title: Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life.
abstract: Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
authors.affiliation: Research Team 4569, Paris Descartes, Sorbonne Paris Cité, Paris, France, marcel-louis.viallard@nck.aphp.fr.
authors.forename: M L
authors.initials: ML
authors.lastname: Viallard
mesh_terms: D002648:Child; D019988:Children with Disabilities / Q000523:psychology*; D006801:Humans; D065126:Palliative Medicine / Q000379:methods / Q000592:standards*; D013727:Terminal Care / Q000379:methods / Q000592:standards*; D035862:Vulnerable Populations / Q000523:psychology*