E. Seigneur

Comment aborder la mort avec les enfants et les familles

Taking care of a child or an adolescent in palliative stage is a testing work for health professionals in paediatric onco-hematology. The communication with the child at the end of life and his family is delicate but however essential to ensure quality cares while supporting trust. The continuation of a genuine relation and a regular information concerning the childs health help the parents to progressively understand the lack of possible cure and the future death of their child. This anticipation also allows to possibly discuss about conditions and place of death of the ill child or adolescent. The child or adolescent himself at the end of life can also feel the need for speaking about his situation. It is then for the adult, parent or health professional, to share with him his questionings and his possible worries in order to reduce his loneliness and his fears. To let be guided by the child allows to respect his progression and his wish to know more about it or not. Finally a support must also be offered for the siblings.

Mise au pointL’annonce des risques en cancérologie pédiatrique : consolider l’alliance thérapeutiqueRisk announcement in paediatric cancerology: Strengthen the therapeutic alliance

Although announcement of the risks related to treatment has become a general rule in the healthcare relationship, doctors, nurses and parents of severely ill children tend to feel uncomfortable in relation to this mandatory information. The work conducted by the AP-HP Espace éthique working party in collaboration with parents, healthcare personnel and a philosopher demonstrates the need to announce these risks, even beyond the legal framework, while bearing in mind the difficulties and hazards inherent to changes in legislation and by observing the philosophical values that subtend this legislation. Faced with the broad range of diverse and complex risks, the working party proposes a classification of risks and hierarchisation of the difficulties encountered by the doctor during this announcement, which is difficult to make, and difficult to hear, as intimately related to the childs quality of life. The very concept of the probability of a risk raises concepts that are difficult to accept: chance, randomness, and uncertainty. Informing the patient involves hearing as much as talking, listening as much as explaining and requires availability, time, space and an ability to listen to the patient. This article proposes several good practice guidelines designed to consolidate the therapeutic alliance by sharing the uncertainty of the risk and allowing the various partners to remain actors. Nonconfiscation of knowledge by doctors does not lead to a loss or transfer of their responsibility, but allows decisions to be taken in the context of the alliance, while taking the risks into account.

Comment aborder la mort avec les enfants et les familles ?How to discuss death with children and families?

Taking care of a child or an adolescent in palliative stage is a testing work for health professionals in paediatric onco-hematology. The communication with the child at the end of life and his family is delicate but however essential to ensure quality cares while supporting trust. The continuation of a genuine relation and a regular information concerning the childs health help the parents to progressively understand the lack of possible cure and the future death of their child. This anticipation also allows to possibly discuss about conditions and place of death of the ill child or adolescent. The child or adolescent himself at the end of life can also feel the need for speaking about his situation. It is then for the adult, parent or health professional, to share with him his questionings and his possible worries in order to reduce his loneliness and his fears. To let be guided by the child allows to respect his progression and his wish to know more about it or not. Finally a support must also be offered for the siblings.

Lieux et structures de prise en charge des adolescents atteints de cancer

La survenue d’un cancer chez un adolescent pose des problemes specifi ques sur le plan medical mais aussi psychologique, scolaire, social ou encore familial. a cette periode de la vie, marquee par une transition delicate de l’enfance vers l’âge adulte, le traitement d’un cancer necessite une reconnaissance et une prise en compte de l’ensemble de ces differents besoins afi n d’aider au mieux l’adolescent et ses proches a traverser cette experience. Cette tâche n’est pas toujours aisee pour les soignants en oncologie qui ne sont pas forcement familiers de ces enjeux lies a la survenue d’un cancer a l’adolescence.

L’annonce des risques en cancérologie pédiatrique

La reflexion menee au sein d’un groupe de l’Espace ethique de l’Assistance publique-Hopitaux de Paris, conjointement par des parents, des soignants et un philosophe, temoigne de la necessite d’informer sur les risques, au-dela du cadre legal et malgre le malaise qu’expriment souvent les equipes soignantes et les parents d’enfants gravement malades face a ce devoir d’information. Cette reflexion s’inscrit dans le cadre plus large de l’annonce en general et souligne la necessite de transmettre l’information aux differents partenaires qui prennent en charge l’enfant atteint de cancer tout au long de sa maladie et des traitements. Face a l’eventail des risques, leur variete et leur complexite, il est suggere une typologie des risques et une hierarchisation des difficultes rencontrees par le medecin lors de cette annonce. Cet article propose quelques reperes de bonnes pratiques visant a consolider l’alliance soignants-parents-enfant par le partage de l’incertitude du risque. Il indique la necessite d’une formation adaptee et d’adopter une attitude de questionnement individuel et en equipe.