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

Date Published: January 30, 2019

Publisher: Public Library of Science

Author(s): Alison E. Turnbull, Caroline M. Chessare, Rachel K. Coffin, Dale M. Needham, Tim Luckett.


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.

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.

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.

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).

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.

Partial Text

In the United States, the number of intensive care unit (ICU) beds and annual cost of critical care services are steadily increasing.[1] Simultaneously, the use of mechanical ventilation during the last month of life[2] and the proportion of hospitalized patients with advanced dementia who are mechanically ventilated[3] have risen markedly. Ethicists, health-services researchers, and clinicians have worried these simultaneous trends put patients at risk of over-treatment[4] as a result of both cognitive biases (i.e. the cascade effect [5]) and system-level phenomena (e.g. clinical momentum [6]).

There were 122 unique family members interviewed for 111 consecutive eligible patients (Fig 1). Among these participants 79 (65%) were the patient’s legal healthcare proxy, median age was 51 years old (range: 18–79), 39 (30%) were male, 55 (45%) identified as Black or African-American, and median years of education was 14 (range: 10–24) (Table 1). 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]

In this study of 122 proxy decision-makers in a single MICU, 38% of proxies could not identify their patient’s code status when described using lay terminology, and less than half believed that the patient would want the actual code status recorded in the EMR. Among proxies reporting a discordant code status, 91% reported that the patient would prefer to forego life support permitted by the code status recorded in the EMR. Among ICU proxies, 98% reported that they knew their patient’s prioritized goal of care, but only 75% provided a response other than “I don’t know” when asked about the patient’s preferred code status. Proxies who were incorrect or unsure (vs were correct) about the patient’s actual code status were not substantially different based on readily identifiable characteristics of the proxy or patient. Patients and proxies characteristics also were not associated with concordance between preferred and actual code status.

In conclusion, code status orders were poor indicators of ICU patient goals of care and treatment preferences as reported by their proxy decision-makers. More than 1 in 3 healthcare proxies who were physically present in the ICU were either incorrect or unsure about their patient’s current code status. Readily identifiable characteristics, such as age, gender, race, and education level, were not associated with discordance in preferred vs actual code status, or with proxy misunderstanding or uncertainty about actual code status.




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