title: Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients' involvement in specific therapies decision-making.
abstract: BACKGROUND
  Little 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.
  
  
  RESULTS
  In 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.
  
  
  CONCLUSIONS
  This 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.
authors.affiliation: Department of Pain Management - Palliative Care, Besancon University Hospital, 2 Bd Fleming, 25000, Besancon, France. ybeaussant@chu-besancon.fr.|Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France. ybeaussant@chu-besancon.fr.|Ethics Centre of Burgundy and Franche-Comté, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France. ybeaussant@chu-besancon.fr.
authors.forename: Yvan
authors.initials: Y
authors.lastname: Beaussant
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.|Ethics Centre of Burgundy and Franche-Comté, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.|Department of Psychology of Besancon, University of Franche-Comté, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Florence
authors.initials: F
authors.lastname: Mathieu-Nicot
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Lionel
authors.initials: L
authors.lastname: Pazart
authors.affiliation: Department of Oncology, Henri Mondor University Hospital, 51, avenue du Mal de Lattre de Tassigny 94010, Créteil cedex, France.
authors.forename: Christophe
authors.initials: C
authors.lastname: Tournigand
authors.affiliation: Palliative Care Unit, Notre Dame Hospital, Montréal University Hospital (CHUM), Montreal, Canada.
authors.forename: Serge
authors.initials: S
authors.lastname: Daneault
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.|Ethics Centre of Burgundy and Franche-Comté, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Elodie
authors.initials: E
authors.lastname: Cretin
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Aurélie
authors.initials: A
authors.lastname: Godard-Marceau
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Aline
authors.initials: A
authors.lastname: Chassagne
authors.affiliation: Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Hélène
authors.initials: H
authors.lastname: Trimaille
authors.affiliation: Inter-Disciplinary Supportive Care Department for the Oncology Patient, Institut Curie, 26 Rue d'Ulm, 75005, Paris, France.
authors.forename: Carole
authors.initials: C
authors.lastname: Bouleuc
authors.affiliation: Department of Psychology of Besancon, University of Franche-Comté, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Patrice
authors.initials: P
authors.lastname: Cuynet
authors.affiliation: Besancon University Hospital, Hematology, 2 Bd Fleming, 25000, Besancon, France.
authors.forename: Eric
authors.initials: E
authors.lastname: Deconinck
authors.affiliation: Department of Pain Management - Palliative Care, Besancon University Hospital, 2 Bd Fleming, 25000, Besancon, France.|Inserm CIT808, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.|Ethics Centre of Burgundy and Franche-Comté, Besancon University Hospital, 2 place St-Jacques, 25000, Besancon, France.
authors.forename: Régis
authors.initials: R
authors.lastname: Aubry
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002755:Choice Behavior; D003657:Decision Making; D005260:Female; D005602:France; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010817:Physician-Patient Relations / Q000941:ethics; D011446:Prospective Studies; D036301:Qualitative Research; D013727:Terminal Care / Q000941:ethics / Q000379:methods* / Q000523:psychology