General practitioners' report of continuous deep sedation until death for patients dying at home: A descriptive study from Belgium

Abstract

Background: Palliative sedation is increasingly used at the end of life by general practitioners (GPs). Objectives: To study the characteristics of one type of palliative sedation, ‘continuous deep sedation until death’, for patients dying at home in Belgium. Methods: SENTI-MELC, a large-scale mortality follow-back study of a representative surveillance network of Belgian GPs was conducted in 2005–2006. Out of 415 non-sudden home deaths registered, we identified all 31 cases of continuous deep sedation until death as reported by the GPs. GPs were interviewed face-to-face about patient characteristics, the decision-making process and characteristics of each case. Results: 28 interviews were conducted (response rate 28/31). 19 patients had cancer. 19 patients suffered persistently and unbearably. Pain was the main indication for continuous deep sedation (15 cases). In 6 cases, the patient was competent but was not involved in decision making. Relatives and care providers were involved in 23 cases and 18 cases, respectively. Benzodiazepines were used in 21 cases. During sedation, 11/28 of patients awoke, mostly due to insufficient medication. In 13 cases, the GP partially or explicitly intended to hasten the patient's death.

Conclusion: Continuous deep sedation until death, as practiced by Belgian GPs, is in most cases used for patients with unbearable suffering. Competent patients are not always involved in decision making while in most cases, the patient's family is.

Key words::

• Continuous deep sedation until death
• palliative sedation
• end-of-life care
• decision making
• general practitioners

Acknowledgements

The authors thank all sentinel GPs for their contribution to this study; the ‘Vlaamse Liga tegen Kanker’ for the research grant ‘Emmanuel van der Schueren’ and project support and Koen Meeussen, MD (Vrije Universiteit Brussel) and Tinne Smets, MD (Vrije Universiteit Brussel) for the advice.

The research on which this paper is based is linked to a larger project, the ‘UNBIASED’ study (UK—Netherlands—Belgium InternAtional SEDation study), which is a collaboration between research teams in UK, Belgium and the Netherlands with funding from the Economic and Social Research Council (UK) (grant no: RES-062-23-2078), Research Foundation Flanders (BE), the Flemish Cancer League (BE), the Special Research Funds of the University of Ghent (BE), Netherlands Organisation for Scientific Research (NL) and the Netherlands Organisation for Health Research and Development (NL). For information, contact Professor Jane Seymour: e-mail: [email protected].

Financial resources

Support for the study came from the Research Council of the Vrije Universiteit Brussels in Belgium (project GOA27 2003-2007) and the Institute for the Promotion of Innovation by Science and Technology in Flanders as a Strategic Basic Research project (SBO) (contract SBO IWT 050158) (2006–2010), as part of the ‘Monitoring Quality of End-of-Life Care (MELC) Study’. The Belgian Sentinel Network of GPs is supported by the Flemish Ministry for Welfare, Public Health and Family and the Direction générale de la Santé du Ministère de la Communauté Française. This study was also realized by a research grant Emmanuel van der Schueren from the Vlaamse Liga tegen Kanker.

Ethics committee

The study was approved by the Ethical Review Board of the University Hospital of the Vrije Universiteit Brussels.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.