Attitudes towards end-of-life issues in disorders of consciousness: a European survey |
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Authors: | A Demertzi D Ledoux M-A Bruno A Vanhaudenhuyse O Gosseries A Soddu C Schnakers G Moonen S Laureys |
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Institution: | 1. Coma Science Group, Cyclotron Research Centre, University of Liège, Allée du 6 ao?t no 8, Sart Tilman B30, 4000, Liège, Belgium 2. Department of Neurology, University Hospital of Liège, Sart Tilman B-35, 4000, Liège, Belgium
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Abstract: | Previous European surveys showed the support of healthcare professionals for treatment withdrawal i.e., artificial nutrition
and hydration (ANH) in chronic vegetative state (VS) patients]. The recent definition of minimally conscious state (MCS),
and possibly research advances (e.g., functional neuroimaging), may have lead to uncertainty regarding potential residual
perception and may have influenced opinions of healthcare professionals. The aim of the study was to update the end-of-life
attitudes towards VS and to determine the end-of-life attitudes towards MCS. A 16-item questionnaire related to consciousness,
pain and end-of-life issues in chronic (i.e., >1 year) VS and MCS and locked-in syndrome was distributed among attendants
of medical and scientific conferences around Europe (n = 59). During a lecture, the items were explained orally to the attendants who needed to provide written yes/no responses.
Chi-square tests and logistic regression analyses identified differences and associations for age, European region, religiosity,
profession, and gender. We here report data on items concerning end-of-life issues on chronic VS and MCS. Responses were collected
from 2,475 participants. For chronic VS (>1 year), 66% of healthcare professionals agreed to withdraw treatment and 82% wished
not to be kept alive (P < 0.001). For chronic MCS (>1 year), less attendants agreed to withdraw treatment (28%, P < 0.001) and wished not to be kept alive (67%, P < 0.001). MCS was considered worse than VS for the patients in 54% and for their families in 42% of the sample. Respondents’
opinions were associated with geographic region and religiosity. Our data show that end-of-life opinions differ for VS as
compared to MCS. The introduction of the diagnostic criteria for MCS has not substantially changed the opinions on end-of-life
issues on permanent VS. Additionally, the existing legal ambiguity around MCS may have influenced the audience to draw a line
between expressing preferences for self versus others, by implicitly recognizing that the latter could be a step on the slippery
slope to legalize euthanasia. Given the observed individual variability, we stress the importance of advance directives and
identification of proxies when discussing end-of-life issues in patients with disorders of consciousness. |
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