Abstract

A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: ‘palliative sedation’, ‘terminal sedation’, ‘continuous deep sedation until death’, ‘proportionate sedation’ or ‘palliative sedation to unconsciousness’. Surveys (relying on recall and response to fixed categories) show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. The UNBIASED study (UK Netherlands Belgium International Sedation Study) comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents’ informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. To realize these aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. 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. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries. This paper will address these issues, drawing particularly on experiences from the UK arm of the study, which is funded by the ESRC . Biography Jane Seymour is Head of the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care at the School of Nursing, Midwifery and Physiotherapy, in the University of Nottingham. The Centre was formally launched on January 31st 2006 following a generous private donation to the University to enable the development of a new and comprehensive research and education programme. Centre staff hold research grants from research councils, charities and a range of other sources, and run a substantial PhD programme with both ‘home’ and international students. The Centre provides undergraduate and postgraduate opportunities to qualified and experienced staff, as well as short courses (both face to face and distance learning) with funded places for practitioners encountering issues in palliative and end of life care for the first time. Jane is a nurse and a social scientist, and has been involved in palliative care research and education since the early 1990s. Her current research interests focus on advance care planning and other aspects of end of life decision-making, palliative care for those with diseases other than cancer, and public education in end of life care.