Continuous Deep Sedation Until Death in Belgium: A Nationwide Survey FREE

In recent years much debate has focused on the practice of continuous deep sedation until death and its acceptability on an ethical level. While many view its performance as part of normal medical practice, provided that particular safeguards are met, it is also believed to be a covert form of euthanasia in some cases and thus morally equivalent to euthanasia.¹ As a result, several guidelines have been issued worldwide relating to the conditions and modalities of its use.^1- 3 First, sedation should not be aimed at hastening death. The patient should be expected to die “imminently” (ie, within no more than 2 weeks) and have refractory symptoms. The continued administration of artificial nutrition or hydration is not encouraged unless the benefits outweigh the harm. Also, the use of benzodiazepines rather than opioids is recommended because the latter are known to have uncertain sedative effects and considerable adverse effects. This decision should be made with the patient or, in case of incompetence, with the family. With the exception of the Dutch national guideline issued by the Royal Dutch Medical Association in 2005 and revised in 2009,² all guidelines are unofficial expert recommendations.

Continuous deep sedation until death is becoming an ever more prevalent practice at the end of life, as was shown in several studies in (among others) the Netherlands and the United Kingdom.^4- 5 The present study reports on the evolution of the prevalence of continuous deep sedation until death in Flanders, Belgium, between 2001 and 2007. Furthermore, we investigated clinical aspects relevant to the ethical debate surrounding the practice.

In 2007, we repeated a large-scale death certificate study in Flanders, Belgium (approximately 55 000 deaths per year), last conducted in 2001.⁶ Questionnaires were sent to the reporting physicians of a representative sample of death certificates received by the Flemish Agency for Care and Health between June 1 and November 30, 2007. Details of the study design have been published elsewhere.⁷ The questionnaire asked about the performance of various end-of-life practices. The following question, identical to the one in the 2001 study, was posed regarding continuous deep sedation: “Was the patient continuously and deeply sedated until death by the use of one or more drugs?” We used a description of the practice (continuous deep sedation until death) rather than a term (palliative or terminal sedation) to avoid interpretation differences among respondents. Additional questions, not posed in 2001, inquired about the drugs used, the duration of sedation, administration of artificial nutrition or hydration, decision making with patient and family, possible alternatives to sedation for the treatment of symptoms, and the physician's life-shortening intentions in the performance of sedation.

We received questionnaires for 3623 of the 6927 initial cases. From nonresponse analyses, we found that for 725 cases response was not possible owing to issues of access to the patient's medical file or patient identification. These cases were removed from the sample, and the response rate was 58.4%. Cases were weighted to be representative of all deaths in Flanders in 2007. The response rate in 2001 was 58.9%.

The overall prevalence of continuous deep sedation until death increased significantly between 2001 and 2007 from 8.2% to 14.5%, and this increase occurred in all care settings, among both sexes, in all age groups, and in patients with various causes of death (Table 1). Opioids were used for sedation in 83%, often as the sole drug, especially in care homes. Sedation rarely lasted longer than 1 week. Artificial nutrition or hydration was withheld in most cases at home and in care homes, while 63% of sedated hospital patients received artificial nutrition and hydration until death. In one-fifth of all sedated patients (and 27% of sedated hospital patients), neither patient nor family had given consent for sedation. The patient had requested or consented to sedation in 53% of sedation cases at home, while the family had at least given consent in 78% of cases in care homes. There was a (co)intention to hasten death in 17% of cases, and the physician indicated the lack of alternatives to sedation in 82% (Table 2).

The increase of continuous deep sedation across all care settings and patient groups indicates its generally rising acceptance as a medical end-of-life practice. This is likely related to recent developments in the implementation and organization of palliative care in Belgium, partly instigated by a law on palliative care in 2002.⁸ Still, the increase in Flanders is striking and raises further questions. Other factors presumably influenced the increase. Although euthanasia is legal in Belgium since 2002, it is possible that some physicians and patients view continuous deep sedation as a psychologically and medically preferable alternative to euthanasia. The effects of institutional policy can also be taken into account, since many Belgian hospitals introduced additional safeguards to the legal requirements for euthanasia,⁹ possibly causing continuous deep sedation to be favored above euthanasia as a last resort decision. Or perhaps physicians are now simply more willing to report the performance of deep sedation because of the legalization of euthanasia. Lastly, it could also be that physicians prefer to sedate a patient until death rather than deal with a multitude of persistent but nonetheless nonrefractory symptoms.¹⁰ Further (qualitative) research is needed to investigate these hypotheses.

Clinical characteristics of continuous deep sedation differ between settings and show aberrations from internationally proposed guidelines and recommendations: opioids are frequently used as the sole drug (especially in care homes), patient or family consent is often lacking (especially in hospital), and sedation is often performed with an intention to hasten death (especially at home). Furthermore, in some cases alternatives to sedation had been possible for the treatment of symptoms. These results suggest that continuous deep sedation may sometimes be inadequately performed and ethically questionable and lead us to conclude that the formulation of an official clinical guideline is recommended for Belgium, most likely for other countries as well. The advantages of such a guideline have been demonstrated in the Netherlands, where recent research showed that the national guideline's instructions had been increasingly applied since its introduction in 2005.¹¹ It is, however, also clear from this research in the Netherlands that more is needed than mere implementation of a guideline to raise physicians' awareness for adequate sedation: training and knowledge dissemination—with specific focus points for each setting—are equally necessary.

In conclusion, the prevalence of continuous deep sedation increased considerably in Flanders, Belgium, between 2001 and 2007, across care settings and among various patient groups. More research is needed to assess the plausibility of the uttered explanatory hypotheses. Our findings further point to the need for the implementation of a clinical practice guideline in Belgium, since Belgian physicians do not seem to be familiar with existing international recommendations.

Correspondence: Mr Chambaere, End-of-Life Care Research Group, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussel (Jette), Belgium (kchambae@vub.ac.be).

Author Contributions:Study concept and design: Chambaere, Bilsen, Cohen, Onwuteaka-Philipsen, Mortier, and Deliens. Acquisition of data: Chambaere and Cohen. Analysis and interpretation of data: Chambaere, Bilsen, Cohen, Rietjens, Onwuteaka-Philipsen, Mortier, and Deliens. Drafting of the manuscript: Chambaere, Bilsen, and Cohen. Critical revision of the manuscript for important intellectual content: Chambaere, Bilsen, Cohen, Rietjens, Onwuteaka-Philipsen, Mortier, and Deliens. Statistical analysis: Chambaere and Cohen. Obtained funding: Cohen, Mortier, and Deliens. Study supervision: Bilsen, Cohen, Onwuteaka-Philipsen, Mortier, and Deliens.

Financial Disclosure: None reported.

Additional Contributions: The Flemish Agency for Care and Health provided the information in the death certificates and coordinated the mailing of the questionnaires; Wim De Brock (lawyer) processed and made anonymous the received questionnaires (financial compensation received from project researchers), and Geert Pousset, MA, assisted in conducting the data collection. We are deeply indebted to all physicians who provided the data for this study.