Detecting conscious awareness in a patient emerging from a coma state is problematic, because our standard attributions of conscious awareness rely on interpreting bodily movement as intentional action. Where there is an absence of intentional bodily action, as in the vegetative state, can we reliably assume that there is an absence of conscious awareness? Recent neuroimaging work suggests that we can attribute conscious awareness to some patients in a vegetative state by interpreting their brain activity as intentional mental (...) action. I suggest that this change of focus, from the interpretation of motor behaviour as intentional bodily action to the interpretation of neural activity as intentional mental action, raises philosophical issues that affect the interpretation of the neuroimaging data. (shrink)

Aim: To elicit preferences for prognostic information, attitudes towards withdrawal of life-sustaining treatment (WLST) and perspectives on acceptable quality of life after post-anoxic coma within the adult general population of Germany, Italy, the Netherlands and the United States of America. Methods: A web-based survey, consisting of questions on respondent characteristics, perspectives on quality of life, communication of prognostic information, and withdrawal of life-sustaining treatment, was taken by adult respondents recruited from four countries. Statistical analysis included descriptive analysis and chi2-tests (...) for dierences between countries. Results: In total, 2012 respondents completed the survey. In each country, at least 84% indicated they would prefer to receive early prognostic information. If a poor outcome was predicted with some uncertainty, 37-54% of the respondents indicated that WLST was not to be allowed. A conscious state with severe physical and cognitive impairments was perceived as acceptable quality of life by 17–44% of the respondents. Clear differences between countries exist, including respondents from the U.S. being more likely to allow WLST than respondents from Germany (OR = 1.99, p < 0.001) or the Netherlands (OR = 1.74, p < 0.001) and preferring to stay alive in a conscious state with severe physical and cognitive impairments more than respondents from Italy (OR = 3.76, p < 0.001), Germany (OR = 2.21, p < 0.001), or the Netherlands (OR = 2.39, p < 0.001). Conclusions: Over one-third of the respondents considered WLST unacceptable when there is any remaining prognostic uncertainty. Respondents had a more positive perspective on acceptable quality of life after coma than what is currently considered acceptable in medical literature. This indicates a need for a closer look at the practice of WLST based on prognostic information, to ensure responsible use of novel prognostic tests. (shrink)

In this report, we describe the case of a patient who has remained in a comatose state for more than one year after a traumatic and hypoxic brain injury. This state, which we refer to as long-lasting coma (LLC), may be a disorder of consciousness with significantly different features from those of conventional coma, the vegetative state, or brain death. On the basis of clinical, neurophysiological and neuroimaging data, we hypothesize that a multilevel involvement of the ascending reticular (...) activating system is required in LLC. This description may be useful for the identification of other patients suffering from this severe disorder of consciousness, which raises important ethical issues. (shrink)

Following coma, some patients will recover wakefulness without signs of consciousness (only showing reflex movements, i.e., the vegetative state) or may show non-reflex movements but remain without functional communication (i.e., the minimally conscious state). Currently, there remains a high rate of misdiagnosis of the vegetative state (Schnakers et. al. BMC Neurol, 9:35, 8) and the clinical and electrophysiological markers of outcome from the vegetative and minimally conscious states remain unsatisfactory. This should incite clinicians to use multimodal assessment to (...) detect objective signs of consciousness and validate para-clinical prognostic markers in these challenging patients. This review will focus on advanced magnetic resonance imaging (MRI) techniques such as magnetic resonance spectroscopy, diffusion tensor imaging, and functional MRI (fMRI studies in both “activation” and “resting state” conditions) that were recently introduced in the assessment of patients with.. (shrink)

THE PRIMARY AIM OF THIS ESSAY is to advance discussion on how best to treat comatose patients. Its principal conclusion will be Some purportedly irreversibly comatose humans ought to be kept alive indefinitely. Of course, merely keeping such patients alive is not how best to treat them. How they are being treated while being kept alive is of paramount importance. Note that is compatible with the truth of All comatose humans ought to be kept alive indefinitely. I shall (...) say nothing more about. It will serve my present purpose if I can adequately defend, where "some" is to be understood in the usual manner, namely, as "at least one." The term "indefinitely," as one might surmise, is meant to convey some unspecified period of time. (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)

The essay examines Robin Cook’s Coma and Priscille Sibley’s The Promise of Stardust that dramatize the reified and disposable status of the brain-dead patients who are classified as nonpersons. The essay argues that the man-machine entanglement as depicted in the novels constructs a deterritorialized and entangled form of subjectivity that intervenes in the dominant biomedical understanding of personhood and agency that we notionally associate with a conscious mind. The essay concludes its arguments by discussing Alexander Beliaev’s Professor Dowell’s (...) Head which depicts human subjectivity as an essentially embodied and distributive phenomenon and interrogates the Cartesian mind body dualism embedded in the dominant biomedical narratives. (shrink)

