Is a person’s goal to be cured, to live long enough to see a particular event, to be comfortable, or something else? Researchers wanted to know how many ICU proxies believed they knew the answer.1 They also wondered how many proxies felt confident that they knew what limits their loved one would place on pursuing that goal — would the patient choose not to resuscitate?
Initially, researchers asked these questions of proxies:
• “In your opinion, which would of the following options best describes [patient’s name] goal right now?”
• “In your opinion, how does [name] want doctors and nurses in the ICU to treat him or her?
• “Which of the following statements sounds most like what [name] would say?”
“But very quickly, we realized that proxies were giving answers that did not line up with the code status order active in the patient’s medical record at the time of the interview,” says Alison E. Turnbull, DVM, MPH, PhD, the study’s lead author and an assistant professor in the division of pulmonary and critical care medicine at Johns Hopkins University in Baltimore. Almost one-third of proxy answers about preferred code status conflicted with the code status in the chart at the time.
In most of these discordant cases, proxies reported that their loved ones would want their health to improve, but would not be willing to start life support or receive CPR. The question then became: Are these families aware of the disconnect between what they are stating and what is in the EMR and are choosing not to say anything? Or, is the issue that the families really do not even know the clinical team’s current approach to the patient’s care?
“To try and answer that, we went back to the IRB and got permission to add a new question to the survey,” says Turnbull. The researchers then asked the proxies: Which of the following best describes how doctors and nurses in the ICU are treating [name] right now?
“That turned out to be a really important question,” says Turnbull. Among 111 proxies, 29% did not know which of the multiple choice options represented their loved one’s current code status. “We identified 15 proxies who correctly identified their loved one’s current code status, reported it did not reflect the patient’s values, but had not notified the clinical team,” notes Turnbull.
Interestingly, findings were consistent regardless of a proxy’s formal education. College graduates did not fare any better than families with less education when asked to identify the team’s approach to care. When comparing proxies by race, researchers noticed that the proportion of black families who were correct about code status was greater than among white families. One hypothesis is that black families may have been more likely to ask clinicians questions and verify that their loved one was actually getting the kind of care preferred.
“We have a long, painful history of racial discrimination in Baltimore. As a result, black proxies may have been less trusting,” says Turnbull.
The study was not designed to identify differences between proxies who did or did not know their loved one’s code status. “While it was interesting to look at these patterns and think about what might be generating them, we aren’t able to say anything definitive,” says Turnbull.
Wayne Shelton, PhD, says it is not too surprising that so many proxies do not know their loved ones’ current code status. “Patients and their proxies come to the hospital often, and understandably, with a low level of medical literacy,” notes Shelton, a professor at Albany (NY) Medical College’s Alden March Bioethics Institute.
Of course, proxies should know the patient’s code status and be able to reflect on whether to consent to a do not resuscitate (DNR) order. “But they cannot be expected to do so without a considerable amount of support from their care providers,” says Shelton. Clinicians are obligated to provide comprehensible information and emotional support for what are often difficult decisions, he adds.
For proxies to be in the dark on their loved one’s code status “is not a reflection of their shortcoming, but that of the care team’s,” adds Shelton.
This is especially important when patients are frail and given a poor prognosis — and particularly when the patient is dying. “Care providers have a responsibility to discuss DNR status with proxies,” says Shelton.
1. Turnbull AE, Chessare CM, Coffin RK, et al. More than one in three proxies do not know their loved one’s current code status: An observational study in a Maryland ICU. PLoS ONE 2019 14:e0211531.
• Wayne Shelton, PhD, Professor, Alden March Bioethics Institute, Albany (NY) Medical College. Phone: (518) 262-6423. Email: firstname.lastname@example.org.
• Alison E. Turnbull, DVM, MPH, PhD, Division of Pulmonary and Critical Care Medicine, Johns Hopkins University, Baltimore. Email: email@example.com.