This article provides an ethical analysis of the U.S. practice guideline update on disorders of consciousness. Our analysis focuses on the guideline’s recommendations regarding the use of investigational neuroimaging methods to assess brain‐injured patients. Complex and multifaceted ethical issues have emerged because these methods alter the clinical understanding of consciousness. We address issues of false hope, patient suffering, and cost. We argue that, in spite of these concerns, there is significant benefit to using neuroimaging to assess brain‐injured patients in most (...) cases. (shrink)

Which systems/organisms are conscious? New tests for consciousness (‘C-tests’) are urgently needed. There is persisting uncertainty about when consciousness arises in human development, when it is lost due to neurological disorders and brain injury, and how it is distributed in nonhuman species. This need is amplified by recent and rapid developments in artificial intelligence (AI), neural organoids, and xenobot technology. Although a number of C-tests have been proposed in recent years, most are of limited use, and currently we have no (...) C-tests for many of the populations for which they are most critical. Here, we identify challenges facing any attempt to develop C-tests, propose a multidimensional classification of such tests, and identify strategies that might be used to validate them. (shrink)

Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques (...) are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict recovery, and this information would help families and health providers. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to “yes” or “no” answers, and cost. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. The objectives of this research are to: (1) create an approach to capacity assessment using neuroimaging; (2) develop an ethics of welfare framework to guide considerations of quality of life; (3) explore the impact of neuroimaging on families; and, (4) analyze the ethics of the use of neuroimaging in comatose patients. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)

In this chapter, it is argued that the Mind-Body Powers model of neural correlates of consciousness provides a metaphysical framework that yields the theoretical possibility of empirically detecting consciousness. Since the model is informed by an Aristotelian-Thomistic hylomorphic ontology rather than a physicalist ontology, it provides a philosophical foundation for the science of consciousness that is an alternative to physicalism. Our claim is not that the Mind-Body Powers model provides the only alternative, but rather that it provides a sufficient framework (...) for empirically detecting and scientifically studying consciousness. Elsewhere, the integrated information theory’s prediction about the neural correlate of being conscious has been used to illustrate how the Mind-Body Powers model grounds the possibility of empirically detecting consciousness (see M. Owen, 2021, ch. 8). The theory’s prediction was used as one plausible example of a hypothesis about the nature and location of the neural correlate that can be combined with the model. However, there is no settled conclusion about which neurobiological theory of consciousness accurately identifies the neural mechanisms corresponding to being conscious (NAS, 2021, p. 39; Sattin et al., 2021; Seth, 2017; Seth & Bayne, 2022). Therefore, this work will employ another plausible neurobiological prediction provided by the Temporal Circuit Hypothesis. The hypothesis is combined with the Mind-Body Powers model to demonstrate that empirically detecting consciousness is metaphysically plausible wholly apart from a physicalist framework. (shrink)

Functional MRI shows promise as a candidate prognostication method in acutely comatose patients following severe brain injury. However, further research is needed before this technique becomes appropriate for clinical practice. Drawing on a clinical case, we investigate the process of obtaining informed consent for this kind of research and identify four ethical issues. After describing each issue, we propose potential solutions which would make a patient’s participation in research compatible with her rights and interests. First, we defend the need for (...) traditional proxy consent against two alternative approaches. Second, we examine the impact of the intensive care unit environment on the informed consent process. Third, we discuss the therapeutic misconception and its potential influence on informed consent. Finally, we deal with issues of timing in recruiting participants and related factors which may affect the risks of participation. (shrink)

:Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and (...) end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations. (shrink)

BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who were (...) enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results. (shrink)

This study aimed to develop a valid and reliable performance analysis template for quantifying team action variables in elite men’s wheelchair basketball. First action variables and operational definitions were identified by the authors and verified by an expert panel of wheelchair basketball coaching staff in order to establish expert validity. A total of 109 action variable were then placed into 17 agreed Categorical Predictor Variable categories. The action variables were then used to develop a computerized performance analysis template for post-event (...) analysis. Each possession (n = 200) from an international men’s wheelchair basketball game was analyzed by the first author on two occasions for assessment of intra-observer reliability and by a coach and a performance analyst for inter-observer reliability. Percentage error and Weighted Kappa coefficients were calculated to compare the levels of error and agreement for each action variable. Intra-observer reliability demonstrated perfect or almost perfect agreement (. (shrink)

