, Volume 9, Issue 1, pp 85–102 | Cite as

End-Of-Life Decisions in Chronic Disorders of Consciousness: Sacrality and Dignity as Factors

  • Rocco Salvatore Calabrò
  • Antonino Naro
  • Rosaria De Luca
  • Margherita Russo
  • Lory Caccamo
  • Alfredo Manuli
  • Bernardo Alagna
  • Angelo Aliquò
  • Placido Bramanti
Review Paper


The management of patients suffering from chronic disorders of consciousness (DOC) inevitably raises important ethical questions about the end of life decisions. Some ethical positions claim respect of human life sacredness and the use of good medical practices require allowing DOC patients to live as long as possible, since no one can arbitrarily end either his/her or others’ life. On the other hand, some currents of thought claim respect of human life dignity, patients’ wishes, and the right of free choice entail allowing the withdrawal of life sustaining therapy. This could happen when patients (or surrogates) believe their own life to be not worth living, or if therapy is not very beneficial, excessively burdensome, or even futile. Indeed, the decision to withdraw therapies in a DOC patient should be guided by reliable information about DOC diagnosis and prognosis and on how the patient would wish to be treated in such a condition. Taking into account such issues, it would be possible to make the decision that more adequately fits a DOC patient’s best interest. This review aims to overview the range of ethical issues referring to end-of-life decisions in DOC patients, with regard to the thorny debate on the sacredness and dignity of human life.


Artificial nutrition and hydration Minimally conscious state Right to die Dignity of life Sacredness of life Vegetative state 



We wish to thank Prof. Agata Grosso for having revised the manuscript in the English language.


  1. 1.
    Laureys, S., F. Perrin, and S. Brédart. 2007. Self-consciousness in non-communicative patients. Consciousness and Cognition 16: 722–741.CrossRefGoogle Scholar
  2. 2.
    Zeman, A. 2008. Consciousness: concepts, neurobiology, terminology of impairments, theoretical models and philosophical background. Handbook of Clinical Neurology 90: 3–31.CrossRefGoogle Scholar
  3. 3.
    Zeman, A. 2006. What do we mean by "conscious" and "aware"? Neuropsychological Rehabilitation 16: 356–376.CrossRefGoogle Scholar
  4. 4.
    Formisano, R., M. D’Ippolito, M. Risetti, A. Riccio, C. Falletta Caravasso, S. Catani, F. Rizza, A. Forcina, and M.G. Buzzi. 2011. Vegetative state, minimally conscious state, akinetic mutism and Parkinsonism as a continuum of recovery from disorders of consciousness: an exploratory and preliminary study. Functional Neurology 26: 1–10.Google Scholar
  5. 5.
    Formisano, R., M. D'Ippolito, and S. Catani. 2013. Functional locked-in syndrome as recovery phase of vegetative state. Brain Injury 27: 1332.CrossRefGoogle Scholar
  6. 6.
    Formisano, R., F. Pistoia, and M. Sarà. 2011. Disorders of consciousness: A taxonomy to be changed? Brain Injury. 25: 638.CrossRefGoogle Scholar
  7. 7.
    Bruno, M.A., A. Vanhaudenhuyse, A. Thibaut, G. Moonen, and S. Laureys. 2011. From unresponsive wakefulness to minimally conscious PLUS and functional locked-in syndromes: recent advances in our understanding of disorders of consciousness. Journal of Neurology 258: 1373–1384.CrossRefGoogle Scholar
  8. 8.
    Multi-Society Task Force on PVS. 1994. Medical aspects of the persistent vegetative state. The New England Journal of Medicine 330: 1499–1508.CrossRefGoogle Scholar
  9. 9.
    Demertzi, A. 2014. Multiple fMRI system-level baseline connectivity is disrupted in patients with consciousness alterations. Cortex 52: 35–46.CrossRefGoogle Scholar
  10. 10.
    Giacino, J.T. 1997. Disorders of consciousness: differential diagnosis and neuropathologic features. Seminars in Neurology 17: 105–111.CrossRefGoogle Scholar
  11. 11.
    Bernat, J.L. 2006. Chronic disorders of consciousness. Lancet 367: 1181–1192.CrossRefGoogle Scholar
  12. 12.
    Van de Vathorst, S. 2014. Artificial nutrition at the end of life: ethical issues. Best Practice & Research. Clinical Gastroenterology 28: 247–253.CrossRefGoogle Scholar
  13. 13.
    Rabiu, A.R., and K. Sugand. 2014. Has the sanctity of life law 'gone too far'?: analysis of the sanctity of life doctrine and English case law shows that the sanctity of life law has not 'gone too far'. Philosophy, Ethics, and Humanities in Medicine 9: 5.CrossRefGoogle Scholar
  14. 14.
    Duttge, G. 2011. End-of-life decisions in cases of vegetative state from the legal point of view. Fortschritte der Neurologie-Psychiatrie 79: 582–587.CrossRefGoogle Scholar
  15. 15.
    Jox, R.J. 2011. Best interests in the 'vegetative state'. Fortschritte der Neurologie-Psychiatrie 79: 576–581.CrossRefGoogle Scholar
  16. 16.
    Maggiore, S.M., and M. Antonelli. 2005. Euthanasia, therapeutic obstinacy or something else? an Italian case. Int Care Med 31: 997–998.CrossRefGoogle Scholar
  17. 17.
