Recent progress in neurosciences has improved our understanding of chronic disorders of consciousness. One example of this advancement is the emergence of the new diagnostic category of minimally conscious state (MCS). The central characteristic of MCS is impaired consciousness. Though the phenomenon now referred to as MCS pre-existed its inclusion in diagnostic classifications, the current medical ethical concepts mainly apply to patients with normal consciousness and to non-conscious patients. Accordingly, how we morally should stand with persons (...) in minimally conscious state remains unclear. In this paper, I examine whether the notion of human dignity could provide us with guidance with the moral difficulties MCS gives rise to. More precisely, I focus on the question of whether we are justified in holding that persons in minimally conscious state possess human dignity. (shrink)

Abstract In a recent issue of Neuroethics , I considered whether the notion of human dignity could help us in solving the moral problems the advent of the diagnostic category of minimally conscious state (MCS) has brought forth. I argued that there is no adequate account of what justifies bestowing all MCS patients with the special worth referred to as human dignity. Therefore, I concluded, unless that difficulty can be solved we should resort to other values than (...) human dignity in addressing the moral problems MCS poses. In his new book Christopher Kaczor criticizes the argument I put forward. Below, I respond to Kaczor’s criticism. I maintain that the considerations he presents do not undermine my argument nor succeed in providing adequate justification for the view that all MCS patients possess the worth referred to as human dignity. Content Type Journal Article Category Original Paper Pages 1-11 DOI 10.1007/s12152-011-9147-z Authors Jukka Varelius, Department of Behavioural Sciences and Philosophy, University of Turku, Turku, 20014 Finland Journal Neuroethics Online ISSN 1874-5504 Print ISSN 1874-5490. (shrink)

In a recent issue of Neuroethics, I considered whether the notion of human dignity could help us in solving the moral problems the advent of the diagnostic category of minimally conscious state (MCS) has brought forth. I argued that there is no adequate account of what justifies bestowing all MCS patients with the special worth referred to as human dignity. Therefore, I concluded, unless that difficulty can be solved we should resort to other values than human dignity (...) in addressing the moral problems MCS poses. In his new book Christopher Kaczor criticizes the argument I put forward. Below, I respond to Kaczor’s criticism. I maintain that the considerations he presents do not undermine my argument nor succeed in providing adequate justification for the view that all MCS patients possess the worth referred to as human dignity. (shrink)

Neurostimulation to restore cognitive and physical functions is an innovative and promising technique for treating patients with severe brain injury that has resulted in a minimally conscious state (MCS). The technique may involve electrical stimulation of the central thalamus, which has extensive projections to the cerebral cortex. Yet it is unclear whether an improvement in neurological functions would result in a net benefit for these patients. Quality-of-life measurements would be necessary to determine whether any benefit of neurostimulation (...) outweighed any harm in their response to different degrees of cognitive and physical disability. These measures could also indicate whether the technique could be ethically justified and whether surrogates could give proxy consent to its use on brain-injured patients. (shrink)

Patients in a Minimally Conscious State (MCS) constitute a subgroup of awareness impaired patients who show minimal signs of awareness as opposed to patients in a Vegetative State who do not exhibit any such signs. While the empirical literature is rich in studies investigating either overt or covert signs of awareness in such patients the question of self-awareness has only scarcely been addressed. Even in the occasion where self-awareness is concerned, it is only higher-order or reflective (...) self-awareness that is the target of such investigations. In the first part of this paper, I briefly review the relevant clinical neuroscience literature to demonstrate that the conception of self-awareness at play in such studies is indeed that of reflective self-awareness. In the second part, I present the philosophical notion of pre-reflective (or minimal) self-awareness. This is shown to primarily refer to the implicit awareness of our embodied subjectivity which essentially permeates all our experiences. As discussed, this minimal self-awareness is not specifically addressed when clinically or experimentally assessing patients in MCS. My suggestion is that neuroimaging studies targeting minimal self-awareness as in First-Person Perspective-taking paradigms could be used with MCS patients to shed light on the question of whether those individuals are minimally self-aware even in the case where they lack self-reflective abilities. Empirical evidence of this kind could have important theoretical implications for the discussion about the notion of self-awareness but also potential medical and social/legal implications for awareness impaired patients’ management. (shrink)

