Spiritual /existential issues in palliative care. With special reference to patients with brain tumours and their spouses

Sammanfattning: Spiritual/existential questions are activated when death becomes a real threat, regardless of whether one has an atheistic or a religious background. Since health care staff are often in charge of severely ill and dying people, they should be able to offer situation-bound support in existential crises, and also to know when to call for expert assistance such as the hospital chaplain.The aims of this thesis were to survey how spiritual/existential issues, needs and existential pain are comprehended and prioritised by different groups: patients with brain tumours and their spouses, nurses, hospital chaplains and physicians. Methods and Material: Qualitative interviews with hermeneutic and phenomenographic analysis (studies II-IV, patients n = 20; relatives n =16; nurses n=16), and questionnaires with content analysis (studies I,V,VI, nurses n =141; palliative care physicians, n=111; pain specialists n=104; hospital chaplains n=172).Results: Nurses showed a willingness to pay attention to spiritual and existential needs, but they had difficulty in defining what such care should include. Existential support was seldom practised at their own ward (I, IV). The patients and their spouses had, to a great extent, desired existential support (IV). Most of the patients were preoccupied with death anxiety although it was seldom expressed directly, but was transformed by means, for example, of contradictions (II). Patients and their spouses found different coping strategies for the difficult situation. Important factors were comprehensibility and manageability, which were facilitated by information-seeking strategies and social support. Above all, finding a meaning was central to quality- of- life and was created by close relationships, faith and work. A crucial factor was whether the person had a fighting spirit that motivated him/her to go on (III). Meaning-related issues were also frequently posed to hospital chaplains. Besides issues of death, dying and relationships/separations, a large number of questions dealt with somatic issues such as pain, fear of suffocation, and illness in general. Few issues were explicitly religious (V). Definitions of "existential pain" proposed by different categories of professionals were studied in study VI. Presently there is no clear definition. Hospital chaplains define it exclusively as existential suffering, with an emphasis on existential guilt and unresolved religious questions without connection to physical pain. Palliative physicians focus on issues of meaning and anxiety about dying, which can both amplify suffering from pain as well as reciprocally interact with it, which definitely reduces quality of life regardless of whether or not somatic pain is present. Pain specialists emphasise the pain of living, particularly in relation to chronic pain. Conclusion: Health care staff need guidance and education in spiritual /existential issues, as they are central to patients with acute, life-threatening illness and patients in palliative care. Such knowledge and competence are important complements to medical care, as physical and existential factors obviously are closely linked and mutually interact.