    Cavalieri, T.A. 2001. Ethical issues at the end of life. The Journal of the American Osteopathic Association 101: 616–622.Google Scholar
  18. 18.
    Review, Book. 1990. Euthanasia: the moral issues. Columbia Law Review 90: 1445–1448.CrossRefGoogle Scholar
  19. 19.
    Chochinov, H.M. 2011. Dignity therapy: final Words for final days. New York: Oxford, UK University Press.CrossRefGoogle Scholar
  20. 20.
    Azevedo, M.A. 2015. Health as a clinic-epidemiological concept. Journal of Evaluation in Clinical Practice 21: 365–373.CrossRefGoogle Scholar
  21. 21.
    Leo, R.J. 1999. Competency and the capacity to make treatment decisions: A Primer for primary care physicians. Prim Care Companion J Clin Psychiatry. 1: 131–141.CrossRefGoogle Scholar
  22. 22.
    Epstein, R.A. 1995. Surrogacy: the case for full Contractual Enforcement. Virginia Law Review 81: 2305.CrossRefGoogle Scholar
  23. 23.
    Bernardin, J. 1988. Consistent Ethic of life. Lake Barrington (IL): Sheed & Ward.Google Scholar
  24. 24.
    Barry, R.L. 2002. The sanctity of human life and its protection. Lanham: University Press of America.Google Scholar
  25. 25.
    Bayertz, K. 1996. Sanctity of life and human dignity. Philosophy and medicine. Boston: Kluwer Academic.CrossRefGoogle Scholar
  26. 26.
    Lanken, P.N., B.D. Ahlheit, S. Crawford, J.H. Hansen-Flaschen, S.F. Lefrak, J.M. Luce, M.A. Matthay, M.L. Osborne, T.A. Raffin, J.L. Robotham, P.A. Selecky, G.L. Snider, D.D. Storey, P.B. Terry, C.B. Cohen, A.R. Jonsen, A. Meisel, L.J. Nelson, and E. Covner-Weiss. 1991. Withholding and withdrawing life-sustaining therapy. The American Review of Respiratory Disease 144: 726–731.CrossRefGoogle Scholar
  27. 27.
    Rubin, E.B., and J.L. Bernat. 2011. Ethical aspects of disordered states of consciousness. Neurologic Clinics 29: 1055–1071.CrossRefGoogle Scholar
  28. 28.
    Chan, T.K., and G.L. Tipoe. 2014. The best interests of persistently vegetative patients: to die rather that to live? Journal of Medical Ethics 40: 202–204.CrossRefGoogle Scholar
  29. 29.
    Ackermann, R.J. 2000. Withholding and Withdrawing Life-Sustaining Treatment Am Fam Physician. 62: 1555–1560.Google Scholar
  30. 30.
    von Wild, K., S.T. Laureys, F. Gerstenbrand, G. Dolce, and G. Onose. 2012. The vegetative state–a syndrome in search of a name. Journal of Medicine and Life 5: 3–15.Google Scholar
  31. 31.
    Laureys, S., G.G. Celesia, F. Cohadon, J. Lavrijsen, J. León-Carrión, W.G. Sannita, L. Sazbon, E. Schmutzhard, K.R. von Wild, A. Zeman, G. Dolce, and European Task Force on Disorders of Consciousness. 2010. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Medicine 8: 68.CrossRefGoogle Scholar
  32. 32.
    Plum, F., and J.B. Posner. 1982. The diagnosis of stupor and coma. New York: Oxford University Press.Google Scholar
  33. 33.
    Jennett, B., and F. Plum. 1972. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet. 1: 734–737.Google Scholar
  34. 34.
    Giacino, J.T. 2004. The JFK coma recovery Scale-Revised: measurement characteristics and diagnostic utility. Archives of Physical Medicine and Rehabilitation 85: 2020–2029.CrossRefGoogle Scholar
  35. 35.
    Giacino, JT. 2009. Behavioral assessment in patients with disorders of consciousness: gold standard or fool's gold? Progress in Brain Research 177: 33–48.CrossRefGoogle Scholar
  36. 36.
    Vos, P.E. 2011. Biomarkers of focal and diffuse traumatic brain injury. Critical Care 15: 183.CrossRefGoogle Scholar
  37. 37.
    Owen, A.M., and M.R. Coleman. 2007. Functional MRI in disorders of consciousness: advantages and limitations. Current Opinion in Neurology 20: 632–637.CrossRefGoogle Scholar
  38. 38.
    Coleman, M.R., M.H. Davis, J.M. Rodd, T. Robson, A. Ali, A.M. Owen, and J.D. Pickard. 2009. Towards the routine use of brain imaging to aid the clinical diagnosis of disorders of consciousness. Brain 132: 2541–2552.CrossRefGoogle Scholar
  39. 39.
    Leon-Carrion, J., J.F. Martin-Rodriguez, J. Damas-Lopez, J.M. Barroso y Martin, and M.R. Dominguez-Morales. 2008. Brain function in the minimally conscious state: a quantitative neurophysiological study. Clinical Neurophysiology 119: 1506–1514.CrossRefGoogle Scholar
  40. 40.
    Arent, A.M., L. Felipe de Souza, R. Walz, and A.L. Dafre. 2014. Perspectives on Molecular Biomarkers of Oxidative stress and Antioxidant Strategies in traumatic brain injury. Biomed Res Int. 2014: 723060.Google Scholar
  41. 41.
    Hirschberg, R., and J.T. Giacino. 2011. The vegetative and minimally conscious states: diagnosis. Prognosis and Treatment. Neurol Clin. 29: 773–786.CrossRefGoogle Scholar
  42. 42.
    Giacino, J.T., J.J. Fins, S. Laureys, and N.D. Schiff. 2014. Disorders of consciousness after acquired brain injury: the state of the science. Nature Reviews. Neurology 10: 99–114.CrossRefGoogle Scholar
  43. 43.
    Schnakers, C., J.T. Giacino, M. Løvstad, D. Habbal, M. Boly, H. Di, S. Majerus, and S. Laureys. 2015. Preserved covert cognition in non-communicative patients with severe brain injury? Neurorehabilitation and Neural Repair 29: 308–317.CrossRefGoogle Scholar
  44. 44.
    Candelieri, A., M.D. Cortese, G. Dolce, F. Riganello, and W.G. Sannita. 2011. Visual pursuit: within-day variability in the severe disorder of consciousness. Journal of Neurotrauma 28: 2013–2017.CrossRefGoogle Scholar
  45. 45.
    Schnakers, C., A. Vanhaudenhuyse, J. Giacino, M. Ventura, M. Boly, S. Majerus, G. Moonen, and S. Laureys. 2009. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 9: 35.CrossRefGoogle Scholar
  46. 46.
    Owen, A.M., M.R. Coleman, M. Boly, M.H. Davis, S. Laureys, and J.D. Pickard. 2006. Detecting awareness in the vegetative state. Science 313: 1402.CrossRefGoogle Scholar
  47. 47.
    Fins, J.J. 2008. Neuroethics and neuroimaging: moving toward transparency. The American Journal of Bioethics 8: 46–52.CrossRefGoogle Scholar
  48. 48.
    Kondziella, D., C.K. Friberg, V.G. Frokjaer, M. Fabricius, and K. Møller. 2015. Preserved consciousness in vegetative and minimal conscious states: systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. doi: 10.1136/jnnp-2015-310958.Google Scholar
  49. 49.
    Luce, J.M. 2013. Chronic disorders of consciousness following coma: part two: ethical, legal, and social issues. Chest 144: 1388–1393.CrossRefGoogle Scholar
  50. 50.
    Luchetti, M. 2010. Eluana Englaro, chronicle of a death foretold: ethical considerations on the recent right-to-die case in Italy. Journal of Medical Ethics 36: 333–335.CrossRefGoogle Scholar
  51. 51.
    Stender, J., A. Gjedde, and S. Laureys. 2015. Detection of consciousness in the severely Injured brain, 495–506. In: Annual Update in Intensive Care and Emergency Medicine, Vincent, JL, editor.Google Scholar
  52. 52.
    Zandbergen, EG, Koelman, JH, de Haan, RJ, Hijdra, A, and PROPAC-Study Group. 2006. SSEPs and prognosis in post-anoxic coma: only short or also long latency responses? Neurology 67: 583–586.CrossRefGoogle Scholar
  53. 53.
    van Erp, W.S., J.C. Lavrijsen, F.A. van de Laar, P.E. Vos, S. Laureys, and R.T. Koopmans. 2014. The vegetative state/unresponsive wakefulness syndrome: a systematic review of prevalence studies. European Journal of Neurology 21: 1361–1368.CrossRefGoogle Scholar
  54. 54.
    Hannawi, Y., M.A. Lindquist, B.S. Caffo, H.I. Sair, and R.D. Stevens. 2015. Resting brain activity in disorders of consciousness: a systematic review and meta-analysis. Neurology 84: 1272–1280.CrossRefGoogle Scholar
  55. 55.
    Wang, F., H. Di, X. Hu, S. Jing, A. Thibaut, C. Di Perri, W. Huang, Y. Nie, C. Schnakers, and S. Laureys. 2015. Cerebral response to subject's own name showed high prognostic value in traumatic vegetative state. BMC Medicine 13: 83.CrossRefGoogle Scholar
  56. 56.
    Sandroni, C., A. Cariou, F. Cavallaro, T. Cronberg, H. Friberg, C. Hoedemaekers, J. Horn, J.P. Nolan, A.O. Rossetti, and J. Soar. 2014. Prognostication in comatose survivors of cardiac arrest: an advisory statement from the European resuscitation Council and the European society of intensive care medicine. Intensive Care Medicine 40: 1816–1831.CrossRefGoogle Scholar
  57. 57.
    Peterson, A., D. Cruse, L. Naci, C. Weijer, and A.M. Owen. 2015. Risk, diagnostic error, and the clinical science of consciousness. Neuroimage Clin. 7: 588–597.CrossRefGoogle Scholar
  58. 58.
    Bagnato, S., C. Boccagni, C. Prestandrea, A. Sant'Angelo, A. Castiglione, and G. Galardi. 2010. Prognostic value of standard EEG in traumatic and non-traumatic disorders of consciousness following coma. Clinical Neurophysiology 121: 274–280.CrossRefGoogle Scholar
  59. 59.
    Giacino, J.T., J. Hirsch, N. Schiff, and S. Laureys. 2006. Functional neuroimaging applications for assessment and rehabilitation planning in patients with disorders of consciousness. Archives of Physical Medicine and Rehabilitation 87: S67–S76.CrossRefGoogle Scholar
  60. 60.
    Gawryluk, JR, D'Arcy, RC, Connolly, JF, and Weaver, DF. 2010. Improving the clinical assessment of consciousness with advances in electrophysiological and neuroimaging techniques. BMC Neurol. 29;10:11.Google Scholar
  61. 61.