Cet article propose un regard sur la place des familles au chevet des patients comateux et leur rôle potentiel dans le processus d’éveil, notamment en ce qui concerne le travail de mémoire et le partage d’affect, principalement la honte. Il s’appuie sur l’expérience de travail de plusieurs années d’un psychologue en service de réanimation adulte. La réanimation est un lieu dans lequel la place de chaque objet est pensée en fonction de son utilité pour le soin du patient, mais (...) peu dans la perspective du lien à l’entourage. Certains objets comme la famille sont porteurs de complexité à résonances affectives. L’article montre que cette complexité, si elle est accompagnée par le psychologue et l’équipe soignante, peut jouer un rôle favorable dans le processus d’éveil et dans le travail de réappropriation de son vécu par le patient. (shrink)

Under which conditions may physicians who are requested to treat permanently unconscious patients refuse to do so? Wasserman et al. (2023) maintain that refusals on the basis of supposed futility are unethical as they amount to passing off personal value judgments as medical expertise. Instead, unwillingness to carry out an intervention should be framed as conscientious objection. I argue that referring to futility with regard to a patient’s presumed quality of life is appropriate if – and only if – (...) a total and irreversible loss of consciousness has been diagnosed with adequate certainty. The diagnosis turns a graded notion into a binary affair: conscious awareness is a necessary condition of any degree of quality of life to be meaningfully ascribed to an organism. Consequently, the complete absence of consciousness precludes such an ascription; further treatment is then indeed futile from a quality-of-life standpoint. (shrink)

Le 31 mars 2005 décédait à l’âge de 41 ans Theresa Marie Schiavo. Elle était dans le coma depuis le 25 février 1990. La demande de son mari de cesser l’alimentation et l’hydratation artificielles provoqua un débat public sans précédent et une longue saga judiciaire au terme de laquelle la Cour acquiesça à sa demande. La doctrine catholique à propos des questions de fin de vie fit l’objet d’une discussion virulente. C’est dans ce contexte que cet article analyse la (...) discussion théologique américaine et les interventions romaines récentes à propos de l’alimentation et l’hydratation artificielles des patients en état végétatif permanent. (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)

Objectives: Recent fMRI studies have shown that it is possible to reliably identify the defaultmode network (DMN) in the absence of any task, by resting-state connectivity analyses in healthy volunteers. We here aimed to identify the DMN in the challenging patient population of disorders of consciousness encountered following coma. Experimental design: A spatial independent component analysis-based methodology permitted DMN assessment, decomposing connectivity in all its different sources either neuronal or artifactual. Three different selection criteria were introduced assessing anticorrelation-corrected connectivity (...) with or without an automatic masking procedure and calculating connectivity scores encompassing both spatial and temporal properties. These three methods were validated on 10 healthy controls and applied to an independent group of 8 healthy controls and 11 severely brain-damaged patients [locked-in syndrome (n ¼ 2), minimally conscious (n ¼ 1), and vegetative state (n ¼ 8)]. Principal observations: All vegetative patients showed fewer connections in the default-mode areas, when compared with controls, contrary to locked-in patients who showed nearnormal connectivity. In the minimally conscious-state patient, only the two selection criteria considering both spatial and temporal properties were able to identify an intact right lateralized BOLD connectivity pattern, and metabolic PET data suggested its neuronal origin. Conclusions: When assess-. (shrink)

AimThe functional prognosis of patients after coma following either cardiac arrest or acute structural brain injury is often uncertain. These patients are associated with high mortality and disability. N20 and N70 somatosensory evoked potentials are used to predict prognosis. We evaluated the utility of SSEP as an early indicator of long-term prognosis in these patients.MethodsThis was a retrospective cohort study of patients admitted to the intensive care unit with a diagnosis of coma after CA (...) or ABI. An SSEP study was performed, including N20 and N70 at 24–72 h, after coma onset. Functional recovery was assessed 6–12 months later using the modified Glasgow scale. The study was approved by our local research ethics committee.ResultsIn the CA and ABI groups, the absence of N20 or N70 was a strong indicator of poor outcome. Conversely, the presence of N70 was an indicator of a good outcome.ConclusionSomatosensory evoked potentials are useful early prognostic markers with high specificity and sensitivity. Moreover, N70 has additional potential value for improving the prediction of good long-term functional outcomes.Clinical Trial Registration:[https://clinicaltrials.gov/], identifier [2018/01/001]. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from (...) an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

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

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)

