Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state

References

• Turner-Stokes L. Prolonged disorders of consciousness: new national clinical guidelines from the Royal College of Physicians, London. Clin Med. 2014;14:4–5.
   PubMed Web of Science ®Google Scholar
• Chalmers DJ. The conscious mind: in search of a fundamental theory. New York: Oxford university press; 1996.
   Google Scholar
• Block NJ, Flanagan OJ, Güzeldere G. The nature of consciousness: philosophical debates. Cambridge (MA): MIT press; 1997.
   Google Scholar
• Frankfurt HG. Freedom of the Will and the Concept of a Person. In What is a person? Humana Press; 1988. p. 127–144.
   Google Scholar
• Dennett DC. Consciousness explained. UK: Penguin; 1993.
   Google Scholar
• Arico A, Fiala B, Goldberg RF, et al. The folk psychology of consciousness. Mind Language. 2011;26:327–352.
   Web of Science ®Google Scholar
• Van Gulick R. Consciousness. In Zalta EN, editor. The Stanford encyclopedia of philosophy (Winter 2016). Stanford (CA): The Metaphysics Research Lab Center for the Study of Language and Information, Stanford University; 2016.
   Google Scholar
• Edgar A, Kitzinger C, Kitzinger J. Interpreting chronic disorders of consciousness: medical science and family experience. J Eval Clin Pract. 2015;21:374–379.
   PubMed Web of Science ®Google Scholar
• Giacino JT, Katz DI, Schiff ND, et al. Practice guideline update recommendations summary: disorders of consciousness: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Arch Phys Med Rehabil. 2018;99:1699–1709.
   PubMed Web of Science ®Google Scholar
• Giacino JT, Ashwal S, Childs N, et al. The minimally conscious state definition and diagnostic criteria. Neurology. 2002;58:349–353.
   PubMed Web of Science ®Google Scholar
• Latchem J, Kitzinger J, Kitzinger C. Physiotherapy for vegetative and minimally conscious state patients: family perceptions and experiences. Disabil Rehabil. 2016;38:22–29.
   PubMed Web of Science ®Google Scholar
• Sheperd J. Moral conflict in the minimally conscious state. In: Sinnott-Armstrong W, editor. Finding consciousness: the neuroscience, ethics, and law of severe brain damage. Oxford (UK): Oxford University Press; 2016. p. 160.
   Google Scholar
• Shepherd J, Levy N. Consciousness and morality. In: Kriegel U, editor. Oxford handbook of the philosophy of consciousness. Oxford University Press. Available from: https://philpapersorg/archive/SHECAM-3docx
   Google Scholar
• Huebner B. Commonsense concepts of phenomenal consciousness: does anyone care about functional zombies? Phenom Cogn Sci. 2010;9:133–155.
   Web of Science ®Google Scholar
• Siewert C. The significance of consciousness. Princeton (NJ): Princeton University Press; 1998.
   Google Scholar
• Sinnott-Armstrong W, Miller FG. What makes killing wrong? J Med Ethics. 2013;39:3–7.
   PubMedGoogle Scholar
• Wilkinson D, Kahane G, Savulescu J. Neglected personhood” and neglected questions: Remarks on the moral significance of consciousness. Am J Bioeth. 2008;8:31–33.
   PubMed Web of Science ®Google Scholar
• Demertzi A, Racine E, Bruno MA, et al. Pain perception in disorders of consciousness: neuroscience, clinical care, and ethics in dialogue. Neuroethics. 2013;6:37–50.
   Web of Science ®Google Scholar
• Cranford RE, Smith DR. Consciousness: the most critical moral (constitutional) standard for human personhood. Am J Law Med. 1987;13:233.
   PubMed Web of Science ®Google Scholar
• Tavalaro J, Tayson R. Look up for yes. New York: Kodansha International; 1997.
   Google Scholar
• Fisher M, Ridley S. Uncertainty in end-of-life care and shared decision making. Crit Care Resusc. 2012;14:81.
   PubMed Web of Science ®Google Scholar
• Peterson A, Cruse D, Naci L, et al. Risk, diagnostic error, and the clinical science of consciousness. NeuroImage Clin. 2015;7:588–597.
   PubMed Web of Science ®Google Scholar
• Johnson L. Inference and inductive risk in disorders of consciousness. AJOB Neuroscience. 2016;7:35–43.
   Google Scholar
• Kahane G, Savulescu J. Brain damage and the moral significance of consciousness. J Med Philos. 2009;34:6–26.
   PubMed Web of Science ®Google Scholar
• Markhorst J, Martirosyan L, Calsbeek H, et al. Stakeholders' perspectives on quality indicators for diabetes care: a qualitative study. Quality in Primary Care. 2012;20:253–261.