Patients in a minimally conscious state (MCS) fall into a different diagnostic category than patients in the more familiar vegetative states (VS). Not only are MCS patients conscious in some sense, they have a higher chance for recovery than VS patients. Because of these differences, we ostensibly have reason to provide MCS patients with care that goes beyond what we provide to patients with some VS patients. But how to justify this differential treatment? I argue we (...) can’t justify it solely by looking to MCS patients’ actual levels of consciousness. We must look also to the ways in which these patients are potentially conscious. Specifically, I argue that certain sensible and well-regarded policy recommendations cannot be justified by looking solely to patients’ actual levels of consciousness, but that they can be justified by looking to patients’ potential for consciousness. Insofar then as we have prima facie reason to follow the recommendations, we also have prima facie reason to view the potential for consciousness as morally salient. If that is true, however, several important implications follow: first, if the potential for consciousness is morally salient, this translates into actual and pressing obligations to patients with disorders of consciousness generally. Second, if the potential for consciousness is morally salient, this has implications that go beyond our obligations to patients with disorders of consciousness. Indeed, if the potential for consciousness is morally salient, this adds an important layer of complexity to the normative landscape, a layer we may not have sufficiently noticed before. (shrink)

The right to die has for decades been recognised for persons in a vegetative state, but there remains controversy about ending life-sustaining medical treatment for persons in the minimally conscious state. The controversy is rooted in assumptions about the moral significance of consciousness, and the value of life for patients who are conscious and not terminally ill. This paper evaluates these assumptions in light of evidence that generates concerns about quality of life in the MCS. (...) It is argued that surrogates should be permitted to make decisions to withdraw life-sustaining medical treatment from patients in the MCS. (shrink)

Objective: The value of spontaneous EEG oscillations in distinguishing patients in vegetative and minimally conscious states was studied. Methods: We quantified dynamic repertoire of EEG oscillations in resting condition with closed eyes in patients in vegetative and minimally conscious states (VS and MCS). The exact composition of EEG oscillations was assessed by the probability-classification analysis of short-term EEG spectral patterns. Results: The probability of delta, theta and slow-alpha oscillations occurrence was smaller for patients in MCS than (...) for VS. Additionally, only patients in MCS demonstrated fast-alpha oscillation occurrence. Depending on the type and composition of EEG oscillations, the probability of their occurrence was either aetiology dependent or independent. The probability of EEG oscillations occurrence differentiated brain injuries with different aetiologies. Conclusions: Spontaneous EEG oscillations have a potential value in distinguishing patients in VS and MCS. Significance: This work may have implications for clinical care, rehabilitative programs and medical–legal decisions in patients with impaired consciousness states following coma due to acute brain injuries. (shrink)

The minimally conscious sta te (MCS) is usually ascribed when a patientwith brain damage exhibits obser vable volitional behaviors that predict recovery ofcognitive funct ions. Nevertheless, a patient with brain damage who lacks motorcapacit y might nonetheless be in MCS. For this reason, some clinicians use neuralsignals as a communicative means for MCS ascription. For instance, a vegetativestate patient is diagnosed with MCS if activity in the motor area is observed whenthe instruction to imagine wiggling toes is given. (...) The validi ty of using neuralsignals in ascribing MCS requires a special sort of inference. That is, no-reportparadigmatic assessments must have inductively strong ways of inferring a pur-ported informationa l content from the observed neural signal that grounds the factthat the patient has top-down cognitive control (or residual volition). Shannon’smathemat ical theory of communication and Bayes’ theorem reveals the formalstructure of neural communication. On the basis of relevant data from the neuro-science literature, I conclude that the formal structure combined with the data showsthat neural signals can be used as a communicative means for operational diagnosticcriteria for MCS ascription. (shrink)

