The phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor that it might (...) make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)

In “Conscientious of the Conscious: Interactive Capacity as a Threshold Marker for Consciousness” (2013), Fischer and Truog argue that recent studies showing that some patients diagnosed as being in a vegetative state are in fact in a minimally conscious state raise various ethical questions for clinicians and family members. I argue that these findings raise a further ethical dilemma about how and whether to seek the involvement of the minimally conscious person herself in decisions about her care. There may be (...) a conflict between doing what is believed to accord with the patient’s prior stated wishes and/or her best interests, on the one hand, and respecting her own potential decision-making capacity and epistemic authority, on the other. (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 today’s society, it becomes increasingly important to assess which non-human and non-verbal beings possess consciousness. This review article aims to delineate criteria for consciousness especially in animals, while also taking into account intelligent artifacts. First, we circumscribe what we mean with “consciousness” and describe key features of subjective experience: qualitative richness, situatedness, intentionality and interpretation, integration and the combination of dynamic and stabilizing properties. We argue that consciousness has a biological function, which is to present the subject with a (...) multimodal, situational survey of the surrounding world and body, subserving complex decision-making and goal-directed behavior. This survey reflects the brain’s capacity for internal modeling of external events underlying changes in sensory state. Next, we follow an inside-out approach: how can the features of conscious experience, correlating to mechanisms inside the brain, be logically coupled to externally observable properties? Instead of proposing criteria that would each define a “hard” threshold for consciousness, we outline six indicators: goal-directed behavior and model-based learning; anatomic and physiological substrates for generating integrative multimodal representations; psychometrics and meta-cognition; episodic memory; susceptibility to illusions and multistable perception; and specific visuospatial behaviors. Rather than emphasizing a particular indicator as being decisive, we propose that the consistency amongst these indicators can serve to assess consciousness in particular species. The integration of scores on the various indicators yields an overall, graded criterion for consciousness, somewhat comparable to the Glasgow Coma Scale for unresponsive patients. When considering theoretically derived measures of consciousness, it is argued that their validity should not be assessed on the basis of a single quantifiable measure, but requires cross-examination across multiple pieces of evidence, including the indicators proposed here. Current intelligent machines, including deep learning neural networks and agile robots, are not indicated to be conscious yet. Instead of assessing machine consciousness by a brief Turing-type of test, evidence for it may gradually accumulate when we study machines ethologically and across time, considering multiple behaviors that require flexibility, improvisation, spontaneous problem-solving and the situational conspectus typically associated with conscious experience. (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 engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of accurately measuring the welfare (...) burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (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)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

In the future, policies surrounding end-of-life decisions will be faced with the question of whether competent people in a completely locked-in state should be enabled to make end-of-life decisions via brain-computer interfaces (BCI). This article raises ethical issues with acting through BCIs in the context of these decisions, specifically self-administration requirements within assisted suicide policies. We argue that enabling patients to end their life even once they have entered completely locked-in state might, paradoxically, prolong and uphold their quality of life.

This article explores how the law of England and Wales1 has responded thus far to medical and clinical advances that have enabled patients with prolonged disorders of consciousness to survive. The authors argue that, although the courts have taken account of much of the science, they are now lagging behind, with the result that some patients are being denied their legal rights under the Mental Capacity Act 2005. The article further argues that English law does not comply with the United (...) Kingdom’s commitments under the United Nations Convention on the Rights of Persons with Disabilities. Stressing the need for the law to keep in step with advances in science, the article concludes with robust recommendations for improvements, based on the latest research in neuroscience, to the way in which life-sustaining treatment decisions are made. This would mean that the wishes of patients, including those with covert awareness, can be better reflected in best interests assessments. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)