L'équipe mobile de soins palliatifs en service de neurologie : présentation de deux groupes interdisciplinaires et pluriprofessionnels fruits d'un projet commun de diffusion de la démarche palliative et d'aide à la réflexion éthique

This article describes how a mobile team of palliative care and a department of neurology learned to cope with many complex end-of-life situations. After a brief introduction to inter-team cooperation, clinical work of the mobile team with patients and families and its cooperation with the neurology team are presented. The specificity of supportive care in neurology is also analyzed. Two interdisciplinary and multi-professional tools - the Palliative Care Resource Group and the Ethics Consultation Group - are described, with their activities and their goals. The Palliative Care Resource Group is a specific entity whose identity lies at the crossroads between commonly recognized organizational units: clinic staff, clinical practice, ethical or organizational analysis groups (Balint, 1960), discussion groups (Rusznievski, 1999), training groups. It has several objectives: 1) create a robust conceptual environment enabling the pursuit of palliative care practices without relying on the empty paradigm of stereotypical actions; if suffering cannot be avoided, psychic development and transformation can be promoted; 2) attempt to prevent caregiver burnout; 3) help support and strengthen the collective dimension of the team, learning a mode of care which goes beyond the execution of coded actions; 4) enhance the primary dimension of care, i.e. taking care, especially in clinical situations where conventional wisdom declares that “nothing more can be done.”; 5) promote group work so new ideas arising from the different teams influence the behavior of all caregivers. The Ethics Consultation Group organizes its work in several steps. The first step is discernment, clearly identifying the question at hand with the clinical staff. This is followed by a consultation between the clinical team, the patient, the family and the referring physician to arrive at a motivated decision, respecting the competent patient's opinion. The final step is an evaluation of the decision and its consequences. The Ethical Consultation Group, which meets at a scheduled time at a set place, unites the different members of the neurology and palliative care teams who come to a common decision. These specific moments have an important impact on team cohesion, creating a common culture and a convergence of individual representations about making difficult decisions. Specific clinical cases are described to illustrate some of the difficulties encountered in palliative care decision-making. These cases provide insight about the decision to create a palliative care gastrostomy for a man with progressive supranuclear palsy, the suffering experienced by a medical team caring for a young woman with Creutzfeldt-Jacob encephalopathy, or a woman's experience with the post-stroke life-and-death seesaw. Theoretical divisions, illustrated with clinical stories, can be useful touchstones for neurology teams.