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  • Cited by 13
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    This article has been cited by the following publications. This list is generated based on data provided by CrossRef.

    Fins, Joseph J. 2016. The Neurology of Conciousness.

    Brogan, Michael E. and Provencio, J. Javier 2014. Spectrum of catastrophic brain injury: Coma and related disorders of consciousness. Journal of Critical Care, Vol. 29, Issue. 4, p. 679.

    Giacino, Joseph T. Fins, Joseph J. Laureys, Steven and Schiff, Nicholas D. 2014. Disorders of consciousness after acquired brain injury: the state of the science. Nature Reviews Neurology, Vol. 10, Issue. 2, p. 99.

    Bruno, Marie-Aurélie Laureys, Steven and Demertzi, Athena 2013. Ethical and Legal Issues in Neurology.

    Fins, Joseph J. 2013. Disorders of Consciousness and Disordered Care: Families, Caregivers, and Narratives of Necessity. Archives of Physical Medicine and Rehabilitation, Vol. 94, Issue. 10, p. 1934.

    Fins, Joseph J. Hammond, Cassing Tarsney, Preya S. Panero, Alberto Martinez, Jasmine and Kirschner, Kristi L. 2013. Surrogate Decision Making in the Case of a Pregnant Woman Newly Disabled With Brain Injury. PM&R, Vol. 5, Issue. 1, p. 57.

    Giacino, Joseph Fins, Joseph J. Machado, Andre and Schiff, Nicholas D. 2012. Central Thalamic Deep Brain Stimulation to Promote Recovery from Chronic Posttraumatic Minimally Conscious State: Challenges and Opportunities. Neuromodulation: Technology at the Neural Interface, Vol. 15, Issue. 4, p. 339.

    Fins, Joseph J. 2010. Deep Brain Stimulation, Free Markets and the Scientific Commons: Is It time to Revisit the Bayh-Dole Act of 1980?. Neuromodulation: Technology at the Neural Interface, Vol. 13, Issue. 3, p. 153.

    Demertzi, A. Schnakers, C. Ledoux, D. Chatelle, C. Bruno, M.-A. Vanhaudenhuyse, A. Boly, M. Moonen, G. and Laureys, S. 2009. Coma Science: Clinical and Ethical Implications.

    Fins, Joseph J. 2009. Being Conscious of Their Burden. Annals of the New York Academy of Sciences, Vol. 1157, Issue. 1, p. 131.

    Fins, Joseph J. 2009. Coma Science: Clinical and Ethical Implications.

    Fins, Joseph J. 2009. The Neurology of Consciousness.

    Kwasnica, Christina Brown, Allen W. Elovic, Elie P. Kothari, Sunil and Flanagan, Steven R. 2008. Congenital and Acquired Brain Injury. 3. Spectrum of the Acquired Brain Injury Population. Archives of Physical Medicine and Rehabilitation, Vol. 89, Issue. 3, p. S15.


Affirming the right to care, preserving the right to die: Disorders of consciousness and neuroethics after Schiavo

  • JOSEPH J. FINS (a1)
  • DOI:
  • Published online: 01 August 2006

In this article, I attempt to untangle some of the cultural, philosophical, and ethical currents that informed the Schiavo case. My objective is to better apprehend what the Schiavo case means for end-of-life care in general and to assert that our discourse about the ethical issues attendant to brain injury will be impoverished if we limit our discussions about disorders of consciousness solely to the vegetative state. If we ignore emerging developments in neuroscience that are helping to elucidate the nature of these disorders and fail to broaden the conversation about brain injury, beyond the unmitigated futility of the permanent vegetative state, we will imperil others who might improve and be helped. Through such efforts we can help mitigate the tragedy of the Schiavo case and overcome the rhetoric that marked the national discourse in March 2005. Once the complexity of disorders of consciousness is appreciated, rhetorical statements about a right to die or a right to life are exposed as being incompatible with the challenge of providing care to such patients. This is especially true as neuroscience brings greater diagnostic refinement to their assessment and management, a topic addressed in this article, which specifically focuses on the clinical and ethical implications of the recently described minimally conscious state. Instead of staking out ideological positions that do not meet the needs of patients or families, we should strive to both preserve the right to die for those who are beyond hope while affirming the right to care to those who might benefit from coming advances in neuroscience. If we can achieve that delicate balance, we will be able to transcend the partisan debate that shrouded the life and death of Theresa Marie Schiavo and begin to articulate a palliative neuroethics of care for those touched by severe brain injury and disorders of consciousness.

Corresponding author
Corresponding author: Joseph J. Fins, M.D., F.A.C.P., Division of Medical Ethics, New York Presbyterian-Weill Cornell Medical Center, 435 East 70th Street, Suite 4-J, New York, NY 10021, USA. E-mail:
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Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
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