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Palliative care after a severe stroke: difficulties in decision-making in the acute phase.

Wojtkowiak, J., Hertogh, C., Depla, M., Francke, A., Visser, M., Widdeshoven, G. Palliative care after a severe stroke: difficulties in decision-making in the acute phase. Palliative Medicine: 2012, 26(4) 510-511. Abstract. 7th World Research Congress of the European Association for Palliative Care (EAPC), 7-9 juni 2012, Trondheim.
Stroke is the third leading cause of death in Western countries. However, there is still a lack of research in the palliative care needs of stroke patients and their families. Unlike cancer, stroke is not immediately related to palliative care. Because of the difficulty of assessing a prognosis, the acute nature of stroke and the focus in hospitals on stabilizing the patient’s condition, the needs for palliative care are often neglected. Palliative care often comes up very late in the disease progress or not at all, although about 20 % of Dutch stroke patients die in the first month after the stroke; (40 % in the age group older than 85). Furthermore, those who survive a severe stroke have to live with serious disabilities. The aim of this study is to describe the decision-making dilemmas that relatives face in the acute phase of the stroke and to present a normative approach of how to deal with issues of palliative care in the acute phase after a stroke. In the first part of this research the experiences of relatives of stroke patients will be investigated. The methods used are open interviews with relatives (n = ±24) of patients who died after the stroke or who survived with severe disabilities. In the selection of respondents we strive for variety in different sociobiographical factors. In the interviews a narrative approach is used, in order to reconstruct the decisions that were taken in the acute phase. Interview data are qualitatively analyzed by focusing on the ethical dilemmas and values described by the respondents. The interviews with relatives are ongoing at the moment and the first results will be presented. Issues that will be addresed in the presentation are: how the patients’ autonomy is respected in the decision-making about whether or not to start with a palliative policy; shared decision-making in the acute phase; relatives’ views on communication with health professionals about end-of life issues in the acute phase after the stroke. (aut. ref.)