<p>The main purpose of the present study was to obtain an in-depth understanding of what the final phase of life was like for a group of gravely ill and dying cancer patients, with focus on autonomy, dependency and quality of life. The specific aims were to: 1) describe the patients' autonomy and how the attitudes of relatives and staff promoted/hindered patient participation in decision-making, 2) describe how the patients assessed their quality of life in two care cultures, 3) describe how members of the care team prognosticated the patients' remaining survival time, and 4) investigate continuity of care site in two different care cultures during the patients' final month of life. The theoretical framework consisted of Weisman's concept of an appropriate death, and an ethical perspective based on a dialogical ethic and truthfulness.</p><p>The study comprised 56 consecutively selected adult cancer patients. Data was collected via retrospective interviews with relatives, quality of life assessments by the patients, prognoses/motivations from members in the care team, and register data on the utilisation of forms of care. Both qualitative and quantitative methods were used. </p><p>Four categories respecting autonomy were found; the dying patients exercised their autonomy as self-determiners, co-determiners, delegators and nonparticipators. The co-determiners and delegators practised "shared autonomy" in interaction with relatives and staff, and a dialogue characterised by truthfulness was typical of the interplay. In the assessment of quality of life, half of the patients assessed themselves as satisfied/somewhat satisfied with their situation. The "cognitive-" and "emotional functioning" differed least from that of a normal population, while "physical-", "role functioning" and "global health status/quality of life" differed most. The prognosticated and the actual remaining survival time were in agreement for 19/51 patients (± 0.5 months). Some resistance to prognosticating emerged. The members of the care team used different forms of knowledge to motivate their prognostication. Continuity in terms of care site was fairly high for the majority of dying patients. To a great extent, organisational and structural factors determined the choice of care form. </p>
| Identifer | oai:union.ndltd.org:UPSALLA/oai:DiVA.org:uu-590 |
| Date | January 2001 |
| Creators | Sahlberg Blom, Eva |
| Publisher | Uppsala University, Department of Public Health and Caring Sciences, Uppsala : Acta Universitatis Upsaliensis |
| Source Sets | DiVA Archive at Upsalla University |
| Language | English |
| Detected Language | English |
| Type | Doctoral thesis, comprehensive summary, text |
| Relation | Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, 0282-7476 ; 997 |
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