In this article we argue that it is reasonable to believe that normal vertebrate animals can feel pleasure, and that there is sufficient evidence for a capacity for pleasure in some invertebrates. It follows that the pleasures of animals are morally significant. We argue for that in a few steps. First, we explain why philosophers used to concentrate more on pain rather than pleasure in regard to animals. Second, we define the notion of pleasure and show how it implies to (...) non-human animals. Third we discuss whether animals are conscious beings and how they may feel pleasure. It is true that we do not know exactly how pain and pleasure feel to nonhumans, but this is also true for other humans. Even though we can give a detailed verbal description of what we feel, pains and pleasures are subjective and we do not have any certain insight into what another human is feeling. This limitation should not stop us from behaving in a way that takes into account the fact that both we and many nonhuman animals are beings who can suffer and enjoy. (shrink)

Most philosophers think that phenomenal consciousness underlies, or at any rate makes a large contribution, to moral considerability. This paper argues that many such accounts invoke question-begging arguments. Moreover, they’re unable to explain apparent differences in moral status across and within different species. In the light of these problems, I argue that we ought to take very seriously a view according to which moral considerability is grounded in functional properties. Phenomenal consciousness may be sufficient for having a moral value, but (...) it may not be necessary, and it may contribute relatively little to our overall considerability. (shrink)

Consciousness-based approaches to non-human moral status maintain that consciousness is necessary for (some degree or level of) moral status. While these approaches are intuitive to many, in this paper I argue that the judgment that consciousness is necessary for moral status is not secure enough to guide policy regarding non-humans, that policies responsive to the moral status of non-humans should take seriously the possibility that psychological features independent of consciousness are sufficient for moral status. Further, I illustrate some practical consequences (...) of calling consciousness-based views into question. (shrink)

In the science of consciousness, it’s oftentimes assumed that some creatures (or mental states) are more conscious than others. But in recent years, a number of philosophers have argued that the notion of degrees of consciousness is conceptually confused. This paper (1) argues that the most prominent objections to degrees of consciousness are unsustainable, (2) examines the semantics of ‘more conscious than’ expressions, (3) develops an analysis of what it is for a degreed property to count as degrees of consciousness, (...) and (4) applies the analysis to various theories of consciousness. I argue that whether consciousness comes in degrees ultimately depends on which theory of consciousness turns out to be correct. But I also argue that most theories of consciousness entail that consciousness comes in degrees. (shrink)

This article proposes a methodological schema for engaging in a productive discussion of ethical issues regarding human brain organoids, which are three-dimensional cortical neural tissues created using human pluripotent stem cells. Although moral consideration of HBOs significantly involves the possibility that they have consciousness, there is no widely accepted procedure to determine whether HBOs are conscious. Given that this is the case, it has been argued that we should adopt a precautionary principle about consciousness according to which, if we are (...) not certain whether HBOs have consciousness—and where treating HBOs as not having consciousness may cause harm to them—we should proceed as if they do have consciousness. This article emphasizes a methodological advantage of adopting the precautionary principle: it enables us to sidestep the question of whether HBOs have consciousness and, instead, directly address the question of what kinds of conscious experiences HBOs can have, where the what-kind-question is more tractable than the whether-question. By addressing the what-kind-question, we will be able to examine how much moral consideration HBOs deserve. With this in mind, this article confronts the what-kind-question with the assistance of experimental studies of consciousness and suggests an ethical framework which supports restricting the creation and use of HBOs in bioscience. (shrink)

Patients with severe disorders of consciousness are thought to be unaware of themselves or their environment. However, research suggests that a minority of patients diagnosed as having a disorder of consciousness remain aware. These patients, designated as having “cognitive motor dissociation”, can demonstrate awareness by imagining specific tasks, which generates brain activity detectable via functional neuroimaging. The discovery of consciousness in these patients raises difficult questions about their well-being, and it has been argued that it would be better for these (...) patients if they were allowed to die. Conversely, I argue that CMD patients may have a much higher level of well-being than is generally acknowledged. It is far from clear that their lives are not worth living, because there are still significant gaps in our understanding of how these patients experience the world. I attempt to fill these gaps, by analyzing the neuroscientific research that has taken place with these patients to date. Having generated as comprehensive a picture as possible of the capacities of CMD patients, I examine this picture through the lens of traditional philosophical theories of well-being. I conclude that the presumption that CMD patients do not have lives worth living is not adequately supported. (shrink)

