title: [Patients as partners. Tumor patients and their participation in medical decisions].
abstract: Between March 2002 and August 2003 as part of the research project "Patients as partners -- tumour patients and their participation in medical decisions" tumour patients undergoing palliative therapy (n=272) were interviewed and asked about their level of information, their desired place to die and whether they had prepared an advance directive. Furthermore, 72 relatives of deceased patients who had been looked after by the project's palliative care team were given a similar questionnaire including questions concerning their knowledge about disease and prognosis, the actual place of death and the relevance of advance directives. According to patients and relatives, information particularly about prognosis is unsatisfactory. Of the inter-viewed patients, 75% said they wanted to die at home and 15% in a hospital. According to their relatives, 36% of the patients looked after by the palliative care team had an advance directive. The survey of the relatives showed a significant relation between the preparation of an advance directive and dying at the desired place. According to the relatives, medical and health reasons, hope for an improvement up to the very end,acute worsening of the condition and deficits in medical care were important reasons for dying in hospital against the patient'swish. In future, advance directives should be used as an aid for communication and the planning of care. Therefore, cooperation between doctors and patients based on a partnership is necessary. The required competence in communication should be improved.
authors.affiliation: Modellprojekt "Patienten als Partner", Friedrich-Schiller-Universität Jena, Jena. Birgitt.Oorschot@med.uni-jena.de
authors.forename: B
authors.initials: B
authors.lastname: van Oorschot
authors.forename: C
authors.initials: C
authors.lastname: Hausmann
authors.forename: N
authors.initials: N
authors.lastname: Köhler
authors.forename: K
authors.initials: K
authors.lastname: Leppert
authors.forename: S
authors.initials: S
authors.lastname: Schweitzer
authors.forename: K
authors.initials: K
authors.lastname: Steinbach
authors.forename: R
authors.initials: R
authors.lastname: Anselm
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D016009:Chi-Square Distribution; D003627:Data Interpretation, Statistical; D003657:Decision Making; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D010166:Palliative Care; D010358:Patient Participation; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires