Improving Decision Making for Patients With Prolonged Mechanical Ventilation

The process of making a decision about whether or not to provide prolonged life support is seriously deficient among clinicians and the surrogate decision makers for critically ill patients. To address this problem, we propose a randomized, controlled trial to determine if an innovative web-based decision aid compared to usual care control can improve the quality of decision making (defined as clinician-surrogate concordance for prognosis, quality of communication, and medical comprehension), reduce surrogates' psychological distress (depression, anxiety, and post-traumatic stress syndrome disorder (PTSD) symptoms), and reduce patients' health care costs over 6-month follow up. We will enroll 410 surrogate decision makers for 273 patients (expected average of 1.5 surrogates per patient). This study has the potential both to improve how clinicians and surrogates interact in intensive care units and to increase the likelihood that life support decisions are aligned with patients' values.

Inclusion criteria

(Patient characteristics required for surrogate inclusion)

• age ≥18
• ≥10 days of mechanical ventilation interrupted by <96 continuous hours of unassisted breathing (including invasive and non-invasive ventilation)
• no anticipation of imminent (24 hours) death or extubation by the attending.

Exclusion criteria

(Patient characteristics that will exclude surrogates from study enrollment):

• possession of decisional capacity
• no identifiable surrogate, surrogate is unavailable for study procedures such as interviews
• imminent organ transplantation
• chronic neuromuscular disease
• physician refuses permission to approach family and/or patient for consent
• admission for severe burns
• admission for high cervical spine injury
• ventilation for >21 days.

Inclusion criteria

for surrogate decision makers:

• age ≥18
• self-identified as participating directly in health care decision making for the incapable patient under relevant state law

Exclusion criteria

for surrogate decision makers:

• do not personally know the patient
• need translation assistance because of poor English fluency (the decision aid has not been validated in other languages)
• history of clinically important neurological disorder (e.g., dementia)
• patient dies after meeting inclusion criteria but before surrogates provide consent

Physician and nurse inclusion criteria:

• ICU attending or fellow (physicians) at the time of surrogate enrollment
• bedside ICU nurse present at the time of surrogate enrollment