BackgroundLittle is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians’ and the patients’ perspectives.Methods(1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews.ResultsIn conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the “no choice” models: 1) trying to resolve the dilemma via a technical answer or a “wait-and-see” posture, instead of involving the patients in the questioning and the thinking; and 2), giving a “last minute” choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients’ attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients.ConclusionsThis study indicate to what extent these difficult decisions are related to physicians’ and patients’ respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.

The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.

Fondé sur des entretiens réalisés avec 37 résidents vivant dans 15 établissements d’hébergement pour personnes âgées dépendantes (Ehpad), cet article se propose d’analyser leurs expériences variées du premier confinement. Dans un premier temps, il montre que l’expérience du confinement a pris des formes différentes en fonction des modes d’habiter en Ehpad. Ceux qui vivaient repliés dans leur chambre voient peu de différences avec la vie d’avant. Ceux qui habitaient l’Ehpad en s’appropriant les espaces collectifs tendent à percevoir le confinement comme une privation de ces espaces. Enfin, ceux qui étaient tournés vers l’extérieur de l’établissement insistent plutôt sur l’absence de liberté de circuler en dehors de l’Ehpad qui a marqué la période. Dans un second temps, l’article explore trois autres facteurs qui éclairent également les expériences du confinement : les modalités de confinement mises en place par l’Ehpad dans lequel ils résident, les ressources occupationnelles ou relationnelles que les Ehpad ont pu mobiliser et la trajectoire antérieure des résidents.

Certaines hospitalisations de personnes âgées sont qualifiées de « non pertinentes » parce qu’elles y reçoivent une prise en charge médicale, paramédicale et sociale qui pourrait être rendue à domicile ou dans des structures plus efficientes et mieux adaptées à leurs besoins ou à leurs situations. L’étude PAGE a pour objectif de comprendre les raisons des hospitalisations non pertinentes des personnes âgées ayant des troubles cognitifs légers à modérés et de décrire les conséquences sur la fin de leur vie. Comment penser, anticiper et adapter leurs besoins en aide et en soins relatifs à cette période de vie selon leurs souhaits ? 17 entretiens individuels semi-directifs ont été effectués auprès de personnes âgées, leur entourage personnel (n = 8) et professionnel (n = 14). Pour explorer leurs trajectoires, les entretiens ont été réalisés à leur entrée à l’hôpital puis renouvelés à chaque étape de leur parcours durant 6 mois. Les hospitalisations non pertinentes cristallisent la dénégation de la perte d’autonomie fonctionnelle. Alors que les personnes vivent des pertes, les discussions et prises de décisions pérennes quant à leur choix de fin de leur vie sont repoussées. Les hospitalisations non pertinentes surviennent lorsque ce quotidien n’est plus adapté et obligent l’entourage ou la personne âgée à prendre des décisions urgentes et contraires à leurs souhaits et besoins.