Project Summary / Abstract
Every 30 seconds an adult in the U.S. suffers a severe acute brain injury (SABI) after a traumatic brain injury,
large ischemic stroke or intracerebral hemorrhage, resulting in 200,000 deaths and >900,000 survivors living with
disability annually. Every day, surrogate decision makers face the difficult “goals of care” decision in intensive
care units (ICUs) to continue or withdraw life support while considering the patient’s long-term prognosis. The
stakes for ill-informed goals of care decisions and miscommunications about the prognosis are especially high in
patients with SABI; there is the potential for a premature decision leading to the death of a patient who may
potentially have survived with a good outcome had treatment been continued, or, conversely, prolongation of life
with severe physical and cognitive dysfunction which the patient would not have chosen. In this proposal, we
seek to develop a pragmatic, scalable, conceptually grounded intervention to overcome ongoing problems with
high stakes decision-making by surrogates of patients with SABI in ICUs. Our long-term goal is to improve the
clinical care for SABI patients in neuroICUs by enhancing clinician-family communication and empowering
surrogates to make better informed decisions concordant with patient values. To achieve our goal, we will
develop a web and mobile/tablet-based intervention for use by surrogates and clinicians (this R21), then test in a
multicenter, randomized trial the intervention’s impact on patient outcomes, the quality of surrogate decision-
making, families’ psychological outcomes, and health care utilization (subsequent R01). In our previous research
we developed a highly usable and acceptable, tailored, paper-based decision aid for families of critically ill SABI
patients. Now we plan to widen the tool’s use by leveraging a digital platform, which is more portable and
shareable among family members when geographically distant or not allowed to visit the ICU (as during the
COVID-19 pandemic) and allows integration of videos to reach lower-literacy groups. We propose a tool that
prepares families for their surrogate role and discussions with clinicians; provides balanced information to
families on prognosis and all available treatment options; provides tailored information about the patient and
family to clinicians in advance of family meetings; and serves as a communication guide for clinicians in the
clinician-family meeting. The project’s Specific Aims are to 1) develop an adaptive, user-friendly digital decision
aid and communication (DA+C) tool by applying user experience design and eye tracking; 2) assess usability and
acceptability of the new DA+C tool; and 3) conduct a pilot study in surrogates of SABI patients at high risk of
death and disability to assess the DA+C tool’s feasibility in the ICU and explore its impact on key elements of
decision making quality. The research will have high impact as it will yield a rigorously developed intervention and
crucial preliminary data needed to conduct a multicenter trial to assess the intervention’s impact on patient, family
and health-systems outcomes. The proposed research is innovative through application of user experience
design and eye tracking methods. The work is feasible in our hands, as we have the expertise needed, have
successfully used all methods proposed here and have obtained buy-in from all relevant clinical services.
