When Surrogate Decision-Makers Misunderstand Patients’ Condition
As a resident, Elizabeth Carroll, MD, saw many cases involving patients without decision-making capacity where it seemed clinicians were “on the same page” as family members. Yet when difficult decisions actually had to be made, it turned out surrogates expressed a very different view of the patient’s clinical state and prognosis than the clinical team.
“This is often seen in cases where we have approached the time point of a patient requiring a tracheotomy, given the duration of their intubation,” says Carroll, a neurocritical care fellow at NewYork-Presbyterian Hospital.
Providers in those cases believed they were clear with the family on the severity of the disease state and the need for prolonged ventilatory support. “However, the families still felt that their loved one will be awake enough to get the breathing tube out in a number of days,” Carroll says.
After seeing multiple cases with a disconnect between the clinical team and surrogate decision-makers, Carroll and colleagues sought to learn more about how well surrogates understood the patient’s clinical situation. Researchers surveyed 50 surrogates of patients who lacked decision-making capacity and were admitted to the neuroscience ICU or neurology ward from 2018 to 2021 at NYU Langone Medical Center.1
For each surrogate who completed the survey, a clinician from the neuroscience healthcare team also completed a questionnaire on how well they believed the surrogate understood the clinical situation. “The provider team and surrogates were often not on the same page,” Carroll reports.
There was discordance on the clinical state of the patient. Seventy-six percent of surrogates identified the reason for admission correctly. However, 42% identified all the assessments and interventions that were performed. “There was also discordance on how well the provider team thought the surrogate understood the situation vs. how well the surrogate felt they understood the situation,” Carroll says.
Ninety-eight percent of surrogates rated their own understanding of the patient’s medical condition as “good” or “excellent.” Clinicians agreed most surrogates demonstrated a good or excellent understanding of the patient’s condition. Still, they believed 13% of surrogates demonstrated a poor understanding.
In the view of clinicians, surrogates of patients with higher acuity of illness better understood the clinical situation. However, those surrogates were less likely to correctly identify all the affected organ systems. “The surrogates who we think have a strong grasp of what is going on may not feel as secure in their understanding as we think they do,” Carroll says.
To be sure surrogates fully understand, ICU teams can use “closed loop” communication during bedside updates and family meetings. “While this is an everyday occurrence for us as providers, we need to remember that these are often the most important conversations of many surrogates’ and patients’ lives, and that shouldn’t be taken lightly,” Carroll says.
ICU staff can ask, “What questions can I answer about what we just discussed?” or “What aspects of your loved one’s care has been confusing or unclear?”
“As opposed to making surrogates feel that you think they don’t understand, remind them that the complexity of the situation is difficult for anyone to fully comprehend,” Carroll suggests.
During a family meeting, Carroll summarizes the hospital course starting at the beginning, and periodically stops to ask if there is anything that needs clarification. “Ensuring it is a two-way conversation, as opposed to just spewing out information, is imperative,” Carroll stresses.
Patients without decision-making capacity may be represented by proxies who are appointed in advance by the patient or surrogates who are relatives or close friends who assume the role of decision-maker by default.
“The role of third-party decision-makers have come to play an increasingly expanded role in healthcare over the past three decades,” observes Jacob M. Appel, MD, JD, MPH, HEC-C, director of ethics education in psychiatry at Icahn School of Medicine at Mount Sinai in New York City.
In most cases, the role of the proxy or surrogate is to make the choice that the patient would have wanted. To meet this important ethical obligation, the decision-maker must be informed about the patient’s wishes. The decision-maker also must understand the medical situation sufficiently to allow care to be informed by those wishes.
“One challenge that frequently arises in clinical care is that physicians and agents have different understandings of the patient’s medical circumstances,” says Appel, an attending physician at Mount Sinai Health System.
Often, this is not apparent to the clinical team. Some decision-makers do not ask any questions, hesitating to admit they are confused.
“An inherent power imbalance exists between physicians and agents. Many agents — particularly those with limited social capital or healthcare literacy — may not feel they are in a position to request clarification,” Appel notes.
Wishful thinking can cloud the surrogate’s perception of the information conveyed. For instance, a physician’s comment suggesting the patient has a “minimal chance of recovery” may be interpreted by the surrogate as a hopeful sign the patient may indeed recover. “Physicians must listen carefully to agents and give them ample time to process information and to ask questions,” Appel says.
Many physicians end the conversation by asking, “Do you understand?” In Appel’s experience, this rarely is helpful. Surrogates usually respond affirmatively without voicing questions or concerns. Appel suggests clinicians instead offer a statement such as, “Please help me understand what you know about your loved one’s condition, and what you’d like to know.” A decision-maker may respond by describing the patient’s prognosis as far better than it actually is. “This conversation offers an excellent opportunity for physicians to clarify misperceptions,” Appel says.
The clinical team should reflect on the situation in which surrogates find themselves, Appel suggests. Surrogates are called on to render high-stakes decisions on subjects they know little about. Decisions must be made quickly and suddenly at a time of emotional distress.
“Outcomes that may be obvious to physicians, who have considerable experience with similar cases, may not be at all apparent to agents who have never found themselves in such a situation before,” Appel says.
- Carroll E, Giles J, Lewis A. An evaluation of surrogate decision maker health literacy in the neurology ward and neuroscience ICU. J Neurol Sci 2023;444:120525.
In the view of clinicians, surrogates of patients with higher acuity of illness could better understand the clinical situation. However, those surrogates might be less likely to correctly identify all the affected organ systems. Surrogates who seem to strongly grasp the situation may not actually feel as secure in their understanding.
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