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August 8, 2018
Letter to the Editor

Ethical, palliative, and policy considerations in disorders of consciousness

September 4, 2018 issue
91 (10) 471-475

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.

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Letters to the Editor
3 September 2018
Author response to Dr. Sethi
Joseph J. Fins, Internist-Ethicist | Weill-Cornell Medical Center
James L. Bernat, Neurologist-Ethicist | Geisel School of Medicine at Dartmouth

In response to Dr. Sethi's query about the care of patients with disorders of consciousness (DoC) in the context of scarce resources, [1] we believe that what is owed to conscious individuals with brain injury is as much a civil and disability rights issue as one of distributive justice. [2,3] At a minimum, physicians should identify covert consciousness. Turning to the question of resource allocation, the provision of proper rehabilitation may be cost effective. Because chronic care costs of DoC patients are fixed, improvements in functional status may decrease longitudinal costs. [4] Prospective cost-benefit analysis trials should be conducted to determine if investments in rehabilitation decreases reliance upon costly institutional care. Quality rehabilitation would thus fulfill our fiduciary obligations to individual patients while addressing broader societal questions about resource allocation.

  1. Fins JJ, Bernat JL. Ethical, palliative, and policy considerations in disorders of consciousness. Neurology Epub 2018 Aug 8.
  2. Fins JJ. Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness. New York: Cambridge University Press; 2015.
  3. Fins JJ and Wright MS. Rights language and disorders of consciousness: a call for advocacy. Brain Inj 2018;32:670-674.
  4. Fins JJ. Deep brain stimulation: calculating the true costs of surgical innovation. Virtual Mentor 2010;12:114-118.

For disclosures, please contact the editorial office at [email protected].

22 August 2018
Disorders of consciousness
Nitin K. Sethi, Associate Professor of Neurology | New York-Presbyterian Hospital, Weill Cornell Medical Center (New York, NY)

I read with deep interest Dr. Fins and Bernat's excellent discussion on the ethical, palliative, and health care policy considerations arising from the American Academy of Neurology Guideline on Disorders of Consciousness. [1,2] I share the reservation of the authors regarding the adoption of the term unresponsive wakefulness syndrome (UWS) in lieu of the vegetative state (VS). [3] The term UWS inadvertently risks conveying to the general public that some of these patients will improve and become better. While UWS may lack the pejorative connotation which the term VS carries, it gives little information about the varied pathophysiology, prognostic factors, and outcomes of these patients. UWS is an imprecise term that risks sugarcoating the inherently poor prognosis of the vast majority of these patients and sowing uncertainty in the minds of non-neurologist physicians, patients, and their families. The guidelines are also not practical for the vast number of neurologists practicing in low- and middle-income countries, and smaller hospitals in the United States which lack advanced imaging and neurophysiologic modalities needed to detect consciousness in these patients.

  1. Fins JJ, Bernat JL. Ethical, palliative, and policy considerations in disorders of consciousness. Neurology Epub 2018 Aug 8.
  2. Giacino JT, Katz DI, Schiff ND, et al. Practice guideline update recommendations summary: Disorders of consciousness: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Neurology Epub 2018 Aug 8.
  3. Laureys S, Celesia GG, Cohadon F, et al. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Med 2010;8:68.

For disclosures, please contact the editorial office at [email protected].

Information & Authors

Information

Published In

Neurology®
Volume 91Number 10September 4, 2018
Pages: 471-475
PubMed: 30089621

Publication History

Received: December 18, 2017
Accepted: March 7, 2018
Published online: August 8, 2018
Published in print: September 4, 2018

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Disclosure

J. Fins: receives royalties from Fins JJ. Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York: Cambridge University Press; 2015. J. Bernat: receives royalties from Bernat JL. Ethical Issues in Neurology, 3rd ed. Philadelphia: Lippincott Williams & Wilkins; 2008; and Bernat JL, Beresford HR (eds). Ethical and Legal Issues in Neurology. Handbook of Clinical Neurology, 3rd Series, Volume 118. Edinburgh: Elsevier; 2013. Go to Neurology.org/N for full disclosures.

Study Funding

No targeted funding reported.