    Ariès, P. 1974. Western attitudes toward death from the Middle Ages to the present. Baltimore: Johns Hopkins University Press.Google Scholar
  62. 62.
    Pellegrino, E.D. 2000. Decisions to withdraw life-sustaining treatment: a moral algorithm. Journal of the American Medical Association 283: 1065–1067.CrossRefGoogle Scholar
  63. 63.
    Vacco v. Quill, 521 U.S. 793 (1997).Google Scholar
  64. 64.
    Hardwig, J. 1996. Dying at the right time; Reflections on (Un)assisted suicide. In In: LaFollette. H. Practical Ethics. London: Blackwell.Google Scholar
  65. 65.
    Trau, J.M., and J.J. McCartney. 1993. In the best interest of the patient. Applying this standard to healthcare decision making must be done in a community context. Health Prog. 74: 50–56.Google Scholar
  66. 66.
    Horn, R. 2014. I don’t need my patients’ opinion to withdraw treatment: patient preferences at the end-of-life and physician attitudes towards advance directives in England and France. Medicine, Health Care, and Philosophy 17: 425–435.CrossRefGoogle Scholar
  67. 67.
    Coppa, S. 1996. Futile care: Confronting the high costs of dying. The Journal of Nursing Administration 26: 18–23.CrossRefGoogle Scholar
  68. 68.
    Kapp, M.B. 2001. Economic influences on end-of-life care: empirical evidence and ethical speculation. Death Studies. 25: 251–263.CrossRefGoogle Scholar
  69. 69.
    Lipman, H.I. 2007. Deactivation of advanced lifesaving technologies. The American Journal of Geriatric Cardiology 16: 109–111.CrossRefGoogle Scholar
  70. 70.
    Fine, R.L., and T.W. Mayo. 2003. Resolution of futility by due process: early experience with the Texas advance directives act. Ann Internal Med. 138: 743–746.CrossRefGoogle Scholar
  71. 71.
    Prager, K. 2013. When physicians and surrogates Disagree about futility. Virtual Mentor. 15: 1022–1026.CrossRefGoogle Scholar
  72. 72.
    Gedge, E., M. Giacomini, and D. Cook. 2007. Withholding and withdrawing life support in critical care settings: ethical issues concerning consent. Journal of Medical Ethics 33: 215–218.CrossRefGoogle Scholar
  73. 73.
    Santiago, C., and S. Abdool. 2011. Conversations about challenging end-of-life cases: ethics debriefing in the medical surgical care unit. Dynamics. 22: 26–30.Google Scholar
  74. 74.
    Frankfurt, H. 1988. The importance of what We care about. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  75. 75.
    Rachels, J. 1975. Active and passive euthanasia. The New England Journal of Medicine 292: 78–80.CrossRefGoogle Scholar
  76. 76.
    Lezak, M.D. 1988. Brain damage is a family affair. Journal of Clinical and Experimental Neuropsychology 10: 111–123.CrossRefGoogle Scholar
  77. 77.
    Stern, J., L. Sazbon, E. Becker, and H. Costeff. 1988. Severe behavioural disturbance in families of patients with prolonged coma. Brain Injury. 21: 256–262.Google Scholar
  78. 78.
    Bowlby, J. 1969. Attachment and loss, vol I, Attachment. London: Hogarth Press.Google Scholar
  79. 79.
    Jacobs, H.E., C.A. Muir, and J.D. Cline. 1986. Family reactions to persistent vegetative state. J Head Trauma Rehab. 1: 55–62.CrossRefGoogle Scholar
  80. 80.
    Tzidkiahu, T., L. Sazbon, and P. Solzi. 1994. Characteristic reactions of relatives of post-coma unawareness patients in the process of adjusting to loss. Brain Injury. 8: 159–165.CrossRefGoogle Scholar
  81. 81.
    Holland, S., C. Kitzinger, and J. Kitzinger. 2014. Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Medicine, Health Care, and Philosophy 17: 413–423.CrossRefGoogle Scholar
  82. 82.
    Solarino, B., F. Bruno, G. Frati, A. Dell'erba, and P. Frati. 2011. A national survey of Italian physicians' attitudes towards end-of-life decisions following the death of Eluana Englaro. Intensive Care Medicine 37: 542–549.CrossRefGoogle Scholar
  83. 83.
    Fine, R.L. 2005. From Quinlan to Schiavo: medical, ethical, and legal issues in severe brain injury. Proc (Bayl Univ Med Cent) 18: 303–310.Google Scholar
  84. 84.
    Kinney, H.C., J. Korein, A. Panigrahy, P. Dikkes, and R. Goode. 1994. Neuropathological findings in the brain of Karen Ann Quinlan: the role of the Thalamus in the persistent vegetative state. N E J Med. 330: 1469–1475.CrossRefGoogle Scholar
  85. 85.
    Quinlan, J., and J.D. Quinlan. 1977. Karen Ann: the Quinlans Tell their Story. New York: Bantam Books.Google Scholar
  86. 86.
    Cruzan v. Director. 1990. Missouri Dept. of Health, 497 U.S. 261.Google Scholar
  87. 87.
    W vs. M (2011) EWHC 2443 (Fam).Google Scholar
  88. 88.
    Airedale NHS Trust vs. Bland [1993] AC 789.Google Scholar
  89. 89.
    G (Persistent Vegetative State) [1995] 2 FCR 46.Google Scholar
  90. 90.
