Understanding the decision-making environment for people in minimally conscious state

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent communication. As medical expertise develops and technology advances, it is likely that more and more patients with disorders of consciousness will be recognized as being in the minimally conscious state, with minimal to no ability to participate in medical decision-making. Here we provide guidance useful for surrogates and medical professionals at any medical decision point, not merely for end-of-life decision-making. We first consider the legal landscape: precedent abounds regarding unconscious patients in coma or the vegetative state/Unresponsive Wakefulness Syndrome (VS/UWS), but there is little legal precedent involving patients in the minimally conscious state. Next we consider surrogates’ ethical authority to make medical decisions on behalf of patients with disorders of consciousness. In everyday medical decision-making, surrogates generally encounter few, if any, restrictions so long as they adhere to an idealized hierarchy of decision-making standards designed to honor patient autonomy as much as possible while ceding to the reality of what may or may not be known about a patient’s wishes. We conclude by proposing an ethically informed, practical guide for surrogate decision-making on behalf of patients in the minimally conscious state.

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Feelings and Desires Are Not the Same as Treatment Preferences: Why the Health Care Decision-Making Framework Applied to Adolescents Should Not Be Applied to Persons in the Minimally Conscious State

AJOB Neuroscience ◽

10.1080/21507740.2018.1428239 ◽

2018 ◽

Vol 9 (1) ◽

pp. 69-71 ◽

Cited By ~ 1

Author(s):

Matthé Scholten ◽

Jochen Vollmann

Keyword(s):

Health Care ◽

Decision Making ◽

Minimally Conscious State ◽

Conscious State ◽

Treatment Preferences ◽

Health Care Decision ◽

Decision Making Framework ◽

Minimally Conscious ◽

Care Decision

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The Ethics of Uncertainty

10.1093/med/9780190943646.003.0006 ◽

2021 ◽

pp. 118-168

Author(s):

L. Syd M Johnson

Keyword(s):

Decision Making ◽

Ethical Decision ◽

Ethical Decision Making ◽

Minimally Conscious State ◽

Conscious State ◽

Decision Makers ◽

Legal Cases ◽

Respect For Autonomy ◽

Ideal World ◽

Minimally Conscious

The ethics of uncertainty is an approach to ethical decision-making under conditions of uncertainty. Two legal cases involving patients in the minimally conscious state—Robert Wendland, and a U.K. patient known as M—illustrate the difficulty and complexity of making decisions when so much is unknown about the experiences and minds of these patients. The ethics of uncertainty refocuses ethical enquiry concerning patients with disorders of consciousness, placing less emphasis on their contested personhood and more on inductive risk, on respect for autonomy, and on justice, especially epistemic justice, and the duties of privileged epistemic agents like physicians and medical staff. It encourages an expansive All Things Considered approach to ethical decision-making where the goal is not to arrive at clean, consistent, abstract, ideal decisions for an ideal world, but to enable decision makers facing complexity and uncertainty to fulfill their duties as moral and epistemic agents.

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THE MINIMALLY CONSCIOUS STATE IN CHILDREN

Neuropediatrics ◽

10.1055/s-2006-945996 ◽

2006 ◽

Vol 37 (S 1) ◽

Author(s):

S Ashwal

Keyword(s):

Minimally Conscious State ◽

Conscious State ◽

Minimally Conscious

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Faculty Opinions recommendation of Possible axonal regrowth in late recovery from the minimally conscious state.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.14653.489011 ◽

2006 ◽

Author(s):

Philippe Azouvi

Keyword(s):

Minimally Conscious State ◽

Conscious State ◽

Axonal Regrowth ◽

Late Recovery ◽

Minimally Conscious

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Disabilities and Well-Being

The Oxford Handbook of Philosophy and Disability ◽

10.1093/oxfordhb/9780190622879.013.11 ◽

2019 ◽

pp. 121-137

Author(s):

Joshua Shepherd

Keyword(s):

Broad Class ◽

Minimally Conscious State ◽

Well Being ◽

Conscious State ◽

Minimally Conscious

This chapter argues for a normative distinction between disabilities that are inherently negative with respect to well-being and disabilities that are inherently neutral. After clarifying terms, the author discusses recent arguments according to which possession of a disability is inherently neutral with respect to well-being. He notes that although these arguments are compelling, they are only intended to cover certain disabilities and, in fact, that there exists a broad class regarding which they do not apply. He then discusses two problem cases: locked-in syndrome and the minimally conscious state, and explains why these are cases in which possession of these disabilities makes one worse off overall. He argues that disabilities that significantly impair control over one’s situation tend to be inherently negative with respect to well-being; other disabilities do not. The upshot is that we must draw an important normative distinction between disabilities that undermine this kind of control and disabilities that do not.

