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)

The Royal College of Physicians of London published the 2013 national clinical guidelines on prolonged disorders of consciousness in vegetative and minimally conscious states. The guidelines acknowledge the rapidly advancing neuroscientific research and evolving therapeutic modalities in PDOC. However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neurorehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration . This withdrawal is deemed necessary because patients (...) in PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The end-of-life care pathway is centered on a staged escalation of medications, including sedatives, opioids, barbiturates, and general anesthesia, concurrent with withdrawal of CANH. Agitation and distress may last from several days to weeks because of the slow dying process from starvation and dehydration. The potential problems of this end-of-life care pathway are similar to those of the Liverpool Care Pathway. After an independent review in 2013, the Department of Health discontinued the Liverpool Care pathway in England. The guidelines assert that clinicians, supported by court decisions, have become the final authority in nonconsensual withdrawal of CANH on the basis of “best interests” rationale. We posit that these guidelines lack high-quality evidence supporting: 1) treatment futility of CANH, 2) reliability of distress assessment from starvation and dehydration, 3) efficacy of pharmacologic control of this distress, and 4) proximate causation of death. Finally, we express concerns about the utilitarian-based assessment of what constitutes a person’s best interests. We are disturbed by the level and the role of medical authoritarianism institutionalized by these national guidelines when deciding on the worthiness of life in PDOC. We conclude that these guidelines are not only harmful to patients and families, but they represent the means of nonconsensual euthanasia. The latter would constitute a gross violation of the public’s trust in the integrity of the medical profession. (shrink)

The question a judge has to ask in deciding whether or not life-sustaining treatment should be withdrawn is whether the continued treatment is lawful. It will be lawful if it is in the patient’s best interests. Identifying this question gives no guidance about how to approach the assessment of best interests. It merely identifies the judge’s job. The presumption in favour of the maintenance of life is part of the job that follows the identification of the question.The presumption is best (...) regarded as a presumption of law. It has long been recognised as part of the way in which the English law discharges its obligations under Article 2 of the European Convention on Human Rights. But even if it is a ‘mere’ evidential presumption it cannot, on the facts of most cases involving applications for the withdrawal of life-sustaining treatment from patients in prolonged disorders of consciousness, be rebutted. (shrink)

In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient’s best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two (...) leading cases —Bland and James —the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster’s argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence. (shrink)

BackgroundIn the ruling inY[2018], the UK Supreme Court has confirmed that there is no general requirement for the courts in England and Wales to authorise the withdrawal of clinically assisted nutrition and hydration from patients with prolonged disorders of consciousness. The perceived requirement, which originated in a court ruling in 1993, encompassed those in the vegetative state and those in the minimally conscious state. The ruling inYconfirms that the court may still be approached to decide difficult or (...) contested cases, but there is otherwise no routine requirement that the judges be approached.Main bodyThere is much to welcome in this ruling, particularly as it means that these decisions for these patients are no longer (unusually) singled out for a judicial decision, with all the financial and emotional costs that court proceedings can entail. However, there is also a risk that the ruling might have unwelcome consequences. First, there is the possibility that patients might die too soon, particularly if doctors should now adopt the courts’ previous reasoning, which has suggested that patients in the vegetative state lack interests, so treatment may – perhaps must – be withdrawn. Secondly, there is the converse possibility that patients might live too long, since empirical research suggests that – whether intentionally or not – patients’ families, clinicians, and the health system appear to promote treatment-by-default.ConclusionRather than adopt general positions, which may be contestable and potentially risky, this article argues, on a pluralistic basis, that the individual patient should be the focus of any decision made in his or her ‘best interests’. The existing legal framework in England and Wales, which is provided by the Mental Capacity Act 2005, already points in this direction, although more efforts may be needed to ensure that those involved in making these decisions are suitably educated and supported. Fortunately, new guidance from the British Medical Association could help clinicians and families to make decisions in the future, which are appropriate for the incapacitated individual patient in question. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...) prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