    NHS Trust vs. J (2006) FD06P01318.Google Scholar
  91. 91.
    Torke, A.M., G.C. Alexander, and J. Lantos. 2008. Substituted judgment: the limitations of autonomy in surrogate decision making. Journal of General Internal Medicine 23: 1514–1517.CrossRefGoogle Scholar
  92. 92.
    Lo, B., and L. Dornbrand. 1986. The case of Claire Conroy: will administrative review safeguard incompetent patients? Annals of Internal Medicine 104: 869–873.CrossRefGoogle Scholar
  93. 93.
    Nelson, L.J. 2003. Persistent indeterminate state: Reflections on the Wendland case. Issues Ethics 14: 14–17.Google Scholar
  94. 94.
    Eisenberg, J.B., and J.C. Kelso. 2002. The Robert Wendland case. The Western Journal of Medicine 176: 124.Google Scholar
  95. 95.
    Syd, L., and M. Johnson. 2011. The right to die in the minimally conscious state. Journal of Medical Ethics 37: 175–178.CrossRefGoogle Scholar
  96. 96.
    Glannon, W. 2013. Burdens of ANH outweigh benefits in the minimally conscious state. Journal of Medical Ethics 39: 551–552.CrossRefGoogle Scholar
  97. 97.
    Jackson, E. 2013. The minimally conscious state and treatment withdrawal: W v M. Journal of Medical Ethics 39: 559–561.CrossRefGoogle Scholar
  98. 98.
    Dworkin, R. 1994. Life's dominion: an argument about Abortion, euthanasia, and individual freedom. New York: Vintage Piblisher.Google Scholar
  99. 99.
    Sacred Congregation for the Doctrine of the Faith. 1980. Declaration on Euthanasia.Google Scholar
  100. 100.
    Sanders, A. 2009. The clinical reality of artificial nutrition and hydration for patients at the end of life. Philadelphia: The National Catholic Bioethics Quarterly.Google Scholar
  101. 101.
    BBC. 2014. Religion & Ethics: Euthanasia and Suicide.
  102. 102.
    USA National Conference of Catholic Bishops. 1991.Google Scholar
  103. 103.
    Pope John Paul II. 1995. The Gospel of Life: Evangelium Vitae. Rome: Pauline Books & Media.Google Scholar
  104. 104.
    Harvard Political Review. 2003. Indiana University: JFK School of Government-Institute of Politics.Google Scholar
  105. 105.
    Husak, D. 1985. The Motivation for human rights. Soc Theory Pract. 11: 249–255.CrossRefGoogle Scholar
  106. 106.
    Steinhauser, K.E., E.C. Clipp, M. McNeilly, N.A. Christakis, L.M. McIntyre, and J.A. Tulsky. 2000. In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine 132: 825.CrossRefGoogle Scholar
  107. 107.
    Fried, T.R., C. van Doorn, J.R. O'Leary, M.E. Tinetti, and M.A. Drickamer. 1999. Older persons' preferences for site of terminal care. Annals of Internal Medicine 131: 109–112.CrossRefGoogle Scholar
  108. 108.
    New York Department of Health, Task Force on Life and the Law. 2011. When death is Sought: assisted suicide and euthanasia in the medical context. In The Collected Essays of John Finnis, ed. J. Finnis. Oxford: Oxford University Press.Google Scholar
  109. 109.
    Universal Declaration of Human RightsGoogle Scholar
  110. 110.
    Pereira, J. 2011. Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls. Curr Oncology. 18: 38–45.CrossRefGoogle Scholar
  111. 111.
    Ferguson, J.E., and A. Marzilli. 2007. The right to die. New York: Infobase Publishing.Google Scholar
  112. 112.
    Plaisted, D. 2013. An undignified side of death with dignity legislation. Kennedy Institute of Ethics Journal 23: 201–228.CrossRefGoogle Scholar
  113. 113.
    Augé, M. 1995. Non-Places. Introduction to an Anthropology of Supermodernity. New York: Verso.Google Scholar
  114. 114.
    WMA Declaration of Helsinki. 1964. Ethical Principles for Medical Research Involving Human Subjects.Google Scholar
  115. 115.
    The Oviedo Convention. 1997. Protecting human rights in the biomedical field.Google Scholar
  116. 116.
    Universal Declaration on the Human Genome and Human Rights. 1997.Google Scholar
  117. 117.
    Baumann, P. 2007. Pesrons, human beings, and respect. Pol J Philosophy 2: 5–17.CrossRefGoogle Scholar
  118. 118.
    United Nations -Department of Economic and Social Affairs, Division for Social Policy and Development. 2006Google Scholar
  119. 119.
    McHale, J. 2011. A right to die or a right to live? Discontinuing medical treatment. Br J Nurs. 20: 1308–1309.Google Scholar
  120. 120.
    Dyer, C. 2011. Mother asks court to let her brain damaged daughter die. BMJ 342: d2522.CrossRefGoogle Scholar
  121. 121.
    Li, L.L., K.Y. Cheong, L.K. Yaw, and E.H. Liu. 2007. The accuracy of surrogate decisions in intensive care scenarios. Anaesthesia and Intensive Care 35: 46–51.Google Scholar
  122. 122.
    Hendin, H. 1995. Assisted suicide, euthanasia, and suicide prevention: the implications of the Dutch experience. Wiley Online Library: Suicide and Life-Threatening Behavior.Google Scholar
  123. 123.
