not necessarily know what specific care they are receiving, or what that treatment is meant to achieve clinically. 24 To these points, others have demonstrated how humans have selective memory against adverse events and, separately, rationalize decisions to reduce cognitive dissonance, or in our case, post hoc perception of goal-concordance. 20,25 Of note, family-reports are reflected through several shifting lenses over time, all with imperfect information: their perception of the patients' goals, values, and treatments over time; their relationship to and perception of the patient; their own experience with the treatments; and the patients' outcomes, including whether the patient died (examined in more detail below).…”

Reducing Discrepancy Between Code Status Orders and Physician Orders for Life-Sustaining Therapies: Results of a Quality Improvement Initiative

“…Potential barriers include insufficient time allotted for complex discussions about nonbinary choices that require contextual nuance, challenges in communication with ill or impaired patients, nonavailability of or inadequately prepared proxies, poor clinician understanding of the differences between POLST and other forms of advanced care planning, 6 a preference for full support as the default option for code status, 12 poor recall by patients, and proxies about what documents have been created and what the content includes. 13 communication is a unifying theme in situations of discrepant advanced care choices and orders. It is not known precisely how often discrepant code orders lead to unwanted CPR, since there is no registry of such events.…”

Assessment of Discordance Between Surrogate Care Goals and Medical Treatment Provided to Older Adults With Serious Illness

“…The results of this study suggest that implementation of DNR orders for patients whose surrogates have identified that they do not want aggressive medical interventions is an important part of ensuring concordant medical treatment. Prior work 32,33 has identified barriers to writing DNR orders in a timely fashion. Studies have found that code status is typically addressed only when a patient faces poor prognosis or poor quality of life rather than on a routine basis.…”