An evaluation of surrogate decision maker health literacy in the neurology ward and neuroscience ICU

There has been little investigation into surrogate comprehension of education provided by the neuroscience healthcare team. We sought to evaluate 1) surrogate understanding about a patient's clinical condition and 2) the relationship between how surrogates and the neuroscience team perceive surrogate comprehension of a patient's condition. We prospectively surveyed surrogates of patients who lacked decision making capacity while admitted to the neurology ward or neuroscience ICU for >48 h from 10/2018–05/2021. The survey investigated the surrogate's communication with the neuroscience team and understanding of the hospitalization. A member of the neuroscience team was asked to provide clinical data about the patient and indicate how well they perceived the surrogate understood the situation. We surveyed 50 surrogates at a median of 10 (IQR 5–17) days after hospitalization. There were 38 (76%) surrogates who correctly identified the reason for admission, and 21 (42%) who correctly identified all the assessments/interventions performed. Nearly all surrogates rated their understanding of the patient's medical condition as excellent (47%) or good (49%). There was no to slight agreement (kappa = 0.133) between surrogate self-perception of understanding and neuroscience team perception of the surrogate's understanding. Although only 20% of surrogates used institutional electronic education materials, 74% discussed the hospitalization with friends/family who work in healthcare. Objective and subjective assessments of surrogate comprehension demonstrate that there is a need to improve communication with the surrogates of patients with neurological conditions. Neuroscience healthcare teams must be taught how to educate surrogates and assess their understanding. •Surrogates sometimes do not understand why a patient is in the hospital•Surrogates frequently discuss a patient's care with family or friends in healthcare•There is discord between surrogate and team perception of surrogate health literacy•Surrogates must have good health literacy to protect patient autonomy•Neuroscience teams must be taught how to assess surrogate understanding