Observations on the Ethical and Social Aspects of Disorders of Consciousness

Abstract

Disorders of consciousness such as coma, the vegetative state (VS), and the minimally conscious state (MCS) are neurological syndromes that disturb awareness or both wakefulness and awareness. Medical advances and neurotechnology have increased the probability of survival for patients suffering from severe neurological injury. Although coma rarely persists more than a few weeks, some patients remain in a VS or a MCS for years. The care of chronically unconscious patients raises vexing medical, ethical, and social questions concerning diagnosis, prognosis, communication with family members, and decision making, including the withdrawal of life support. Our goals here are to update the principal controversies surrounding disorders of consciousness and to discuss how scientific developments and social factors have lead to changes in the ethical landscape of these disorders. ABSTRACT:The care of chronically unconscious patients raises vexing medical, ethical, and social questions concerning diagnosis, prognosis, communication with family members, and decision making, including the withdrawal of life support. We provide updates on major controversies surrounding disorders of consciousness. Issues such as withdrawal of artificial nutrition and hydration -which had been considered "settled" by many in the medical, legal and ethical communities -have resurfaced under the pressure of social groups and religious authorities. Some assumptions about the level of awareness and the prognosis of vegetative state and minimal conscious patients are questioned by advances in clinical care because of insights produced by neuroscience research techniques, particularly functional neuroimaging. Both the clinical and neuroscience dimensions of disorders of consciousness raise complex issues such as resource allocation and high levels of diagnostic inaccuracies (at least, for the vegetative state). We conclude by highlighting areas needing further research and collaboration.RÉSUMÉ: Observations sur les aspects éthiques et sociaux des troubles de la conscience. La prise en charge de patients inconscients chronique soulève des questions médicales, éthiques et sociales qui sont éprouvantes en ce qui concerne le diagnostic, le pronostic, la communication avec les membres de la famille et les décisions à prendre, dont le retrait des mesures de maintien en vie. Nous faisons une mise à jour des grandes controverses concernant les troubles de la conscience. Les controverses telles le retrait de la nutrition artificielle et de l'hydratation -qui étaient considérées comme résolues par plusieurs membres des communautés médicale, légale et éthique -ont refait surface sous la pression de groupes sociaux et d'autorités religieuses. Certaines notions au sujet du niveau de conscience et du pronostic de l'état végétatif et les patients minimalement conscients, qui étaient tenues pour acquises, sont remises en question à cause des progrès dans les soins cliniques découlant des techniques de recherche en neurosciences, particulièrement de l'imagerie fonc...

Severe Disorders of Consciousness: The Evolution of Care

“…In fact, for centuries, even the medical community had only a crude understanding of disorders of consciousness [9]. Recent scientific advances have provided the medical community with improved knowledge of how an injury to the brain results in a severe disorder of consciousness and the probabilities about whether the patient will recover [9].…”

“…An advance directive is a method for an individual to secure how his or her life will proceed in the event of incapacitation [33]. If a patient has not expressed autonomous preferences relevant to the situation, substitute judgment or the best interest standard applies for surrogate decision-making [9].…”

“…It is unlikely that an advance directive will designate a preference concerning participation in experimental proactive treatment, and a patient's wishes relevant to the complexities of treating a severe disorder of consciousness are often unknown [9]. Surrogate decision makers, most often the patient's family members, are left to assess whether the treatment is in the best interest of the patient [9].…”

“…Misdiagnosis interferes with the development of an accurate prognosis and informed decision-making by family members or other surrogates for appropriate treatment [8]. Moreover, prolonged care for patients with a disorder of consciousness, although not invasive, consumes significant human and financial resources [9]. Most patients with a disorder of consciousness remain severely disabled needing long-term care [10].…”

Pain Perception in Disorders of Consciousness: Neuroscience, Clinical Care, and Ethics in Dialogue

“…Future research could pay closer attention to this phenomenon in the context of disorders of consciousness a) to better understand the existence of variability between members 44 A. Demertzi et al of healthcare teams; b) to better characterise the impact of variability on family members and proxy decision makers; and c) to develop, if applicable, approaches to mitigate variability or its consequences through, for example, consensual chart notes and team discussion and communication [76].…”