Consciousness has an important role in ethics: when a being consciously experiences the frustration or satisfaction of its interests, those interests deserve higher moral priority than those of a behaviourally similar but non-conscious being. I consider the relationship between this ethical role and an a posteriori (or “type-B”) materialist solution to the mind-body problem. It is hard to avoid the conclusion that, if type-B materialism is correct, then the reference of the concept of phenomenal consciousness is radically indeterminate between a (...) neuronal-level property that is distinctive to mammals and a high-level functional property that is much more widely shared. This would leave many non-mammalian animals (such as birds, fish, insects and octopuses) with indeterminate moral status. There are ways to manage this radical moral indeterminacy, but all of these ways lead to profoundly troubling consequences. (shrink)

In 2008, researchers created human three-dimensional neural tissue – known as the pioneering work of “brain organoids.” In recent years, some researchers have transplanted human brain organoids into animal brains for applicational purposes. With these experiments have come many ethical concerns. It is thus an urgent task to clarify what is ethically permissible and impermissible in brain organoid research. This paper seeks (1) to sort out the ethical issues related to brain organoid research and application and (2) to propose future (...) directions for additional ethical consideration and policy debates in the field. Toward (1), this paper first outlines the current state of brain organoid research, and then briefly responds to previously raised related ethical concerns. Looking next at anticipated scientific developments in brain organoid research, we will discuss (i) ethical issues related to in vitro brain organoids, (ii) ethical issues raised when brain organoids form complexes or have relationships with other entities, and (iii) ethical issues of research ethics and governance. Finally, in pursuit of (2), we propose research policies that are mindful of the ethics of brain organoid research and application and also suggest the need for an international framework for research and application of brain organoids. (shrink)

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

Is consciousness intrinsically valuable? Some theorists favor the positive view, according to which consciousness itself accrues intrinsic value, independent of the particular kind of experience instantiated. In contrast, I favor the neutral view, according to which consciousness is neither intrinsically valuable nor disvaluable. The primary purpose of this paper is to clarify what is at stake when we ask whether consciousness is intrinsically valuable, to carve out the theoretical space, and to evaluate the question rigorously. Along the way, I also (...) show why the neutral view is attractive and why certain arguments for the positive view do not work. (shrink)

Recent work within such disparate research areas as the epistemology of perception, theories of well-being, animal and medical ethics, the philosophy of consciousness, and theories of understanding in philosophy of science and epistemology has featured disconnected discussions of what is arguably a single underlying question: What is the value of consciousness? The purpose of this paper is to review some of this work and place it within a unified theoretical framework that makes contributions (and contributors) from these disparate areas more (...) visible to one another. (shrink)

Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do not clearly support the (...) conclusion that these patients would be better off having life-sustaining treatment withdrawn, and in fact, it may be possible for these patients to retain a passable level of well-being. I suggest that further research into the subjective experiences of these patients will allow us to better promote their well-being. (shrink)

In a recent paper, Gray, Knickman, and Wegner present three experiments which they take to show that people perceive patients in a persistent vegetative state to have less mentality than the dead. Following on from Gomes and Parrott, we provide evidence to show that participants' responses in the initial experiments are an artifact of the questions posed. Results from two experiments show that, once the questions have been clarified, people do not ascribe more mental capacity to the dead than to (...) PVS patients. There is no reason to think that people perceive PVS patients as more dead than dead. (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)

