La pratique éthique des soins palliatifs pédiatriques en équipe ressource : le care de second ordre

Following the French national strategy to develop palliative care promulgated in 2010, several regional pediatric palliative care teams have been implemented nationwide. Our work will present a fundamental ethical concept, which we call “second order care”.The primary mission of these teams is to integrate a palliative approach in all areas of health care, and they are especially dedicated to assisting health care professionals. For “second order care teams”, this entails advising and supporting “first order care teams” who directly provide for patients in palliative care. However, the daily practice of these second order care teams reveals underlying ethical tensions between the principle of justice which created these teams initially (palliative care must be available to all patients in need of such care) and the ethics of care (importance placed upon the singularity of each situation). In order to resolve these ethical tensions, we used a qualitative methodology known as “participant objectivation”.Second order care implies an ethical practice combining one’s disposition, outlook and activities, which are acquired by voluntary thought movements. The ethical aim of second order carers, with the help of inductive empathy, must be to assist first order carers in being autonomous in identifying and managing their own needs. Using clinical narratives, the second order team must adapt and harmonize the different temporalities in play: that of the patient, of their family and of the first order care team. Ultimately, second order care implies a major paradigm shift: to consider our inter-dependence in place of an illusionary autonomy. The concept of second order care, which can be extrapolated to other teams with identical missions, is a necessary contribution when considering the modernization of our health care system.Les équipes ressources régionales de soins palliatifs pédiatriques ont été créées en France, en 2010 dans le cadre d’une politique nationale de développement des soins palliatifs. Mon travail présente un concept aux fondements éthiques appelé « care de second ordre ».Ces équipes, dont la mission est l’intégration de la démarche palliative dans la pratique de tout professionnel de santé, sont particulièrement dédiées aux professionnels de santé. En effet, les professionnels de ces équipes de care de second ordre, doivent assurer conseil et soutien aux professionnels de care de premier ordre ayant la charge d’un patient en situation palliative. Or la pratique quotidienne de ce care de second ordre révèle des tensions éthiques entre le principe de justice qui sous-tend la création de ces équipes (tous les patients qui le nécessitent doivent avoir accès à des soins palliatifs) et les éthiques du care (l’importance de la singularité des situations). Pour résoudre ces tensions éthiques, nous avons utilisé une méthodologie qualitative appelée objectivation participante.Le care de second ordre suppose une pratique éthique, faite d’attitudes et d’activités qui s’acquièrent par un mouvement volontaire de la pensée. Avec l’aide de l’empathie inductive, le care de second ordre doit avoir pour visée éthique l’autonomisation du professionnel de care de premier ordre dans l’identification et la prise en charge de ses propres besoins. Grâce à la narration des histoires cliniques, le care de second ordre doit ajuster les temporalités en jeu, celles du patient, celles de ses proches et celles des professionnels de care de premier ordre. In fine, ce care de second ordre implique un changement majeur de paradigme : la considération de notre interdépendance en lieu et place de notre semblant d’autonomie. Ce concept de care de second ordre, a priori extrapolable aux équipes ayant les mêmes missions, contribue à la réflexion nécessaire sur la modernisation de notre système de santé

Décès en rémission complète des enfants traités pour une leucémie aiguë lymphoblastique (résultats du Protocole 58881 du Groupe pédiatrique de l'EORTC)

BESANCON-BU Médecine pharmacie (250562102) / SudocPARIS-BIUM (751062103) / SudocSudocFranceF

Place of death of children with complex chronic conditions : cross-national study of 11 countries

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. Conclusion: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally