I skuggan av en hotad existens : Om den onödiga striden mellan biologi och existens i vården av patienter med malignt lymfom

Sammanfattning: The purpose of this thesis is to describe what it is like to suffer from malignant lymphoma and to highlight the care given to these patients. A reflective lifeworld approach, founded in phenomenological philosophy, has been used. Data have been collected using interviews and have been analyzed using essence-seeking analysis. The results are founded upon three empirical studies and a philosophical excursus. The results are presented in four sections.The thesis describes how patients with malignant lymphoma live in limbo characterized by existential uncertainties, partly caused by the mortal threat of the disease and by failings in the actions of the healthcare staff. Patients fear dying when suffering from malignant lymphoma, regardless of whether the disease is a genuine medical threat to their life. Thus, there is a substantial need for existential support for these patients. However, the results show that deficiencies in existential support can lead to patients feeling objectified, which in turn increases their existential uncertainties. Care that is solely directed towards the physiological body and excludes the human as a subject can be experienced as a disparagement.Care that includes the patients’ lifeworld provides alleviated suffering and a possibility for the patients themselves to take an active part in the health process. Despite the healthcare staff’s genuine ambition to alleviate the suffering, patients’ existential questions are met with a degree of conflict; on the one hand they are a natural part of healthcare, and on the other the questions are of such character that they are not part of professional healthcare. A healthcare culture that does not fully acknowledge the importance of existential questions appears to be one of the greatest obstacles to a holistic healthcare approach. Furthermore, there appears to be a lack of shared strategies among the healthcare staff when meeting the patients’ existential questions. A conflict arises in an unnecessary battle between biology and existence, which in turn increases the patients’ existential insecurities.Medical knowledge is insufficient in caring for patients with malignant lymphoma. An understanding of caring science is needed in order for the care to become caring and able to meet the needs as described by patients with malignant lymphoma. Healthcare staff most be provided with sufficient support to meet the patients’ existential questions. The organization of healthcare is characterised by being a culture in which existential questions are not given sufficient attention. It seems that healthcare staff give priority to medical/technical tasks rather than conversations of existential character.