This essay critiques the fiercely utilitarian allocation scheme of Cameron et al. Children have no hope of recovery if their lives are cut short based on administrative protocols that misrepresent the nature of their conditions. Unilateral futility judgements - especially those based on a false predicate - are discriminatory. When considering the best interests of children, we should see possibility in disability and not advance ill-informed utilitarianism.

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.

Neuroethics Now welcomes articles addressing the ethical application of neuroscience in research and patient care, as well as its impact on society.

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)