• Marike E de Boer, Marja Depla, Joanna Wojtkowiak, Marieke C Visser, Guy A M Widdershoven, Anneke L Francke, and Cees M P M Hertogh.
• Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands m.deboer@vumc.nl.
• Palliat Med. 2015 May 1;29(5):451-7.

BackgroundDecision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient's values and preferences. However, little is known about how the patients' relatives experience the decision-making process.AimTo elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions.DesignAn exploratory qualitative interview approach guided by the principles of grounded theory.Settings/ParticipantsRelatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase.ResultsFour categories reflecting relatives' experiences were identified: (1) making decisions under time pressure, (2) the feeling of 'who am I' to decide, (3) reluctance in saying 'let her die' and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process.ConclusionA better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.© The Author(s) 2015.

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