The value of resting electroencephalogram (EEG) in revealing neural constitutes of consciousness (NCC) was examined. We quantified the dynamic repertoire, duration and oscillatory type of EEG microstates in eyes-closed rest in relation to the degree of expression of clinical self-consciousness. For NCC a model was suggested that contrasted normal, severely disturbed state of consciousness and state without consciousness. Patients with disorders of consciousness were used. Results suggested that the repertoire, duration and oscillatory type of EEG microstates in resting (...) condition quantitatively related to the level of consciousness expression in brain-damaged patients and healthy-conscious subjects. Specifically, results demonstrated that (a) decreased number of EEG microstate types was associated with altered states of consciousness, (b) unawareness was associated with the lack of diversity in EEG alpha-rhythmic microstates, and (c) the probability for the occurrence and duration of delta-, theta- and slow-alpha-rhythmic microstates were associated with unawareness, whereas the probability for the occurrence and duration of fast-alpha-rhythmic microstates were associated with consciousness. In conclusion, resting EEG has a potential value in revealing NCC. This work may have implications for clinical care and medical–legal decisions in patients with disorders of consciousness. (shrink)

Wijdicks and colleagues1 recently presented the Full Outline of UnResponsiveness (FOUR) scale as an alternative to the Glasgow Coma Scale (GCS)2 in the evaluation of consciousness in severely brain-damaged patients. They studied 120 patients in an intensive care setting (mainly neuro-intensive care) and claimed that “the FOUR score detects a locked-in syndrome, as well as the presence of a vegetative state.”1 We fully agree that the FOUR is advantageous in identifying locked-in patients given that it specifically tests for eye (...) movements or blinking on command. This is welcomed given that misdiagnosis of the locked-in syndrome has been shown to occur in more than half of the cases (see Laureys and colleagues3 for review). As for the diagnosis of the vegetative state, the scale explicitly tests for visual pursuit, and hence can disentangle the vegetative state from the minimally conscious state (MCS). The diagnostic criteria for MCS have been proposed4 only recently, but Wijdicks and colleagues1 do not mention the existence of this clinical entity in their article. As for the vegetative state, MCS can be encountered in the acute or subacute setting as a transitional state on the way to further recovery, or it can be a more chronic or even permanent condition. The MCS refers to patients showing inconsistent, albeit clearly discernible, minimal behavioral evidence of consciousness (eg, localization of noxious stimuli, eye fixation or tracking, reproducible movement to command, or nonfunctional verbalization).4 The FOUR scale does not test for all of the behavioral criteria required to diagnose MCS.4 It is known from the literature (see Majerus and colleagues5 for review) that about a third of patients diagnosed with vegetative state are actually in MCS, and this misdiagnosis can lead to major clinical, therapeutic, and ethical consequences. We tested the ability of the newly proposed FOUR scale to correctly diagnose the vegetative state in an acute (intensive care and neurology ward) and chronic (neurorehabilitation) setting.. (shrink)

The “disability paradox” is the idea that for those who become severely disabled, their own quality of life assessment remains at or slightly below the QoL assessments of normal controls. This is a source of skepticism regarding third-person QoL judgments of the disabled. I argue here that this skepticism applies as well to those who are in the minimally conscious state. For rather simple means of sustaining an MCS patient’s life, the cost of being wrong that the (...) patient would not want further support is high. Pair this cost with the reason to be skeptical of third-person judgments, and my argument suggests not withholding food and water from MCS patients. (shrink)

Background: Patients in a vegetative state pose problems in diagnosis, prognosis and treatment. Currently, no prognostic markers predict the chance of recovery, which has serious consequences, especially in end-of-life decision-making. Objective: We aimed to assess an objective measurement of prognosis using advanced electroencephalography (EEG). Methods: EEG data (19 channels) were collected in 14 patients who were diagnosed to be persistently vegetative based on repeated clinical evaluations at 3 months following brain damage. EEG structure parameters (amplitude, duration and variability within (...) quasi-stationary segments, as well as the spatial synchrony between such segments and the strength of this synchrony) were used to predict recovery of consciousness 3 months later. Results: The number and strength of cortical functional connections between EEG segments were higher in patients who recovered consciousness (P < .05 – P < .001) compared with those who did not recover. Linear regression analysis confirms that EEG structure parameters are capable of predicting (P = .0025) recovery of consciousness 6 months post-injury, whereas the same analysis failed to significantly predict patient outcome based on aspects of their clinical history alone (P = .629) or conventional EEG spectrum power (P = .473). Conclusions: The result of this preliminary study demonstrates that structural strategy of EEG analysis is better suited for providing prognosis of consciousness recovery than existing methods of clinical assessment and of conventional EEG. Our results may be a starting point for developing reliable prognosticators in patients who are in vegetative state, with the potential to improve their day-to-day management, quality of life, and access to early interventions. (shrink)

