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.
From the patients point of view, the family has got a high status with regard to medical decision-making. In palliative cancer patients doctors should offer an early and continuous involvement of relatives in information and decision-making processes in order to reduce misjudgements and frustration within the families.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.