Existential Issues in Palliative Care

University dissertation from Ingrid Ågren Bolmsjö, Department of Medical Ethics, Stora Gråbrödersgatan 16, 22222 Lund, Sweden

Abstract: The main purpose of this dissertation is to describe how terminally ill patients experienced their situation, and what their views about the future were. Further, the experiences and attitudes of relatives of such patients, and of health care professionals, were also central. Focus was on existential issues, such as autonomy, meaning, guilt, relations, dignity, and communication. In the first paper, a case based on actual facts was described and analysed. The study showed that in every situation where a decision has to be made, there is often more than one alternative interpretation of the situation and how to act. The studies in the other papers comprised 18 patients in palliative care (diagnosed with advanced cancer and ALS) and 8 close relatives of ALS patients. Moreover, 7 caregivers, formal and informal, were interviewed in a focus group. Data were collected from in-depth interviews with patients and relatives and from focus group interviews with caregivers. The results showed that patients experienced a number of problems concerning existential issues and consider these questions important. The patients diagnosed with cancer wished to be able to discuss existential issues with someone. The ALS patients experienced problems particularly in connection with physical inability. Close relatives of ALS patients need more information about the disease and the process of the disease and have to be supported and viewed as individuals with their own preferences. One practical question is: Who's responsibility is it to try to meet existential needs in palliative care? The results of the focus group study indicate that, depending on the circumstances, several different solutions can be sufficiently satisfactory, and possible ways of handling the problems are suggested.

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