title: Patient participation in palliative care decisions: An ethnographic discourse analysis.
abstract: The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients' dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.
authors.affiliation: Department of Social and Preventive Medicine, Public Health Research Institute (IRSPUM), Université de Montréal, Montréal, Canada; e.belanger@umontreal.ca.
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Bélanger
authors.affiliation: Department of Family Medicine, McGill University, Montreal, Canada.
authors.forename: Charo
authors.initials: C
authors.lastname: Rodríguez
authors.affiliation: Department of Psychiatry, McGill University, Montreal, Canada.
authors.forename: Danielle
authors.initials: D
authors.lastname: Groleau
authors.affiliation: Department of Emergency and Family Medicine, Université Laval, Quebec City, Canada.
authors.forename: France
authors.initials: F
authors.lastname: Légaré
authors.affiliation: Division of Oral Health and Society, McGill University, Montreal, Canada.
authors.forename: Mary Ellen
authors.initials: ME
authors.lastname: MacDonald
authors.affiliation: Department of Family and Emergency Medicine, Université de Montréal, Montreal, Canada.
authors.forename: Robert
authors.initials: R
authors.lastname: Marchand
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000884:Anthropology, Cultural; D001291:Attitude of Health Personnel; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009726:Nurses; D010166:Palliative Care; D000070659:Patient Comfort; D010358:Patient Participation; D057240:Patient Preference; D026684:Personal Autonomy; D010820:Physicians; D011369:Professional-Patient Relations; D036301:Qualitative Research; D013727:Terminal Care; D035501:Uncertainty
keywords: Palliative care; decision-making; discourse analysis; patient participation; qualitative research