Fragments of Selves and The Importance of Emotionality: Ethicolegal Challenges in Assessing Capacities, Consent, and Communicating with MCS Patients and the Need for Guidelines

Mackenzie, Robin

doi:10.1080/21507740.2012.762067

Cited by 5 publications

(5 citation statements)

References 8 publications

(8 reference statements)

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“…Given that a proportion of behaviorally nonresponsive patients with severe brain injury can now communicate using neuroimaging, it is timely to ask whether they can participate in decisions regarding their own medical care. As we explain above, a number of authors have argued that decision making capacity cannot be assessed using neuroimaging [ 35 - 37 ]. We have recently argued that capacity assessment in such patients is—in principle at least—possible [ 45 ].…”

Section: Methodsmentioning

confidence: 99%

“…Critics point out—correctly we think—that before such questions are posed, patients’ decision making capacity must first be established. Given that neuroimaging communication only provides for “yes” or “no” responses to questions and patients cannot ask questions of their own, some have argued that it is not possible to evaluate decision making capacity [ 34 - 37 ]. If we cannot assess decision making capacity, it is suggested that the clinical utility of neuroimaging is undercut [ 34 - 37 ].…”

Section: Introductionmentioning

confidence: 99%

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Ethics of neuroimaging after serious brain injury

et al. 2014

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BackgroundPatient 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.Methods/DesignOur research program encompasses four projects and uses a mixed methods approach. Project 1 asks whether decision making capacity can be assessed in behaviorally nonresponsive patients. We will specify cognitive functions required for capacity and detail their assessment. Further, we will develop and pilot a series of scenarios and questions suitable for assessing capacity. Project 2 examines the ethics of welfare as a guide for neuroimaging. It grounds an obligation to explore patients’ interests, and we explore conceptual issues in the development of a quality of life instrument adapted for neuroimaging. Project 3 will use grounded theory interviews to document families’ understanding of the patient’s condition, expectations of neuroimaging, and the impact of the results of neuroimaging. Project 4 will provide an ethical analysis of neuroimaging to investigate residual cognitive function in comatose patients within days of serious brain injury.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Ethics of neuroimaging after serious brain injury

et al. 2014

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“…The MacCAT-T evaluation requires the articulation of sophisticated medical information, which current BCI technology does not allow. This, in turn, precipitates the cautionary appraisal of using of BCI neuroimaging paradigms in the clinical setting Fins and Schiff 2010;Mackenzie 2013;Rich 2013). Since the mental imagery paradigm restricts communication to "Yes" or "No" questions, how could one possibly begin to satisfy the conditions of decision-making capacity as currently understood by the medical community?…”

Section: Decision-making Capacity In the Clinical Settingmentioning

confidence: 95%

“…This argument proceeds from the presumed explanatory gap between evidence acquired from the mental imagery paradigm and the subjective, phenomenal states of conscious experience. Even though we may be able to extract autobiographical information from this patient group, it is argued that this does not permit inference of subjective emotionality (Mackenzie 2013) or self-consciousness (Rich 2013). It has also been suggested that these particular phenomenal states are central components of robust decision-making capacity.…”

Section: Limitationsmentioning

confidence: 98%

“…It has also been suggested that these particular phenomenal states are central components of robust decision-making capacity. Self-consciousness, for example, distinguishes humans from animals (Rich 2013), while emotionality allows one to exercise an overarching set of values (Mackenzie 2013). Since we cannot unequivocally confirm these phenomenal states with the mental imagery paradigm, it is reasoned that medical decision making should be precluded in this patient group.…”

Section: Limitationsmentioning

confidence: 99%

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