Neuroimaging studies of brain-damaged patients diagnosed as in the vegetative state suggest that the patients might be conscious. This might seem to raise no new ethical questions given that in related disputes both sides agree that evidence for consciousness gives strong reason to preserve life. We question this assumption. We clarify the widely held but obscure principle that consciousness is morally significant. It is hard to apply this principle to difficult cases given that philosophers of mind distinguish between a range (...) of notions of consciousness and that is unclear which of these is assumed by the principle. We suggest that the morally relevant notion is that of phenomenal consciousness and then use our analysis to interpret cases of brain damage. We argue that enjoyment of consciousness might actually give stronger moral reasons not to preserve a patient's life and, indeed, that these might be stronger when patients retain significant cognitive function. (shrink)

Consciousness and emotion feature prominently in our personal lives, yet remain enigmatic. Recent advances prompt further distinctions that should provide more experimental traction: we argue that emotion consists of an emotion state (functional aspects, including emo- tional response) as well as feelings (the conscious experience of the emotion), and that consciousness consists of level (e.g. coma, vegetative state and wake- fulness) and content (what it is we are conscious of). Not only is consciousness important to aspects of emotion but structures (...) that are important for emotion, such as brainstem nuclei and midline cortices, overlap with structures that regulate the level of consciousness. The intersection of consciousness and emotion is ripe for experimental investigation, and we outline possible examples for future studies. (shrink)

Although death statutes permitting physicians to declare brain death are relatively uniform throughout the United States, academic debate persists over the equivalency of human death and brain death. Alan Shewmon showed that the formerly accepted integration rationale was conceptually incomplete by showing that brain-dead patients demonstrated a degree of integration. We provide a more complete rationale for the equivalency of human death and brain death by defending a deeper understanding of the organism as a whole and by using a novel (...) strategy with shared objectives to justify death determination criteria. Our OaaW account describes different types of OaaW, defining human death as the loss of status as a human OaaW. We defend human death as similar to nonhuman death in terms of wakefulness, but also distinct in terms of the sui generis properties, particularly conscious awareness. We thereby defend the equivalency of brain death and human death using a resulting neurocentric rationale. (shrink)

BackgroundWhether patients in the vegetative state (VS), minimally conscious state (MCS) or the clinically related locked-in syndrome (LIS) should be kept alive is a matter of intense controversy. This study aimed to examine the moral attitudes of lay people to these questions, and the values and other factors that underlie these attitudes.MethodOne hundred ninety-nine US residents completed a survey using the online platform Mechanical Turk, comprising demographic questions, agreement with treatment withdrawal from each of the conditions, agreement with a series (...) of ethical principles and three personality tests.ResultsMore supported treatment withdrawal from VS (40.2 % agreed, 17.6 % disagreed) than MCS (20.6 %, 41.2 %) or LIS (25.3 %, 35.8 %). Agreement with treatment withdrawal was negatively correlated with religiosity (r = −0.272, P < 0.001), though showed no significant relationship with need for cognition or empathy, and only a partial association with utilitarian judgment in a standard moral dilemma. Support for treatment withdrawal was most strongly associated with endorsement of the importance of patient autonomy, dignity, suffering, best interests. Distributive justice was not given significant weight by most. Importantly, agreement with treatment withdrawal was noticeably higher when considered from a first as opposed to third person perspective for VS (Z = −6.056, P < 0.001), MCS (Z = −6.746, P < 0.001) and LIS (Z = −6.681, P < 0.001).ConclusionLay attitudes to withdrawal of treatment in brain damaged patients are largely shaped by values similar to those central to the secular ethical debate. Neither traditional values such as the sanctity of life nor utilitarian values relating to resource allocation seem to play a central role. Far greater weight is given to autonomy, which may explain why participants were far more willing to endorse withdrawal of treatment when the issue was presented in the first person, or in relation to a concrete case involving a patient’s explicit wishes. Surveys focusing on abstract cases presented in the third person may not provide an accurate picture of lay attitudes to these critical ethical questions. (shrink)

Ariane Lewis provided an insightful review of several controversial cases of death by neurologic criteria (“brain death”) in the UK, focusing on Archie Battersbee, a boy whose tragic illness provok...

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their consent for simple (...) medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an ethical frame to move (...) these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

In this essay I examine the formal structure of the concept of futility, enabling identification of the appropriate roles played by patient, professional, and society. I argue that the concept of futility does not justify unilateral decisions to forego life-sustaining medical treatment over patient or legitimate surrogate objection, even when futility is determined by a process or subject to ethics committee review. Furthermore, I argue for a limited positive ethical obligation on the part of health care professionals to assist patients (...) in achieving certain restricted goals, including the preservation of life, even in circumstances in which most would agree that that life is of no benefit to the patient. Finally, I address the objection that professional integrity overrides this limited obligation and find the objection unconvincing. In short, my aim in this essay is to see the concept of futility finally buried, once and for all. (shrink)

The phenomenal overflow thesis states that the content of phenomenally conscious mental states can exceed our capacities of cognitive access. Much of the philosophical and scientific debate about the phenomenal overflow thesis has been focused on vision, attention, and verbal report. My view is that we feel things in our bodies that we don’t always process with the resources of cognitive access. Thinking about the question of phenomenal overflow from the perspective of embodied affect rather than the content of visual (...) experience is the novel contribution of this paper. I argue that we have reason to think that hydranencephalic children are phenomenally conscious but incapable of cognitive access. Further, I claim that we should interpret the reactive behavior of these subjects in terms of a kind of access to content that is distinct from cognitive access, I call this novel form of access ‘affective access.’. (shrink)

Recently, brain imaging has provided controversial evidence of persisting awareness in some people whose brains are so severely injured that consciousness is minimal or absent, but in whom prolongation of life depends on the provision of continuing medical care. The clinicians understanding of the persistent vegetative state is briefly outlined and the evidence provided by brain imaging of awareness in this condition is reviewed. Information regarding consciousness in progressive acquired dementias are considered in the context of management of these conditions. (...) This leads to the conclusion that quality of consciousness was more important than its presence or absence in managing people with impaired consciousness. (shrink)

An adaptation of Pascal’s Wager argument has been considered useful in deciding about the provision of life-sustaining treatment for patients in persistent vegetative state. In this article, I assess whether people making such decisions should resort to the application of Pascal’s idea. I argue that there is no sufficient reason to give it an important role in making the decisions.

