Explore decision-making surrounding continuous sedation until death in contemporary clinical practice
A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used. Therapeutic (or palliative) sedation in the context of palliative medicine is the use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering. Surveys of medical decisions at the end of life raise questions about the use of sedation until death, and there are concerns about the use, intentions, risks and significance of the practice in palliative care delivery. 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 to conduct an in depth study of the use of this practice at the bedside in the three countries.
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 (Belgium, the Netherlands, the UK). These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death.
This study has several potential strengths, limitations, 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.
The UNBIASED study is part of the European Association for Palliative Care Research Network. It is an example of a partnership between colleagues from a wide span of disciplines, that seeks to further critical and informed debate in palliative care research.
Special Research Funds of the University of Ghent (BOF)