Informer en soins palliatifs. Regards de malades hospitalisés en unité de soins palliatifs et de leurs proches

Providing information to patients and their families has become a right and a duty. It is indeed a founding principle of palliative care. The aim of this study was to go beyond professional and regulatory discourse about information to be delivered to persons at the end of life and to obtain the less well-known point of view of patients and their relatives. Twenty-five patients and 25 family-members were interviewed in five palliative care units (PCUs) from September 2005 to May 2006. Analysis of the interviews identified four main results and elements for discussion: factors leading to satisfaction and dissatisfaction for the persons interviewed with regard to the information received; the strong overlapping in this care context of knowing “how to inform”, knowing “how to communicate” and interpersonal skills; the strong perception of the persons interviewed concerning efforts in communication displayed by the team; the extreme diversity of needs and expectations of each person, which involves more adjustment of information to be delivered. In a political context of the broadening of palliative culture to all the services involved in caring for persons at the end of life, these reflections appear significant. What's more, it is an important undertaking when we see the positive impact, which techniques used by the team had on numerous patients and families interviewed within the framework of this survey.