How should we treat patients diagnosed as being in a persistent vegetative state (PVS) or minimally conscious state (MCS)? More specifically, should we treat them as having the full moral status of persons? Yes, or so we argue. First, we introduce the medical conditions of PVS, MCS, and the related conditions of Locked-in Syndrome and covert awareness. Second, we characterize the main argument for thinking diagnosed PVS patients are not persons. Third, we contend that this argument (...) is defeated by mounting empirical evidence for the considerable uncertainty of PVS diagnoses. Fourth, we characterize a new argument for PVS non-personhood suggested by Neil Levy and Julian Savulescu, one intended to accommodate the diagnostic uncertainty. According to this argument, even if diagnosed PVS patients are in fact MCS, it makes no difference because MCS patients are probably not persons either. Fifth, we challenge the new argument by assembling reasons for doubting the claim that MCS patients are not persons. The outcome is that it is fairly uncertain whether diagnosed PVS and MCS patients are persons or not. What should we do in light of this uncertainty? Sixth, we develop and support a guiding precautionary principle, which we call Precautionary Personhood. Finally, we apply the principle to the case of diagnosed PVS and MCS patients: we argue that given substantial uncertainty about their personhood we should go ahead and treat these patients as if they are persons. (shrink)

In the case of Re M, summarised in the paper by Julian Sheather, Justice Baker faced the difficult task of weighing up objectively whether or not it was in Mâs best interests to withdraw artificial feeding and to let her die.1 The judge concluded that M was ârecognisably aliveâ, and that the advantages of continued life outweighed the disadvantages. He compared her minimally conscious state favourably to that of a persistent vegetative state .2 It was clear (...) that artificial feeding would have been withdrawn if she had been in a PVS , but because she was in fact minimally conscious, the judge decided that treatment must continue. But does it make sense to treat MCS differently from PVS in this way? Is it better to be minimally conscious than unconscious? Similar questions have been raised before.3 In 2006, scientists reported results of sophisticated neuroimaging studies which suggested that some patients in persistent vegetative state , long thought to be unaware, had evidence of minimal consciousness.4 The question then was on the moral significance of this level of consciousness, and whether the presence of such evidence meant that treatment such as artificial nutrition must be continued.5 ,6There are several potential reasons why the presence of minimal consciousness might warrant continuing life-sustaining treatment. The first is that patients in minimally conscious state might have a better prognosis than those who are in PVS. There are relatively few studies …. (shrink)

Although several studies propose that the integrity of neuronal assemblies may underlie a phenomenon referred to as awareness, none of the known studies have explicitly investigated dynamics and functional interactions among neuronal assemblies as a function of consciousness expression. In order to address this question EEG operational architectonics analysis (Fingelkurts and Fingelkurts, 2001, 2008) was conducted in patients in minimally conscious (MCS) and vegetative states (VS) to study the dynamics of neuronal assemblies and operational synchrony among them as (...) a function of consciousness expression. We found that in minimally conscious patients and especially in vegetative patients neuronal assemblies got smaller, their life-span shortened and they became highly unstable. Furthermore, we demonstrated that the extent/volume and strength of operational synchrony among neuronal assemblies was smallest or even absent in VS patients, intermediate in MCS patients and highest in healthy fully-conscious subjects. All findings were similarly observed in EEG alpha as well as beta1 and beta2 frequency oscillations. The presented results support the basic tenets of Operational Architectonics theory of brain-mind functioning and suggest that EEG operational architectonics analysis may provide an objective and accurate means of assessing signs of (un)consciousness in patients with severe brain injuries. Therefore this methodological approach may complement the existing “gold standard” of behavioral assessment of this population of challenging patients and inform the diagnostic and treatment decision-making processes. (shrink)

