In a recent issue of Neuroethics, I considered whether the notion of human dignity could help us in solving the moral problems the advent of the diagnostic category of minimally conscious state (MCS) has brought forth. I argued that there is no adequate account of what justifies bestowing all MCS patients with the special worth referred to as human dignity. Therefore, I concluded, unless that difficulty can be solved we should resort to other values than human dignity in addressing the (...) moral problems MCS poses. In his new book Christopher Kaczor criticizes the argument I put forward. Below, I respond to Kaczor’s criticism. I maintain that the considerations he presents do not undermine my argument nor succeed in providing adequate justification for the view that all MCS patients possess the worth referred to as human dignity. (shrink)

Recent progress in neurosciences has improved our understanding of chronic disorders of consciousness. One example of this advancement is the emergence of the new diagnostic category of minimally conscious state (MCS). The central characteristic of MCS is impaired consciousness. Though the phenomenon now referred to as MCS pre-existed its inclusion in diagnostic classifications, the current medical ethical concepts mainly apply to patients with normal consciousness and to non-conscious patients. Accordingly, how we morally should stand with persons in minimally conscious state (...) remains unclear. In this paper, I examine whether the notion of human dignity could provide us with guidance with the moral difficulties MCS gives rise to. More precisely, I focus on the question of whether we are justified in holding that persons in minimally conscious state possess human dignity. (shrink)

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic nosology (...) about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice. (shrink)

Neurostimulation to restore cognitive and physical functions is an innovative and promising technique for treating patients with severe brain injury that has resulted in a minimally conscious state (MCS). The technique may involve electrical stimulation of the central thalamus, which has extensive projections to the cerebral cortex. Yet it is unclear whether an improvement in neurological functions would result in a net benefit for these patients. Quality-of-life measurements would be necessary to determine whether any benefit of neurostimulation outweighed any harm (...) in their response to different degrees of cognitive and physical disability. These measures could also indicate whether the technique could be ethically justified and whether surrogates could give proxy consent to its use on brain-injured patients. (shrink)

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

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use (...) of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions. (shrink)

Patients in a minimally conscious state (MCS) fall into a different diagnostic category than patients in the more familiar vegetative states (VS). Not only are MCS patients conscious in some sense, they have a higher chance for recovery than VS patients. Because of these differences, we ostensibly have reason to provide MCS patients with care that goes beyond what we provide to patients with some VS patients. But how to justify this differential treatment? I argue we can’t justify it solely (...) by looking to MCS patients’ actual levels of consciousness. We must look also to the ways in which these patients are potentially conscious. Specifically, I argue that certain sensible and well-regarded policy recommendations cannot be justified by looking solely to patients’ actual levels of consciousness, but that they can be justified by looking to patients’ potential for consciousness. Insofar then as we have prima facie reason to follow the recommendations, we also have prima facie reason to view the potential for consciousness as morally salient. If that is true, however, several important implications follow: first, if the potential for consciousness is morally salient, this translates into actual and pressing obligations to patients with disorders of consciousness generally. Second, if the potential for consciousness is morally salient, this has implications that go beyond our obligations to patients with disorders of consciousness. Indeed, if the potential for consciousness is morally salient, this adds an important layer of complexity to the normative landscape, a layer we may not have sufficiently noticed before. (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)

The time is ripe for a greater interrogation of assumptions and commitments underlying an emerging common ground on the ethics of animal research as well on the 3 R (replacement, refinement, reduction) approach that parallels, and perhaps even further shapes, it. Recurring pressures to re-evaluate the moral status of some animals in research comes as much from within the relevant sciences as without. It seems incredible, in the light of what we now know of such animals as chimpanzees, to deny (...) that these animals are properly accorded high moral status. Barring the requirement that they be human, it is difficult to see what more animals such as chimpanzees would have to possess to acquire it. If the grounds for ascribing high moral status are to be non-arbitrary and responsive to our best knowledge of those individuals who possess the relevant features, we should expect that a sound ethical experimental science will periodically reassess the moral status of their research subjects as the relevant knowledge demands. We already can observe this reassessment as scientists committed to humane experimental science incorporate discoveries of enrichment tools and techniques into their housing and use of captive research animals. No less should this reassessment include a critical reflection on the possible elevation of moral status of certain research animals in light of what is discovered regarding their morally significant properties, characteristics or capacities, or so I will argue. To do anything short of this threatens the social and moral legitimacy of animal research. (shrink)