23 octobre 2019

Lors de son adoption en juin 2014, la Loi concernant les soins de fin de vie, qui encadre aussi bien les soins palliatifs que l’aide médicale à mourir, a fait l’objet de débats intenses et a soulevé la controverse. Depuis, les demandes pour bénéficier de l’aide médicale à mourir n’ont cessé de croître au Québec, et ce, bien qu’une personne sur trois qui en a fait la demande se soit vu refuser l’accès.

Dans certains cas, malgré tous les efforts, les traitements, la ténacité et le courage dont il a pu faire preuve, il arrive qu’un patient ne parvienne pas à remporter le combat contre la maladie. Et lorsque ses souffrances deviennent intolérables, ce patient a le droit de recevoir des soins de fin de vie, lesquels lui permettront de les atténuer et de mourir en toute dignité.

LE DROIT DE RECEVOIR DES SOINS DE FIN DE VIE

Les soins de fin de vie couvrent deux aspects : les soins palliatifs et l’aide médicale à mourir.

Les soins palliatifs désignent des soins, administrés à une personne en phase terminale, visant à améliorer sa qualité de vie en la soutenant et en soulageant sa souffrance. Ces soins n’ont pas pour but de hâter ou de retarder la mort. Ils sont adaptés aux besoins de chaque personne et sont offerts grâce à la collaboration d’une équipe interdisciplinaire, en collaboration avec le patient lui-même et ses proches.

Lorsque les soins palliatifs n’arrivent plus à soulager les souffrances, il est possible pour la personne de recourir à l’aide médicale à mourir. L’aide médicale à mourir consiste à administrer des médicaments ou des substances à une personne en fin de vie, à la demande de celle-ci, dans le but de soulager ses souffrances en entraînant son décès. Cette option est soumise à certaines conditions et est encadrée de manière stricte par la Loi concernant les soins de fin de vie.

Ainsi et conformément à l’article 26 de la Loi, seule la personne qui exprime clairement sa requête écrite de manière libre et éclairée, et qui en outre satisfait aux exigences cumulatives suivantes, pourra demander l’aide médicale à mourir :

  • être majeure;
  • être apte à consentir aux soins, c’est-à-dire être en mesure de comprendre la situation et les renseignements transmis par les professionnels de la santé ainsi que de prendre des décisions;
  • être en fin de vie;
  • être atteinte d’une maladie grave et incurable;
  • avoir une situation médicale qui se caractérise par un déclin avancé et irréversible de ses capacités;
  • éprouver des souffrances physiques et psychologiques constantes, insupportables et qui ne peuvent être apaisées dans des conditions jugées tolérables.

IL RESTE DES DÉFIS À RELEVER

Bien que bénéficier des soins de fin de vie soit un droit, la Commission sur les soins de fin de vie a constaté dans son Rapport sur la situation sur les soins de fin de vie au Québec1, déposé le 3 avril 2019, plusieurs problématiques (rapport disponible sur le site Web de l’Assemblée nationale).

Tout d’abord, le manque d’accessibilité aux soins palliatifs pour certaines catégories de patients (notamment les clientèles pédiatrique et non oncologique) et dans certaines régions. Ensuite, de nombreuses personnes ayant réclamé l’aide médicale à mourir depuis l’adoption de la Loi n’ont pas pu l’obtenir, et ce, bien qu’elles remplissaient toutes les conditions. Certaines sont décédées avant l’évaluation de leur demande d’aide médicale à mourir ou l’administration de celle-ci. D’autres ne répondaient plus à toutes les conditions, et notamment celle de l’aptitude à consentir.

Certains jugent également la Loi trop restrictive. Par exemple, les conditions cumulatives évoquées ci-devant font que sont exclues automatiquement de l’aide médicale à mourir les personnes souffrant de divers types de démence ou de pertes cognitives telles que la maladie d’Alzheimer par exemple.

Au début du mois d’octobre 2019, Québec a cependant accepté d’élargir l’accès, après qu’une décision ait été rendue par la Cour supérieure du Québec selon laquelle « les personnes atteintes d’une maladie grave et incurable, qui ont de grandes souffrances physiques ou psychologiques et dont le déclin des capacités est avancé, doivent avoir accès à l’aide médicale à mourir même si elles ne sont pas en fin de vie ».

FAIRE RESPECTER SES DROITS

Afin d’avoir plus de détails sur la marche à suivre pour demander l’aide médicale à mourir, le rôle du médecin et le déroulement de la procédure, vous pouvez consulter le site Web d’éducaloi.

Si vous pensez que votre droit à recevoir des soins de fin de vie n’est pas respecté, vous pouvez appeler le Centre d’assistance et d’accompagnement aux plaintes (CAAP) de votre région au numéro sans frais 1 877-767-2227 ou consulter notre site fcaap.ca. Les services sont gratuits et confidentiels !

Nathalie Dubois
Directrice adjointe
Fédération des Centres d’assistance et d’accompagnement aux plaintes (FCAAP)

1 Rapport sur la situation des soins de fin de vie au Québec – Commission sur les soins de fin de vie – Documents déposés – Assemblée nationale du Québec – Avril 2019
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