    Fernandes, A.K. 2001. Euthanasia, assisted suicide, and the philosophical anthropology of Karol Wojtyla. Christian Bioethics 7: 379–402.CrossRefGoogle Scholar
  124. 124.
    Hasday, L. 2013. The Hippocratic Oath as Literary Text: A Dialogue. Yale J. Health Pol'y L. & Ethics. 2:4.Google Scholar
  125. 125.
    WMA Declaration of Geneva. 1948Google Scholar
  126. 126.
    WMA International Code of Medical Ethics. 1949Google Scholar
  127. 127.
    WMA Statement on Physician-Assisted Suicide. 1992.Google Scholar
  128. 128.
    Demertzi, A., D. Ledoux, M.A. Bruno, A. Vanhaudenhuyse, O. Gosseries, A. Soddu, C. Schnakers, G. Moonen, and S. Laureys. 2011. Attitudes towards end-of-life issues in disorders of consciousness: a European survey. Journal of Neurology 258: 1058–1065.CrossRefGoogle Scholar
  129. 129.
    Taboada, P., K.F. Cuddeback, and P. Donohue-White. 2002. Person, society and value: towards a Personalist concept of health. Springer Science & Business Media: Philosophy and Medicine.CrossRefGoogle Scholar
  130. 130.
    Fagerlin, A., P.H. Ditto, I.J.H. Danks, R.M. Houts, and W.D. Smucker. 2001. Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology 20: 166–175.CrossRefGoogle Scholar
  131. 131.
    Seper, F.C., and J. Hamer. 1980. Declaration on euthanasia. The Furrow 31: 609–615.Google Scholar
  132. 132.
    Burns-Coleman, E., and K. White. 2006. Negotiating the sacred: Blasphemy and Sacrilege in a Multicultural society. Acton (ACT): ANU E Press.Google Scholar
  133. 133.
    Gentzler, J. 2003. What is a death with dignity? J Medicine Philos. 28: 461–487.CrossRefGoogle Scholar
  134. 134.
    Waldron, J. 2009. Dignity, Rank, and rights: the Tanner Lectures on human values. Berkeley: University of California.Google Scholar
  135. 135.
    Halliday, S., A. Formby, and R. Cookson. 2015. An assessment of the Court's role in the withdrawal of clinically assisted nutrition and hydration from patients in the permanent vegetative state. Medical Law Review 23: 556–587.CrossRefGoogle Scholar
  136. 136.
    Gillett, G. 2013. Honouring the donor: in death and in life. Journal of Medical Ethics 39: 149–152.CrossRefGoogle Scholar
  137. 137.
    Constable, C. 2012. Withdrawal of artificial nutrition and hydration for patients in a permanent vegetative state: changing tack. Bioethics 26: 157–163.CrossRefGoogle Scholar
  138. 138.
    Fullbrook, S. 2007. Best interest. A review of the legal principles involved: part 2. The British Journal of Nursing 16: 682–683.CrossRefGoogle Scholar
  139. 139.
    Hook, C.C., and P.S. Mueller. 2010. Medical ethics. In In: Ghosh, AK, editor. Mayo Clinic Internal Medicine Board Review: Mayo Clinic Scientific Press.Google Scholar
  140. 140.
    Ganzini, L., H.D. Nelson, T.A. Schmidt, D.F. Kraemer, M.A. Delorit, and M.A. Lee. 2000. Physicians' experiences with the Oregon death with dignity act. The New England Journal of Medicine 342: 557–563.CrossRefGoogle Scholar
  141. 141.
    Leigh, L. 2009. YOUthanasia. Criminal Brief.Google Scholar
  142. 142.
    Hurst, S.A., and A. Mauron. 2003. Assisted suicide and euthanasia in Switzerland: allowing a role for non-physicians. BMJ 326: 271–273.CrossRefGoogle Scholar
  143. 143.
    Lindblad, A., N. Juth, C.J. Fürst, and N. Lynöe. 2009. When enough is enough; terminating life-sustaining treatment at the patient's request: a survey of attitudes among Swedish physicians and the general public. Journal of Medical Ethics 2009: 034967.Google Scholar
  144. 144.
    Müller-Busch, H.C., F.S. Oduncu, S. Woskanjan, and E. Klaschik. 2004. Attitudes on euthanasia, physician assisted suicide and terminal sedation–a survey of the members of the German Association for Palliative Medicine. Medicine, Health Care, and Philosophy 7: 333–339.CrossRefGoogle Scholar
  145. 145.
    Lemaire, A. 2004. Law for end of life care in French. Intensive Care Medicine 30: 2120.CrossRefGoogle Scholar
  146. 146.
    Emanuel, E.J. 2002. Euthanasia and physician-assisted suicide: a review of the empirical data from the United States. Archives of Internal Medicine 162: 142–152.CrossRefGoogle Scholar
  147. 147.
    Bryant, C.D. 2003. Handbook of death & dying. Thousand Oaks: Sage Publications.Google Scholar
  148. 148.
    Kevorkian, J. 1988. The last fearsome taboo: medical aspects of planned death. Medicine Law. 7: 1–14.Google Scholar
  149. 149.
    Bishop, J.P. 2006. Euthanasia, efficiency, and the historical distinction between killing a patient and allowing a patient to die. Journal of Medical Ethics 32: 220–224.CrossRefGoogle Scholar
  150. 150.
    Orr, R., and G. Meilaender. 2004. Ethics & Life’s ending. First Things. 45: 35.Google Scholar
  151. 151.
