A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state (VS), demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life (QoL). We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery.

This article addresses questions surrounding the minimally conscious state (MCS) from the perspective of adult clinical ethics. It describes the background of the MCS diagnosis, analyzes phenomenological ambiguities inherent in the nature of MCS, and raises epistemological concerns surrounding its diagnosis. It argues that in many cases, the burdens of prolonging treatment for people who have sustained certain severe brain injuries (SBI) outweigh the benefits, even if they are in or have the prospect of entering into MCS. It also argues that often such long-term measures are problematic from the perspective of patient preferences and stewardship of resources. Consequently, it suggests that the delineation of MCS as a distinct neurological state, along with research that seeks to expand how MCS is diagnosed, poses ethical difficulties for families and providers making decisions for affected patients.

The literature about the care givers of patients with Disorders of Consciousness (DOCs) has highlighted the impact on both mental and physical dimensions of quality of life. This study aimed to: (1) describe emotional burden, quality of life, and coping styles in care givers of hospitalized patients with DOCs, compared to Italian normative data; (2) explore the relationships between these variables and their associations with socio-demographic features; and (3) describe their changes over time.

Fifteen care givers of patients with DOCs, mostly middle-aged women, were assessed using the Family Strain Questionnaire, the SF-36 Health Survey, and the Coping Orientation to Problems Experienced – Nuova Versione Italiana. Eleven subjects were also assessed after 6 and 12 months. Data were analysed through descriptive statistics, correlations, and nonparametric tests of group differences.

Compared to the Italian normative data, our sample showed a worse outcome in mental health, social functioning, global mental component, and emotional role functioning. Furthermore, subjects with high emotional burden had more thoughts of death compared to subjects with low emotional burden. Follow-up analyses revealed no variables changed over time.

These results highlight the need for psychological interventions and support, since care givers represent an important part of an all-embracing support and care network for patients with DOCs.

Consciousness defines us as persons. It allows us to have both pleasurable and painful experiences. I present four neurological conditions in the clinical setting to explore how consciousness can be beneficial or harmful to patients: intraoperative awareness, prolonged disorders of consciousness, locked-in syndrome, and the effects of narcotics and sedation on terminally ill patients. The ethical significance of consciousness for patients in these conditions depends on two factors: the content of one’s experience and whether one can report this content to others. I argue that the value or disvalue of phenomenal consciousness, what it is like to be aware, may depend on its relation to access consciousness, the ability to report or communicate the content of awareness. Phenomenal consciousness can have disvalue when one wants or expects to be unconscious. It can also have disvalue in the absence of access consciousness because it can allow the patient to experience pain and suffer. Technology that enabled neurologically compromised patients to reliably communicate their experience and wishes could benefit and prevent harm to them. More generally, the neurological conditions I discuss raise the question of when and in what respects consciousness is preferable to unconsciousness.

In the 2015 David Kopf Lecture on Neuroethics of the Society for Neuroscience, Dr. Joseph Fins presents his work on neuroethics and disorders of consciousness through the experience of Maggie and Nancy Worthen, a young woman who sustained a severe brain injury and her mother who cared for her. The central protagonists in his book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge University Press, 2015), their experience is emblematic of the challenges faced by families touched by severe brain injury and the possibility for improved diagnosis and treatment offered by progress in neuroscience. By telling their story, and those of other families interviewed as part of the research for Rights Come to Mind, Fins calls for improved care for this population arguing that this is both an access to care issue and a civil and disability rights issue worthy of greater societal attention.

Objectives: Functional magnetic resonance imaging (fMRI) may be adopted as a complementary tool for bedside observation in the disorders of consciousness (DOC). However, the diagnostic value of this technique is still debated because of the lack of accuracy in determining levels of consciousness within a single patient. Recently, Giacino and colleagues (2014) hypothesized that a longitudinal fMRI evaluation may provide a more informative assessment in the detection of residual awareness. The aim of this study was to measure the correspondence between clinically defined level of awareness and neural responses within a single DOC patient. Methods: We used a follow-up fMRI design in combination with a passive speech-processing task. Patient’s consciousness was measured through time by using the Coma Recovery Scale. Results: The patient progressed from a vegetative state (VS) to a minimally conscious state (MCS). Patient’s task-related neural responses mirrored the clinical change from a VS to an MCS. Specifically, while in an MCS, but not a VS, the patient showed a selective recruitment of the left angular gyrus when he listened to a native speech narrative, as compared to the reverse presentation of the same stimulus. Furthermore, the patient showed an increased response in the language-related brain network and a greater deactivation in the default mode network following his progression to an MCS. Conclusions: Our findings indicate that longitudinal assessment of brain responses to passive stimuli can contribute to the definition of the clinical status in individual patients with DOC and represents an adequate counterpart of the bedside assessment during the diagnostic decision-making process. (JINS, 2016, 22, 620–630)

