Professor Jane Seymour

Sue Ryder Care Professor of Palliative and End of Life Studies, University of Nottingham.

Tuesday 1 November 2011, 12.30pm – 2pm

Qualitative Research Forum Open Meeting

Large Seminar Room, IPH

Forvie Site

 

A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies: sedation may be used to decrease or remove consciousness until death occurs. Surveys (relying on recall and response to fixed categories) show large unexplained variation in incidence of sedation at the end of life across countries/care settings and there are ethical concerns about the use, intentions, risks and significance in palliative care. The UNBIASED study (UK Netherlands Belgium International Sedation Study) aims to explore decision-making surrounding continuous sedation until death in contemporary clinical practice, and understand the experiences of clinical staff and decedents’ informal care-givers and their perceptions of its contribution to the dying process.  To our knowledge this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers.  Its potential strengths, weaknesses, opportunities and threats (associated with the study design, the sensitive nature of the topic and the different frameworks for ethical review in the participating countries) will be addressed, drawing particularly on experiences from theUKarm of the study, which is funded by the ESRC.