    Boyle, J.M. Jr. 1980. Toward understanding the principle of double effect. Ethics 90: 527–538.CrossRefGoogle Scholar
  152. 152.
    Bibler, T.M. 2013. Why I no longer say "withdrawal of care" or "life sustaining technology". Journal of Palliative Medicine 16: 1146–1147.CrossRefGoogle Scholar
  153. 153.
    Borsellino, P. 2015. Limitation of the therapeutic effort: ethical and legal justification for withholding and/or withdrawing life sustaining treatments. Multidiscip Respir Med. 10: 5.CrossRefGoogle Scholar
  154. 154.
    Chakravarty, A., and P. Kapoor. 2012. Concepts and debates in end-of-life care. Indian Journal of Medical Ethics 9: 202–206.Google Scholar
  155. 155.
    Chung, GS, Yoon, JD, Rasinski, KA, and Curlin, FA. 2016. US Physicians' Opinions about Distinctions between withdrawing and withholding life-sustaining treatment. J Relig Health. In press.Google Scholar
  156. 156.
    Clint-Parker, J., and D.S. Goldberg. 2016. A legal and ethical analysis of the Effects of Triggering conditions on surrogate decision-making in end-of-life care in the US. HEC Forum 28: 11–33.CrossRefGoogle Scholar
  157. 157.
    Huddle, T.S. 2013. Moral fiction or moral fact? the distinction between doing and allowing in medical ethics. Bioethics 27: 257–262.CrossRefGoogle Scholar
  158. 158.
    Kutzsche, S., J.C. Partridge, S.R. Leuthner, and J.D. Lantos. 2013. When life-sustaining treatment is withdrawn and the patient doesn't die. Pediatrics 132: 893–897.CrossRefGoogle Scholar
  159. 159.
    Lotto, L., A. Manfrinati, D. Rigoni, R. Rumiati, G. Sartori, and N. Birbaumer. 2012. Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis. PLoS One 7: e31735.CrossRefGoogle Scholar
  160. 160.
    McGee, A. 2011. Defending the sanctity of life principle: a reply to John Keown. Journal of Law and Medicine 18: 820–834.Google Scholar
  161. 161.
    Sheather, J.C. 2013. Withdrawing and withholding artificial nutrition and hydration from patients in a minimally conscious state: re: M and its repercussions. Journal of Medical Ethics 39: 543–546.CrossRefGoogle Scholar
  162. 162.
    Walton, L., and D. Bell. 2013. The ethics of hastening death during terminal weaning. Current Opinion in Critical Care 19: 636–641.Google Scholar
  163. 163.
    Wastila, L.J., and N.J. Farber. 2014. Residents' perceptions about surrogate decision makers' financial conflicts of interest in ventilator withdrawal. Journal of Palliative Medicine 17: 533–539.CrossRefGoogle Scholar
  164. 164.
    Welie, J.V., and H.A. Ten Have. 2014. The ethics of forgoing life-sustaining treatment: theoretical considerations and clinical decision making. Multidiscip Respir Med. 9: 14.CrossRefGoogle Scholar
  165. 165.
    Wilkinson, D. 2011. The window of opportunity for treatment withdrawal. Archives of Pediatrics & Adolescent Medicine 165: 211–215.CrossRefGoogle Scholar
  166. 166.
    Wilkinson, D.J., and J. Savulescu. 2011. Knowing when to stop: futility in the ICU. Current Opinion in Anaesthesiology 24: 160–165.CrossRefGoogle Scholar
  167. 167.
    Moody, C.M., I.J. Makowska, and D.M. Weary. 2015. Testing three measures of mouse insensibility following induction with isoflurane or carbon dioxide gas for a more humane euthanasia. Appl Animal Behav Sci. 163: 183–187.CrossRefGoogle Scholar
  168. 168.
    Larriviere, D., and R.J. Bonnie. 2006. Terminating artificial nutrition and hydration in persistent vegetative state patients: current and proposed state laws. Neurology 66: 1624–1628.CrossRefGoogle Scholar
  169. 169.
    Bacon, D., M.A. Williams, and J. Gordon. 2007. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology 68: 1097–1100.CrossRefGoogle Scholar
  170. 170.
    Rosner, F. 1993. Why nutrition and hydration should not be withheld from patients. Chest 104: 1892–1896.CrossRefGoogle Scholar
  171. 171.
    Steinbrook, R., and B. Lo. 1988. Artificial feeding–solid ground, not a slippery slope. The New England Journal of Medicine 318: 286–290.CrossRefGoogle Scholar
  172. 172.
    American Academy of Neurology. 1989. Position of the American academy of neurology on certain aspects of the care and management of the persistent vegetative state patient. Neurology 39: 125–126.CrossRefGoogle Scholar
  173. 173.
    Sullivan, H.J. 2015. Civil rights and Liberties: Provocative questions and Evolving Answers. Routledge.Google Scholar
  174. 174.
    Burt, R.A. 1997. The Supreme court speaks: not assisted suicide but a constitutional right to palliative care. The New England Journal of Medicine 337: 1234–1236.CrossRefGoogle Scholar
  175. 175.
    Bush v. Schiavo, 885 So. 2d 321 (Fla. 2004).Google Scholar
  176. 176.
    Hook CC, Mueller PS. Medical ethics. In: Ghosh, AK, editor, ed. Mayo Clinic Internal Medicine Board Review, 9th ed.Mayo Clinic Scientific Press; 2010.Google Scholar
  177. 177.
