UNBIASED - International Sedation Study
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.
Terminal sedation: practice, perspectives and ethical analysis
This research projects wants to investigate the practice of continuous sedation (or terminal sedation) where a physician uses sedatives to lower a patient’s consciousness until death follows. This project has two specific goals.The first goal is to investigate the ethical side of continuous sedation by answering the fundamental research question: “under what circumstances can continuous sedation until death be justified?” To answer this question we will examine existing justifications for the practice and judge their relevance and internal coherence. Attention will be given to, for example, patient autonomy, the application of the principle of double effect and the role of proportionality. Finally, a normative framework of our own will be brought forward that allows for coherent thinking about continuous sedation.The second goal is gaining empirical insight into how the practice is experienced by physicians, nurses and relatives. For this purpose, a qualitative method using in depth interviews will be used. The same research will also be performed in The Netherlands and the UK (The UNBIASED Study) allowing for international comparison.The global aim of this project is then to bring together ethics and empirical data to gain a profound insight into continuous sedation at the end of life.
Funding: Special Research Funds of the University of Ghent (BOF)
Researcher: Dr. Kasper Raus
Relieving suffering at the end of life: A study in three European countries
In the last phase of life, patients wish to be comfortable and free from suffering. When symptoms remain uncontrollable despite optimal palliative care, palliative sedation, i.e. reducing the patient’s consciousness and thus the awareness of suffering, can be used as an option of last resort. Although palliative sedation is generally considered to highly contribute to the patient’s quality of dying, it has become the subject of many nationally and internationally medical, ethical and societal debates. In 2007, palliative sedation was used in 14.5% of all deaths in Flanders. The main aim of this study is to gain insight in the characteristics of the practice of palliative sedation and its contribution to the patient’s quality of dying and the wellbeing of their relatives in three countries: Flanders, the Netherlands and the UK. It has an innovative mixed-methods design, consisting of quantitative analyses of existing high quality databases and 270 qualitative interviews with physicians, nurses and relatives. The study will improve our understanding of the clinical characteristics and determinants of terminal sedation, and will enable the development of evidence-based strategies to improve this end-of-life practice.
Funding: Research Foundation Flanders (FWO), Flemish League against Cancer
Promoter: Prof.dr. Judith Rietjens
Special Research Funds of the University of Ghent (BOF)