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)

Should we allocate costly health care to patients diagnosed with disorders of consciousness (DoC), such as patients diagnosed as being in a vegetative state or minimally conscious state? Peterson, Aas, and Wasserman (2021) argue that we should in their paper “What justifies the allocation of health care resources to patients with disorders of consciousness?” Their key insight is that the expected benefits to this patient population helps to justify such allocations. However, their insight is attached to a consequentialist framework aimed (...) at maximizing aggregate social welfare. An alleged virtue of their framework over Braddock’s (2017) approach is their agnosticism about the moral status and rights of DoC patients. In this commentary, however, we argue that their agnosticism is the biggest problem with their approach: failing to treat DoC patients as persons with rights runs the moral risk of violating their rights, which is more serious than the risk of failing to maximize social utility. A better approach that reduces moral risk would incorporate Braddock’s (2017) precautionary presumption of personhood. We should stand in solidarity with DoC patients and treat them as persons with dignity and rights. (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)

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)

BackgroundDecisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.MethodsAn online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases (...) similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.ResultsOne hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continueorwithdraw treatment.ConclusionDespite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice. (shrink)

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition (...) to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS. (shrink)

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent comm...

Controversial cases in medical ethics are, by their very nature, divisive. There are disagreements that revolve around questions of fact or of value. Ethical debate may help in resolving those disagreements. However, sometimes in such cases, there are opposing reasonable views arising from deep-seated differences in ethical values. It is unclear that agreement and consensus will ever be possible. In this paper, we discuss the recent controversial case of Vincent Lambert, a French man, diagnosed with a vegetative state, for whom (...) there were multiple court hearings over a number of years. Both family and health professionals were divided about whether artificial nutrition and hydration should be withdrawn and Lambert allowed to die. We apply a ‘dissensus’ approach to his case and argue that the ethical issue most in need of scrutiny is different from the one that was the focus of attention. (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)

BackgroundDecisions about appropriate treatment at the end of life are common in modern healthcare. Non-treatment decisions (NTDs), comprising both withdrawal and withholding of (potentially) life-prolonging treatment are in principle accepted in Norway. However, in practice they may give rise to significant moral problems for health professionals, patients and next of kin. Here, patient values must be considered. It is relevant to study the moral views and intuitions of the general population on NTDs and special areas of contention such as the (...) role of next of kin in decision-making.MethodsElectronic survey to members of a nationally representative panel of Norwegian adults. Respondents were presented with vignettes describing patients with disorders of consciousness, dementia, and cancer where patient preferences varied. Respondents answered ten questions about the acceptability of non-treatment decision making and the role of next of kin.ResultsWe received 1035 complete responses (response rate 40.7%). A large majority, 88%, supported the right of competent patients to refuse treatment in general. When an NTD was in line with the patient’s previously expressed preferences, more respondents tended to find NTDs acceptable. More respondents would accept NTDs for themselves than for the vignette patients. In a scenario with an incompetent patient, clear majorities wanted the views of next of kin to be given some but not decisive weight, and more weight if concordant with the patient’s wishes. There were, however, large variations in the respondents’ views.ConclusionThis survey of a representative sample of the Norwegian adult population indicates that attitudes to NTDs are often in line with national laws and guidelines. However, the high variance among the respondents and relatively large weight given to next of kin’s views, indicate a need for appropriate dialogue among all stakeholders to prevent conflicts and extra burdens. Furthermore, the emphasis given to previously expressed opinions indicates that advance care planning may increase the legitimacy of NTDs and prevent challenging decision-making processes. (shrink)