Abstract
The intriguing issue of pain and suffering in patients with disorders of consciousness (DOCs), particularly in Unresponsive Wakefulness Syndrome/Vegetative State (UWS/VS) and Minimally Conscious State (MCS), is assessed from a theoretical point of view, through an overview of recent neuroscientific literature, in order to sketch an ethical analysis. In conclusion, from a legal and ethical point of view, formal guidelines and a situationist ethics are proposed in order to best manage the critical scientific uncertainty about pain and suffering in DOCs and ensure the best possible care for the patient.
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Notes
The definition of pain is available on-line at http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Definitions&Template=/CM/HTMLDisplay.cfm&ContentID=1728#Pain (accessed 21/09/2010).
In what follows, if not specified, we will refer to pain as the general phenomenon including these two components.
References
Schnakers, C., S. Laureys, and M.E. Faymonville. 2009. Ethical implications: Pain, coma, and related disorders. In Encyclopedia of consciousness, vol. 1, ed. W. Banks, 243–250. Amsterdam: Elsevier.
Laureys, S., M.E. Faymonville, P. Peigneux, P. Damas, B. Lambermont, G. Del Fiore, et al. 2002. Cortical processing of noxious somatosensory stimuli in the persistent vegetative state. Neuroimage 17: 732–741.
Wade, D.T. 2001. Ethical issues in diagnosis and management of patients in the permanent vegetative state. British Medical Journal 322: 352–354.
Boly, M., M. Massimini, and G. Tononi. 2009. Theoretical approaches to the diagnosis of altered states of consciousness. In Progress in brain research, ed. S. Laureys et al., 383–398. Amsterdam: Elsevier.
Posner, J., C. Saper, N. Schiff, and F. Plum (eds.). 2007. Plum and Posner’s diagnosis of stupor and coma, 4th ed. Oxford: Oxford University Press.
Owen, A.M., and M.R. Coleman. 2008. Functional neuroimaging of the vegetative state. Nature Review Neuroscience 9: 235–243.
Koch, C. 2004. The quest for consciousness: A neurobiological approach. Denver: Roberts and Co.
Jennett, B., and F. Plum. 1972. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet 1: 734–737.
Multi-Society Task Force on PVS. 1994. Medical aspects of the persistent vegetative state. Part I. New England Journal of Medicine 330: 1499–1508.
Laureys, S. 2007. Eyes open, brain shut. Scientific American 296(5): 84–89.
Giacino, J.T., S. Ashwal, N. Childs, R. Cranford, B. Jennett, D.I. Katz, et al. 2002. The minimally conscious state: Definition and diagnostic criteria. Neurology 58: 349–353.
Schnakers, C., A. Vanhaudenhuyse, J. Giacino, M. Ventura, M. Boly, S. Majerus, et al. 2009. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BioMedCentral Neurology 9: 35.
Merskey, H., and N. Bogduk (eds.). 1994. Classification of chronic pain. Descriptions of chronic pain syndromes and definitions of pain terms, 2nd ed. Seattle: IASP.
Loeser, J.D., and R.D. Treede. 2008. The Kyoto protocol of IASP Basic Pain Terminology. Pain 137: 473–477.
Schnakers, C., and N.D. Zasler. 2007. Pain assessment and management in disorders of consciousness. Current Opinion in Neurology 20: 620–626.
Demertzi, A., C. Schnakers, D. Ledoux, C. Chatelle, M.A. Bruno, A. Vanhaudenhuyse, et al. 2009. Different beliefs about pain perception in the vegetative and minimally conscious states: A European survey of medical and paramedical professionals. Progress in Brain Research 177: 329–338.
Cassel, E.J. 1982. The nature of suffering and the goals of medicine. The New England Journal of Medicine 306: 639–645.
Cassell, E.J., and B.A. Rich. 2010. Intractable end-of-life suffering and the ethics of palliative sedation. Pain Medicine 11: 435–438.
Kassubek, J., F.D. Juengling, T. Els, J. Spreer, M. Herpers, T. Krause, et al. 2003. Activation of a residual cortical network during painful stimulation in long-term postanoxic vegetative state: A 15O-H2O PET study. Journal of the Neurological Science 212: 85–91.
Jennett, B. 2005. Thirty years of the vegetative state: Clinical, ethical and legal problems. Progress in Brain Research 150: 537–543.
Schiff, N.D., U. Ribary, F. Plum, and R. Llinas. 1999. Words without mind. Journal of Cognitive Neuroscience 11(6): 650–656.
Perrin, F., C. Schnakers, M. Schabus, C. Degueldre, S. Goldman, S. Brédart, et al. 2006. Brain response to one’s own name in vegetative state, minimally conscious state, and locked-in syndrome. Archives of Neurology 63: 562–569.