   PubMedGoogle Scholar
• Sibbald SL, Singer PA, Upshur R, et al. Priority setting: what constitutes success? A conceptual framework for successful priority setting. BMC Health Serv Res. 2009;9:43.
   PubMed Web of Science ®Google Scholar
• Ubel PA. How stable are people’s preferences for giving priority to severely ill patients? Soc Sci Med. 1999;49:895–903.
   PubMed Web of Science ®Google Scholar
• Norheim OF, Baltussen R, Johri M, et al. Guidance on priority setting in health care (GPS-Health): the inclusion of equity criteria not captured by cost-effectiveness analysis. Cost Eff Resour Alloc. 2014;12:18.
   PubMed Web of Science ®Google Scholar
• Skedgel C, Wailoo A, Akehurst R. Societal preferences for distributive justice in the allocation of health care resources: a latent class discrete choice experiment. Med Decis Making. 2015;35:94–105.
   PubMed Web of Science ®Google Scholar
• Wilkinson DJ, Savulescu J. Knowing when to stop: futility in the intensive care unit. Curr Opin Anaesthesiol. 2011;24:160.
   PubMed Web of Science ®Google Scholar
• Consensus conference C. Rehabilitation of persons with traumatic brain injury. NIH consensus development panel on rehabilitation of persons with traumatic brain injury. JAMA. 1999;282:974–983.
   PubMedGoogle Scholar
• Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res. 2009;18:1263–1278.
   PubMed Web of Science ®Google Scholar
• Taylor GW, Ussher JM. Making sense of S&M: a discourse analytic account. Sexualities. 2001;4:293–314.
   Google Scholar
• Singer D, Hunter M. The experience of premature menopause: a thematic discourse analysis. J Reprod Infant Psychol. 1999;17:63–81.
   Google Scholar
• Frith H, Gleeson K. Clothing and embodiment: men managing body image and appearance. Psychol Men Masc. 2004;5:40.
   Google Scholar
• Polkinghorne DE. Language and meaning: data collection in qualitative research. J Couns Psychol. 2005;52:137.
   Web of Science ®Google Scholar
• LeCompte MD, Schensul JJ. Analyzing & interpreting ethnographic data. Walnut Creek (CA): Rowman Altamira. 1999.
   Google Scholar
• Muhr T, Friese S. User’s Manual for ATLAS. ti 5.0. Berlin: ATLAS ti Scientific Software Development GmbH; 2004.
   Google Scholar
• Bazeley P. Analysing qualitative data: more than ‘identifying themes. Malays J Qual Res. 2009;2:6–22.
   Google Scholar
• Gray HM, Gray K, Wegner DM. Dimensions of mind perception. Science. 2007;315:619–619.
   PubMed Web of Science ®Google Scholar
• Gipson J, Kahane G, Savulescu J. Attitudes of lay people to withdrawal of treatment in brain damaged patients. Neuroethics. 2014;7:1–9.
   PubMed Web of Science ®Google Scholar
• Engebretsen E, Heggen K, Wieringa S, et al. Uncertainty and objectivity in clinical decision making: a clinical case in emergency medicine. Med Health Care Philos. 2016;19:595–603.
   PubMed Web of Science ®Google Scholar
• Greenhalgh T. Uncertainty and clinical method. In: Sommers LS, Launer J, editors. Clinical uncertainty in primary care. New York: Springer; 2013. p. 23–45.
   Google Scholar
• Wannez S, Hoyoux T, Langohr T, et al. Objective assessment of visual pursuit in patients with disorders of consciousness: an exploratory study. J Neurol. 2017;264:928–937.
   PubMed Web of Science ®Google Scholar
• Larson DG, Tobin DR. End-of-life conversations: evolving practice and theory. JAMA. 2000;284:1573–1578.
   PubMed Web of Science ®Google Scholar
• Cox CE, Martinu T, Sathy SJ, et al. Expectations and outcomes of prolonged mechanical ventilation. Crit Care Med. 2009;37:2888.
   PubMed Web of Science ®Google Scholar
• Fins JJ. Rights come to mind: brain injury, ethics, and the struggle for consciousness. New York (NY): Cambridge University Press; 2015.
   Google Scholar
• Vukov J. When does consciousness matter? Lessons from the minimally conscious state. AJOB Neuroscience. 2018;9:5–15.
   Google Scholar
• Bayne T, Hohwy J, Owen AM. Reforming the taxonomy in disorders of consciousness. Ann Neurol. 2017;82:866–872.
   PubMed Web of Science ®Google Scholar
• Graham M. A fate worse than death? The well-being of patients diagnosed as vegetative with covert awareness. Ethic Theory Moral Prac. 2017;20:1005–1020.
   Web of Science ®Google Scholar