This article investigates a critical yet underexplored structural aspect of consciousness in the context of the practical ethics of neural organoid research: the unity of consciousness. We advocate for the necessity of the unified field, which has garnered substantial support from both philosophical and empirical standpoints, although the debate remains unresolved. We highlight the brainstem as a potential source of the unified conscious field, a structure already under scrutiny in neural organoid research in relation to conditions such as Parkinson’s disease (...) and post-COVID-19 syndromes. We argue that if unity is a necessary feature of consciousness, consciousness is contingent upon a specific biological system without which consciousness cannot arise, thereby narrowing the range of neural organoids of ethical concern. Furthermore, the transplantation of neural organoids into animals has emerged as a practical concern, with ethical implications varying based on the necessity of the unity of consciousness. We argue that transplantation evades a significant ethical dilemma if unity is necessary and if the organoids to be transplanted lack the neural basis for the unified field of consciousness. (shrink)

The possibility of consciousness in human brain organoids is sometimes viewed as determinative in terms of the moral status such entities possess, and, in turn, in terms of the research protections such entities are due. This commonsense view aligns with a prominent stance in neurology and neuroscience that consciousness admits of degrees. My paper outlines these views and provides an argument for why this picture of correlating degrees of consciousness with moral status and research protections is mistaken. I then provide (...) an alternative account of the correlation between moral status and consciousness, and consider the epistemic ramifications for research protections of this account. (shrink)

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)

BackgroundEthical analyses of disorders of consciousness traditionally focus on residual awareness. Going one step further, this paper explores the potential ethical relevance of the unawareness retained by patients with disorders of consciousness, focusing specifically on the ethical implications of the description of the unconscious provided by recent scientific research.MethodsA conceptual methodology is used, based on the review and analysis of relevant scientific literature on the unconscious and the logical argumentation in favour of the ethical conclusions.ResultsTwo conditions that are generally considered (...) critical components in the ethical discussion of patients with disorders of consciousness might arguably be both conscious and unconscious.ConclusionsThe unconscious, as well as consciousness, should be taken into account in the ethical discussions of patients with disorders of consciousness. (shrink)

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” (...) as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion. (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)

In English law there is a strong (though rebuttable) 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 (PVS) and minimally conscious state (MCS), 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 (and more controversially and repercussively), 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 (or consciousness the markers of which can ever be demonstrated by medical investigations). It can never be said that the identity of the patient whose best interests are at stake evaporates (so eliminating the legal or ethical subject) 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 (subject to resource allocation questions and views about the relevance of family wishes and the previously expressed wishes of the patient) should be ethically conclusive. (shrink)

In his interesting commentary, Joshua Shepherd raises two points—one related to epistemology, the other to ethics—about our article on human cerebral organoids.1 2 From the epistemological standpoint, he calls into question the need for a theory of consciousness. A theory of consciousness, for him, is not necessary because of the lack of consensus about the very nature of consciousness. Shepherd suggests that ‘given widespread disagreement, applying a theory of consciousness may not be helpful when attempting to diagnose the presence of (...) consciousness in cerebral organoids’. In Shepherd’s view, it would be better to transfer ‘concepts already under development in work on the presence and structure of consciousness in difficult marginal cases involving traumatic brain injury’.2 We could not agree more on this last point; detecting a minimal capacity for consciousness in the brain of comatose patients is a very similar challenge to inferring the presence of consciousness in cerebral organoids. Every day, as a by-product of saving many lives, intensive care medicine artificially produces thousands of brains that may remain isolated, split or fragmented; in the worst case, cortical islands, or an archipelago of islands, may survive while being disconnected from the outside world. Can these islands host some form of consciousness? That is, does it feel like anything to be a large piece of human cortex? Addressing this difficult question requires the development of general, objective brain-based indices of consciousness that are independent of sensory processing, executive functions and motor outputs.3 Consider, for example, a patient showing reflexive spontaneous behaviour, no response to command and no ability to communicate. In her brain, afferent pathways are damaged, thereby impairing the recruitment of cortical areas in response to sensory stimulation; basal ganglia, as well as other frontal structures supporting executive functions, are impaired. However, resting metabolism and significant electroencephalography …. (shrink)