Bekinschtein, T.A., D.E. Shalom, C. Forcato, M. Herrera, M.R. Coleman, F.F. Manes, and M. Sigman. 2009. Classical conditioning in the vegetative and minimally conscious state. Nature Neuroscience 12(10): 1343–4351.
Schacter, D.L. 1994. Priming and multiple memory systems: Perceptual mechanisms of implicit memory. In Memory systems, ed. D.L. Schacter and E. Tulving, 233–268. Cambridge: MIT.
Davis, M.H., M.R. Coleman, A.R. Absalom, J.M. Rodd, I.S. Johnsrude, B.F. Matta, et al. 2007. Dissociating speech perception and comprehension at reduced levels of awareness. Proceedings of the National Academy of Sciences 104(41): 16032–16037.
Panksepp, J. 2000. Affective consciousness and the instinctual motor system: The neural sources of sadness and joy. In The caldron of consciousness: Motivation, affect and self-organization. Advances in Consciousness Research, ed. R. Ellis and N. Newton, 27–54. Amsterdam: John Benjamins Pub.
Panksepp, J., T. Fuchs, V.A. Garcia, and A. Lesiak. 2007. Does any aspect of mind survive brain damage that typically leads to a persistent vegetative state? Ethical considerations. Philosophy Ethics and Humanity in Medicine 17(2): 32–43.
Panksepp, J. 1998. Affective neuroscience, the foundations of human and animal emotions. Oxford: Oxford University Press.
Panksepp, J. 2005. Affective consciousness: Core emotional feelings in animals and humans. Consciousness and Cognition 14: 30–80.
Boly, M., M.E. Faymonville, P. Peigneux, B. Lambermont, F. Damas, A. Luxen, et al. 2005. Cerebral processing of auditory and noxious stimuli in severely brain injured patients: Differences between VS and MCS. Neuropsychological Rehabilitation 15(3–4): 283–289.
Boly, M., M.E. Faymonville, C. Schnakers, P. Peigneux, B. Lambermont, C. Phillips, et al. 2008. Perception of pain in the minimally conscious state with PET activation: An observational study. Lancet 7: 1013–1020.
Macniven, J.A., R. Poz, K. Bainbridge, F. Gracey, and B.A. Wilson. 2003. Emotional adjustment following cognitive recovery from ‘persistent vegetative state’: Psychological and personal perspectives. Brain Injury 17(6): 525–533.
Wilson, B.A., F. Gracey, and K. Bainbridge. 2001. Cognitive recovery from “persistent vegetative state”: Psychological and personal perspectives. Brain Injury 15(12): 1083–1092.
Fins, J.J., J. Illes, J.L. Bernat, J. Hirsch, S. Laureys, and E. Murphy. 2008. Neuroimaging and disorders of consciousness: Envisioning an ethical research agenda. The American Journal of Bioethics 8: 3–12.
Syd, L., and M. Johnson. 2010. Implications of recent neuroscientific findings in patients with disorders of consciousness. Neuroethics 3: 185–196.
Truog, R.D., M.L. Campbell, J.R. Curtis, C.E. Haas, J.M. Luce, G.D. Rubenfeld, et al. 2008. Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American Academy of Critical Care Medicine. Critical Care Medicine 36(3): 953–963.
Tshibanda, L., A. Vanhaudenhuyse, M. Boly, A. Soddu, M.A. Bruno, G. Moonen, et al. 2010. Neuroimaging after coma. Neuroradiology 52(1): 15–24.
Soddu, A., M. Boly, Y. Nir, Q. Noirhomme, A. Vanhaudenhuyse, A. Demertzi, et al. 2009. Reaching across the abyss: Recent advances in functional magnetic resonance imaging and their potential relevance to disorders of consciousness. Progress in Brain Research 177: 261–274.
Logothetis, N.K. 2008. What we can do and what we cannot do with fMRI. Nature 453: 869–878.
Poldrack, R.A. 2008. The role of fMRI in cognitive neuroscience: Where do we stand? Current Opinion in Neurobiology 18: 223–227.
Laureys, S., P. Peigneux, and S. Goldman. 2002. Brain imaging. In Biological psychiatry, vol. 1, ed. H. D’haenen, J.A. den Boer, and P. Willner, 155–166. New York: Wiley.
Bennett, M., and P. Hacker. 2003. Philosophical foundations of neuroscience. Oxford: Blackwell.
Uttal, W. 2003. The new phrenology: The limits of localizing cognitive processes in the brain. Cambridge: MIT University Press.
Poldrack, R.A. 2006. Can cognitive processes be inferred from neuroimaging data? Trends in Cognitive Science 10(2): 59–63.
Fisher, C.E., and P.S. Appelbaum. 2010. Diagnosing consciousness: Neuroimaging, law, and the vegetative state. The Journal of Law, Medicine & Ethics 38(2): 374–385.