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Bedside assessment of residual functional activation in minimally conscious state using NIRS and general linear models

2013 35th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC) ◽

10.1109/embc.2013.6610309 ◽

2013 ◽

Cited By ~ 1

Author(s):

Erika Molteni ◽

Filippo Arrigoni ◽

Alessandra Bardoni ◽

Sara Galbiati ◽

Federica Villa ◽

...

Keyword(s):

Linear Models ◽

Minimally Conscious State ◽

Conscious State ◽

General Linear ◽

General Linear Models ◽

Residual Functional ◽

Minimally Conscious

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When, How, and to What Extent Are Individuals with Unresponsive Wakefulness Syndrome Able to Progress? Neurobehavioral Progress

Brain Sciences ◽

10.3390/brainsci11010126 ◽

2021 ◽

Vol 11 (1) ◽

pp. 126

Author(s):

Enrique Noé ◽

Joan Ferri ◽

José Olaya ◽

María Dolores Navarro ◽

Myrtha O’Valle ◽

...

Keyword(s):

Clinical Decision Making ◽

Minimally Conscious State ◽

Clinical Decision ◽

Total Sample ◽

Conscious State ◽

Accurate Estimation ◽

Functional Communication ◽

Unresponsive Wakefulness Syndrome ◽

Object Use ◽

Minimally Conscious

Accurate estimation of the neurobehavioral progress of patients with unresponsive wakefulness syndrome (UWS) is essential to anticipate their most likely clinical course and guide clinical decision making. Although different studies have described this progress and possible predictors of neurobehavioral improvement in these patients, they have methodological limitations that could restrict the validity and generalization of the results. This study investigates the neurobehavioral progress of 100 patients with UWS consecutively admitted to a neurorehabilitation center using systematic weekly assessments based on standardized measures, and the prognostic factors of changes in their neurobehavioral condition. Our results showed that, during the analyzed period, 34% of the patients were able to progress from UWS to minimally conscious state (MCS), 12% of the total sample (near one third from those who progressed to MCS) were able to emerge from MCS, and 10% of the patients died. Transition to MCS was mostly denoted by visual signs, which appeared either alone or in combination with motor signs, and was predicted by etiology and the score on the Coma Recovery Scale-Revised at admission with an accuracy of 75%. Emergence from MCS was denoted in the same proportion by functional communication and object use. Predictive models of emergence from MCS and mortality were not valid and the identified predictors could not be accounted for.

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Pain Perception in Disorder of Consciousness: A Scoping Review on Current Knowledge, Clinical Applications, and Future Perspective

Brain Sciences ◽

10.3390/brainsci11050665 ◽

2021 ◽

Vol 11 (5) ◽

pp. 665

Author(s):

Rocco Salvatore Calabrò ◽

Loris Pignolo ◽

Claudia Müller-Eising ◽

Antonino Naro

Keyword(s):

Functional Connectivity ◽

Scoping Review ◽

Pain Perception ◽

Current Knowledge ◽

Conscious Experience ◽

Minimally Conscious State ◽

Conscious State ◽

Future Perspective ◽

Disorder Of Consciousness ◽

Minimally Conscious

Pain perception in individuals with prolonged disorders of consciousness (PDOC) is still a matter of debate. Advanced neuroimaging studies suggest some cortical activations even in patients with unresponsive wakefulness syndrome (UWS) compared to those with a minimally conscious state (MCS). Therefore, pain perception has to be considered even in individuals with UWS. However, advanced neuroimaging assessment can be challenging to conduct, and its findings are sometimes difficult to be interpreted. Conversely, multichannel electroencephalography (EEG) and laser-evoked potentials (LEPs) can be carried out quickly and are more adaptable to the clinical needs. In this scoping review, we dealt with the neurophysiological basis underpinning pain in PDOC, pointing out how pain perception assessment in these individuals might help in reducing the misdiagnosis rate. The available literature data suggest that patients with UWS show a more severe functional connectivity breakdown among the pain-related brain areas compared to individuals in MCS, pointing out that pain perception increases with the level of consciousness. However, there are noteworthy exceptions, because some UWS patients show pain-related cortical activations that partially overlap those observed in MCS individuals. This suggests that some patients with UWS may have residual brain functional connectivity supporting the somatosensory, affective, and cognitive aspects of pain processing (i.e., a conscious experience of the unpleasantness of pain), rather than only being able to show autonomic responses to potentially harmful stimuli. Therefore, the significance of the neurophysiological approach to pain perception in PDOC seems to be clear, and despite some methodological caveats (including intensity of stimulation, multimodal paradigms, and active vs. passive stimulation protocols), remain to be solved. To summarize, an accurate clinical and neurophysiological assessment should always be performed for a better understanding of pain perception neurophysiological underpinnings, a more precise differential diagnosis at the level of individual cases as well as group comparisons, and patient-tailored management.

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