The intriguing issue of pain and suffering in patients with disorders of consciousness (DOCs), particularly in Unresponsive Wakefulness Syndrome/Vegetative State (UWS/VS) and Minimally Conscious State (MCS), is assessed from a theoretical point of view, through an overview of recent neuroscientific literature, in order to sketch an ethical analysis. In conclusion, from a legal and ethical point of view, formal guidelines and a situationist ethics are proposed in order to best manage the critical scientific uncertainty about pain (...) and suffering in DOCs and ensure the best possible care for the patient. (shrink)

Notwithstanding fundamental methodological advancements, scientific information about disorders of consciousness (DOCs)—e.g. Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS) and Minimally Conscious State (MCS)—is incomplete. The possibility to discriminate between different levels of consciousness in DOC states entails treatment strategies and ethical concerns. Here we attempted to investigate Italian clinicians’ and basic scientists’ opinions regarding some issues emerging from the care and the research on patients with DOCs. From our survey emerged that Italian physicians working with patients with DOCs (...) give a central role to ethics. Current Italian regulation regarding basic research conducted in patients with DOCs apparently risks to be inadequate to support scientific advancement, and would deserve a different assessment compared to ordinary treatments. We think the results of our survey deserve attention from an international audience because they exemplify the difficulty to define a shared approach to the issues related to patients with DOCs and the necessity to better assess both the ordinary and experimental treatment of patients with DOCs at the ethical and legal level. (shrink)

Electroencephalogram (EEG) recordings are increasingly used to evaluate patients with disorders of consciousness (DOC) or assess their prognosis outcome in the short-term perspective. However, there is a lack of information concerning the effectiveness of EEG in classifying long-term (many years) outcome in chronic DOC patients. Here we tested whether EEG operational architectonics parameters (geared towards consciousness phenomenon detection rather than neurophysiological processes) could be useful for distinguishing a very long-term (6 years) clinical outcome of DOC patients whose EEGs were registered (...) within 3 months post-injury. The obtained results suggest that EEG recorded at third month after sustaining brain damage, may contain useful information on the long-term outcome of patients in vegetative state: it could discriminate patients who remain in a persistent vegetative state from patients who reach a minimally conscious state or even recover a full consciousness in a long-term perspective (6 years) post-injury. These findings, if confirmed in further studies, may be pivotal for long-term planning of clinical care, rehabilitative programs, medical-legal decisions concerning the patients, and policy makers. (shrink)

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/UWS) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal (...) of artificial nutrition and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/UWS more respondents agreed with treatment withdrawal when they considered that VS/UWS patients did not feel pain (77%) as compared to those who thought VS/UWS did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (shrink)

Dr. Vukov analyzing patients with disorders of consciousness, proposed that medical well-regarded policy recommendations cannot be justified by looking solely to patients’ actual levels of consciousness (minimally conscious state – MCS versus vegetative state – VS), but that they can be justified by looking to patients’ potential for consciousness. One objective way to estimate this potential (actual physical possibility) is to consider a neurophysiologically informed strategy. Ideally such strategy would utilize objective brain activity markers of consciousness/unconsciousness. (...) The Operational Architectonics (OA) theory of brain-mind functioning is an example of such a strategy. Besides being mathematically simple, neurophysiologically accurate, and compatible with the cognitive/phenomenal perspectives on consciousness, application of OA strategy to quantitative EEG analysis of patients in VS and MCS revealed that the absence of consciousness in VS is paralleled by impairment of overall EEG operational architecture. Specifically, neuronal assemblies become smaller, their life span shortened, and they became highly unstable and functionally disconnected (desynchronized). At the same time, fluctuating (minimal) awareness in patients in MCS was paralleled by partial restoration of EEG operational architecture (increased size, life span, and stability of neuronal assemblies, together with an increased number and strength of functional connections among them), approaching the level found in healthy fully conscious participants. Moreover OA strategy to EEG analysis allowed predicting the emergence of consciousness in VS patients after six years following the brain trauma. Therefore, the OA methodology could reliably predict which patients may regain consciousness, and thus determine which patients may have the potential for consciousness. (shrink)

