How contextual and relational aspects shape the perspective of healthcare providers on decision making for patients with disorders of consciousness: a qualitative interview study.

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep-wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions remain poorly documented. We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs.

Observations on the ethical and social aspects of disorders of consciousness.

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.