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Brain Function and Responsiveness in Disorders of Consciousness pp 185–194Cite as

Moving Beyond End of Life: The Ethics of Disorders of Consciousness in an Age of Discovery and Uncertainty

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Abstract

In a time of assured hopelessness, the vegetative state inspired the right to die movement. In the current age of discovery, diagnostic and prognostic uncertainty about disorders of consciousness prevails, while hopelessness is no longer certain. The social, ethical, and legal discourses about these disorders must move beyond end-of-life and right to die issues, to engage with the new uncertainty, and reconsider the status of these patients and the rights that follow from restoring them to humanity and personhood. A less speculative, more empirically informed approach to the ethics of disorders of consciousness—an ethics of uncertainty—is needed.

Keywords

  • Disorders of consciousness
  • Vegetative state
  • Unresponsive wakefulness syndrome
  • Minimally conscious state
  • Right to die
  • Neuroethics
  • Uncertainty

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Notes

  1. 1.

    The name of the vegetative state has become contentious. Here, VS will refer to the vegetative state, without reference to persistence or permanence. PVS will refer only to the persistent vegetative state. The term “unresponsive wakefulness syndrome” (UWS) will be discussed below.

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Authors and Affiliations

  1. Department of Humanities, Michigan Technological University, Houghton, MI, 49931, USA

    L. Syd M. Johnson

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  1. L. Syd M. Johnson
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Correspondence to L. Syd M. Johnson .

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Editors and Affiliations

  1. Dept. of Psychology and Neurosurgery, University of California, L.A., Los Angeles, California, USA

    Martin M. Monti

  2. Dept of Neurosc, Ophthalmol and Genetics, University of Genova, Genova, Italy

    Walter G. Sannita

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Johnson, L.S.M. (2016). Moving Beyond End of Life: The Ethics of Disorders of Consciousness in an Age of Discovery and Uncertainty. In: Monti, M., Sannita, W. (eds) Brain Function and Responsiveness in Disorders of Consciousness. Springer, Cham. https://doi.org/10.1007/978-3-319-21425-2_14

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  • DOI: https://doi.org/10.1007/978-3-319-21425-2_14

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