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

Brain Organoids in their current state of development are patentable. Future brain organoids may face some challenges in this regard, which I address in this contribution. Brain organoids unproblematically fulfil the general prerequisites of patentability set forth in Art. 3 (1) EU-Directive 98/44/ec (invention, novelty, inventive step and susceptibility of industrial application). Patentability is excluded if an invention makes use of human embryos or constitutes a stage of the human body in the individual phases of its formation and development. Both (...) do not apply to brain organoids, unless ES-cells are used. Art. 6 (1) EU-Directive 98/44/ec excludes patentability for inventions “the commercial exploitation of which would be contrary to ordre public or morality”. While there is no conceivable scenario, in which the commercial application of current brain organoids violates the ordre public, the same is not necessarily true for future brain organoids. Keeping in mind that a development of consciousness-like abilities in future brain organoids cannot be excluded and that an ability for both physical and psychological suffering has been theorized, both of which are aspects of the ordre public, certain applications of future brain organoids may constitute a violation of the ordre public and therefore lead to an exclusion of patentability. (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)

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)

In this interesting paper, Lavazza and Massimini draw attention to a subset of the ethical issues surrounding the development and potential uses of cerebral organoids. This subset concerns the possibility that cerebral organoids may one day develop phenomenal consciousness, and thereby qualify as conscious subjects—that there may one day be something it is like to be an advanced cerebral organoid. This possibility may feel outlandish. But as Lavazza and Massimini demonstrate, the science of organoids is moving fast, and I agree (...) that the ethical issues now deserve careful scrutiny. The ethical issues are not entirely separate from epistemological issues concerning how certain we could ever be (a) that an organoid is conscious or (b) that regarding any conscious state or process, an organoid is capable of tokening that state or undergoing that process. Lavazza and Massimini’s approach is theory-based—they claim that ‘we need a general theory of consciousness that attempts to explain what experience is and what type of physical systems can have it’. I am not convinced, however, that a theory of consciousness is what we need. Nor am I convinced that detecting the presence of consciousness is the most important moral issue. Let me say a word regarding theories of consciousness first. In general, to the extent that pervasive disagreement characterises expert discussion of some phenomenon P, one should modify one’s credence downward regarding any theory of the nature of P. In my view, this is the case regarding expert discussion of consciousness. Although most philosophers are confident that consciousness is an entirely physical phenomenon, a …. (shrink)

In the case of the minimally conscious patient M, the English Court of Protection ruled that it would be unlawful to withdraw artificial nutrition and hydration (ANH) from her. The Court reasoned that the sanctity of life was the determining factor and that it would not be in M's best interests for ANH to be withdrawn. This paper argues that the Court's reasoning is flawed and that continued ANH was not in this patient's best interests and thus should have been (...) withdrawn. (shrink)

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for (...) ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (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)

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)

:Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and (...) end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations. (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)

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

Personhood is ascribed on others, such that someone who is recognized to be a person is bestowed with certain civil rights and the right to decision making. A rising question is how severely brain-injured patients who regain consciousness can also regain their personhood. The case of patients with locked-in syndrome is illustrative in this matter. Upon restoration of consciousness, patients with LIS find themselves in a state of profound demolition of their bodily functions. From the third-person perspective, it can be (...) expected that LIS patients might experience a differential personal identity and may lose their status as persons. However, from the patients’ perspective, it is uncontested that they retain their personal identity and that they consider themselves to be persons. We here include results from a survey with patients with LIS aimed at identifying the primary expectations of patients for their care by non-medical professionals. Based on these first-hand reports, we argue that personhood in LIS is progressively regained as the widening circle of others recognizes them as persons. (shrink)

Discussions of withdrawal of life support often revolve around a patient’s perceived level of suffering or lack of experience. Personhood, however, is often linked to personal agency. In the present study, 279 laypeople estimated the amount of agency and experience in hypothetical patients differing in degree of consciousness. Participants also indicated whether they would choose to maintain or terminate life support. Patients were more likely to terminate life support for a patient in a persistent vegetative state, followed by one with (...) amyotrophic lateral sclerosis and in a minimally conscious state. The decision to maintain life support was reliably predicted by perceptions of a patient’s agency but life support decisions were not significantly predicted by ratings of experience. In sum, decisions regarding maintaining life support are more influenced by perceptions of a patient’s ability to plan and act than by perceptions of a patient’s ability to feel or experience. (shrink)

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by (...) using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values. (shrink)