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

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

BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with (...) PDoC who were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results. (shrink)

Advocates of the Person-Centered Healthcare (PCH) approach say that PCH is a response to a failure of caring for patients as persons. Nevertheless, there are many human subjects falling to fulfill the requirements of a traditional philosophical definition of personhood. Hence, if we take, PCH seriously, a greater clarification of the key terminology of PCH is urgently needed. It seems necessary, for instance, that the concept of the person should be extended in order to include those individuals with insipient or (...) immature levels of consciousness, as well as those who are severely and permanently mentally handicapped. In this article, we will depart from some well-known philosophical concepts of what it means to be a person and try to offer a broader and more inclusive meaning. We suggest that persons are human beings with a socially recognized biography, which implies to recognize as persons individuals with necessities, but also with narratives about their interests and claims, expressed sometimes by other people related to them. This is particularly the case of individuals that suffer from severe disorders of consciousness. For those, is not only care that matters; respect matters too. Caregivers should therefore not only sympathetically care for the well-being of these people; they should also be concerned to respect their interests and claims by interpreting them empathetically, in the light of their biographical story. Our conclusion is that, in order to be coherent, PCH must consider individuals with severe disorders of consciousness as persons and we think that our revised concept of personhood fits with this requirement. (shrink)

This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, (...) and examines the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland[1993] AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the ‘burden’ of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being. (shrink)

Professor Charles Foster1 argues that the recent decision by the Supreme Court2 on the process of making decisions about medical treatment in people who lack capacity due to a prolonged disorder of consciousness is fostering medical paternalism. He considers that the judgment shows ‘ deference to the guidelines of various organisations ’ and then that ‘ The guidance has effectively become a definitive statement of the relevant obligations,’ concluding that ‘ This usurps the function of the law.’ Healthcare (...) teams make all decisions concerning medical care provided; no-one else can. Both the clinicians themselves, and any guidance provided to them, must comply with the Mental Capacity Act 2005.3 Lady Black’s judgment makes clear that ‘ The basic protective structure is established by the MCA 2005 ’ and that the associated Code of Practice4 ‘ contains valuable guidance ’. She specifically highlights that the decision-maker must ensure that ‘ account has been taken of the patient’s previously expressed wishes and those of people close to him, as well as the opinions of other medical personnel. The MCA 2005 requires this to happen, and is reinforced by the professional guidance available to doctors.’ The Act says: ‘ He must consider, so far as is reasonably ascertainable— 1. the person’s past and present wishes and feelings (and, in …. (shrink)

First-person reports of Major Depressive Disorder reveal that when an individual becomes depressed a profound change or ‘shift’ to one’s conscious experience occurs. The depressed person reports that something fundamental to their experience has been disturbed or shifted; a change associated with the common but elusive claim that when depressed one finds oneself in a ‘different world’ detached from reality and other people. Existing attempts to utilise these phenomenological observations in a psychiatric context are challenged by the fact that this (...) experiential ‘shift’ characteristic of depression appears mysterious and resists analysis in scientific terms. This paper offers a way out of this predicament. The hypothesis proposed is that when an individual becomes depressed, the individual departs from a state of ordinary wakeful consciousness and enters a distinctive global state of consciousness akin to dreaming and the psychedelic state. After unpacking and motivating this hypothesis in the context of research in consciousness science, I outline two of its important implications for the neurobiology of depression and psychedelic psychiatry. The upshot is a promising and conceptually well-motivated hypothesis about depression which is apt for empirical uptake and development. (shrink)

