LAUSR

The long-term effects of critical illness and critical care are starting to come into focus. Less clear is what should be done for critically ill patients after they leave the ICU. Every year, millions of people are admitted to an ICU (1). Hospitalizations are increasing, but mortality rates have declined (2–4). Thus, we are discharging ever more ICU survivors into the community. Our patients are alive but suffering: physical, cognitive, and psychologic impairments are limiting their living and their lives (5, 6). They are often unable to drive, work, or even stay at home: a cycle of rehospitalization frequently culminates in premature death (7–12). Their difficulties have increased awareness of postintensive care syndrome (PICS) (13–16). Yet, heightened awareness has been slow to translate into action, particularly as it relates to the care and management of ICU survivors. ICU follow-up clinics—which take many different forms but generally offer focused interdisciplinary care in the critical window immediately after discharge—are increasingly becoming a vital and viable advance in survivorship care, analogous to the cancer survivorship clinics that emerged over 2 decades ago (there are now over 300 cancer survivorship clinics in the world, with extensive research to support their efficacy). Our advocacy for intensivist-led ICU follow-up has been forged in focused interaction with survivors, where we have heard stories of challenge, struggle, and loss, and the articulation of several key themes: 1) “There is a disconnect between ICU level care and postdischarge care.” Patients report that their outpatient physicians have little understanding of the details of their critical illness. Primary care providers are often unable to spend the time necessary to understand the nuances of their lengthy critical illnesses, which may be detailed in thousands of pages of notes, reports, and flowsheets. Furthermore, they tell us that clinicians are often dismissive of the possibility that their critical illness could result in persistent sequelae. 2) “Knowledge about their newly acquired conditions and their future trajectories is scarce, among patients, families, and physicians.” Patients are puzzled by the presence of new physical, cognitive, and mental health problems after critical illness and lack the knowledge and context to understand these problems, or where to seek care for them. Their physicians may be unfamiliar with the typical trajectory of ICU care and recovery, leading them to make negative and sometimes catastrophic attributions that add to and accelerate patient anxiety. 3) “A postdischarge clinical resource that proactively addresses their unique needs and helps them anticipate and engage long-term recovery challenges is needed.” Patients frequently lament the absence of a clinic or clinician that would help them plan to address and recover from their various debilities. They often refer to their experience with clinics that help them manage their diabetes, pulmonary disease, or other chronic conditions and bemoan the absence of such a resource to assist them in coping with the effects of their critical illness: day-to-day problems that they characterize as even more pressing and debilitating than the other conditions for which they receive focused specialty treatment. 4) “There is a desire for clinical care that recognizes and is sensitive to patients’ limitations.” Substantial distance from home to clinic, driving deficits secondary to cognitive impairment, problems traveling due to chronic illness, financial barriers to care, lack of community support, and a paucity of communication between physicians and phases of care have been identified as barriers to ICU follow-up.