Attitudes towards end-of-life issues in disorders of consciousness: a European survey

• Published in: Journal of neurology Vol. 258; no. 6; pp. 1058 - 1065
• Main Authors: Demertzi, A., Ledoux, D., Bruno, M.-A., Vanhaudenhuyse, A., Gosseries, O., Soddu, A., Schnakers, C., Moonen, G., Laureys, S.
• Format: Journal Article Web Resource
• Language: English
• Published: Berlin/Heidelberg Springer-Verlag 01.06.2011; Springer; Springer Nature B.V; Springer Science & Business Media B.V
• Subjects: Adolescent; Adult; Advance Directives; Aged, 80 and over; Attitude of Health Personnel; Attitude to Death; Attitudes; Biological and medical sciences; Coma; Consciousness; End-of-life; Ethics; Europe; Euthanasia; Female; Fundamental and applied biological sciences. Psychology; Gender; General aspects; Health Surveys; Human health sciences; Humans; Hydration; Logistic Models; Male; Medical personnel; Medical sciences; Medicine; Medicine & Public Health; Middle Aged; Minimally conscious state; Neurologie; Neurology; Neuroradiology; Neurosciences; Original Communication; Patients; Persistent Vegetative State - psychology; Professional ethics; Professionals; Psychology. Psychoanalysis. Psychiatry; Psychology. Psychophysiology; Questionnaires; Religion; Retrospective Studies; Sciences de la santé humaine; Surveys and Questionnaires; Vegetative state; Young Adult; Europe; Belgium; Ethics; End-of-life; Survey; Vegetative state; Minimally conscious state; Euthanasia; Coma; Nervous system diseases; Attitude; Consciousness impairment; Neurological disorder
• ISSN: 0340-5354; 1432-1459; 1432-1459
• DOI: 10.1007/s00415-010-5882-z

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.