Authors

Affiliations & Disclosures

Joseph J. Fins, MD, MACP
From the Division of Medical Ethics and Consortium for the Advanced Study of Brain Injury (J.J.F.), Weill Cornell Medical College, New York, NY; Solomon Center for Health Law & Policy (J.J.F.),Yale Law School, New Haven, CT; and Departments of Neurology and Medicine (J.L.B.), Geisel School of Medicine at Dartmouth, Hanover, NH.
Disclosure
Scientific Advisory Boards:
1.
1. Co-Chair, Advisory Board National Institute on Disability and Rehabilitation Research (NIDRR) Model System, Spaulding Rehabilitation Network, Harvard Medical School and Partners Health Care 2012-2017 and 2017-2022 2. Member, Data Safety Monitoring Board (DSMB) TBIMS Collaborative Grant. The Institute for Rehabilitation and Research Grant Number H133A130047: MEMRI-TBI-D Study. National Institute on Disability and Rehabilitation Research (NIDRR), US Department of Education. 2014-2019 3. Member, Law and Ethics Advisory Panel of the NFL ?Football Players Health Study at Harvard University.? Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. Harvard Law School. 2014-2016 4. Board of Directors, International Neuroethics Society, 2014- Board of Trustees, 5. Board of Directors, The Hastings Center, 2014-
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
All current appointments except as noted: Editorial Board, Cambridge Quarterly of Healthcare Ethics Editorial Board, Neuroethics (Springer) Editorial Board, Basic Bioethics Series, MIT Press Editorial Board, American Journal of Bioethics Neuroscience Associate Editor, Journal of Clinical Ethics Associate Editor, Journal of Alzheimer's Disease (until 2016) Editorial Board, The Pharos Alpha Omega Alpha Honor Medical Society Section Editor, En Persona EIDON (Spain) International Editorial Board, Advances in Neuroethics Book Series, Springer Press Editorial Board, The Hastings Center Report Special Feature Editor for Ethics, The Journal of Head Trauma Rehabilitation
Patents:
1.
NONE
Publishing Royalties:
1.
Fins JJ. Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. Cambridge U Press, 2015 Fins JJ. A Palliative Ethic of Care: Clinical Wisdom at Life's End. Sudbury MA, Jones and Bartlett Publications, 2006.
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
Board of Trustees, Hastings Center; Trustee Emeritus, Wesleyan University; Board, International Neuroethics Society
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
Co-Principal Investigator with Ellen Meltzer, M.D. The Arnold P. Gold Foundation ?Communicating with Surrogates: An Educational Initiative to Foster Humanism and Patient- Centered Care ? When Patients can no longer speak for themselves.? 2015-2016 Co-Investigator, Nicholas D. Schiff, M.D., PI. ?Central thalamic stimulation for traumatic brain injury? President?s Brain Initiative 9/30/15-8/31/20 [ND NIH-NINDS 1UH3 NS095554-01] Co-director, Ethics and regulatory Core NIH Clinical & Translational Science Center UL1-RR024966 Weill Cornell Medical College Grant 2013-2018 Supplement PI, ?Giving Voice to Neuroethics: Narrative Perspectives of Subjects and Families in the Central Thalamic Stimulation for Traumatic Brain Injury Study.? NIH [1UH3 NS095554-01] 2016-2017 Co-Investigator, Matthew McCarthy, M.D., PI ?A Pilot Study to Improve the Bedside Teaching of Clinical Ethics: A Novel Collaboration Between Hospital Medicine and Medical Ethics? Weill Cornell Division of General Internal Medicine Institute for Primary Care Innovation. 2017-2018 Principal Investigator, ?When Neuroscience meets Disability Rights Law: An Ethical Mandate to Address the Clinical Needs of Patients with Severe Brain Injury.? The Greenwall Foundation, 2018
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
Jerold B. Katz Foundation
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
James L. Bernat, MD
From the Division of Medical Ethics and Consortium for the Advanced Study of Brain Injury (J.J.F.), Weill Cornell Medical College, New York, NY; Solomon Center for Health Law & Policy (J.J.F.),Yale Law School, New Haven, CT; and Departments of Neurology and Medicine (J.L.B.), Geisel School of Medicine at Dartmouth, Hanover, NH.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Editorial Board: Neurocritical Care: 2002-present (no compensation) Editorial Board: Neurology Today: 2001-2017 (no compensation) Editorial Board: The Physician's Index for Ethics and Medicine: 2011-present (compensation) Editorial Board: Multiple Sclerosis and Related Diseases: 2011-present (no compensation) Editorial Board: Neurology Clinical Practice (no compensation)
Patents:
1.
NONE
Publishing Royalties:
1.
Ethical and Legal Issues in Neurology. Elsevier, 2013 Ethical Issues in Neuorology, 3rd ed. Lippincott Williams & Wilkins, 2008. Palliative Care in Neurology. Oxford University Press, 2004.
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NIH Director, Ethics Core of SYNERGY: The Dartmouth Clinical and Translational Science Institute. National Center for Advancing Translational Sciences (NIH NCATS) UL1TR001086. (10% salary provision)
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE

Notes

Correspondence Dr. Bernat [email protected]
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.

Author Contributions

J.J.F.: first draft of manuscript. J.J.F. and J.L.B.: study concept and design, acquisition of data, analysis and interpretation, critical revisions of the manuscript for important intellectual content.

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