The Minimally Conscious State

Abstract

imited epidemiologic data undermine the identification of patients in a minimally conscious state (MCS) and needed health policy analysis. Based on the natural history of disorders of consciousness and the evolution of MCS, we propose 2 models to characterize MCS epidemiology: a severity model to integrate diagnostic and severity of injury codes, such as the Glasgow Outcome Scale (GOS) and the Glasgow Coma Scale (GCS) scores, and a venue model to track patient migration after hospital discharge through the acute, rehabilitative, and chronic care systems. We applied these analytics retrospectively to a New York State registry and the Centers for Disease Control and Prevention (CDC) 14-state study of traumatic brain injury (TBI). Extrapolations of national MCS incidence and prevalence depend on the severity marker used (GOS score vs GCS score); registry studied; discharge patterns; state variations; and life expectancy. The 14-state study modeled extrapolations (yield, 8844-25 088 patients Ͻ45 years) using GOS and GCS scores, respectively, as end points. Although these data are consistent with earlier estimates, the large variance points to the complexity of capturing evolving brain states and limitations of existing data sets as well as the conflation of general disability with disorders of consciousness in extant severity markers. These important concerns limit their generalizability and suggest an affirmative ethical obligation to prospectively collect reliable epidemiologic data to accurately characterize MCS demography.

Exploring caregivers’ knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness

“…Kitzinger and Kitzinger (2014a) have suggested that the root of caregiver distress is due to a lack of adequate knowledge about DOC. This is even more of a salient issue at non-specialty centers and long-term care facilities where misinformation can lead to an attitude of therapeutic nihilism towards persons in DOC even before prognosis or sometimes even diagnosis is clear (Fins, 2007, 2012; Fins & Hersh, 2011). This problem is further compounded by current healthcare legislation and barriers to accessing intensive rehabilitation in the post-acute stage (Whyte & Nakase-Richardson, 2013).…”

Exploring caregivers’ knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness

“…Kitzinger and Kitzinger (2014a) have suggested that the root of caregiver distress is due to a lack of adequate knowledge about DOC. This is even more of a salient issue at non-specialty centers and long-term care facilities where misinformation can lead to an attitude of therapeutic nihilism towards persons in DOC even before prognosis or sometimes even diagnosis is clear (Fins, 2007, 2012; Fins & Hersh, 2011). This problem is further compounded by current healthcare legislation and barriers to accessing intensive rehabilitation in the post-acute stage (Whyte & Nakase-Richardson, 2013).…”

Consciousness and the Ethics of Human Brain Organoid Research

“…In non-behavioral humans, for instance, we cannot use behavior to determine the presence of conscious states. Consider, for example, patients misdiagnosed as being in the vegetative state 22 -a state which by definition precludes consciousness-when in fact these patients retain "islands" of consciousness. 23 In such patients, the absence of behavior is mistakenly taken as evidence of the absence of consciousness.…”

Automatic Sensory Predictions: A Review of Predictive Mechanisms in the Brain and Their Link to Conscious Processing

“…The famous American case of patient Terri Schiavo (see e.g., Perry et al, 2005) is a good example of the important and nuanced medical, ethical, religious, social, familial, philosophical, and political debates around retained awareness and prognosis in patients suffering from DOC. About 50% of patients emerging from coma are expected to evolve into a MCS (Giacino et al, 2006), which is difficult to differentially diagnose from UWS because of intermittent signs of consciousness in MCS patients (Fins et al, 2007). Despite the immense societal importance, DOCs remain among the most poorly understood conditions of modern neurology (Boly et al, 2012).…”

Exploring caregivers’ knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness

“…Kitzinger and Kitzinger (2014a) have suggested that the root of caregiver distress is due to a lack of adequate knowledge about DOC. This is even more of a salient issue at non-specialty centers and long-term care facilities where misinformation can lead to an attitude of therapeutic nihilism towards persons in DOC even before prognosis or sometimes even diagnosis is clear (Fins, 2007, 2012; Fins & Hersh, 2011). This problem is further compounded by current healthcare legislation and barriers to accessing intensive rehabilitation in the post-acute stage (Whyte & Nakase-Richardson, 2013).…”

Consciousness and the Ethics of Human Brain Organoid Research

“…In non-behavioral humans, for instance, we cannot use behavior to determine the presence of conscious states. Consider, for example, patients misdiagnosed as being in the vegetative state 22 -a state which by definition precludes consciousness-when in fact these patients retain "islands" of consciousness. 23 In such patients, the absence of behavior is mistakenly taken as evidence of the absence of consciousness.…”

Automatic Sensory Predictions: A Review of Predictive Mechanisms in the Brain and Their Link to Conscious Processing

“…The famous American case of patient Terri Schiavo (see e.g., Perry et al, 2005) is a good example of the important and nuanced medical, ethical, religious, social, familial, philosophical, and political debates around retained awareness and prognosis in patients suffering from DOC. About 50% of patients emerging from coma are expected to evolve into a MCS (Giacino et al, 2006), which is difficult to differentially diagnose from UWS because of intermittent signs of consciousness in MCS patients (Fins et al, 2007). Despite the immense societal importance, DOCs remain among the most poorly understood conditions of modern neurology (Boly et al, 2012).…”

Exploring caregivers’ knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness

“…Kitzinger and Kitzinger (2014a) have suggested that the root of caregiver distress is due to a lack of adequate knowledge about DOC. This is even more of a salient issue at non-specialty centers and long-term care facilities where misinformation can lead to an attitude of therapeutic nihilism towards persons in DOC even before prognosis or sometimes even diagnosis is clear (Fins, 2007, 2012; Fins & Hersh, 2011). This problem is further compounded by current healthcare legislation and barriers to accessing intensive rehabilitation in the post-acute stage (Whyte & Nakase-Richardson, 2013).…”

Consciousness and the Ethics of Human Brain Organoid Research

“…In non-behavioral humans, for instance, we cannot use behavior to determine the presence of conscious states. Consider, for example, patients misdiagnosed as being in the vegetative state 22 -a state which by definition precludes consciousness-when in fact these patients retain "islands" of consciousness. 23 In such patients, the absence of behavior is mistakenly taken as evidence of the absence of consciousness.…”

Automatic Sensory Predictions: A Review of Predictive Mechanisms in the Brain and Their Link to Conscious Processing

“…The famous American case of patient Terri Schiavo (see e.g., Perry et al, 2005) is a good example of the important and nuanced medical, ethical, religious, social, familial, philosophical, and political debates around retained awareness and prognosis in patients suffering from DOC. About 50% of patients emerging from coma are expected to evolve into a MCS (Giacino et al, 2006), which is difficult to differentially diagnose from UWS because of intermittent signs of consciousness in MCS patients (Fins et al, 2007). Despite the immense societal importance, DOCs remain among the most poorly understood conditions of modern neurology (Boly et al, 2012).…”