The following is a summary of ‘’Do They Have a Choice? Surrogate Decision-Making After Severe Acute Brain Injury,” published in the July 2023 issue of Neurology by Goss et al.
Surrogate decision-makers for patients with severe acute brain injury (SABI) face uncertainty when making treatment decisions.
Researchers performed a retrospective study to explore the experiences and needs of surrogates during the active decision-making phase in SABI. As part of a larger study (n = 222) on patients and their family members, they interviewed surrogate decision-makers during the patients’ acute hospitalization. Data collection and analysis were guided by constructivist grounded theory. Semistructured interviews were conducted with 22 surrogates for 19 patients at a U.S. academic medical center without any interventions implemented.
Using coding, memos, and group discussions, they developed a thematic model linking surrogate perspectives on decision-making to their experiences of prognostic uncertainty. Study included 22 surrogates for 19 patients 20 to 79 years (mean age = 55 years) with diagnoses including stroke (n = 13; 68%), traumatic brain injury (n = 5; 26%), and anoxic brain injury(n = 1; 5%) after cardiac arrest. Patients were predominantly male (n = 12; 63%), whereas surrogates were predominantly female (n = 13; 68%). Two distinct decision-making perspectives emerged, with some surrogates feeling agency while others played a passive role. Both groups identified prognostic uncertainty as a challenge, but only those actively deciding found time-limited trials helpful.
The study concluded surrogate decision-makers in SABI often struggle with prognostic uncertainty and may not view themselves as making decisions. Longitudinal prognostic communication strategies are needed to address these challenges.