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Une des grandes difficultés dans la prise en charge palliative des patients atteints d’une démence est de déterminer à quel moment les patients souffrant de démence avancée doivent recevoir des soins palliatifs.

\n

Les facteurs prédictifs sont l’âge, la gravité de la démence, la dégradation fonctionnelle, la dépendance et la comorbidité (notamment, la dénutrition).

\n

Dans notre expérience, on s’aide dans un premier temps de ce que le malade a pu nous dire avant que l’évolution de sa maladie ne lui permette plus de s’exprimer. Dans un second temps, on utilise un questionnement simple issu de l’expérience du Dr Sebag-Lanoë [19], [20] and [21] :

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Résumé
Si la notion de soins palliatifs tend maintenant à être bien intégrée pour les pathologies cancéreuses très évoluées, elle commence à peine à être évoquée pour les patients ayant une maladie d'Alzheimer à un stade terminal. La maladie d'Alzheimer est un processus chronique et progressif qui entraîne une détérioration graduelle des fonctions cognitives et qui aboutit à une dépendance pour les activités de la vie quotidienne. Cette évolution lente et progressive permet au médecin d'anticiper les stades successifs de la maladie et en particulier de prévoir les soins à mettre en place au moment de la phase terminale. Cet article propose une revue de la littérature sur les soins palliatifs au cours de la maladie d'Alzheimer et des démences apparentées. Du fait de l'augmentation prévisible du nombre de personnes atteintes de cette maladie, une augmentation des besoins de soins palliatifs pour ces patients est prévisible. Actuellement, les soins palliatifs proposés aux patients atteints de maladie d'Alzheimer en phase terminale ne sont pas optimaux. Les médecins et le système de soins doivent évoluer pour améliorer la prise en charge de ces malades en fin de vie et de leurs aidants.
Although end-of-life care is a relatively common option for patients with terminal cancer, it has become available only recently for patients with Alzheimer's disease. Alzheimer's disease is a chronic process of gradual deterioration of cognitive ability and the resulting deficits in activities of daily living. The chronic disease course of Alzheimer's disease gives to the clinician the opportunity to look ahead and plan for the final stages of care. This article presents a review of palliative care interventions for patients with Alzheimer's disease and other dementias. End-of-life care for individuals with end-stage Alzheimer's disease is increasingly important because of the increasing number of patients with this disease. However, there are barriers to providing high-quality end-of-life care. Currently, palliative care is not optimal for Alzheimer's patients. Health care systems and clinicians should make efforts to improve the suffering of patients with this disease and their caregivers.

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Résumé
Plusieurs enquêtes françaises effectuées durant ces dernières années ont montré que 40 % environ des décès qui surviennent en réanimation pédiatrique sont consécutifs à des décisions de limitation ou d'arrêt des traitements de suppléance. Le Groupe francophone de réanimation et urgences pédiatriques (GFRUP) a donc souhaité fournir aux pédiatres réanimateurs des recommandations de bonne pratique dans ce domaine difficile et délicat. Dans une première partie de ce document, sont brièvement rappelés les principaux repères éthiques qui sous-tendent ces recommandations ainsi que les définitions des principaux termes couramment employés. La seconde partie contient les recommandations proprement dites, qui concernent différentes étapes : le processus décisionnel, la mise en oeuvre et les modalités d'application de ces décisions ainsi que l'accompagnement et le soutien des familles et des soignants en cas de décès de l'enfant.
Several recent French studies have revealed that 40% of death in pediatric intensive care units are associated with withdrawal or limitation of life saving treatments. Because such decisions are common, the Groupe francophone de réanimation et urgences pédiatriques (GFRUP) has decided to publish recommendations in order to help paediatricians dealing with those difficult issues and to improve their decisions. In a first part of the document the ethical principles that imply those guidelines are recalled, followed by definitions of the terms currently employed. The second part contains guidelines regarding decision making process, the way it is applied and organisation of relatives as well as paramedical and medical staff support when the death of a child occurs.

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