A 68-year-old patient who suffered from gastric cancer diagnosed 8 months earlier presented with multiple peritoneal and hepatic metastasis, despite several rounds of chemo- and radiotherapy. After admission to hospital, his general condition quickly became severely compromised. He was nearly emaciated, despite being on partial parenteral feeding. Four years earlier, due to a cardiac arrhythmia that was refractory to medication, the patient had a cardiac pacemaker implanted, regulated to go off at frequencies of below 70 beats per minute. Given the (...) patient's terminal situation, the team started developing some doubts about the pacemaker's effects during his dying process. The patient had mentioned his intention to donate his pacemaker after his death, but had not asked for its deactivation. The specialists were not sure about the effect of the pacemaker in unnecessarily prolonging the patient's final hour. Nevertheless, they opposed deactivation, which they considered ethically uncertain. The family, who had been initially for the deactivation, decided against it. The patient's condition was progressively deteriorating, as he was falling into a state of sopor and, later, into a coma. (shrink)

Background Evidence concerning how Japanese physicians think and behave in specific clinical situations that involve withholding or withdrawal of medical interventions for end-of-life or frail elderly patients is yet insufficient. Methods To analyze decisions and actions concerning the withholding/withdrawal of life-support care by Japanese physicians, we conducted cross-sectional web-based internet survey presenting three scenarios involving an elderly comatose patient following a severe stroke. Volunteer physicians were recruited for the survey through mailing lists and medical journals. The respondents answered questions (...) concerning attitudes and behaviors regarding decision-making for the withholding/withdrawal of life-support care, namely, the initiation/withdrawal of tube feeding and respirator attachment. Results Of the 304 responses analyzed, a majority felt that tube feeding should be initiated in these scenarios. Only 18% felt that a respirator should be attached when the patient had severe pneumonia and respiratory failure. Over half the respondents felt that tube feeding should not be withdrawn when the coma extended beyond 6 months. Only 11% responded that they actually withdrew tube feeding. Half the respondents perceived tube feeding in such a patient as a "life-sustaining treatment," whereas the other half disagreed. Physicians seeking clinical ethics consultation supported the withdrawal of tube feeding (OR, 6.4; 95% CI, 2.5–16.3; P < 0.001). Conclusion Physicians tend to harbor greater negative attitudes toward the withdrawal of life-support care than its withholding. On the other hand, they favor withholding invasive life-sustaining treatments such as the attachment of a respirator over less invasive and long-term treatments such as tube feeding. Discrepancies were demonstrated between attitudes and actual behaviors. Physicians may need systematic support for appropriate decision-making for end-of-life care. (shrink)

Conducting clinical research on subjects admitted to intensive care units is challenging, as they frequently lack the capacity to provide informed consent due to multiple factors including intensive care unit acquired delirium, coma, the need for sedation, or underlying critical illness. However, the presence of one or more of these characteristics does not automatically designate a potential subject as lacking capacity to provide their own informed consent. We review the ethical issues involved in obtaining informed consent for medical research (...) from mechanically ventilated, critically ill patients, in addition to the concerns that may arise when a legally authorized representative is asked to provide informed consent on behalf of these patients. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions (...) remain poorly documented. We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (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)

Niedenthal et al. discuss the importance of eye gaze in embodied simulation and, more globally, in the processing of emotional visual stimulation (such as facial expression). In this commentary, we illustrate the relationship between oriented eye movements, consciousness, and emotion by using the case of severely brain-injured patients recovering from coma (i.e., vegetative and minimally conscious patients).

When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts (...) when it becomes part of a socio-technical network in an Intensive Care Unit. Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on the way patient outcomes are constructed, the kind of decision support these outcomes provide, and how cEEG affects communication between professionals and relatives. We argue that cEEG can take away or decrease the intensity of the dilemma in some cases, while increasing uncertainty for others. It also raises new concerns. Since its actual impacts furthermore hinge on how cEEG is designed and implemented, we end with recommendations for ensuring responsible development and implementation. (shrink)

Some patients awaken from their coma but only show reflex motor activity. This condition of wakeful (eyes open) unawareness is called the vegetative state. In 2002, a new clinical entity coined ‘‘minimally conscious state’’ defined patients who show more than reflex responsiveness but remain unable to communicate their thoughts and feelings. Emergence from the minimally conscious state is defined by functional recovery of verbal or nonverbal communication.1 Our empirical medical definitions aim to propose clearcut borders separating disorders (...) of consciousness such as coma, vegetative state and minimally conscious state but clinical reality shows that these boundaries can often be fuzzy (fig 1). Recent clinical, electrophysiological and neuroimaging studies are shedding light on these challenging limits of consciousness encountered following severe acute brain damage. At the patient’s bedside, it is very challenging to differentiate reflex or automatic motor behaviour from movements indicating signs of consciousness, and hence some minimally conscious patients might be misdiagnosed as being vegetative. For some motor responses (eg, blinking to visual threat, brief fixation, normal flexion response to pain, etc) it remains unclear whether they truly are voluntary or willed because we lack convincing scientific evidence. We also lack consensus on how to practically assess some of these behavioural responses. For example, there is no agreement on what stimulus to employ in the assessment of visual pursuit movements— often one of the first clinical signs heralding the transition from the vegetative to the minimally conscious state. Vanhaudenhuyse and colleagues2 recently studied visual pursuit in 51 post-comatose patients comparing eye tracking of a moving object, person or mirror. It was shown that more.. (shrink)

