Husserl characterizes sleep with the idea of “the relaxation of the will.” One finds a similar approach in the work of Maine de Biran, who explains sleep as “the suspension of the will.” More recently, Brian O’Shaughnessy and Matthew Soteriou have argued that mental actions constitute wakeful consciousness. In clinical practice, patients with disorders of consciousness who show “purposeful” behavior are classified as “minimally conscious,” while those in an “unresponsive wakeful state” merely behave reflexively. To what extent and how are (...) these proposals justified? This question pushes both the first- and the third-personal approaches to their limits: in an unconscious state, like a coma, one cannot reflect upon oneself; likewise, one cannot infer from physiological data whether someone is phenomenally conscious. This work offers a critical review of these proposals regarding the constitutive role for agency in phenomenal consciousness. It then presents revised versions of O’Shaughnessy’s and Soteriou’s Arguments from Synthesis and from Self-Consciousness. The argument is that everything of which one is phenomenally conscious is either a potential reason for a possible agentive power exertion, or just that power exertion itself. The “self” referred to in “self”-consciousness is either the agent or a “non-agent,” carrying out functions for the agent. Agency is therefore constitutive of phenomenal consciousness. The resulting view helps to solve the Combination Problem for panpsychism, by suggesting that agency is what raises sub-personal micro-consciousness to the personal level. The view may also justify the notion of a “Minimally Conscious State” in clinical practice. (shrink)

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)

ObjectiveWhen regaining consciousness, patients who emerge from a minimally conscious state (EMCS) present with different levels of functional disability, which pose great challenges for treatment. This study investigated the frontoparietal activity in EMCS patients and its effects on functional disability.Materials and methodsIn this preliminary study, 12 EMCS patients and 12 healthy controls were recruited. We recorded a resting-state scalp electroencephalogram (EEG) for at least 5 min for each participant. Each patient was assessed using the disability rating scale (DRS) to determine (...) the level of functional disability. We analyzed the EEG power spectral density and sensor-level functional connectivity in relation to the patient’s functional disability.ResultsIn the frontoparietal region, EMCS patients demonstrated lower relative beta power (P < 0.01) and higher weighted phase lag index (wPLI) values in the theta (P < 0.01) and gamma (P < 0.01) bands than healthy controls. The frontoparietal theta wPLI values of EMCS patients were positively correlated with the DRS scores (rs = 0.629, P = 0.029). At the whole-brain level, EMCS patients only had higher wPLI values in the theta band (P < 0.01) than healthy controls. The whole-brain theta wPLI values of EMCS patients were also positively correlated with the DRS scores (rs = 0.650, P = 0.022). No significant difference in the power and connectivity between the frontoparietal region and the whole brain in EMCS patients was observed.ConclusionEMCS patients still experience neural dysfunction, especially in the frontoparietal region. However, the theta connectivity in the frontoparietal region did not increase specifically. At the level of the whole brain, the same shift could also be seen. Theta functional connectivity in the whole brain may underlie different levels of functional disability. (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)

Recent studies using functional magnetic resonance imaging of patients in a vegetative state have raised the possibility that such patients retain some degree of consciousness. In this paper, the ethical implications of such findings are outlined, in particular in relation to decisions about withdrawing life-sustaining treatment. It is sometimes assumed that if there is evidence of consciousness, treatment should not be withdrawn. But, paradoxically, the discovery of consciousness in very severely brain-damaged patients may provide more reason to let them die. (...) Although functional neuroimaging is likely to play an increasing role in the assessment of patients in a vegetative state, caution is needed in the interpretation of neuroimaging findings. (shrink)

I propose that primary conscious awareness arises from synchronized activity in dendrites of neurons in dorsal thalamic nuclei, mediated particularly by inhibitory interactions with thalamic reticular neurons. In support, I offer four evidential pillars: consciousness is restricted to the results of cortical computations; thalamus is the common locus of action of brain injury in vegetative state and of general anesthetics; the anatomy and physiology of the thalamus imply a central role in consciousness; neural synchronization is a neural correlate of consciousness.