Giordano, J. 2008. Complementarity, brain mind, and pain. Forschende Komplementärmed 15: 71–73.
Pape, T.L., R.G. Senno, A. Guernon, and J.P. Kelly. 2005. A measure of neurobehavioral functioning after coma. Part I: Theory, reliability, and validity of the Disorders of Consciousness Scale. Journal of Rehabilitation Research and Development 42: 1–18.
Pape, T.L., R.G. Senno, A. Guernon, and J.P. Kelly. 2005. A measure of neurobehavioral functioning after coma. Part II: Clinical and scientific implementation. Journal of Rehabilitation Research and Development 42: 19–28.
Chatelle, C., A. Vanhaudenhuyse, A.N. Mergam, M. De Val, S. Majerus, M. Boly, et al. 2008. Pain assessment in non-communicative patients. Revue Médicale de Liège 63: 429–437.
Demertzi, A., A. Vanhaudenhuyse, M.A. Bruno, C. Schnakers, M. Boly, P. Boveroux, et al. 2008. Is there anybody in there? Detecting awareness in disorders of consciousness. Expert Review of Neurotherapeutics 8: 1719–1730.
Giacino, J.T., and K. Kalmar. 2004. Coma Recovery Scale Revised. Administration and scoring guidelines. Edison: Center for Head Injuries.
Gill-Thwaites, H., and R. Munday. 2004. The Sensory Modality Assessment and Rehabilitation Technique (SMaRT): A valid and reliable assessment for vegetative state and minimally conscious state patients. Brain Injury 18(12): 1255–1269.
Schnakers, C., C. Chatelle, A. Vanhaudenhuyse, S. Majerus, D. Ledoux, M. Boly, et al. 2010. The Nociception Coma Scale: A new tool to assess nociception in disorders of consciousness. Pain 148: 215–219.
Council of Europe. 1997. Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.
Council for International Organizations of Medical Sciences and World Health Organization. 2002. International ethical guidelines for biomedical research involving human subjects.
Williams, J. 2008. The declaration of Helsinki and public health. Bulletin of the World Health Organisation 86(8): 650–652.
Charlton, E. (ed.). 2005. Core curriculum for professional education in pain. Cap 6. Ethical standards in pain management and research. Seattle: IASP.
Wijdicks, E.F., A. Hijdra, G.B. Young, C.L. Bassetti, and S. Wiebe. 2006. Practice parameter: Prediction of outcome in comatose survivors after cardiopulmonary resuscitation (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 67: 203–210.
Jacobi, J., G.L. Fraser, D.B. Coursin, R.R. Riker, D. Fontaine, E.T. Wittbrodt, et al. 2002. Clinical practice guidelines for the sustained use of sedatives and analgesics in the critically ill adult. Critical Care Medicine 30(1): 119–141.
Young, J., J. Siffleet, S. Nikoletti, and T. Shaw. 2006. Use of a Behavioural Pain Scale to assess pain in ventilated, unconscious and/or sedated patients. Intensive & Critical Care Nursing 22: 32–39.
Australian Government. National Health and Medical Research Council. 2008a. Ethical guidelines for the care of people in post-coma unresponsiveness (Vegetative State) or a minimally responsive state.
Australian Government. National Health and Medical Research Council. 2008b. Post-coma unresponsiveness and minimally responsive state. A guide for families and carers of people with profound brain damage.
New South Wales Department of Health. 2005. Guidelines for end-of-life care and decision making. Available online at www.health.nsw.gov.au.
Royal College of Physicians. 2003. The Vegetative State: Guidance on the diagnosis and management.
British Medical Association. 2007. Policy and guidelines for health professionals on advance statements about medical treatment.
General Medical Council. 2010. Treatment and care towards the end of life: Good practice in decision making.
Beauchamp, T.L., and J.F. Childress. 2001. Principles of biomedical ethics, 5th ed. Oxford: Oxford University Press.
Strens, L.H., G. Mazibrada, J.S. Duncan, and R. Greenwood. 2004. Misdiagnosing the vegetative state after severe brain injury: The influence of medication. Brain Injury 18: 213–218.
IASP. 1995. Ethical guidelines for pain research in humans.
Casey, K.L. 2010. Pain and consciousness at the bedside. Pain 148(2): 182–183.
Acknowledgements
This work was supported by the European Neuroscience and Society Network (ENSN), a research program funded by European Science Foundation (ESF). Special thanks to Steven Laureys and the Coma Science Group of the University of Liège (Belgium), where I spent my Exchange Grant by ENSN.
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Farisco, M. The Ethical Pain. Neuroethics 6, 265–276 (2013). https://doi.org/10.1007/s12152-011-9111-y
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DOI: https://doi.org/10.1007/s12152-011-9111-y