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

Coma, vegetative state, lock-in syndrome and akinetic mutism are defined. Vegetative state is a state with no evidence of awareness of self or environment and showing cycles of sleep and wakefulness. PVS is an operational definition including time as a variable. PVS is a vegetative state that has endured or continued for at least one month. PVS can be diagnosed with a reasonable amount of medical certainty; however, the diagnosis of PVS must be kept separate from the outcome. The (...) patient outcome can be predicted based on etiology and age. Using outcome probabilities and etiology as criteria, patients can be subdivided in 5 groups and reasonable management guidelines can be suggested. Three levels of care can be provided to PVS patients: high technology, supportive and compassionate care. Pragmatic options for the various subgroups of patients are suggested. Management decisions will remain difficult for both the family and the health-care team. The role of the physician in these difficult cases is to share the decision-making with the family. (shrink)

Near-death experiences (NDEs) have been defined as any conscious perceptual experience occurring in individuals pronounced clinically dead or who came very close to physical death. They are frequently reported by patients surviving a critical injury and, intriguingly, they show common features across different populations. The tool traditionally used to assess NDEs is the NDE Scale, which is available in the original English version. The aim of this study was to develop the Italian version of the NDE Scale and to (...) assess its reliability in a specific clinical setting. A process of translation of the original scale was performed in different stages in order to obtain a fully comprehensible and accurate Italian translation. Later, the scale was administered to a convenience sample of patients who had experienced a condition of coma and were, at the time of assessment, fully conscious and able to provide information as requested by the scale. Inter-rater and test–retest reliability, assessed by the weighted Cohen’s kappa ( K w ), were estimated. A convenience sample of 20 subjects [mean age ± standard deviation (SD) 51.6 ± 17.1, median time from injury 3.5 months, interquartile range (IQR) 2–10] was included in the study. Inter-rater [ K w 0.77 (95% CI 0.67–0.87)] and test–retest reliability [ K w 0.96 (95% CI 0.91–1.00)] showed good to excellent values for the total scores of the Italian NDE Scale and for subanalyses of each single cluster of the scale. An Italian Version of the NDE Scale is now available to investigate the frequency of NDE, the causes for NDE heterogeneity across different life-threatening conditions, and the possible neural mechanisms underlying NDE phenomenology. (shrink)

Gathers medical and legal documents, opinions from various perspectives, and a timeline of events in the Terri Shiavo case to provide a resource for examining the moral and ethical issues surrounding end-of-life decisions.

In 1968 the authors of the so-called Harvard Report, proposed the recognition of an irreversible coma as a new criterion for death. The proposal was accepted by the medical, legal, religious and political circles in spite of the lack of any explanation why the irreversible coma combined with the absence of brainstem reflexes, including the respiratory reflex might be equated to death. Such an explanation was formulated in the President’s Commission Report published in 1981. This document stated, that (...) the brain is the central integrator of the body, therefore the destruction of the brain results in the lack of that integration and the death of the organism. Therefore, according to that document, the so-called “brain dead” patients are really, biologically dead; strictly speaking they are not any more biological organisms but collections of organs and tissues. Their death was masked by the use of the medical equipment, but it was a real, biological death. Thus, the explanation given by the President’s Commission Report constituted a biological rationale for the new concept of death, known as “brain death.” However, after the long discussion, this rationale was refuted because of the evidence given by many medical authorities, that the bodies of the “brain dead” and “brainstem dead” patients are alive. In the context of the discussion about the neurological criteria for death, some authors follow the idea of Plato, that human being is the soul or mind, and the body does not belong to the human essence. Therefore, the loss of consciousness, which may be identified with the mind, constitutes the loss of personhood and may be interpreted as human death. The other group stresses the Aristotelian and Thomistic concept that the body belongs to the essence of every living creature, including human. Therefore, as long as the body is alive, the human being is alive and we cannot call the given patient dead even if he is deeply comatose. Moreover, in spite of the opinions dominating in the mass-media, these patients should be considered not only alive but also may be conscious to some degree and their state can be reversible. Their brains are lacking the electrical functions, but the neuronal tissue is alive and that state is reversible for at least first 48 hours since the onset of coma; this phenomenon is called “global ischemic penumbra” and is responsible for the regularly happening events interpreted as miracles, when some of the “brain dead” or “brainstem dead” patients turn to be alive and come back to normal life. Therefore, the neurological criteria of death are still lacking generally accepted scientific basis and should not be used in medicine and in the legal systems as a basis for diagnosing comatose/having no brainstem reflexes/apneic patients dead. (shrink)

