Perspectives and Experience of Healthcare Professionals on Diagnosis, Prognosis, and End-of-Life Decision Making in Patients with Disorders of Consciousness
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
Neuroethics 6 (1):25-36 (2013)
In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC
|Keywords||Coma Vegetative state Minimally conscious state Ethics Qualitative research Neuroethics Disorders of consciousness|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Adrian M. Owen, Martin R. Coleman, Melanie Boly, Matthew H. Davis, Steven Laureys, Dietsje Jolles & John D. Pickard (2006). Detecting Awareness in the Conscious State. Science 313:1402.
Steven Laureys, Adrian M. Owen & Nicholas D. Schiff (2004). Brain Function in Coma, Vegetative State, and Related Disorders. Lancet Neurology 3:537-546.
Laura A. Siminoff, Christopher Burant & Stuart J. Youngner (2004). Death and Organ Procurement: Public Beliefs and Attitudes. Kennedy Institute of Ethics Journal 14 (3):217-234.
Citations of this work BETA
No citations found.
Similar books and articles
Jakob Hohwy & David Reutens (2009). A Case for Increased Caution in End of Life Decisions for Disorders of Consciousness. Monash Bioethics 28 (2):13.1-13.13.
Orsolya Friedrich (2013). Knowledge of Partial Awareness in Disorders of Consciousness: Implications for Ethical Evaluations? Neuroethics 6 (1):13-23.
A. Demertzi, E. Racine, M.-A. Bruno, D. Ledoux, O. Gosseries, A. Vanhaudenhuyse, M. Thonnard, A. Soddu, G. Moonen & S. Laureys (2013). Pain Perception in Disorders of Consciousness: Neuroscience, Clinical Care, and Ethics in Dialogue. [REVIEW] Neuroethics 6 (1):37-50.
L. Syd M. Johnson (2010). Implications of Recent Neuroscientific Findings in Patients with Disorders of Consciousness. Neuroethics 3 (2):185-196.
Joseph T. Giacino & J. T. Whyte (2005). The Vegetative and Minimally Conscious States: Current Knowledge and Remaining Questions. Journal of Head Trauma Rehabilation 20 (1):30-50.
Ralf J. Jox & Katja Kuehlmeyer (2013). Introduction: Reconsidering Disorders of Consciousness in Light of Neuroscientific Evidence. Neuroethics 6 (1):1-3.
Kirsten Brukamp (2013). Right (to a) Diagnosis? Establishing Correct Diagnoses in Chronic Disorders of Consciousness. Neuroethics 6 (1):5-11.
Hanne Irene Jensen, Jette Ammentorp, Helle Johannessen & Helle Ørding (2013). Challenges in End-of-Life Decisions in the Intensive Care Unit: An Ethical Perspective. [REVIEW] Journal of Bioethical Inquiry 10 (1):93-101.
Lois L. Shepherd (2009). If That Ever Happens to Me: Making Life and Death Decisions After Terri Schiavo. University of North Carolina Press.
Andrew A. Fingelkurts, Alexander A. Fingelkurts, Sergio Bagnato, Cristina Boccagni & Giuseppe Galardi (2013). Prognostic Value of Resting-State EEG Structure in Disentangling Vegetative and Minimally Conscious States: A Preliminary Study. Neurorehabilitation and Neural Repair 27 (4):345-354.
Jukka Varelius (2009). Minimally Conscious State and Human Dignity. Neuroethics 2 (1):35-50.
James L. Werth & Dean Blevins (eds.) (2008). Decision Making Near the End of Life: Issues, Development, and Future Directions. Brunner-Routledge.
Kath M. Melia (2004). Health Care Ethics: Lessons From Intensive Care. Sage Publications.
Gastone G. Celesia (1997). Persistent Vegetative State: Clinical and Ethical Issues. Theoretical Medicine and Bioethics 18 (3).
Added to index2011-11-28
Total downloads16 ( #214,799 of 1,789,998 )
Recent downloads (6 months)1 ( #424,764 of 1,789,998 )
How can I increase my downloads?