The management of patients suffering from chronic disorders of consciousness inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail (...) allowing the withdrawal of life sustaining therapy. This could happen when patients believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life. (shrink)

Disorders of consciousness (DOC) raise profound scientific, clinical, ethical, and philosophical issues. Growing knowledge on fundamental principles of brain organization in healthy individuals offers new opportunities for a better understanding of residual brain function in DOCs. We here discuss new perspectives derived from a recently proposed scheme of brain organization underlying consciousness in healthy individuals. In this scheme, thalamo-cortical networks can be divided into two, often antagonistic, global systems: (i) a system of externally oriented, sensory-motor networks (the ‘‘extrinsic’’ system); and (...) (ii) a system of inward-oriented networks (the ‘‘intrinsic’’ or default system). According to this framework, four distinct mental states would be possible that could be relevant for understanding DOCs. In normal healthy volunteers and locked-in syndrome patients, a state of high functionality of both the extrinsic and intrinsic or default systems is expected — associated with full awareness of environment and self. In this case, mental imagery tasks combined with fMRI can be used to detect covert awareness in patients that are unable to communicate. According to the framework, two complementary states of system imbalance are also possible, in which one system is in a hyperfunctional state, while the other is hypoactive. Extrinsic system hyperfunction is expected to lead to a state of total sensory-motor ‘‘absorption’’ or ‘‘lost self.’’ In contrast, intrinsic or default system hyperfunction is expected to lead to a state of complete detachment from the external world. A state where both extrinsic and intrinsic systems are hypofunctional is predicted to lead to markedly impaired consciousness as seen in DOCs. Finally, we review the potential use of ultra-slow fluctuations in BOLD signal as a tool for assessing the functional integrity of extrinsic and intrinsic systems during ‘‘resting state’’ fMRI acquisitions.. (shrink)

The history and genesis of major public clinical ethics controversies is intimately related to the publication of opinions and responses in media coverage. To provide a sample of public response in the media, this paper reports the results of a content analysis of letters to editors published in the four most prolific American newspapers for the Schiavo controversy. Opinions expressed in the letters sampled strongly supported the use of living wills and strongly condemned public attention to the case as well (...) as political interventions. Letters tended to be against withdrawal of life support, proxy consent and associated procedures as well as against court decisions and legal procedures. In comparison with reports written by journalists, letters to editors contained fewer controversial claims about Schiavo''s neurological condition and behavioural repertoire but similar loaded language to describe withdrawal of life support. Distinct public discourses can be encountered in different stakeholders suggesting complex and extensive pluralism even within the media. (shrink)

BackgroundMedia have increasingly reported on the difficulties associated with end-of-life decision-making in patients with Disorders of Consciousness (DOC), contextualizing such dilemma in detailed accounts of the patient’s life. Two of the first stories debated in the scientific community were those related to the cases of two women, one American, the other Italian, who captured attention of millions of people in the first years of this third millennium.MethodsMuch has been written about the challenges of surrogate decision-making for patients in DOC, but (...) less has been written comparing these challenges across legal systems and cultures. In our paper, we propose a systematic analysis of the final legal documents written by the American and Italian Courts in relation to the two cases, developing our discussion around three areas: the level of certainty/reliability of diagnosis and prognosis, the reconstruction of self-expression, time of illness and time of care. They are examples of the typical issues discussed by legal authors and allow us to understand the link and the difference between the legal and ethical perspectives.ResultsThe legal approach to the two cases has some common elements: the need to be certain about the diagnosis and prognosis and the fact that the clinical criteria are necessary in determining the most appropriate treatments, although these criteria are not sufficient unless they are supplemented by the patient’s will. The issue of relations takes on importance both from a legal and an ethical point of view, but from two different perspectives. While ethics safeguards relationships by guaranteeing their differences and makes them reconcilable, law safeguards relationships by guaranteeing the cold forms of respect, equality, impartiality, symmetry, reciprocity, and irreversibility. In this perspective, the link between the time of care and the decision of the family members assumes importance.ConclusionsThe most interesting point that emerges from our analysis is the issue of relationships and how they affect decisions, both from a legal and ethical point of view. For this reason, during the patients’ hospitalization, it is necessary to identify ways in which they might give their opinion about the moral issues underlying their choices. (shrink)

Deep brain stimulation has emerged as a “last resort” therapy for patients with prolonged disorders of consciousness. The latter encompasses a range of conditions including minimal conscious state and persistent vegetative state. Functional neuroimaging studies have shown that minimal conscious state and persistent vegetative state have different patterns of residual brain function and may therefore respond differently to deep brain stimulation. The failure to distinguish between the two conditions in this context can give rise to false expectation, misunderstanding and ill-guided (...) treatment. As a halfway technology for prolonged disorders of consciousness, deep brain stimulation could also produce improvement in awareness that is in fact harm, and its impact may involve a wide range of public interests. This paper will discuss related ethical and legal issues with an emphasis on the distinction between minimal conscious state and persistent vegetative state in the application of deep brain stimulation. (shrink)