    Striano, P., F. Bifulco, and G. Servillo. 2009. The saga of Eluana Englaro: another tragedy feeding the media. Intensive Care Medicine 35: 1129–1131.CrossRefGoogle Scholar
  178. 178.
    Mueller, P.S. 2009. The Terri Schiavo saga: ethical and legal aspects and implications for clinicians. Polskie Archiwum Medycyny Wewnętrznej 119: 574–581.Google Scholar
  179. 179.
    Merrell, D.A. 2009. Erring on the side of life: the case of Terri Schiavo. Journal of Medical Ethics 35: 323–325.CrossRefGoogle Scholar
  180. 180.
    Quill, T.E. 2005. Terri Schiavo-a tragedy compounded. The New England Journal of Medicine 352: 1630–1633.CrossRefGoogle Scholar
  181. 181.
    Bouvia v. Superior Court. 179 Cal. App. 3d 1127, 225 Cal. Rptr. 297 (Ct. App.).Google Scholar
  182. 182.
    Brophy v. New England Sinai Hospital, Inc. 398 Mass. 417, 497 N.E. 2d626 (1986).Google Scholar
  183. 183.
    Olsen, M.L., K.M. Swetz, and P.S. Mueller. 2010. Ethical decision making with end-of-life care: palliative sedation and withholding or withdrawing life-sustaining treatments. Mayo Proc. 85: 949–954.CrossRefGoogle Scholar
  184. 184.
    Wellings, A. 2012. The right to decide. International Journal of Engineering Science 3: 1–3.Google Scholar
  185. 185.
    Reichlin, M. 2014. On the ethics of withholding and withdrawing medical treatment. Multidiscip Respir Med. 9: 39.CrossRefGoogle Scholar
  186. 186.
    Lewis, P. 2007. Withdrawal of treatment from a patient in a permanent vegetative state: judicial involvement and innovative “treatment”: an NHS Trust v. J. Medical Law Review 15: 392–399.Google Scholar
  187. 187.
    Kitzinger, C., and J. Kitzinger. 2016. Family perspectives on ‘proper medical treatment’ for people in prolonged vegetative and minimally conscious states. In The legitimacy of medical treatment: what role for the medical exception, eds. S. Fovargue, and A. Mullock, 86–104. London: Taylor and Francis.Google Scholar
  188. 188.
    Kitzinger, C, and Kitzinger, J. 2015. Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. Journal of Medical Ethics 41: 157–160.CrossRefGoogle Scholar
  189. 189.
    President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment, Washington, D.C.: U.S. Government Printing Office, 1983.Google Scholar
  190. 190.
    Rady, M.Y., and J.L. Verheijde. 2014. Nonconsensual withdrawal of nutrition and hydration in prolonged disorders of consciousness: authoritarianism and trustworthiness in medicine. Philosophy, Ethics, and Humanities in Medicine 9: 6.CrossRefGoogle Scholar
  191. 191.
    Jennett, B. 2005. Thirty years of the vegetative state: clinical, ethical and legal problems. Progress in Brain Research 150: 537–543.CrossRefGoogle Scholar
  192. 192.
    Aristotle, On Interpretation c. 9 18b 30, Thomas Aquinas, Summa Theologica Part 1, Q.83 a1.Google Scholar
  193. 193.
    Kasman, D.L. 2004. When is medical treatment futile? A Guide for Students, Residents, and physicians. J Gen Internal Med. 19: 1053–1056.CrossRefGoogle Scholar
  194. 194.
    Mahon, M.M. 2010. Clinical decision making in palliative care and end of life care. The Nursing Clinics of North America 45: 345–362.CrossRefGoogle Scholar
  195. 195.
    Hebron, A.L., and S. McGee. 2014. Precedent autonomy should be respected in life-sustaining treatment decisions. Journal of Medical Ethics 40: 714–716.CrossRefGoogle Scholar
  196. 196.
    Lovell, A., and P. Yates. 2014. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliative Medicine 28: 1026–1035.CrossRefGoogle Scholar
  197. 197.
    Datta, R., R. Chaturvedi, A. Rudra, and C.N. Jaideep. 2013. End of life issues in the intensive care units. Medical Journal, Armed Forces India 69: 48–53.CrossRefGoogle Scholar
  198. 198.
    Adelman, E.E., and D.B. Zahuranec. 2012. Surrogate decision making in neurocritical care. Continuum (Minneap Minn) 18: 655–658.Google Scholar
  199. 199.
    Kring, D.L. 2007. The patient self-determination act: has it reached the end of its life? JONA'S Healthcare Law, Ethics and Regulation 9: 125–131.CrossRefGoogle Scholar
  200. 200.
    Gordon, M., and D. Levitt. 1996. Acting on a living will: a physician’s dilemma. CMAJ 155(7): 893–895.Google Scholar
  201. 201.
    Institute of Medicine. 2014. Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: The national Academies Press.Google Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2016

Authors and Affiliations

  • Rocco Salvatore Calabrò
    • 1
  • Antonino Naro
    • 1
  • Rosaria De Luca
    • 1
  • Margherita Russo
    • 1
  • Lory Caccamo
    • 2
  • Alfredo Manuli
    • 1
  • Bernardo Alagna
    • 1
  • Angelo Aliquò
    • 1
  • Placido Bramanti
    • 1
  1. 1.IRCCS Centro Neurolesi “Bonino-Pulejo”MessinaItaly
  2. 2.Department of PsychologyUniversity of PadovaPadovaItaly

Personalised recommendations