The ambiguous mystery of consciousness that relates our subjective phenomenal experiences to an objective reality has puzzled the human mind since antiquity. From as early as the ancient Greeks to the 21stcentury, the concept of consciousness has generated numerous inquiries and theoretical propositions in the divergent fields of philosophy and neuroscience [1]. Alas, the concept of consciousness is ill-defined across time and culture given the juxtaposing nature of the term in both the metaphysical and scientific sense. In the philosophical text A Treatise of Human Nature, the Scottish philosopher David Hume described consciousness as “nothing but a bundle or collection of different perceptions, which succeed each other with an inconceivable rapidity, and are in perpetual flux and movement” [2]. In his psychoanalytic theory, the Swiss psychiatrist Carl Jung characterized consciousness as “the function or activity which maintains the relation of psychic contents to the ego” [3]. The French cognitive neuroscientist Stanislas Dehaene explained consciousness in his Global Neuronal Workspace Theory as a “global information broadcasting within the cortex [that] arises from a neuronal network whose raison d’être is the massive sharing of pertinent information throughout the brain” [1, 4]. These definitions, among many others, are nevertheless insufficient to explain consciousness if isolated on their own unless they are synthesized into a continuum of interwoven ideas that can account for the heterogeneous nature of consciousness [1].
Despite the dispute among historical and contemporary thinkers on the questions of consciousness and its neural correlates, the essence of each and every argument is fundamentally rooted in either the “easy” or “hard” problems of consciousness, as formulated by the Australian philosopher David Chalmers [5]. The “easy” problem seeks to identify mechanistic explanations for the various cognitive phenomena (e.g., perception, learning, behavior) resulting from the underlying biophysical processes of the brain. On the other hand, the “hard” problem accounts for why there is an association between such phenomena and consciousness [6]. However, the objective of the discussion herein is not to individually distinguish and comprehensively assess the myriad theories of consciousness. Instead, the concept of consciousness and its distinguishing features are considered in the context of clinical patients who suffer from disorders of consciousness (DOC), in which altered levels of consciousness has presented a neuroethical challenge in evaluating the life and death of DOC patients, particularly when aspects of their inherently intrinsic values are pathologically compromised to render them in a state of extreme vulnerability [7].
In the clinical context, consciousness is precisely conceptualized according to the Aristotelian formulation of wakefulness and awareness, wherein the state of consciousness is evaluated on the basis of arousal (e.g., eye-opening) and the ability to react to external stimuli (e.g., visual tracking), respectively [1]. Specifically, the elements of wakefulness and awareness encapsulate the ensuing features as the core indicators of consciousness: distinct sensory modalities, spatiotemporal framing, intentionality, dynamicism, short-term stabilization, and an integration of all components of the conscious experience [8]. The extent of the two said elements, however, varies according to the neurophysiological conditions of the DOC patient, which factors in variables such as brainstem reflexes, functional communication, language, and fMRI/EEG evidence of association cortex responses. Depending on the results of these testing variables that relies on the use of dichotomic binary communication paradigms (i.e., yes/no or on/off), the patients’ condition can thus be diagnosed, which includes, inter alia, coma, persistent vegetative state (PVS), unresponsive wakefulness syndrome (UWS), minimally conscious state (MCS), post-traumatic confusional state (PTCS), covert cortical processing (CCP), and locked-in syndrome (LIS) [1].
To begin the discussion on the neuroethics of patients with DOC, the controversial case of Terri Schiavo and her legacy ought to be taken into reflection [9]. In 1990, Schiavo was left in a vegetative state after suffering from a cardiac arrest, a symptom of hypokalemia induced by her eating disorder. From that point onward, Schiavo was in an eye-open state but was unaware of herself and her environment (a dissociation of awareness from wakefulness) for the next 15 years of her life until her death in 2005. Schiavo’s neurologist initially concluded that her condition was irreversible and that she was no longer capable of having emotions, which caused her spouse to request the removal of her feeding tube and any life-sustaining treatment. Schiavo’s parents were diametrically opposed to this decision because they held onto the belief that there was a possibility for neurological recovery and that Schiavo was still a sentient being. Both parties claimed to act in Schiavo’s best interest as the justified surrogate decision-maker, yet their familial conflict had ultimately gone to litigation, in which the verdict ruled in favor of Schiavo’s spouse. Upon close examination, the tragic outcomes of Schiavo’s case underscores several ethical violations in the medical, legal, and social realms in relation to end-of-life decision-making and the exercise of autonomy.
