Shared Decision Making to Improve Goals-of-Care Decisions for Families of Severe Acute Brain Injury Patients

Severe acute brain injury (SABI), including large artery acute ischemic stroke, intracerebral
hemorrhage, and severe traumatic brain injury continue to be the leading cause of death and
disability in adults in the U.S, accounting for more than 200,000 of the acute brain
injury-related deaths in the U.S. annually. Patients with SABI are critically ill and most
commonly require mechanical ventilation and supportive medical care with artificial nutrition
to ensure survival. However, due to concerns for a poor long-term quality of life, withdrawal
of mechanical ventilation and supportive medical care with transition to comfort care is by
far the most common cause of death in SABI but occurs at a highly variable rate (for example
in TBI 45-90%) at different trauma centers. Shared decision making is a collaborative process
that enhances patients' and surrogates' understanding about prognosis, encourages them to
actively weigh the risks and benefits of a treatment, and to match them to patient
preferences, thereby decreasing decisional conflict and improving decision quality and health
related outcomes. Decision aids (DAs) are shared decision-making tools which have been
successfully implemented and validated for many other diseases to assist difficult decision
making. No DA currently exists for goals-of-care decisions in SABI. Such a patient- and
family-centered DA has the potential to improve decision-making for SABI patients by ensuring
proxies receive consistent, evidence-based prognostication while also addressing patients'
preferences and values. The investigators have developed a pilot DA for goals of care
decisions by surrogates of SABI patients using qualitative research using semi-structured
interviews in surrogate decision makers of TBI patients and physicians, followed by an
iterative feedback process with feedback by surrogates, physicians, and other stakeholders
(ICU nurses). The investigators now propose to pilot-test a DA for surrogates of SABI
patients in a feasibility trial.

Inclusion Criteria:

- ≥18 years of age; no upper age limit

- Documented health care proxy or legal next of kin of admitted SABI patient with
traumatic brain injury, intracerebral hemorrhage or acute ischemic stroke.

- ≥3 days after insult ("stabilization period"); clinical team may ask study team to
wait longer if clinically indicated

- SABI patient remains "critically ill" after 3 days defined as: either intubated and
mechanically ventilated, or unable to swallow, needing feeding tube beyond hospital
discharge (even if not intubated)

- Surrogate is physically present in ICU to receive decision aid and participate in
planned family meeting in person (not over phone)

Exclusion Criteria:

- Devastating SABI near death

- Patient will be extubated and pass swallow evaluation (as deemed by clinical team)

- Surrogate is non-English speaking and no interpreter available to translate decision
aid (no available validated, translated decision aid version)

- Surrogate is illiterate