J Toporski1, T Jonveaux-Rivasseau2, C Lamouille-Chevalier3. 1. Unité de soins palliatifs, centre Paul-Spillmann, 1, rue Foller, 54000 Nancy, France. Electronic address: j.toporski@chru-nancy.fr. 2. Unité de soins palliatifs, centre Paul-Spillmann, 1, rue Foller, 54000 Nancy, France; Psychologie, groupe de recherche sur les communications (GRC), laboratoire interpsy EA 4432, université de Lorraine, BP 3397, 54000 Nancy, France. 3. Unité de soins palliatifs, centre Paul-Spillmann, 1, rue Foller, 54000 Nancy, France.
Abstract
INTRODUCTION: Sedation in palliative care meets a precise definition and corresponds to a medical practice. We assessed the comprehension of this practice by the French population. METHOD: In 2015, citizen expressed their views on the Claeys-Leonetti bill by means of a consultative forum made available on the Internet site of the National Assembly. The content of the messages filed, regarding the right to deep and continuous sedation until death was analyzed using the ALCESTE textual data analysis software, supplemented by a thematic analysis in order to identify the perception that Internet users had of this practice. RESULTS: Among the 1819 Internet users who participated in the forum, 67 expressed their views as Health professionals, 25 of whom were directly involved in palliative care, as well as 10 sick persons. Analysis with the ALCESTE software highlighted two classes of statements. The first dealing with deep and continuous sedation, reflecting the specificity of the discourse of the Internet users. The second one consisted of textual units in which the modal verbs were dominant and overrepresented, thus providing information on the participants' perceptions. The thematic analysis highlighted four themes: death, intent, treatment and fear. CONCLUSION: Deep and continuous sedation is perceived as a euthanasic practice or raises fear of such a drift. Provision of extended and accurate information to the population and health professionals is essential to ensure that this new model of sedation is integrated into the care of the terminally ill patients and their families.
INTRODUCTION: Sedation in palliative care meets a precise definition and corresponds to a medical practice. We assessed the comprehension of this practice by the French population. METHOD: In 2015, citizen expressed their views on the Claeys-Leonetti bill by means of a consultative forum made available on the Internet site of the National Assembly. The content of the messages filed, regarding the right to deep and continuous sedation until death was analyzed using the ALCESTE textual data analysis software, supplemented by a thematic analysis in order to identify the perception that Internet users had of this practice. RESULTS: Among the 1819 Internet users who participated in the forum, 67 expressed their views as Health professionals, 25 of whom were directly involved in palliative care, as well as 10 sick persons. Analysis with the ALCESTE software highlighted two classes of statements. The first dealing with deep and continuous sedation, reflecting the specificity of the discourse of the Internet users. The second one consisted of textual units in which the modal verbs were dominant and overrepresented, thus providing information on the participants' perceptions. The thematic analysis highlighted four themes: death, intent, treatment and fear. CONCLUSION: Deep and continuous sedation is perceived as a euthanasic practice or raises fear of such a drift. Provision of extended and accurate information to the population and health professionals is essential to ensure that this new model of sedation is integrated into the care of the terminally ill patients and their families.
Keywords:
Claeys-Leonetti law; Deep and continuous sedation; Démocratie participative; End of life; Euthanasia; Euthanasie; Fin de vie; Loi Claeys-Leonetti; Participatory democracy; Sédation profonde et continue