Recent developments in functional neuroimaging and neuroelectrophysiological methods have changed the ways through which DOC patients are diagnosed, prognosed, and treated. The most prominent revelation from such advancement is the high rates of misdiagnosis and inaccurate prognostication among DOC patients by clinicians, wherein cases of patients who are originally diagnosed as PVS are in reality reclassified as MCS upon neuroimaging procedures. In contrast to PVS patients, MCS patients are found to display both wakefulness and behavioral signs of rudimentary awareness. Ultimately, such misdiagnosis can be attributed to several factors such as sensorimotor impairments in the patient, or confirmation bias in the clinician. In turn, this creates epistemic risks because of limited certainty in DOC nosology [1]. Notwithstanding the promising potential of neuroimaging and similar neurotechnologies (e.g., brain-computer interfaces), the medical practice of neuroimaging itself poses an increasing degree of ethical tension due to the lack of informed consent from the DOC patient themselves as a requirement prior to undergoing neuroimaging. This is a challenge that is often highlighted in neuroimaging-driven DOC research, compounded with the disclosure of experimental results to the patient themselves or their family, which are deemed as imperative to mitigate miscommunications in patient-clinician relationships [10, 11].
Given that cognitive biases are a salient class of factors contributing to misdiagnoses in DOC, emphasis ought to be placed on the prevalence of ableist bias in influencing erroneous, monotonic judgments with respect to the neurological outcomes of DOC patients. Note that this particular issue is a byproduct of the disability paradox—a phenomenon that occurs when individuals with disabilities claim to experience a good quality of life despite the fact that many external observers perceive them as in a state of suffering [12]. As a result, prejudiced assumptions create a discrepancy between the actual wishes of the DOC patient and what others perceive as acceptable; oftentimes, the latter revolves around the belief that being in an unconscious state is worse than death [13]. Though in the event that the preference of the DOC patient is well-documented in regard to the best course of action to take when the patient is nonverbal or behaviorally disabled, the judgment of the clinician will not be a matter of importance. A study by Patrick et al., however, discovered that there exists a psychological discordance among DOC patients in which patients who initially expressed the belief that life is not worth living in such conditions still wished to undergo life-sustaining interventions. Hence, the implications of the ableist notion that “it is better to be dead than disabled” is not meant to be taken in the literal sense [14]. Fortunately, functional neuroimaging is indeed capable of unveiling residual consciousness and psychological continuity even if the apparent behavioral characteristics of the DOC patient suggests otherwise, as shown in a neuroimaging study by Owen et al. [15]. This scenario presents the common ethical problem in regard to the premature or uncertain termination of life-sustaining care for DOC patients based on the decision of moral agents such as a surrogate (e.g., the patient’s kin) or a third party (e.g., government), which may be ill-informed or morally absolutist at times [16].
Thus, upon careful consideration of such scenarios and the case of Schiavo, is it still morally permissible to withdraw artificial life support from DOC patients in the absence of informed consent or advance directives from the will of the patient themselves? While it is reasonable to argue that it is futile to continue maintaining the life of DOC patients given the lack of expected utility, this justification is heavily rooted in a deep sense of therapeutic nihilism—an aporetic belief toward the successful curing of a disease—that gave rise to a pessimistic outlook on the assessment of predicting the likelihood of meaningful recovery among DOC patients and their right to life-sustaining treatment from the view of clinicians. [13]. Evidently, with the patients’ best interest at stake, the ways through which patient outcomes are perceived under the lens of undue pessimism coupled with a saturated sense of self-fulfilling prophecy illustrate the negligence of DOC patients’ potential to recover and regain functional independence in the long-run. After all, behavioral recovery typically occurs beyond the minimum standard timeframe of 28 days during post-brain injury, as suggested in an observational study conducted by Giacino et al. on DOC patients with PVS/MCS [17]. Such empirical evidence, therefore, rejects the futility thesis in DOC care and underscores the risk of superimposing the beliefs and values of the observers onto the patient. Integrating prudence and fiduciary responsibility into the ethos of palliative care for DOC patients are thus relevant in the clear discernment of consciousness from the nonconscious state [1].
