The aim of this study was to explore and describe how Flemish nurses experience their involvement in the care of hospitalized patients with dementia, particularly in relation to artificial nutrition or hydration (ANH). We interviewed 21 hospital nurses who were carefully selected from nine hospitals in different regions of Flanders. 'Being touched by the vulnerability of the demented patient' was the central experience of the nurses, having great impact on them professionally as well as personally. This feeling can be described as encompassing the various stages of the care process: the nurses' initial meeting with the vulnerable patient; the intense decision-making process, during which the nurses experienced several intense emotions influenced by supporting or hindering contextual factors; and the final coping process, a time when nurses came to terms with this challenging experience. From our examination of this care process, it is obvious that nurses' involvement in ANH decision-making processes that concern patients with dementia is a difficult and ethically sensitive experience. On the one hand, the feeling of 'being touched' can imply strength, as it demonstrates that nurses are willing to provide good care. On the other hand, the feeling of 'being touched' can also imply weakness, as it makes nurses vulnerable to moral distress stemming from contextual influences. Therefore, nurses have to be supported as they carry out this ethically sensitive assignment. Practical implications are given.
Given their knowledge and practice skills, nurses are in a prime position to contribute valuably to decision-making processes. Nevertheless, they remain sidelined. For nurses to receive sufficient recognition, their decision-making tasks and responsibilities need to be clarified and made manifest to other participants.
To reach optimal care and nurse job satisfaction, nurse-physician communication during artificial nutrition or hydration decision-making should be an open dialogue characterised by mutual respect and understanding.
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