The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and the (...) responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades. (shrink)

Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on (...) the basis of neural response patterns observed with functional magnetic resonance imaging. This line of research has already led to some widely reported cases of patients who were discovered to have more brain activity than expected. In November 2009, Rom Houben, a Belgian man who was thought to be in a coma for 23 years, was diagnosed with locked-in syndrome through the use of neuroimaging; however, that assessment was later overturned by further testing. (shrink)

Disorders of consciousness include coma, the vegetative state and the minimally conscious state. Such patients are often regarded as unconscious. This has consequences for end of life decisions for these patients: it is much easier to justify withdrawing life support for unconscious than conscious patients. Recent brain imaging research has however suggested that some patients may in fact be conscious.

Background The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among (...) urban residents. Methods Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. Results Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. Conclusion Diverse preferences in LST and ANH were shaped by the public’s current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals’ perspectives on LST and ANH decisions for neurological patients.. (shrink)

: Although "brain death" and the dead donor rule—i.e., patients must not be killed by organ retrieval—have been clinically and legally accepted in the U.S. as prerequisites to organ removal, there is little data about public attitudes and beliefs concerning these matters. To examine the public attitudes and beliefs about the determination of death and its relationship to organ transplantation, 1351 Ohio residents ≥18 years were randomly selected and surveyed using random digit dialing (RDD) sample frames. The RDD telephone (...) survey was conducted using computer-assisted telephone interviews. The survey instrument was developed from information provided by 12 focus groups and a pilot study of the questionnaire. Three scenarios based on hypothetical patients were presented: "brain dead," in a coma, or in a persistent vegetative state (PVS). Respondents provided personal assessments of whether the patient in each scenario was dead and their willingness to donate that patient's organs in these circumstances. More than 98 percent of respondents had heard of the term "brain death," but only one-third (33.7%) believed that someone who was "brain dead" was legally dead. The majority of respondents (86.2%) identified the "brain-dead" patient in the first scenario as dead, 57.2 percent identified the patient in a coma as dead (Scenario 2), and 34.1 percent identified the patient in a PVS as dead (Scenario 3). Nearly one-third (33.5%) were willing to donate the organs of patients they classified as alive for at least one scenario, in seeming violation of the dead donor rule. Most respondents were not willing to violate the dead donor rule, although a substantial minority was. However, the majority of respondents were unaware, misinformed, or held beliefs that were not congruent with current definitions of "brain death." This study highlights the need for more public dialogue and education about "brain death" and organ donation. (shrink)

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability (...) to interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Incoherence of Determining Death by Neurological Criteria: A Commentary on Controversies in the Determination of Death, A White Paper by the President’s Council on Bioethics*Franklin G. Miller** (bio) and Robert D. Truog (bio)Traditionally the cessation of breathing and heart beat has marked the passage from life to death. Shortly after death was determined, the body became a cold corpse, suitable for burial or cremation. Two technological changes in (...) the second half of the twentieth century prompted calls for a new, or at least expanded, definition of death: the development of intensive care medicine, especially the use of mechanical ventilators, and the advent of successful transplantation of vital organs. Patients with profound neurological damage, leaving them incapable of breathing on their own and in an irreversible coma, could be maintained for some period of time with the aid of mechanical ventilation. The situation of these patients posed two ethical questions. Is it appropriate to stop life-sustaining treatment? If so, is it acceptable to retrieve vital organs for transplantation to save the lives of others before stopping treatment?In 1968, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death proposed that death could be determined on the basis of neurological criteria, thus providing a positive answer to these two questions (Ad Hoc Committee 1968). According to the position of this committee, patients diagnosed with the cessation of brain function are dead, despite the fact that they breathe and circulate blood with the aid of mechanical ventilation. [End Page 185] Because they are dead, it is appropriate, indeed imperative, to stop mechanical ventilation. And because they are dead, it becomes ethical to procure vital organs for transplantation before stopping what otherwise would be life-sustaining treatment. Remarkably, this innovative neurological determination of death became, with little debate or controversy, the established position in medical ethics and the law throughout the United States.The Harvard Committee articulated the diagnosis of “irreversible coma,” but merely asserted that this condition constituted death. No explanatory rationale was provided. It fell to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research to provide an authoritative rationale in its 1981 report, Defining Death. The second paragraph of the report set the stage as follows: “The question addressed here is not inherently difficult or complicated. Simply, it is whether the law ought to recognize new means for establishing that the death of a human being has occurred” (President’s Commission 1981, p. 3). The Commission claimed that “death is a unitary phenomenon” (p. 7) and that the determination of death by neurological criteria, in terms of the absence of all brain function, is consistent with the traditional conception of death as the cessation of vital functioning of the organism as a whole. The key issue is the integrative functioning of the human organism, which ceases to exist, according to the Commission, when the whole brain, including higher cortical areas and the brain stem, fails to function. Although “brain-dead” patients do not appear to be dead—i.e., the reality of their death is “masked” by the activity of mechanical ventilation—the patient’s body has irreversibly lost all capacity for integrative functioning. In the words of the Commission: “When artificial means of support mask this loss of integration as measured by the old methods [cessation of respiration and heart beat], brain-oriented criteria and tests provide a new window on the same phenomenon” (p. 33). The President’s Commission was instrumental in developing and establishing “The Uniform Definition of Death Act”: “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead” (p. 2).Although the question posed by the President’s Commission was easy to articulate, the answer, over time, has proved complicated and controversial. The coherence and cogency of determining death by neurological criteria has been challenged. Various experts have demonstrated that “brain-dead” patients maintained on mechanical ventilation display a range of vital, integrative, functioning, which conflicts with the judgment that they are dead (Truog and... (shrink)

