Perhaps the eeriest thing about these patients in limbo is that their very voicelessness makes them invisible. Studies on the condition of ICU survivors have identified “
post-intensive care syndrome,” which refers to new or worsening physical, mental, and neurocognitive disorders “that negatively affect daily functioning and quality of life in survivors of critical illness.” But the data on PICS exclude these worst-off patients because they cannot participate in testing or give informed consent.
For example, a large study on the
incidence of neuropsychological dysfunction in ICU survivors “excluded patients with substantial recent ICU exposure … patients who could not be reliably assessed for delirium … patients for whom follow-up would be difficult … patients for whom informed consent could not be obtained; and patients at high risk for preexisting cognitive deficits owing to neurodegenerative disease, recent cardiac surgery, suspected anoxic brain injury, or severe dementia.” Such exclusions result in an unrealistically rosy picture of the ICU-survivor population, and raise the question of what it means to survive.
