, Volume 6, Issue 1, pp 25–36

Perspectives and Experience of Healthcare Professionals on Diagnosis, Prognosis, and End-of-Life Decision Making in Patients with Disorders of Consciousness

  • Catherine Rodrigue
  • Richard J. Riopelle
  • James L. Bernat
  • Eric Racine
Original Paper

DOI: 10.1007/s12152-011-9142-4

Cite this article as:
Rodrigue, C., Riopelle, R.J., Bernat, J.L. et al. Neuroethics (2013) 6: 25. doi:10.1007/s12152-011-9142-4


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.


Coma Vegetative state Minimally conscious state Ethics Qualitative research Neuroethics Disorders of consciousness 

Supplementary material

12152_2011_9142_MOESM1_ESM.doc (50 kb)
Online supplementary Table 1Approximate number of patients with disorders of consciousness participants had cared for (DOC 50 kb)
12152_2011_9142_MOESM2_ESM.doc (42 kb)
Online supplementary Table 2Ranking of the ethical and social issues according to categories of participants (DOC 42 kb)

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Catherine Rodrigue
    • 1
    • 2
  • Richard J. Riopelle
    • 3
  • James L. Bernat
    • 4
  • Eric Racine
    • 5
    • 6
    • 1
  1. 1.Neuroethics Research UnitInstitut de recherches cliniques de MontréalMontréalCanada
  2. 2.Programmes de bioéthiqueUniversité de MontréalMontréalCanada
  3. 3.Department of Neurology and Neurosurgery, Montreal Neurological Institute and HospitalMcGill UniversityMontréalCanada
  4. 4.Dartmouth Medical School and Dartmouth-Hitchcock Medical CenterLebanonUSA
  5. 5.Department of Medicine and Department of Social and Preventive MedicineUniversité de MontréalMontrealCanada
  6. 6.Department of Neurology and Neurosurgery, Medicine, and Biomedical Ethics UnitMcGill UniversityMontréalCanada

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