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Palliative care in the acute phase after a severe stroke: experiences of relatives.

Boer, M.E. de, Depla, M., Woijtkwiak, J., Francke, A., Visser, M.C., Widdershoven, G., Hertogh, C.M.P.M. Palliative care in the acute phase after a severe stroke: experiences of relatives. European Journal of Palliative Care: 2013 214-215. Abstract. In abstractbook. EAPC 2013. 13th World Congress of the European Association for Palliative Care (EAPC). 30 may - 2 june 2013, Prague.
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Aims: Palliative care has potentially a lot to offer to patients in the acute phase after a severe stroke, but its deliberation and decisions towards palliative care are limited in this phase. This study aims at providing insight into the experiences of relatives of stroke patients with the care provided in the acute phase and the ethical dilemma’s with regard to decision-making they (may) have encountered. Study design & method: A qualitative study using semistructured interviews was conducted with relatives of stroke patients with a severe stroke and a poor prognosis in the acute phase. The interviews took place 2-6 month after the stroke, were transcribed verbatim and subjected to qualitative analysis. Results: Preliminary results show that communication about prognosis and/or its uncertainty is at times limited, leading to relatives constructing false expectations. Essential care decisions such as the initiation of artificial nutrition are not always discussed with family members or experienced as a choice. [analysis of all data should be completed prior to the EAPC congress]. Conclusion: Preliminary results suggest that limited
communication of prognosis and (palliative) care options in the acute phase after a severe stroke between health care personnel and relatives of patients may prevent relatives from making choices towards palliative care.