The False Claims Act, 31 U.S.C. § 3729, a post-Civil War law inspired by cases of defense contracting fraud, was revitalized in 1986. Since then it has been used to sue both manufacturers and providers of pharmaceuticals. In some cases, these suits were meant to target offlabel marketing of pharmaceuticals. In 2009, the 11th Circuit rendered a decision in Hopper v. Solvay Pharmaceuticals that dramatically limits the ability of private plaintiff whistle-blowers to bring qui tam suits under the FCA for (...) such marketing. In June 2010, the Supreme Court denied certiorari, making the Circuit court decision final. The Solvay decision creates a significant barrier to certain kinds of qui tam suits, requiring the plaintiff to demonstrate the intent to market off-label, including by showing specific prescriptions that were written as a result of efforts to do so. (shrink)

Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 and using (...) time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

In 1993, the UK High Court decided that Tony Bland was unaware of himself and his environment, had no interest in medical treatment and allowed withdrawal of treatment. Subsequently, the court has reviewed all cases of stopping feeding and hydration in people with a prolonged disorder of consciousness. Their focus has been on determining whether the person is in the permanent vegetative state, because this avoids considering what is in a person9s Best Interests. Consequently, much resource is spent distinguishing the (...) vegetative state from the minimally conscious state and often clinical decisions are delayed or not made because of the requirement to go to court. In this paper, I argue that the neurophysiological basis of consciousness is unknown, and one cannot test whether the necessary structures are functioning. Unconscious people have responsiveness which varies; they may even have brief behaviours suggestive of awareness. No single clinical sign or investigation nor assessment battery can prove the presence (or absence) of consciousness or its permanence. The diagnosis of consciousness is clinical. Furthermore, awareness varies across a spectrum. There is no separate vegetative state. People simply have very limited or absent awareness. Even if there were such a state, it cannot be identified. The ethical and legal issues associated with decisions on treatment of unconscious people are no different from similar decisions in other patients. All decisions should be taken within the Best Interests framework and process. There should be no requirement to take any particular decision to court in this patient group. (shrink)

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (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.

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)

Determining whether or not noncommunicative patients are phenomenally conscious is a major clinical and ethical challenge. Clinical assessment is usually limited to the observation of these patients' motor responses. Recent neuroimaging technology and brain computer interfaces help clinicians to assess whether patients are conscious or not, and to avoid diagnostic errors.

A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state, demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life. We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a (...) clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery. (shrink)

I argue that a version of Pascal's Wager applies to the persistent vegetative state with sufficient force that it ought to part of advance directives.

Sale of Sperm, Health Records, Minimally Conscious States, and Duties of Candour Content Type Journal Article Category Recent Developments Pages 7-14 DOI 10.1007/s11673-011-9347-6 Authors Cameron Stewart, Centre for Health Governance, Law and Ethics, Sydney Law School, University of Sydney, Sydney, NSW, Australia 2006 Bernadette Richards, Law School, University of Adelaide, Adelaide, SA, Australia 5005 Richard Huxtable, Centre for Ethics in Medicine, University of Bristol, Bristol, BS8 1TH UK Bill Madden, School of Law, University of Western Sydney, Sydney, NSW, Australia Tina (...) Cockburn, School of Law, Queensland University of Technology, Brisbane, QLD, Australia Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529 Journal Volume Volume 9 Journal Issue Volume 9, Number 1. (shrink)

The clinical and para-clinical examination of residual self-consciousness in non-communicative severely brain damaged patients remains exceptionally challenging. Passive presentation of the patient’s own name and own face are known to be effective attention-grabbing stimuli when clinically assessing consciousness at the patient’s bedside. Event-related potential and functional neuroimaging studies using such self-referential stimuli are currently being used to disentangle the cognitive hierarchy of self-processing. We here review neuropsychological, neuropathological, electrophysiological and neuroimaging studies using the own name and own face paradigm obtained (...) in conscious waking, sleep, pharmacological coma, pathological coma and related disorders of consciousness. Based on these results we discuss what we currently do and do not know about the functional significance of the neural network involved in “automatic” and “conscious” self-referential processing. (shrink)

Consciousness in experimental subjects is typically inferred from reports and other forms of voluntary behaviour. A wealth of everyday experience confirms that healthy subjects do not ordinarily behave in these ways unless they are conscious. Investigation of consciousness in vegetative state patients has been based on the search for neural evidence that such broad functional capacities are preserved in some vegetative state patients. We call this the standard approach. To date, the results of the standard approach have suggested that some (...) vegetative state patients might indeed be conscious, although they fall short of being demonstrative. The fact that some vegetative state patients show evidence of consciousness according to the standard approach is remarkable, for the standard approach to consciousness is rather conservative, and leaves open the pressing question of how to ascertain whether patients who fail such tests are conscious or not. We argue for a cluster-based ‘natural kind’ methodology that is adequate to that task, both as a replacement for the approach that currently informs research into the presence or absence of consciousness in vegetative state patients and as a methodology for the science of consciousness more generally. 1. Introduction2. The Vegetative State3. The Standard Approach4. The Natural Kind Methodology5. Is Consciousness a Special Case? 5.1 Is consciousness a natural kind?5.2 A special obstacle?6. Conclusion. (shrink)