This special issue, Withholding artificial nutrition and hydration, comprises several papers, commentaries and responses centred largely around the issues raised by the 2011 decision of the English Court of Protection in W v M.i In that case, the mother of an adult patient applied for the withdrawal of life-sustaining treatment . In 2003, the patient, M, had contracted viral encephalitis and suffered irreparable brain damage as a result. She fell into a coma, and when she emerged appeared to be (...) in a vegetative state and for 8 years was entirely dependent on life-sustaining care.Following her mother's application, M was held to lack capacity and hence in accordance with section 4 of the Mental Capacity Act 2005 , the matter turned on whether it was in her best interests for the treatment to be withdrawn. It was made clear in the 1993 decision of Airedale NHS Trust v Bland that life-sustaining treatment could be withdrawn from a patient in a permanent vegetative state if, on balance, it was not in his or her interest to continue treatment.ii The MCA also allows for withdrawal of treatment, although the approach to best interests is slightly different. However, the case of W v M is importantly different from the Bland case, because M was found not to be in a PVS, but instead was minimally conscious . Much evidence was presented of her capacity to respond to stimuli, seemingly express emotion and occasionally speak.In the first of his papers in this issue , Julian Sheather provides an overview of the case, particularly illuminating the discussions of M's interests and the views of her …. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Disability Embodied: Narrative Exploration of the Lives of Two Brothers Living with Traumatic Brain InjuryDouglas E. KiddAny discussion of personal experiences with disability, inevitably lead me to recall the experiences of my brother, Richard Kidd. An examination of our journeys clearly illustrates the term disability. More so, our stories reveal the outcome of severe physical impairment dictates the limits of personal agency and autonomy. Perhaps an obvious conclusion, but (...) exploration of our experience is useful as we provide living testimony to eventualities that could similarly occur to others. In order to provide context for discussion of our disabilities, I will briefly recall how we acquired our traumatic brain injuries (TBI), as well as how our brain injuries are expressed. The article will demonstrate that due to the severity of the brain damage he acquired, Richard is entirely subject to the whim of the society he encounters, and thus disabled. The article will also discuss how the disabling attitudes I have encountered sought to diminish my humanity.Richard KiddRichard’s descent into impairment began in the early evening hours of December 31, 1987. As a pedestrian, Richard attempted to cross a street in Indianapolis, when a car without using headlights, slammed into him. In addition, the driver fled the scene of the accident. After stabilizing from the initial trauma—multiple compound fractures to both legs and severe brain injury—Richard spent approximately ten months in coma. After emerging from coma, Richard underwent months of therapy. Albeit with consistent direction from others, therapy enhanced Richard’s ability to hold a cup and use a spoon. These were significant victories for Richard and signaled the beginning of his recovery. However, within two years of his accident, monies ended for rehabilitation and Richard entered into custodial care at his first nursing facility. As time passed, his daily interactions with poorly supervised, unskilled, and underpaid nursing facility employees with little time to work with Richard meant it was more cost efficient for staff to simply spoon–feed Richard. Consequently, Richard lost the ability to participate in an aspect of his self–care. Richard’s humanity took years to gradually erode, but due to the severity of his impairments, he became viewed by those he encountered as an object of treatment, or reservoir of pain and pity, rather than an individual worthy of respect. Accordingly, [End Page 199] Richard became viewed as other. Thus began Richard’s descent into disability.A complete lack of dental care for decades provides a good example of Richard’s treatment as other. Richard’s experience also demonstrates that desensitized members of the medical, dental, and long–term care professions sometimes precipitate grave circumstances. The combination of an inattention to his needs and his limited ability to participate with his self–care meant that Richard typically went without dental treatment. His quality of life diminished further when aides at a nursing facility dropped him. During the fall, Richard’s face smashed into the floor and several teeth were shattered. More than a decade passed before Richard finally received follow–up dental treatment—that day nearly cost him his life. Due to prolonged neglect, all of Richard’s teeth required extraction. I do not question the dental surgeon’s assessment of Richard’s teeth. I am certain that all of his teeth needed to be removed; but Richard’s sedentary lifestyle meant that he had limited ability to cope with the trauma associated with having 24 teeth removed in one session. I feel certain the dental surgeon assumed Richard was like most other patients and could handle the stress associated with the procedures. However, Richard could not cope with trauma and blood loss the extractions produced. What is worse than the dental surgeon’s assessment of Richard’s ability to withstand surgery is the post–op personnel decision to discharge him to home, shortly after surgery. The nursing facility was ill–equipped to cope with the extent of the blood loss that ensued and soon Richard began to aspirate on his own blood. Accordingly, Richard was sent to the hospital where he proceeded to slip into coma. Richard remained in a coma for approximately four days and in hospital... (shrink)