The long-term outcome of persons with impaired consciousness after brain injury remains relatively unclear. The first 12 months post ictus are widely reported as the period of greatest change, with an estimated 20% of persons with traumatic brain injury recovering consciousness. However, beyond 12 months post traumatic and 6 months post-nontraumatic injury the chances of further recovery are thought to diminish significantly. The aim of this study was to investigate the behavioural and psychosocial outcome of 12 patients with impaired consciousness 2 years post ictus. At the time of recruitment five of these patients met the diagnostic criteria defining the vegetative state and seven of these patients met the diagnostic criteria defining the minimally conscious state. Patients were assessed using the Wessex Head Injury Matrix at recruitment and again at least 2 years after initial contact. Functional and psychosocial outcome were also explored. Most patients showed some improvements to their behavioural portfolio, but all were still very dependent physically and all required a high level of support in their activities of daily living. None of the patients had emerged from their original condition, despite exhibiting larger behavioural portfolios. The implications of these findings for the management of patients in low awareness states are discussed.

This article is concerned with patients in coma, the vegetative, or minimally conscious states. Studies addressing the issue of assessment and management of these patients are described. These include (a) the development of an assessment tool (Wessex Head Injury Matrix, WHIM); (b) use of the WHIM to assess the effects of posture on arousal, showing that some 75% of patients show more behaviours when assessed while they are in a standing frame than when supine; (c) a comparison of the WHIM with the Glasgow Coma Scale, demonstrating that the WHIM is more sensitive than the GCS for measuring the behavioural repertoire of people in states of reduced consciousness; (d) a discussion of situations when neuro-imaging techniques are required to assess residual functioning; and (e) the long term outcome of one of the first vegetative patients to be scanned with Positron Emission Tomography (PET). We conclude with a discussion about neuropsychology and patients in states of impaired consciousness.

How can we disentangle the neural basis of phenomenal consciousness from the neural machinery of the cognitive access that underlies reports of phenomenal consciousness? We see the problem in stark form if we ask how we can tell whether representations inside a Fodorian module are phenomenally conscious. The methodology would seem straightforward: Find the neural natural kinds that are the basis of phenomenal consciousness in clear cases – when subjects are completely confident and we have no reason to doubt their authority – and look to see whether those neural natural kinds exist within Fodorian modules. But a puzzle arises: Do we include the machinery underlying reportability within the neural natural kinds of the clear cases? If the answer is “Yes,” then there can be no phenomenally conscious representations in Fodorian modules. But how can we know if the answer is “Yes”? The suggested methodology requires an answer to the question it was supposed to answer! This target article argues for an abstract solution to the problem and exhibits a source of empirical data that is relevant, data that show that in a certain sense phenomenal consciousness overflows cognitive accessibility. I argue that we can find a neural realizer of this overflow if we assume that the neural basis of phenomenal consciousness does not include the neural basis of cognitive accessibility and that this assumption is justified (other things being equal) by the explanations it allows.

Background: Very few studies have approached the issue of persistent vegetative state (PVS) within the elderly population. This study aims to assess the prevalence, determinants and prognosis of elderly patients with PVS admitted to a long-term geriatric facility.

Methods: We conducted a cohort study in the setting of a Skilled Geriatric Nursing Department. All patients admitted during a 17-month period (N = 88) were included and tested for a diagnosis of PVS according to the Disability Rating Scale (DRS).

Results: A clinical diagnosis of PVS was given to 15% of patients upon admission, whereas the DRS diagnosed 30.5% of patients as having PVS. During the study period, 12 out of 31 patients with PVS died, with a median survival of 127 days (range: 1–517 days).

Conclusion: Our study suggests that PVS is an advanced stage in the natural history of dementia in the elderly. The low proportion of patients with PVS recognized as having this disorder upon admission suggests a low awareness among hospital personnel. Further studies of the prevalence and determinants of PVS in the severely disabled elderly population are warranted.