From the start, I followed the case of Jahi McMath with great interest. In December 2013, she clearly fulfilled the diagnostic criteria for brain death. As a neurologist with a special interest in chronic brain death, I was not surprised that, after she was flown to New Jersey, where she became statutorily resurrected and was treated as a comatose patient, Jahi's condition quickly improved. In 2014, her family reported that she sometimes responded to simple motor commands. I shared the general (...) skepticism regarding these reports, assuming that the family was in denial and was misinterpreting spinal myoclonus (a rapid, involuntary twitch generated by the spinal cord) as volitional. The family had noticed that when Jahi's heart rate was above eighty beats per minute, she was more likely to respond, as though the heart rate reflected some sort of inner level of arousal. So they began to make video recordings. I have been privileged to be entrusted with copies of these recordings, forty‐eight of which proved suitable for assessing alleged responsiveness. All have been certified by a forensic video expert as unaltered. The first thing that struck me was that the great majority of the alleged responses were not spinal myoclonus. In fact, they did not resemble any type of spontaneous, involuntary movement described in patients paralyzed from high spinal cord lesions. (shrink)

A recent legal case involving an ambiguous diagnosis in a woman with a severe disorder of consciousness raises pressing questions about treatment withdrawal in a time when much of what experts know about disorders of consciousness is undergoing revision and refinement. How much should diagnostic certainty about consciousness matter? For the judge who refused to allow withdrawal of artificial nutrition and hydration, it was dispositive. Rather than relying on substituted judgment or best interests to determine treatment decisions, he ruled that (...) withdrawal was categorically prohibited, even as he concluded that Hannah Capes was more likely than not in a permanent vegetative state. In many jurisdictions, his decision would likely be consistent with existing law. Evolving technological advances have demonstrated that biologically distinct diagnoses incorporated into state laws may be difficult to establish even under ideal conditions. We offer the Capes case for purposes of examining the consequences of enshrined legal distinctions between permanent vegetative state and other severe disorders of consciousness. Insistence on proof of the permanent absence of consciousness before treatment withdrawal is allowed fails to respect the rights of persons with disorders of consciousness. Even the well-established rights to treatment withdrawal for those in a permanent vegetative state may be in jeopardy if reform is not undertaken. (shrink)

BackgroundWith the emergence of Brain Computer Interfaces, clinicians have been facing a new group of patients with severe acquired brain injury who are unable to show any behavioral sign of consciousness but respond to active neuroimaging or electrophysiological paradigms. However, even though well documented, there is still no consensus regarding the nomenclature for this clinical entity.ObjectivesThis systematic review aims to 1) identify the terms used to indicate the presence of this entity through the years, and 2) promote an informed discussion (...) regarding the rationale for these names and the best candidates to name this fascinating disorder.MethodsThe Disorders of Consciousness Special Interest Group of the International Brain Injury Association launched a search on Pubmed and Google scholar following PRISMA guidelines to collect peer-reviewed articles and reviews on human adults published in English between 2006 and 2021.ResultsThe search launched in January 2021 identified 4,089 potentially relevant titles. After screening, 1,126 abstracts were found relevant. Finally, 161 manuscripts were included in our analyses. Only 58% of the manuscripts used a specific name to discuss this clinical entity, among which 32% used several names interchangeably throughout the text. We found 25 different names given to this entity. The five following names were the ones the most frequently used: covert awareness, cognitive motor dissociation, functional locked-in, non-behavioral MCS and higher-order cortex motor dissociation.ConclusionSince 2006, there has been no agreement regarding the taxonomy to use for unresponsive patients who are able to respond to active neuroimaging or electrophysiological paradigms. Developing a standard taxonomy is an important goal for future research studies and clinical translation. We recommend a Delphi study in order to build such a consensus. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG examination at (...) a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 18 Heft: 1 Seiten: 261-278.