This study is a kind of applied phenomenology, or more precisely, of applied phenomenological hermeneutics. I argue that phenomenologists hardly analyze concrete phenomena but prefer to engage in theoretical debates, and therefore I call for more applied studies. The case of a patient who suffered a cerebralhemorrhage is used in order to reconstruct how she slowly regained everyday sense-connexions. The case is very interesting as the patient was rather disoriented when waking up from an artificial coma of several weeks, (...) and it took her many years to fully recover. The goal of this paper is to describe some aspects of this process from a subjective perspective as well as from a participant observer’s viewpoint. The data used for this chapter mainly stem from in-depth qualitative interviews. The structures of the life-world of Alfred Schutz are used to analyze the processes of sense constitution. This proves helpful but the data also suggest a revision of Schutz’s analyses in some respects. (shrink)

Carbon monoxide intoxication leads to acute and chronic neurological deficits, but little is known about the specific noxious mechanisms. 1 H magnetic resonance spectroscopy may allow insight into the pathophysiology of CO poisoning by monitoring neurochemical disturbances, yet only limited information is available to date on the use of this protocol in determining the neurological effects of CO poisoning. To further examine the short-term and long-term effects of CO on the central nervous system, we have studied seven patients with (...) CO poisoning assessed by gray and white matter MRS, magnetic resonance imaging and neuropsychological testing. Five patients suffered from acute high-dose CO intoxication and were in coma for 1–6 days. In these patients, MRI revealed hyperintensities of the white matter and globus pallidus and also showed increased choline and decreased N -acetyl aspartate ratios to creatine, predominantly in the white matter. Lactate peaks were detected in two patients during the early phase of high-dose CO poisoning. Two patients with chronic low-dose CO exposure and without loss of consciousness had normal MRI and MRS scans. On follow-up. five of our seven patients had long-lasting intellectual impairment, including one individual with low-dose CO exposure. The MRS results showed persisting biochemical alterations despite the MRI scan showing normalization of morphological changes. In conclusion, the MRS was normal in patients suffering from chronic low-dose CO exposure; in contrast, patients with high-dose exposure showed abnormal gray and white matter levels of NAA/Cr, Cho/Cr and lactate, as detected by 1 H MRS, suggesting disturbances of neuronal function, membrane metabolism and anaerobic energy metabolism, respectively. Early increases in Cho/Cr and decreases of NAA/Cr may be related to a poor long-term outcome, but confirmation by future studies is needed. (shrink)

New Natural Law Theory and the Catholic medico-moral tradition often lead to similar conclusions in hard cases regarding end-of-life care. Considering the provision of artificial nutrition and hydration to patients suffering from post-coma unresponsive wakefulness, however, brings to light subtle ways in which NNL differs from the centuries-old natural law tradition. In this essay, I formalize the methodology embedded within the casuistry of the medico-moral tradition and show how it differs from NNL with respect to the role played (...) by double-effect reasoning and the perspective for analyzing cases regarding care for those who cannot speak for themselves. Importantly, the ordinary/extraordinary means distinction has never historically been understood as an application of double effect and logically cannot be so understood. Given the outsized role that double effect plays in NNL, the theory leads to conclusions that deviate from the Catholic medico-moral tradition and creates additional burdens and duties for the sick. (shrink)