After severe brain injury, one of the key challenges for medical doctors is to determine the patient’s prognosis. Who will do well? Who will not do well? Physicians need to know this, and families need to do this too, to address choices regarding the continuation of life supporting therapies. However, current prognostication methods are insufficient to provide a reliable prognosis. -/- Functional Magnetic Resonance Imaging (MRI) holds considerable promise for improving the accuracy of prognosis in acute brain injury patients. Nonetheless, (...) research on functional MRI in the intensive care unit context is ethically challenging. These studies raise several ethical issues that have not been addressed so far. In this article, Prof. Charles Weijer and his co-workers provide a framework for researchers and ethics committees to design and review these studies in an ethically sound way. (shrink)

Rapid technological advances have produced a variety of novel techniques that allow a comprehensive assessment of brain function to be combined with detailed information about brain structure and connectivity. Any assessment that is based on exhibited behavior after brain injury will be prone to error for a number of reasons. These questions are explored in the context of recent studies in both healthy populations and brain injured patients that have sought to investigate covert awareness through the use of functional neuroimaging. (...) Those circumstances in which functional magnetic resonance imaging data can be used to infer awareness in the absence of a behavioral response are contrasted with those circumstances in which it cannot. This distinction is fundamental for understanding and interpreting patterns of brain activity following acute brain injury and has implications for clinical care, diagnosis, prognosis, and medicolegal decision-making after serious brain injury. (shrink)

Over the last few decades, neuroimaging techniques have transformed our understanding of the brain and the effect of neurological conditions on brain function. More recently, light-based modalities such as functional near-infrared spectroscopy have gained popularity as tools to study brain function at the bedside. A recent application is to assess residual awareness in patients with disorders of consciousness, as some patients retain awareness albeit lacking all behavioural response to commands. Functional near-infrared spectroscopy can play a vital role in identifying these (...) patients by assessing command-driven brain activity. The goal of this review is to summarise the studies reported on this topic, to discuss the technical and ethical challenges of working with patients with disorders of consciousness, and to outline promising future directions in this field. (shrink)

In medical research, hypothesis tests are used to determine if a novel treatment is efficacious in comparison to a control treatment. Traditionally two-sided tests are recommended and one-sided tests are not. In this review the arguments for two- and one-sided tests are presented. It is argued that in many applications one-sided tests are appropriate and that two-sided tests may expose research subjects to unnecessary risk, and are therefore unethical.

The increasing availability of passively observed data has yielded a growing interest in “data fusion” methods, which involve merging data from observational and experimental sources to draw causal conclusions. Such methods often require a precarious tradeoff between the unknown bias in the observational dataset and the often-large variance in the experimental dataset. We propose an alternative approach, which avoids this tradeoff: rather than using observational data for inference, we use it to design a more efficient experiment. We consider the case (...) of a stratified experiment with a binary outcome and suppose pilot estimates for the stratum potential outcome variances can be obtained from the observational study. We extend existing results to generate confidence sets for these variances, while accounting for the possibility of unmeasured confounding. Then, we pose the experimental design problem as a regret minimization problem subject to the constraints imposed by our confidence sets. We show that this problem can be converted into a concave maximization and solved using conventional methods. Finally, we demonstrate the practical utility of our methods using data from the Women’s Health Initiative. (shrink)

This essay offers a critical examination of two recent Holocaust films that exemplify contrasting approaches to Holocaust representation: Peter Forgacs’s 1997 The maelstrom: A family chronicle and Quentin tarantino’s 2009 Inglourious basterds. One film is historical; the other translates history to figurative exaggeration. The essay explores how The maelstrom positions viewers within the constructed subjunctive spaces of the film, while Inglourious basterds positions viewers as spectators of history as comic book. Looking at these films together illuminates competing rhetorical claims to (...) expertise in film production and reception, and, in the context of Holocaust memory, the levels of expertise required of viewing audiences. Moreover, the analysis reveals that rhetorical aporia no longer dominates inventional possibilities for cinematic memory construction of the Holocaust. (shrink)

Idiopathic Parkinson’s disease impairs working memory, but the exact nature of this deficit in terms of the underlying cognitive mechanisms is not well understood. In this study patients with mild clinical symptoms of PD were compared with matched healthy control subjects on a computerized battery of tests designed to assess spatial working memory and verbal working memory. In the spatial working memory task, subjects were required to recall a sequence of four locations. The verbal working memory task was methodologically identical (...) except for the modality of the stimuli used, requiring subjects to orally recall a sequence of six digits. In either case, half of the sequences were structured in a way that allowed ‘chunking’, while others were unstructured. This manipulation was designed to dissociate the strategic component of task performance from the memory-load component. Mild medicated patients with PD were impaired only on the structured versions of the verbal working memory tasks. The analogous deficit in the spatial working memory was less pronounced. These findings are in agreement with the hypothesis that working memory deficits in PD reflect mainly the executive component of the tasks and that the deficits may be at least partly modality-independent. (shrink)