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SUMMARY:A window on suffering: using qualitative research to study practic
 es surrounding palliative sedation for refractory symptoms - Professor Jan
 e Seymour\, Sue Ryder Care Professor of Palliative and End of Life Studies
 \, University of Nottingham.
DTSTART:20111101T123000Z
DTEND:20111101T140000Z
UID:TALK34053@talks.cam.ac.uk
CONTACT:Jane Fleming
DESCRIPTION:A significant minority of dying people experience refractory s
 ymptoms or extreme distress unresponsive to conventional therapies. In suc
 h circumstances\, sedation may be used to decrease or remove consciousness
  until death occurs. This practice is described in a variety of ways\, inc
 luding:  ‘palliative sedation’\, ‘terminal sedation’\, ‘continuo
 us deep sedation until death’\,  ‘proportionate sedation’ or ‘pall
 iative sedation to unconsciousness’. Surveys (relying on recall and resp
 onse 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 o
 f the practice in palliative care.  There are also questions about how to 
 explain international variation in the use of the practice. \nThe UNBIASED
  study (UK Netherlands Belgium International Sedation Study) comprises thr
 ee linked studies with separate funding sources in the UK\, Belgium and th
 e Netherlands. The aims of the study are to explore decision-making surrou
 nding the application of continuous sedation until death in contemporary c
 linical practice\, and to understand the experiences of clinical staff and
  decedents' informal care-givers of the use of continuous sedation until d
 eath and their perceptions of its contribution to the dying process.  To r
 ealize these aims\, a two-phase study has been designed. The study setting
 s 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 d
 evelop 30 patient-centred case studies in each country. To our knowledge\,
  this is one of the few studies which seek to take a qualitative perspecti
 ve on clinical decision making surrounding the use of continuous sedation 
 until death and the only one which includes the perspectives of nurses\, p
 hysicians\, as well as bereaved informal care-givers.  It has several pote
 ntial strengths\, weaknesses\, opportunities and threats associated with t
 he specific design of the study\, as well as with the sensitive nature of 
 the topic and the different frameworks for ethical review in the participa
 ting countries. This paper will address these issues\, drawing particularl
 y on experiences from the UK arm of the study\, which is funded by the ESR
 C.  \nBiography\nJane Seymour is Head of the Sue Ryder Care Centre for the
  Study of Supportive\, Palliative and End of Life Care at the School of Nu
 rsing\, Midwifery and Physiotherapy\, in the University of Nottingham. The
  Centre was formally launched on January 31st 2006 following a generous pr
 ivate donation to the University to enable the development of a new and co
 mprehensive research and education programme. Centre staff hold research g
 rants from research councils\, charities and a range of other sources\, an
 d run a substantial PhD programme with both ‘home’ and international s
 tudents. The Centre provides undergraduate and postgraduate opportunities 
 to qualified and experienced staff\, as well as short courses (both face t
 o face and distance learning) with funded places for practitioners encount
 ering 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 ca
 re research and education since the early 1990s. Her current research inte
 rests focus on advance care planning and other aspects of end of life deci
 sion-making\, palliative care for those with diseases other than cancer\, 
 and public education in end of life care.
LOCATION:Large Seminar Room\, Institute of Public Health\, Forvie Site\, R
 obinson Way\, Cambridge CB2 0SR
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