Skip to main content
    • Aa
    • Aa

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

  • JOSEPH J. FINS (a1)

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:
Linked references
Hide All

This list contains references from the content that can be linked to their source. For a full set of references and notes please see the PDF or HTML where available.

Andrews, K., Murphy, L., Munday, R., et al. (1996). Misdiagnosis of the vegetative state: Retrospective study in a rehabilitation unit. British Medical Journal, 313(7048), 1316.

Annas, G. (1990). Nancy Cruzan in China. Hastings Center Report, 20(5), 3941.

Annas, G.J. (2005). “Culture of Life” politics at the bedside—The case of Terri Schiavo. New England Journal of Medicine, 352(16), 17101715.

Banja, J. (1999). Patient advocacy at risk: Ethical, legal and political dimensions of adverse reimbursement practices in brain injury rehabilitation in the U.S. Brain Injury, 13(10), 745758.

Beecher, H.K. (1968). Ethical problems created by the hopelessly unconscious patient. New England Journal of Medicine, 278(26), 14251430.

Breitbart, W. (2002). Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer, 10(4), 272280.

Cassell, E.J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306(11), 639645.

Childs, N.L., Mercer, W.N., & Childs, H.W. (1993). Accuracy of diagnosis of persistent vegetative state. Neurology, 43(8), 14651467.

Committee on Child Health Financing. (2005). Model contractual language for medical necessity for children. Pediatrics, 116(1), 261262.

Fins, J.J. (2000). A proposed ethical framework for interventional cognitive neuroscience: A consideration of deep brain stimulation in impaired consciousness. Neurological Research, 22(3), 273278.

Fins, J.J. (2002). When the prognosis leads to indifference. Journal of Palliative Medicine, 5(4), 571573.

Fins, J.J. (2003). Constructing an ethical stereotaxy for severe brain injury: Balancing risks, benefits and access. Nature Reviews Neuroscience, 4(4), 323327.

Fins, J.J. (2005a). Clinical pragmatism and the care of brain injured patients: Towards a palliative neuroethics for disorders of consciousness. Progress in Brain Research, 150, 565582.

Fins, J.J. (2005e). Rethinking disorders of consciousness: New research and its implications. Hastings Center Report, 35(2), 2224.

Fins, J.J. & Plum, F. (2004). Neurological diagnosis is more than a state of mind: Diagnostic clarity and impaired consciousness. Archives of Neurology, 61(9), 13541355.

Giacino, J.T., Ashwal, S., Childs, N., et al. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58(3), 349353.

Hoffman, J.M., Doctor, J.N., Chan, L., et al. (2003). Potential impact of the new medicare prospective payment system on reimbursement for traumatic brain injury inpatient rehabilitation. Archives of Physical Medicine and Rehabilitation, 84(8), 11651172.

Kobylarz, E.J. & Schiff, N.D. (2004). Functional imaging of severely brain-injured patients: Progress, challenges, and limitations. Archives of Neurology, 61(9), 13571360.

Kobylarz, E.J. & Schiff, N.D. (2005). Neurophysiological correlates of persistent vegetative and minimally conscious states. Neuropsychological Rehabilitation, 15(3–4), 323332.

Lammi, M.H., Smith, V.H., Tate, R.L., et al. (2005). The minimally conscious state and recovery potential: A follow-up study 2 to 5 years after traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 86(4), 746754.

Laureys, S., Faymonville, M.E., Degueldre, C., et al. (2000). Auditory processing in the vegetative state. Brain, 123(8), 15891601.

Laureys, S., Owen, A.M., & Schiff, N.D. (2004). Brain function in coma, vegetative state and related disorders. Lancet Neurology, 3(9), 537546.

McCloskey, E.L. (1991). Bioethics inside the beltway: The Patient Self-Determination Act. Kennedy Institute of Ethics Journal, 1(2), 163169.

Schiff, N.D. (2005). Modeling the minimally conscious state: Measurement of brain function and therapeutic possibilities. Progress in Brain Research, 150, 473503.

Schiff, N.D., Ribary, U., Moreno, D.R., et al. (2002). Residual cerebral activity and behavioural fragments can remain in the persistently vegetative brain. Brain, 125(6), 12101234.

Schiff, N.D., Rodriguez-Moreno, D., Kamal, A., et al. (2005). fMRI reveals large-scale network activation in the minimally conscious state. Neurology, 64(3), 514523.

Wolfson, J. (2005). Erring on the side of Theresa Schiavo: Reflections of the special guardian ad litem. Hastings Center Report, 35(3), 1619.

Wolfson, J. (2006). Defined by her dying, not her death: The guardian ad litem's view of Schiavo. Death Studies, 30(2), 113120.

Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Full text views

Total number of HTML views: 3
Total number of PDF views: 29 *
Loading metrics...

Abstract views

Total abstract views: 153 *
Loading metrics...

* Views captured on Cambridge Core between September 2016 - 22nd September 2017. This data will be updated every 24 hours.