Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques (...) are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict recovery, and this information would help families and health providers. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to “yes” or “no” answers, and cost. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. The objectives of this research are to: (1) create an approach to capacity assessment using neuroimaging; (2) develop an ethics of welfare framework to guide considerations of quality of life; (3) explore the impact of neuroimaging on families; and, (4) analyze the ethics of the use of neuroimaging in comatose patients. (shrink)

:Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking—including decisions about life-sustaining treatment—even though the prognostic value (...) of covert consciousness is currently unknown. This paper provides guidance to clinicians and families in incorporating individual research results of unknown prognostic value into surrogate decisionmaking, focusing on three potential issues: Surrogate decisionmakers may misinterpret results; Results may create false hope about the prospects of recovery; There may be disagreement about the meaningfulness or relevance of results, and appropriateness of continued care. (shrink)

Disorders of consciousness continue to profoundly challenge both families and medical professionals. Once a brain-injured patient has been stabilized, questions turn to the prospect of recovery. However, what “recovery” means in the context of patients with prolonged DOC is not always clear. Failure to recognize potential differences of interpretation—and the assumptions about the relationship between health and well-being that underlie these differences—can inhibit communication between surrogate decisionmakers and a patient’s clinical team, and make it difficult to establish the goals of (...) care. The authors examine the relationship between health and well-being as it pertains to patients with prolonged DOC. They argue that changes in awareness or other function should not be equated to changes in well-being, in the absence of a clear understanding of the constituents of well-being for that particular patient. The authors further maintain that a comprehensive conception of recovery for patients with prolonged DOC should incorporate aspects of both experienced well-being and evaluative well-being. (shrink)

A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state, demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life. We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a (...) clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery. (shrink)

A general obligation to make aggregate research results available to participants has been widely supported in the bioethics literature. However, dementia research presents several challenges to this perspective, particularly because of the fear associated with developing dementia. The authors argue that considerations of respect for persons, beneficence, and justice fail to justify an obligation to make aggregate research results available to participants in dementia research. Nevertheless, there are positive reasons in favor of making aggregate research results available; when the decision (...) is made to do so, it is critical that a clear strategy for communicating results is developed, including what support will be provided to participants receiving aggregate research results. (shrink)