Mrs. K is a thirty-one-year-old Russian-speaking mother of two, who was brought in by ambulance after attempting suicide by jumping in front of train. Probable depression x months. Stressor: lost custody battle over older child. Current status: deep coma, ventilator-dependent, and prognosis grim. Next of kin is estranged husband; he demands participation in medical decision making. Legal proxy is patient's boyfriend; forcibly removed from the intensive care unit for agitated behavior and alcohol intoxication.I magine the difficulty for the ICU (...) staff as it tries to patch together the broken body of Mrs. K, described above. If, as appears likely, the physicians’ efforts begin to fail, who will speak for this patient, who can no longer speak for herself, and determine the appropriate goals and limits of intensive medical care? (shrink)

As a scientific, materialist worldview becomes increasingly difficult to repudiate, and as philosophers increasingly uncover and articulate the conceptual nature of morality and distinctively moral normativity, the threat of moral anti-realism becomes more and more real. This perspective is argued in Chapter One. Chapter Two discusses how laws and bioethical trends that pertain to the clinical management of patients in a vegetative coma differ from country to country and continue to give rise to unresolved legal debates and scientific (...) controversy. Chapter Three covers how caregivers in palliative care must be supported to better understand patients hopes and needs, making them comfortable to decide when or how much they want to eat. Chapter Four synthesises findings from four empirical studies conducted in Western Africa (Togo) on topics related to the autonomy (end of life decision-making among terminally-ill patients), benevolence and non-malevolence (breaking bad news to elderly patients and their families), and justice (informal payments to physicians, criminal prosecution in cases of HIV transmission) principles of bioethics. Finally, Chapter Five argues that expert members in Ethics committees have an unfair upper-hand, with their decisions trumping other debates in committee deliberations. Qualitative research is brought to bear which illustrates this and which also notes how expertise dilutes the training given to newly appointed ethics committee members. (shrink)

OBJECTIVE: Following two randomized controlled trials that demonstrated reduced mortality and better neurological outcome in cardiac arrest patients, mild therapeutic hypothermia was implemented in many intensive care units. Up to now, no large observational studies have confirmed the beneficial effects of mild therapeutic hypothermia. DESIGN: Internet-based survey combined with a retrospective, observational study. PATIENTS: All patients admitted to an intensive care unit in The Netherlands after cardiac arrest from January 1, 1999 until January 1, 2009. DATA SOURCE: (...) Dutch National Intensive Care Evaluation database. METHODS: The moment of implementation of mild therapeutic hypothermia for each hospital participating in the Dutch National Intensive Care Evaluation database was determined with an Internet survey. To compare mortality before and after implementation of mild therapeutic hypothermia, the odds ratio adjusted for Simplified Acute Physiology Score II score, age, gender, propensity score, and in- or out-of-hospital cardiac arrest was calculated. Patients were excluded if 1) they were admitted to an intensive care unit that did not respond to the survey, 2) they were admitted within 3 months after implementation of mild therapeutic hypothermia, 3) they had a Glasgow Coma Scale score of >8, or 4) they did not satisfy the Simplified Acute Physiology Score II inclusion criteria. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 13,962 patients were admitted to an intensive care unit following cardiac arrest. In total 8,645 patients were excluded, 5,544 because of a Glasgow Coma Scale score of >8. Of the resultant 5,317 patients, 1,547 patients were treated before and 3,770 patients after implementation of mild therapeutic hypothermia. Patients admitted after implementation of mild therapeutic hypothermia had lower minimal and maximal temperatures (p < .0001) during the first 24 hrs on the intensive care unit compared to patients admitted before implementation of mild therapeutic hypothermia. The adjusted odds ratio of the hospital mortality of patients treated after implementation of mild therapeutic hypothermia was 0.80 (95% confidence interval of 0.65-0.98, p = .029). CONCLUSION: The results of this retrospective, observational survey suggest that implementation of mild therapeutic hypothermia in Dutch intensive care units is associated with a 20% relative reduction of hospital mortality in cardiac arrest patients. (shrink)

Brain dead organ donors are the principal source of transplantable organs. However, it is controversial whether brain death is the same as biological death. Therefore, it is unclear whether organ removal in brain death is consistent with the ‘dead donor rule’, which states that organ removal must not cause death. Our aim was to evaluate the public9s opinion about organ removal if explicitly described as causing the death of a donor in irreversible apneic coma. We conducted a cross-sectional internet (...) survey of the American public (n=1096). Questionnaire domains included opinions about a hypothetical scenario of organ removal described as causing the death of a patient in irreversible coma, and items measuring willingness to donate organs after death. Some 71% of the sample agreed that it should be legal for patients to donate organs in the scenario described and 67% agreed that they would want to donate organs in a similar situation. Of the 85% of the sample who agreed that they were willing to donate organs after death, 76% agreed that they would donate in the scenario of irreversible coma with organ removal causing death. There appears to be public support for organ donation in a scenario explicitly described as violating the dead donor rule. Further, most but not all people who would agree to donate when organ removal is described as occurring after death would also agree to donate when organ removal is described as causing death in irreversible coma. (shrink)