Participation des parents à la sédation en situation palliative de leur enfant : une amélioration de la prise en charge ? Point de vue des professionnels

Abstract

Proportionate sedation in paediatric palliative care is indicated to treat a refractory symptom experienced as unbearable. Sedation with midazolam by PCA pump is increasingly developed allowing symptom management by the child, sometimes by a caregiver or a parent. Parents are gradually being integrated into palliative care in an active and early way. But does the participation of parents in the sedation of their child allow an improvement of the management according to the professionals? In this prospective multicentred qualitative study, nine semi-structured interviews were conducted with health professionals, nurses, and physicians from different paediatric services. According to the professionals, the participation of parents in sedation allows, in certain circumstances, to improve the management of their child. The parents are actors in the relief of their child, which reinforces the bond of trust with the caregivers. The intention described by the interviewees is to help limit the suffering of the child, but also that of the parents, in the idea of a serene death, considering the risk of parental guilt linked to the confusion of deliberate acceleration of the end of life. Therefore, the participation of parents in the sedation of their child is part of a temporality linked to the illness that requires anticipation with the parents. The participation of the parents in the control of the PCA considers the singularity of each parent, of the child, and of the triangular relation particular to pediatrics.