title: Documentation of patients' participation in care at the end of life.
abstract: The aim of this study was to describe how patients' participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients' involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it.
authors.affiliation: The Sahlgrenska Academy at Göteborg University, Institute of Nursing, Box 457, SE 405 30 Göteborg, Sweden. Irma.Lindstrom@fhs.gu.se
authors.forename: Irma
authors.initials: I
authors.lastname: Lindström
authors.forename: Fannie
authors.initials: F
authors.lastname: Gaston-Johansson
authors.forename: Ella
authors.initials: E
authors.lastname: Danielson
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D001007:Anxiety / Q000517:prevention & control / Q000523:psychology; D003142:Communication; D003299:Cooperative Behavior; D003657:Decision Making; D004282:Documentation; D004327:Drinking Behavior; D004417:Dyspnea / Q000517:prevention & control / Q000523:psychology; D005247:Feeding Behavior; D006301:Health Services Needs and Demand; D006801:Humans; D007258:Informed Consent; D009723:Nurse-Patient Relations; D009730:Nursing Assessment; D015404:Nursing Methodology Research; D009737:Nursing Records; D010146:Pain / Q000517:prevention & control / Q000523:psychology; D010358:Patient Participation / Q000379:methods / Q000523:psychology; D026684:Personal Autonomy; D036301:Qualitative Research; D012189:Retrospective Studies; D013548:Sweden; D013727:Terminal Care / Q000379:methods / Q000523:psychology; D016312:Treatment Refusal