Over the last quarter of a century, English medical law has taken an increasingly firm stand against medical paternalism. This is exemplified by cases such as Bolitho v City and Hackney Health Authority, Chester v Afshar, and Montgomery v Lanarkshire Health Board. In relation to decision-making on behalf of incapacitous adults, the actuating principle of the Mental Capacity Act 2005 is respect for patient autonomy. The only lawful acts in relation to an incapacitous person are acts which are in the (...) best interests of that person. The 2005 Act requires a holistic assessment of best interests. Best interests are wider than ‘medical best interests’. The 2018 judgment of the Supreme Court in An NHS Trust v Y from patients in prolonged disorders of consciousness ) risks reviving medical paternalism. The judgment, in its uncritical endorsement of guidelines from various medical organisations, may lend inappropriate authority to medical judgments of best interests and silence or render impotent non-medical contributions to the debate about best interests—so frustrating the 2005 Act. To minimise these dangers, a system of meditation should be instituted whenever it is proposed to withdraw life-sustaining CANH from patients with PDOC, and there needs to be a guarantee of access to the courts for families, carers and others who wish to challenge medical conclusions about withdrawal. This would entail proper public funding for such challenges. (shrink)

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics NetworkCharcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor (...) dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients. (shrink)

A recent qualitative study published in Neuroethics by Schembs and colleagues explores how functional neurodiagnostics of consciousness inform surrogate decision making in cases of disorders of consciousness. In this commentary, we argue that the chosen methodology significantly limits the scope of the potential conclusions and suggest an embedded ethnographic approach of co-presence as an alternative.

The presence or absence of consciousness is the linchpin of taxonomy for disorders of consciousness (DOCs), as well as a focal point for end-of-life decision making for patients with DOCs. Focus on consciousness in this latter context has been criticized for a number of reasons, including the uncertainty of the diagnostic criteria for consciousness, the irrelevance of some forms of consciousness for determining a patient’s interests, and the ambiguous distinction between consciousness and unconsciousness. (...) As a result, there have been recent suggestions that perhaps consciousness ought not to play the focal role that it does in decision making for persons with DOCs, and that other considerations, such as patient and family values, ought to take center stage. In this article, I take a step back and reexamine the meaning of consciousness in the DOC taxonomy. I propose that, while consciousness in DOC taxonomy is defined as “wakeful awareness,” this definition, while clinically expedient, occasions ethical misunderstanding. Using resources from non-Western philosophy of mind, I argue that the form of consciousness that is ethically relevant in DOCs is intransitive, or pure. I contrast this pure experience with transitive consciousness to highlight why ethical conclusions ought not define consciousness solely as “wakeful awareness,” even if clinical criteria do. (shrink)

Disorders of consciousness pose a substantial ethical challenge to clinical decision making, especially regarding the use of life-sustaining medical treatment. For these decisions it is paramount to know whether the patient is aware or not. Recent brain research has been striving to assess awareness by using mainly functional magnetic resonance imaging. We review the neuroscientific evidence and summarize the potential and problems of the different approaches to prove awareness. Finally, we formulate the crucial ethical questions and outline the (...) different articles in this special issue on disorders of consciousness. (shrink)

:Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking—including decisions about life-sustaining treatment—even though (...) the prognostic value of covert consciousness is currently unknown. This paper provides guidance to clinicians and families in incorporating individual research results of unknown prognostic value into surrogate decisionmaking, focusing on three potential issues: Surrogate decisionmakers may misinterpret results; Results may create false hope about the prospects of recovery; There may be disagreement about the meaningfulness or relevance of results, and appropriateness of continued care. (shrink)

This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of (...) accurately measuring the welfare burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (shrink)

As a member of the New York State Task Force on Life and the Law and the author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, the author draws upon his work as a clinical ethicist during the COVID-19 Spring surge in New York to analyze the impact of ventilator allocation guidelines proposed by the Task Force on people with disorders of consciousness. While a non-discriminatory methodology was intended by the Task Force, (...) the author concludes that the guidelines would have discriminated against people with disorders of consciousness had they been promulgated. This was due to errors in exclusion criteria, the utilization of the Sequential Organ Failure Assessment (SOFA) score, and the Glasgow Coma Scale which assesses motor output and not consciousness. While allocation and triage decisions may be neccessary during a pandemic, the ethical integrity of these determinations depend upon proper metrics. (shrink)

Among other issues, Peterson and colleagues (2021) raise the crucial but vexing question of how to assess the well-being of patients with disorders of consciousness (DoCs). I provide some suggestio...

