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Open Access Highly Accessed Study protocol

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study

Jane Seymour1*, Judith Rietjens23, Jayne Brown1, Agnes van der Heide3, Sigrid Sterckx24, Luc Deliens2 and the UNBIASED study team

Author affiliations

1 School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Queen's Medical Centre, Derby Road, Nottingham, NG7 2UH, UK

2 End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Jette, Belgium

3 Department of Public Health, Erasmus MC, University Medical Centre, P.O. Box 2040, 3000 CA, Rotterdam, Netherlands

4 Ghent University, Bioethics Institute Ghent, Blandijnberg 2, 9000 Gent, Belgium

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Citation and License

BMC Palliative Care 2011, 10:5  doi:10.1186/1472-684X-10-5

Published: 4 March 2011

Abstract

Background

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 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. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which 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. The UNBIASED study is part of the European Association for Palliative Care Research Network.

Methods/Design

To realize the study 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. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death.

Discussion

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.