Marike E de Boer1, Marja Depla2, Joanna Wojtkowiak3, Marieke C Visser4, Guy A M Widdershoven5, Anneke L Francke6, Cees M P M Hertogh2. 1. 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. 2. Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. 3. Department of Care and Wellbeing, University of Humanistic Studies, Amsterdam, The Netherlands. 4. Department of Neurology, VU University Medical Center, Amsterdam, The Netherlands. 5. Department of Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. 6. NIVEL - Netherlands Institute for Health Services Research, Utrecht, The Netherlands Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Abstract
BACKGROUND: Decision-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. AIM: To 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. DESIGN: An exploratory qualitative interview approach guided by the principles of grounded theory. SETTINGS/PARTICIPANTS: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. RESULTS: Four 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. CONCLUSION: A 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.
BACKGROUND: Decision-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. AIM: To elicit the perspective of relatives of severe strokepatients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions. DESIGN: An exploratory qualitative interview approach guided by the principles of grounded theory. SETTINGS/PARTICIPANTS: Relatives of severe strokepatients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. RESULTS: Four 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. CONCLUSION: A 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.
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