title: Is good 'quality of life' possible at the end of life? An explorative study of the experiences of a group of cancer patients in two different care cultures.
abstract: The purpose of this paper was to explore how a group of gravely ill patients, cared for in different care cultures, assessed their quality of life during their last month of life. The study material comprised quality of life assessments from 47 cancer patients, completed during their last month of life. Two quality of life questionnaires, the EORTC QLQ-C30 and a psychosocial well-being questionnaire, were used. The data were treated in accordance with instructions for the respective questionnaires, and the results are presented primarily as means, mostly at the group level. Assessments from patients in two different care cultures, care-orientated and cure-orientated, were compared. The results show that despite having an assessed lower quality of life in many dimensions than people in general, several patients experienced happiness and satisfaction during their last month of life. 'Cognitive functioning' and 'emotional functioning' were the dimensions that differed least from those of the general population, and 'physical functioning', 'role functioning' and 'global health status/quality of life' differed the most. 'Fatigue' showed the highest mean for the symptom scales/items. There was a tendency for those cared for in the cure-orientated care culture to report more symptoms than those in the care-orientated care culture. An exception to this was 'pain', which was reported more often by those in the care-orientated care culture. The implications of the results are discussed from different angles. The significance of knowledge concerning how patients experience their quality of life is also discussed with respect to the care and the planning of care for dying patients.
authors.affiliation: Department of Public Health and Caring Sciences, Uppsala University, Sweden. eva.sahlberg-blom@ivo.oru.se
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: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003071:Cognition; D018864:Cultural Diversity; D004644:Emotions; D004645:Empathy; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000451:nursing / Q000523:psychology*; D015404:Nursing Methodology Research; D015279:Organizational Culture; D009937:Organizational Objectives; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013548:Sweden; D013727:Terminal Care / Q000458:organization & administration* / Q000523:psychology*