In recognizing the effects of pessimistic attitudes on clinical decision-making, the consequentialist argument of cost and health utilities in treating DOC patients is another antithetical statement toward preserving the life of DOC patients. Indeed, in some outlying cases, extensive care for patients with DOC may not necessarily result in favorable outcomes, irrespective of the duration and intensity of the treatments that are provided. In such circumstances, the harm-benefit analysis yielded problems such as significant emotional distress and financial losses for the families of DOC patients, as well as failing to protect the dignity and comfort of DOC patients as a consequence of undergoing continuous painful treatments that may seem to have minimal benefits, compounded with the fact that these resources are scarce in most instances. Additional opportunity costs that may incur on the families of DOC patients include renouncing education or employment opportunities to act as caregivers for their beloved [1]. Hence, the continuation of sustaining the life of DOC patients under such criteria cannot possibly maximize the cost and health utilities of the patient and their family.
To balance these potential harms, however, it ought to be noted that the proclivity for utility maximization is in conflict with the contractual obligation of the clinician in improving the care of DOC patients without resorting to abandonment and risk aversion and guaranteeing them the value of human life. The life of a human being and the act of protecting its existential stature is what translates to having dignity in lieu of death, such that the phrase “dying with dignity” has been diluted in meaning and is contradictory in this interpretation of dignity [14, 15]. Furthermore, to withhold distributive justice in the clinical setting to align with democratic principles, resources ought to be allocated in a fair, unbiased manner to ensure equity in access to appropriate treatments for DOC patients that are also affordable for all to offset the inclination among clinicians to allocate rehabilitative resources to patients with a higher chance of recovery than those with a poor course of prognosis [13]. Therefore, it is a necessary risk to provide life-sustaining treatment even to DOC patients with a low likelihood of recovery and survival, for doing so will lead to further advancements in improving DOC care and make medical progress in overcoming technical limitations and understanding the complexity of DOC for posterity.
On the subject of personhood, however, many observers who are under the influence of therapeutic nihilism tend to perceive DOC patients as an empty vessel that is devoid of personhood given their loss of cognitive capacities, which are claimed to be indispensable for consciousness to be constituted. Such perceptions are merely natural considering the hypercognitive nature of postmodern Western societies and cultures, wherein the deprivation of certain capacities that the majority deems as important has separated those who are unworthy of care and attention from those who are worthy. Nevertheless, regardless of whether or not personhood is ascribed to patients with DOC, the worth of a human life should not be evaluated on the basis of the unlikeness of the human mind, for all persons ought to be respected in the name of equality and solidarity as fundamental moral sentiments to maintain a just legal and healthcare system, especially toward those who are in their most vulnerable state [14, 18].
A reinforcing assertion on defending the continual existence of personhood claims that consciousness is not an essential prerequisite for the acknowledgement of one’s identity, hence the intrinsic values of DOC patients are retained to qualify them as individual persons in spite of their incompetence to communicate or act in accordance with their freedom of will [19]. Even more so, the implementation of disability rights perspectives into the social analysis and lawful policymaking surrounding DOC patients proclaims that individual identities are not singularly characterized by working cognitions and emotions. As opposed to basing the identity of DOC patients on their medical conditions, their identity is constructed around the notion that their disabling attributes as a result of DOC is an inalienable component of their overall identity. Indeed, disability is only transparent when life-sustaining treatments are denied to DOC patients as a reflection of the institutional failure to both accommodate those who are in urgent need of care and withhold constitutional and federal civil rights protections, specifically in regard to the Americans with Disabilities Act (ADA) that ought to be applied universally [20, 21, 22].
Even in the depths of inescapable nihilism in managing DOC care, ethics must prevail in remembrance of the principle of in dubio pro vita—"when in doubt, favor life” [23]. In considering the complex diagnostic and therapeutic difficulties in conjunction with uncertain prognostications for patients with DOC, the health prospects of the patient are at a constant risk due to the epistemological interstice between current understandings of consciousness and the behavioral conditions of DOC patients [10]. Therefore, to overcome the existing state of DOC care that is characterized by issues of informed consent, cognitive biases, futility-inspired pessimism, unjust resource allocations, negligence of personhood, and various unknown risk factors, it demands the deployment of effective medical and legal protocols and ethical guidelines for pragmatic clinical decision-making. As such, the traditional beliefs in the practices of medicine and law must be challenged to preserve the life of DOC patients alongside their personal identity, dignity, freedom of will, and most crucially, the right to live at the heart of humanity.
References
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