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/uws) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal (...) of artificial nutrition and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/uws more respondents agreed with treatment withdrawal when they considered that VS/uws patients did not feel pain (77%) as compared to those who thought VS/uws did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (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)

Adequate assessment of (un)consciousness is not only of theoretical interest but also has a practical and ethical importance, especially when it comes to disorders of consciousness (DOC). Accurately determining the presence or absence of consciousness in patients with DOC allows informed decisions to be made about long-term care support, referral for rehabilitation, pain management and withdrawal of life support. We believe that a theoretical account of what conscious experience is and how it emerges within the brain will advance the (...) search for appropriate neuromarkers of the presence or absence of consciousness in non-communicative brain-damaged patients. (shrink)

Until comparatively recently, say the middle of the last century, spinal cord injury was fatal as pressure sores and other infections took their toll. Those with severe brain injuries, unable to move or even communicate, fared even worse; without movement or feeding such patients were nursed until nature took its course. Over the last few decades medical and nursing advances have enabled some of these vegetative patients to survive for considerable time, provoking, at times, ethical and legal dilemmas. Though they (...) survived, without overt behaviour or clear communication their carers were frequently unsure how much residual function remained. Now real progress is occurring in this area thanks to the application of neuro-scientific methods by some outstanding groups of workers. Subjects with severe brain injury may begin in complete, unresponsive coma but then ‘lighten’ to one of three categories. In vegetative state (VS), patients are apparently awake but without evidence of voluntary behaviour and have no apparent awareness of self or environment, whilst in minimally conscious state (MCS) patients have some behaviour beyond the reflex but are not able to communicate effectively. These conditions usually result from widespread brain damage at either or both cortical and subcortical levels due to injury or anoxia, though they can also be seen in end stage neurological conditions like Alzheimer’s. In locked in syndrome (LIS), patients ‘awake’ from coma, usually due to stroke, aware of their surroundings and their situation but unable to speak or move, beyond eye lid control and eye movement. For many, LIS will be recognised from Bauby’s extraordinary account in ‘The Diving Bell and the Butterfly,’ though, incidentally, it was presaged in Samuel Beckett’s novella ‘The Unnameable.’ LIS reflects a profound disconnection between brain and body, except for the upper cranial nerves involved in eyelid movement. The overriding question is how much awareness these patients have.. (shrink)

In English law there is a strong presumption that life should be maintained. This article contends that this presumption means that it is always unlawful to withdraw life-sustaining treatment from patients in permanent vegetative state and minimally conscious state, and that the reasons for this being the correct legal analysis mean also that such withdrawal will always be ethically unacceptable. There are two reasons for this conclusion. First, the medical uncertainties inherent in the definition and diagnosis (...) of PVS/MCS are such that, as a matter of medical fact, it can never be established, with the degree of certainty necessary to rebut the presumption, that it is not in the patient’s best interest to remain alive. And second, that even if permanent unconsciousness can be unequivocally demonstrated, the presumption is not rebutted. This is because there is plainly more to human existence than consciousness. It can never be said that the identity of the patient whose best interests are at stake evaporates when that person ceases to be conscious. Nor can it be said that the best interests of an unconscious person do not mandate continued biological existence. We simply cannot know. That uncertainty is legally conclusive, and should be ethically conclusive. (shrink)

In this article we will be arguing in favour of legislating to protect doctors who bring about the deaths of PVS patients, regardless of whether the death is through passive means or active means. We will first discuss the ethical dilemmas doctors and lawmakers faced in the more famous PVS cases arising in the US and UK, before exploring what the law should be regarding such patients, particularly in Australia. We will continue by arguing in favour of allowing euthanasia in (...) the interests of PVS patients, their families, and finally the wider community, before concluding with some suggestions for how these ethical arguments could be transformed into a set of guidelines for medical practice in this area. (shrink)

