Abstract
This essay complements the scientific and practice scope of the American Academy of
Neurology Guideline on Disorders of Consciousness by providing a discussion of the
ethical, palliative, and policy aspects of the management of this group of patients.
We endorse the renaming of “permanent” vegetative state to “chronic” vegetative state
given the increased frequency of reports of late improvements but suggest that further
refinement of this class of patients is necessary to distinguish late recoveries from
patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic
clarity and prognostic refinement is necessary to preclude overestimation of low probability
events. We argue that the new descriptor “unaware wakefulness syndrome” is no clearer
than “vegetative state” in expressing the mismatch between apparent behavioral unawareness
when patients have covert consciousness or cognitive motor dissociation. We advocate
routine universal pain precautions as an important element of neuropalliative care
for these patients given the risk of covert consciousness. In medical decision-making,
we endorse the use of advance directives and the importance of clear and understandable
communication with surrogates. We show the value of incorporating a learning health
care system so as to promote therapeutic innovation. We support the Guideline’s high
standard for rehabilitation for these patients but note that those systems of care
are neither widely available nor affordable. Finally, we applaud the Guideline authors
for this outstanding exemplar of engaged scholarship in the service of a frequently
neglected group of brain-injured patients.
List of abbreviations:
CMD (cognitive–motor dissociation), DoC (disorders of consciousness), MCS (minimally conscious state), MSTF (Multi-Society Task Force on PVS), VS (vegetative state)To read this article in full you will need to make a payment
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Article Info
Publication History
Published online: August 08, 2018
Footnotes
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Republished with permission from Neurology®. Neurology first published the paper on August 8, 2018.
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© 2018 American Academy of Neurology
