title: Patient participation in decision making at the end of life as seen by a close relative.
abstract: The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.
authors.affiliation: Department of Caring Sciences, Orebro University, S-701 82 Orebro, Sweden.
authors.forename: E
authors.initials: E
authors.lastname: Sahlberg-Blom
authors.forename: B M
authors.initials: BM
authors.lastname: Ternestedt
authors.forename: J E
authors.initials: JE
authors.lastname: Johansson
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D001943:Breast Neoplasms / Q000451:nursing / Q000523:psychology; D015179:Colorectal Neoplasms / Q000451:nursing / Q000523:psychology; D003657:Decision Making; D004993:Ethics, Nursing; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D015404:Nursing Methodology Research; D010358:Patient Participation; D011446:Prospective Studies; D036301:Qualitative Research; D013727:Terminal Care / Q000592:standards*