In this peer commentary on L. Syd M. Johnson’s “Inference and Inductive Risk in Disorders of Consciousness,” I argue for the necessity of disability education as an integral component of decision-making processes concerning patients with DOC and, mutatis mutandis, all patients with disabilities. The sole qualification Johnson places on such decision-making is that stakeholders are educated about and “understand the uncertainties of diagnosis and prognosis.” Drawing upon research in philosophy of disability, social epistemology, and health psychology, I argue (...) that this educational qualification is insufficient to address systemic ableism and other forms of epistemic bias in quality of life judgments. (shrink)

Disorders of consciousness continue to profoundly challenge both families and medical professionals. Once a brain-injured patient has been stabilized, questions turn to the prospect of recovery. However, what “recovery” means in the context of patients with prolonged DOC is not always clear. Failure to recognize potential differences of interpretation—and the assumptions about the relationship between health and well-being that underlie these differences—can inhibit communication between surrogate decisionmakers and a patient’s clinical team, and make it difficult to establish (...) the goals of care. The authors examine the relationship between health and well-being as it pertains to patients with prolonged DOC. They argue that changes in awareness or other function should not be equated to changes in well-being, in the absence of a clear understanding of the constituents of well-being for that particular patient. The authors further maintain that a comprehensive conception of recovery for patients with prolonged DOC should incorporate aspects of both experienced well-being and evaluative well-being. (shrink)

Some patients, following brain injury, do not outwardly respond to spoken commands, yet show patterns of brain activity that indicate responsiveness. This is “cognitive-motor dissociation” (CMD). Recent research has used machine learning to diagnose CMD from electroencephalogram (EEG) recordings. These techniques have high false discovery rates, raising a serious problem of inductive risk. It is no solution to communicate the false discovery rates directly to the patient’s family, because this information may confuse, alarm and mislead. Instead, we need a procedure (...) for generating case-specific probabilistic assessments that can be communicated clearly. This article constructs a possible procedure with three key elements: (1) a shift from categorical “responding or not” assessments to degrees of evidence; (2) the use of patient-centred priors to convert degrees of evidence to probabilistic assessments; and (3) the use of standardized probability yardsticks to convey those assessments as clearly as possible. (shrink)

Chronic disorders of consciousness, particularly the vegetative and the minimally conscious states, pose serious diagnostic challenges to neurologists and clinical psychologists. A look at the concept of “diagnosis” in medicine reveals its social construction: While medical categorizations are intended to describe facts in the real world, they are nevertheless dependent on conventions and agreements between experts and practitioners. For chronic disorders of consciousness in particular, the terminology has proven problematic and controversial over the years. Novel research (...) utilizing functional brain imaging has demonstrated that a substantial number of patients retain their capabilities to communicate by brain activity even when they are incapable of classic verbal and nonverbal responses due to the dysfunction of their motor behavior. Moreover, thorough diagnostic assessments constitute the foundations for suitable rehabilitation measures. Thus, ethical arguments support the claim that the potential of emerging methods for communication via brain activity should be evaluated comprehensively in patients with chronic disorders of consciousness, once the technological methodology for this endeavor progresses to a reliable and affordable stage. (shrink)

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

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.

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

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

Disorders of consciousness (DoC)—that is, unresponsive wakefulness syndrome/vegetative state and minimally conscious state—are debilitating conditions for which no reliable markers of consciousness recovery have yet been identified. Evidence points to the GABAergic system being altered in DoC, making it a potential target as such a marker.

