Le processus décisionnel des limitations et des arrêts de traitements (LAT) est encadré par la loi Leonetti. La démarche de non-réanimation s’inspire du même processus décisionnel pour les enfants en situation palliative. Pour répondre aux exigences de traçabilité et de collégialité et favoriser la communication, l’équipe ressource de soins palliatifs pédiatriques d’Aquitaine a créé une fiche de transmission transversale traçant les étapes de la réflexion.

Étude rétrospective évaluant les fiches ayant tracé les décisions de LAT.

Cinquante-huit fiches avaient été remplies, majoritairement en réanimation (71 %). L’âge médian des enfants était de 1,75 mois (0,2–34,5). La collégialité avait été systématiquement respectée. La partie la moins renseignée (53 %) concernait la retranscription des entretiens d’annonce de la décision prise avec les familles. Soixante-dix-neuf pour cent des enfants avaient été transférés du service à l’origine de la rédaction de la fiche avec la transmission de ces informations.

Le nombre de fiches remplies montre l’intérêt que ce document a suscité bien qu’on ne puisse pas garantir l’exhaustivité. Cet outil a permis une formalisation des décisions prises et facilité la transmission des informations. La traçabilité des échanges avec les familles doit être améliorée. La fiche a permis d’introduire la démarche palliative comme support à la réflexion de la démarche de non-réanimation.

Grâce à cet outil, les conditions de décisions de LAT, la transmission de l’information et la continuité des soins ont été améliorées.

In France, a legal framework and guidelines state that decisions to limit treatments (DLT) require a collaborative decision meeting and a transcription of decisions in the patient's file. The do-not-attempt-resuscitation order involves the same decision-making process for children in palliative care. To fulfill the law's requirements and encourage communication within the teams, the Resource Team in Pediatric Palliative Care in Aquitaine created a document shared by all children's hospital units, tracing the decision-making process. This study analyzed the decision-making process, quality of information transmission, and most particularly the relevance of this new “collaborative decision-making for reasonable care” card.

Retrospective study evaluating the implementation of a traceable document relating the DLT process. All the data sheets collected between January and December 2013 were analyzed.

A total of 58 data sheets were completed between January and December 2013. We chose to collect the most relevant data to evaluate the relevance of the items to be completed and the transmission of the document, to draw up the patients’ profile, and the contents of discussions with families. Of the 58 children for whom DLT was discussed, 41 data sheets were drawn up in the pediatric intensive care unit, seven in the oncology and hematology unit, five in the neonatology unit, four in the neurology unit, and one in the pneumology unit. For 30 children, one sheet was created, for 11 children, two sheets and for two children, three sheets were filled out. Thirty-nine decisions were made for withholding lifesaving treatment, 11 withdrawing treatment, and for five children, no limitation was set. Nine children survived after DLT. Of the 58 data sheets, only 31 discussions with families were related to the content of the data sheet. Of the 14 children transferred out of the unit with a completed data sheet, it was transmitted to the new unit for 11 children (79 %).

The number of data sheets collected in 1 year shows the value of this document. The participation of several pediatric specialities’ referents in its creation, then its progressive presentation in the children's hospital units, were essential steps in introducing and establishing its use. Items describing the situation, management proposals, and adaptation of the children's supportive care were completed in the majority of cases. They correspond to a clinical description, the object of the discussion, and the daily caregiver's practices, respectively. On the other hand, discussions with families were related to the card's contents in only 53 % of the cases. This can be explained by the time required to complete the DLT process. It is difficult for referring doctors to systematically, faithfully, and objectively transcribe discussions with parents. Although this process has been used for a long time in intensive care units, this document made possible an indispensable formalisation in the decision-making process. In other pediatric specialities, the sheet allowed introducing the palliative approach and was a starter and a tool for reflection on the do-not-attempt-resuscitation order, thus suggesting the need for anticipation in these situations.

With the implementation of this new document, the DLT, data transmission, and continuity of care conditions were improved in the children's hospital units. Sharing this sheet with all professionals in charge of these children would support homogeneity and quality of management and care for children and their parents.