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)

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)

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 “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)

ObjectiveTo investigate the short-term effect of music therapy combined with binaural frequency difference therapy on patients with consciousness disorder.Materials and methodsNinety patients with definite diagnosis of disorders of consciousness were selected. These patients were randomly divided into control group, experiment 1 group and experiment 2 group, with 30 patients in each group. The control group was treated with routine clinical treatment and rehabilitation. In experiment 1 group, music therapy was added to the control group. In experimental group 2, music therapy (...) combined with binaural α frequency difference therapy was added to the control group. All patients were assessed before and after 30 treatments. The assessment items included Glasgow Coma Scale, Coma Recovery Scale revised, electroencephalogram, upper somatosensory evoked potential, and brainstem auditory evoked potential.ResultsBefore treatment, there were no significant differences in GCS score, CRS-R score, USEP, BAEP, and EEG scores among the three groups. After 30 times of treatment, GCS score, CRS-R score, USEP, BAEP, and EEG scores in 3 groups were significantly higher than those before treatment. And the consciousness rate of experimental group 2 was better than experimental group 1, experimental group 1 was better than the control group and the difference was statistically significant.ConclusionMusic therapy combined with binaural α frequency difference therapy is more effective in stimulating DOC patients. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)

The history of brain-computer interfaces developed from a mere idea in the days of early digital technology to today’s highly sophisticated approaches for signal detection, recording, and analysis. In the 1960s, electroencephalography was tied to the laboratory due to equipment and recording requirements. Today, amplifiers exist that are built in the electrode cap and are so resistant to movement artefacts that data collection in the field is no longer a critical issue. Within 60 years, the field has moved from simple (...) and artefact-sensitive EEG recording to making real the vision of brain-computer communication. In the last 40 years, direct brain-computer interaction went from simple communication programs to sophisticated BCI-controlled applications. In the past two decades, much research was conducted with locked-in individuals, and since the 2010s, independent home use by exemplary patients has been demonstrated. In these patients with locked-in syndrome, BCI were installed at their home and long-term usage was established, resulting in increased quality of life. Maintaining communication in disorders leading to LIS contributes significantly to the patients’ sense of being full persons. BCI as an assistive technology will likely be perceived as integral part of the self: insofar as it can prevent total loss of communication and the ensuing social isolation, it enables essential conditions for the subjective and intersubjective experience of personhood. (shrink)

A pressing issue in neuroscience is the high rate of misdiagnosis of disorders of consciousness. As new research on patients with disorders of consciousness has revealed surprising and previously unknown cognitive capacities, the need to develop better and more reliable methods of diagnosing these disorders becomes more urgent. So too the need to expand our ethical and social frameworks for thinking about these patients, to accommodate new concerns that will accompany new revelations. A recent study on trace conditioning and learning (...) in vegetative and minimally conscious patients shows promise as a potential diagnostic and prognostic tool, both for differentiating between states of diminished consciousness, and for predicting patient outcomes, but it also generates fresh concerns about quality of life in patients previously thought to be completely unaware. Optimism about progress in diagnosing and treating disorders of consciousness must be tempered by the understanding that not all progress will necessarily be good for all patients. The prognosis for most patients remains bleak, and we must remain vigilant to acute questions and concerns about welfare and quality of life. (shrink)

The recent ruling from England on the case of M is one of very few worldwide to consider whether life-sustaining treatment, in the form of clinically assisted nutrition and hydration, should continue to be provided to a patient in a minimally conscious state. Formally concerned with the English law pertaining to precedent autonomy (specifically advance decision-making) and the best interests of the incapacitated patient, the judgment issued in M's case implicitly engages with three different accounts of the value of human (...) life, which respectively emphasise its self-determined, intrinsic and instrumental value. The judge appeared to be most persuaded by the intrinsic value of life and he concluded that treatment ought to continue. Assessing whether his approach or conclusion were ethically appropriate involves significant substantive and evidential questions regarding where the burden of proof should lie and what standard of proof should be required when decisions are to be made about the fates of patients inhabiting ‘twilight worlds’. (shrink)

Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the patients’ ontological status. Are the permanently vegetative alive, dead, or in some other state? We present empirical data from interviews with relatives of patients, and with experts, to support the (...) view that the ontological state of permanently vegetative patients is unclear: such patients are neither straightforwardly alive nor simply dead. Having defended this view from counter-arguments we turn to the practical question as to how these patients ought to be treated. Some relatives and experts believe it is right for patients to be shifted from their currently unclear ontological state to that of being straightforwardly dead, but many are concerned or even horrified by the only legally sanctioned method guaranteed to achieve this, namely withdrawal of clinically assisted nutrition and hydration. A way of addressing this distress would be to allow active euthanasia for these patients. This is highly controversial; but we argue that standard objections to allowing active euthanasia for this particular class of permanently vegetative patients are weakened by these patients’ distinctive ontological status. (shrink)