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)

On January 5, 2019, the Associated Press reported that a woman thought to have been in the vegetative state for over a decade gave birth at a Hacienda HealthCare facility. Until she delivered, the staff at the Phoenix center had not noticed that their patient was pregnant. The patient was also misdiagnosed.Misdiagnosis of patients with disorders of consciousness in institutional settings is more the norm than the exception. Misdiagnosis is also connected to a broad and extremely significant change (...) in the understanding of the vegetative state—a change that the field of bioethics has not yet fully taken into account. In September 2018, the American Academy of Neurology, the American College of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research issued a comprehensive evidence‐based review on disorders of consciousness and an associated practice guideline on the care of these patients. These landmark publications update the 1994 Multi‐Society Task Force Report on the Vegetative State, which subcategorized the persistent vegetative state as either persistent (once the vegetative state lasted one month) or permanent (once the vegetative state lasted three months after anoxic injury or twelve months after traumatic injury). Noting that 20 percent of patients thought to be permanently unconscious might regain some level of consciousness, the new guideline has eliminated the permanent vegetative state as a diagnostic category, replacing it with the chronic vegetative state. (shrink)

There is a strong presumption in favour of the maintenance of life. Given sufficient evidence, it can be rebutted. But the epistemic uncertainties about the best interests of patients in prolonged disorders of consciousness and the wishes that they should be presumed to have are such that, in most PDOC cases, the presumption cannot be rebutted. It is conventional and wrong to assume that PDOC patients have no interest in continued existence. Treatment withdrawal/continuation decisions should focus on (...) the patient as he or she actually is, and should not unjustifiably assume that the premorbid patient continues to exist unchanged, and that the actual patient has the same interests as the premorbid patient and would make the same decisions in relation to treatment as the premorbid patient would have done. (shrink)

Disorders of Consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders, and focused renewed attention on the medical and ethical problem of misdiagnosis. -/- This book examines the entanglement (...) of epistemic and ethical uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd M Johnson pulls together multiple threads in this work: the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status. Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice. With applications to various decisional contexts where uncertainty and ethical risk interact, this ethical approach enables surrogate decision makers facing fraught and risky choices to fulfill their obligations as moral and epistemic agents. (shrink)

The Supreme Court has ruled in the case of Y that there is no requirement to seek the approval of the Court of Protection in decisions to withdraw clinically assisted nutrition and hydration from patients in a prolonged disorder of consciousness.1 Mr Y was 52-year-old man who suffered a cardiac arrest after a myocardial infarction as a result of coronary artery disease. It was not possible to resuscitate him for well over 10 min, resulting in severe cerebral hypoxia (...) which caused extensive brain damage. Mr Y’s family and the NHS Trust treating him agreed that Mr Y would not want to be kept alive through the provision of CANH given his poor prognosis. They sought a declaration that it was not mandatory for applications of withdrawal of CANH to come before the court, which was granted by Mrs Justice O’Farrell in the first instance.2 Permission was granted for the appeal to ‘leapfrog’ the Court of Appeal and to proceed to the Supreme Court for consideration. In the interim, Mr Y died after contracting acute respiratory sepsis, but the Supreme Court determined that the appeal should go ahead in light of the general importance of the issues raised. In delivering the opinion of the Supreme Court on 30 July 2018, Lady Justice Black rejected the historical distinction that had been drawn between patients in PDOC and non-PDOC patients, in a way that had justified judicial involvement for patients in PDOC but not for others.3 She was clear that the correct approach to all cases involving CANH was to make a decision based on what was in the best interests of the patient. She further outlined that: > The documentation supplied to us shows that the difficulty that there is in assessing the patient and in …. (shrink)

Recent results from neuroimaging appear to indicate that some patients in a vegetative state have partially intact awareness. These results may demonstrate misdiagnosis and suggest the need not only for alternative forms of treatment, but also for the reconsideration of end-of-life decisions in cases of disorders of consciousness. This article addresses the second consequence. First, I will discuss which aspects of consciousness may be involved in neuroimaging findings. I will then consider various factors relevant to ethical end-of-life (...) decision-making, and analyse whether and to what extent the above consequence applies to these factors. It will be shown that knowledge of the existence of partial awareness in patients with disorders of consciousness only influences end-of-life decision-making if certain background assumptions are made. (shrink)