Recherche sur la fin de vie, la nécessité d’un consensus : premiers résultats

Sante Publique. 2021 March-April;33(2):191-198. doi: 10.3917/spub.212.0191.
[Article in French]

Abstract

During the past 15 years, in France, like in many European countries, the attention paid to patients at the end of their lives has continued to grow. But in the meantime, only a few researchers have managed to collect reliable data on End-of-Life Care and to implement scientific studies describing the reality of these situations. This difficulty is due in particular to the lack of a recognized and operational definition of the end of life.Our objective is to explore the possibility of achieving consensus around a definition based on the isolated elements in the literature.A Delphi consensus approach has been conducted. A “Delphi” approach allows consensus to be achieved without the influence of leadership effects.The population of this study is the group of care providers who are members of the Société Française d’Accompagnement et de Soins Palliatifs (SFAP), whether they are professionals or volunteers. An electronic survey asked for the degree of approval of individuals for each of the proposed definitions on a Lickert scale. The first round of Delphi was proposed at the end of 2019 among palliative care actors. 1463 people responded to this questionnaire in one month. Two types of definition seem to dominate the other proposals. The first is related to an estimate of life expectancy: life expectancy of less than 15 days and less than one month. The second emerging definition is related to the evolution of a pathology: based on the fact of being in advanced or terminal phase of an incurable pathology.These results confirm that the end-of-life period can be seen from two points of view, the first in relation to the time left to live and the other in relation of the terminal phase of the disease which calls for a less clearly defined time.These two definitions are based on different approaches, one temporal and the other disease-centered. An alternative definition emerges from this study and will be tested in the second round of Delphi.

MeSH terms

  • Consensus
  • Death*
  • Delphi Technique
  • Humans
  • Palliative Care
  • Terminal Care*