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

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Abstract

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.

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Acknowledgements

We would like to thank members of the Neuroethics Research Unit for early feedback on this paper as well as members of the Tri-lateral neuroethics initiative and participants to the first annual meeting of this tri-lateral group. This work is supported by grants from the CIHR (Tri-lateral neuroethics initiative; New Investigator Award), and the FRSQ (Eric Racine).

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Authors and Affiliations

  1. Neuroethics Research Unit, Institut de recherches cliniques de Montréal, 110 avenue des Pins Ouest, Montréal, QC, H2W lR7, Canada

    Catherine Rodrigue & Eric Racine

  2. Programmes de bioéthique, Université de Montréal, Montréal, QC, Canada

    Catherine Rodrigue

  3. Department of Neurology and Neurosurgery, Montreal Neurological Institute and Hospital, McGill University, 3801 University Street, Montréal, Québec, H3A 2B4, Canada

    Richard J. Riopelle

  4. Dartmouth Medical School and Dartmouth-Hitchcock Medical Center, One Medical Center Drive, Lebanon, NH, 03756, USA

    James L. Bernat

  5. Department of Medicine and Department of Social and Preventive Medicine, Université de Montréal, Montreal, Canada

    Eric Racine

  6. Department of Neurology and Neurosurgery, Medicine, and Biomedical Ethics Unit, McGill University, Montréal, Canada

    Eric Racine

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  1. Catherine Rodrigue
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  2. Richard J. Riopelle
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Correspondence to Eric Racine.

Electronic supplementary material

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Online supplementary Table 1

Approximate number of patients with disorders of consciousness participants had cared for (DOC 50 kb)

Online supplementary Table 2

Ranking of the ethical and social issues according to categories of participants (DOC 42 kb)

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Rodrigue, C., Riopelle, R.J., Bernat, J.L. et al. Perspectives and Experience of Healthcare Professionals on Diagnosis, Prognosis, and End-of-Life Decision Making in Patients with Disorders of Consciousness. Neuroethics 6, 25–36 (2013). https://doi.org/10.1007/s12152-011-9142-4

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  • DOI: https://doi.org/10.1007/s12152-011-9142-4

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