Identifying Meaningful Outcome Metrics in Severe Brain Injury

Neuroprognostication for patients who have experienced a brain injury, such as after cardiac arrest or trauma, is critical. Predictions of an “unfavorable” recovery frequently result in withdrawal of life-sustaining treatment (LST), and therefore death. Most studies view any degree of functional dependence as “unfavorable.” However, prior research has shown that many functionally dependent survivors of coma report favorable quality of life, and that acceptability of dependence may differ across racial groups. The potential consequences of this oversimplified, and perhaps biased, interpretation of acceptable outcomes are profound, as they may result in decisions to continue or withdraw of LST that do not align with patients’ understandings of an acceptable recovery. In this project, we will use surveys and semi-structured interviews to investigate the attitudes and preferences of patients and their families around acceptable outcomes after brain injury. We will also explore how these preferences may vary with respect to patient race. These results will inform future prognostication research, clinical practice, and health policy. 

Data collection for this study is complete. We conducted 20 semi-structured interviews with the surrogate decision-makers of patients experiencing disorders of consciousness following a severe brain injury. We asked participants to describe an acceptable recovery for their loved one and tell us about which desired recovery outcomes were most important to them. We are in the process of preparing a manuscript for publication. We are also conducting additional analyses to identify whether there are differences in decision-making and perspectives on recovery depending on the patient’s race.

We have presented preliminary findings at the Annual Assembly of Hospice and Palliative Care, 2026.

Leonard Davis Institute of Health Economics