I consider the current best interests of patients who were once thought to be either completely unaware (to be in PVS) or only minimally aware (MCS), but who, because of advanced fMRI studies, we now suspect have much more “going on” inside their minds, despite no ability to communicate with the world. My goal in this chapter is twofold: (1) to set out and defend a framework that I think should always guide thinking about the best interests of highly (...) cognitively compromised patients, and then (2) to defend a particular conclusion that applies to this specific patient population. The framework requires us to ask two questions: Is the individual suffering? Is the individual gaining any benefit from life? There must be benefit of some sort for life to be worth preserving, and the benefit must outweigh any suffering (if there is suffering present). I then argue it would be best overall to allow these patients to die. Either these patients are not really very aware at all, in which case they are most likely not suffering, but not benefiting from life either, or they are mentally intact enough to make benefit a theoretical possibility, but in fact they are not benefiting because they cannot communicate with anyone. Such patients would most likely suffer. As there is no way currently to address their suffering, we should allow them to die. No matter the truth about their cognitive lives, death would either be a neutral event, or a blessing. (shrink)

In “ReImagining the Quality of Life,” Lorraine Besser challenges the frameworks typically used for evaluating the quality of people’s lives, especially those with Alzheimer’s disease or those in minimally conscious states (MCS). These frameworks rely on two standards: agency and sentience. The first assumes that the absence of agency makes a life prudentially worthless (worthless to the individual whose life it is), because cognitive activity is prudentially valuable “only when it reflects agency;” whereas the second assumes that the (...) absence of pleasure makes a life prudentially worthless, because pleasure is the only experiential value. Besser argues, however, that cognitive engagement with an activity or experience that a patient finds interesting is also prudentially valuable, even if it doesn’t reflect agency, and even if it isn’t pleasurable. The interesting “describes a qualitative aspect of our experience of a robust form of cognitive engagement, which resonates with us in a fashion similar to pleasure.” Besser’s view is an important contribution to the literature on the quality of life, and to the lives of patients with Alzheimer’s or MCS. However, I challenge Besser’s view that interesting experiences need not have a positive resonance to such patients, even though they are similar to pleasure. (shrink)

Dramatic modern advances in emergency and resuscitation medicine, starting perhaps with the development of effective mechanical ventilators in the mid-20th century, have created a large class of persons who in earlier times would almost certainly have died, but who can now go on existing, suspended at least temporarily in a state somewhere between death and the conscious life they formerly pursued. A very wide range of brain injuries lead first to coma, in which the patient shows no sign (...) of conscious awareness, or even of wakefulness, in which eye openings and closings indicate the presence of a sleep/wake cycle unconsciously mediated by structures in the brain stem. Following emergence from coma, which may take days to months or more if it happens at all, patients typically show signs of wakefulness without conscious awareness – they are then in a so-called vegetative state (VS). For many this state becomes permanent, but some go on to a more recently described condition called the minimally conscious state (MCS), in which signs of conscious awareness can be detected by careful neurological examination (see Laureys & Tononi, 2009, chapter 14). A very few such persons ultimately progress to more or less full recovery, but another and particularly horrifying possible outcome is the “locked-in” state, in which a patient is fully conscious but has extremely little or no capacity for voluntary motor action. A famous modern example is that of Jean-Dominique Bauby, author of The Diving Bell and the Butterfly, who suffered a stroke to his upper brainstem and awakened 20 days later to find himself fully conscious but capable only of blinking his left eye. A tiny fraction of surgical patients find themselves in similarly terrifying conditions caused by the combination of muscle relaxants with insufficient levels of anesthetic agents (Kelly et al., 2007, p. 387 n. 18). (shrink)

Persons who experience severe brain injury often suffer significant disorders of consciousness. Anoxic injuries from cardiac arrest or strokes and traumatic injuries from falls, vehicular crashes, or assaults can result in several conditions in which patients lose or have diminished consciousness for an extended period of time. Two such conditions that create considerable public confusion and controversy are the vegetative state and the minimally conscious state. Although these conditions have generated significant medical and academic research, the (...) general public and policymakers are often confused about the nature of VS and MCS. The most recent evidence for this confusion is the acrimonious public debate, the extensive media coverage, the prolonged litigation, and the attempts of various governmental officials to intervene in dealing with the plight of Terri Schiavo. (shrink)