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Palliative Sedation in Flemish Palliative Care Units
Vol. 41 No. 6 June 2011
Journal of Pain and Symptom Management
e1
Letters
Palliative Sedation in Flemish Palliative Care Units To the Editor: In their recent publication, Claessens et al.1 found an incidence of 7.5% palliative sedation in Flemish palliative care units (PCUs). As noted by the authors themselves, this figure is fairly aberrant from findings in other studies and likely not generalizable to a broader range of deaths. Indeed, the care provided to terminally ill patients in PCUs is most likely not a mirror of care outside PCUs. One could even argue that the findings of Claessens et al. cannot be generalized to all Flemish PCUs, as the total estimated response rate is only about 14% of all PCU patients in the studied time frame. What seems particularly odd is that the incidence of 7.5% is low despite the use, according to the authors, of ‘‘a broad definition of palliative sedation’’; they included both mild-deep and continuous-intermittent sedation with or without artificial food or fluid. In our opinion, however, the authors have likely included cases of palliative sedation that fulfill only a rather narrow definition of palliative sedation. First, during case selection, no definition of palliative sedation was given to the PCUs ‘‘to prevent possible conceptual confusion between the PCUs and ensure that all possible cases of palliative sedation were included in the study.’’ This means that cases that were not perceived as palliative sedation by the nurses who selected the cases were not included in the study. It is possible that cases of palliative sedation that are more atypical, such as sedation provided with opioids or sedation provided for patients with a longer life expectancy, were not perceived as sedation and hence not reported as such. Second, after inclusion of the cases, the researchers classified the cases according Ó 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
to their definition of palliative sedation: ‘‘Palliative sedation is the intentional administration of sedative drugs in dosages and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms.’’ This is a rather narrow definition of palliative sedation because it includes criteria of careful practice (e.g., the sedation should be proportional and can only be used for refractory symptoms). Following this last point, in our opinion, it is thus not surprising that the study observed palliative sedation in only 7.5% and good practice in almost all sedation cases. In a 2007 study of palliative sedation across Flanders carried out by our research group, a rather different picture emerged.2 Not only was the detected incidence of 14.5% considerably higher, but it also was found that the practice is not always performed as carefully as the Claessens et al. publication would have us believe (as concerns, e.g., informed consent or proportional drug use). Our study was representative of all deaths in Flanders, Belgium, in 2007 using a large sample of death certificates to survey the attending physicians in all possible care settings (n ¼ 6927). We used a more descriptive definition of palliative sedation in our survey, namely ‘‘the use of one or more drugs to keep the patient deeply sedated or in a coma until death.’’ We feel it is important that research into this practice should not a priori exclude cases that are not in compliance with standard directives, as identifying ‘‘gray area practice’’ can be helpful in establishing where things may be going wrong and what can be done to improve practice. Nonetheless, we wish to congratulate the authors on their research in Flemish PCUs. Such prospective and longitudinal research is refreshing and innovative and complements large-scale retrospective studies in that it is 0885-3924/$ - see front matter
e2
able to reveal more detailed insights into the practice of palliative sedation. Kenneth Chambaere, PhD Joachim Cohen, PhD Sigrid Sterckx, PhD Freddy Mortier, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Judith A.C. Rietjens, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Department of Public Health Erasmus MC Rotterdam, The Netherlands Luc Deliens, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Department of Public and Occupational Health EMGO Institute for Health and Care Research VU University Medical Centre Amsterdam, The Netherlands doi:10.1016/j.jpainsymman.2011.03.005
References 1. Claessens P, Menten J, Schotsmans P, Broeckaert B, Palsed Consortium. A prospective, longitudinal study of sedation in Flemish palliative care units. J Pain Symptom Manage 2011;41:14e24. 2. Chambaere K, Bilsen J, Cohen J, et al. Continuous deep sedation until death in Belgium: a nationwide survey. Arch Intern Med 2010;170: 490e493.
What’s in a Name? Palliative Sedation in Belgium. Reply to Chambaere et al. To the Editor: We want to thank Chambaere and colleagues1 for their interest in our study on palliative sedation in Flemish palliative care units2 and the opportunity they have given us to clarify a number of methodological choices we made.
Letters
Vol. 41 No. 6 June 2011
Chambaere et al. suggest that the low incidence of palliative sedation (when compared to their results) could be attributed to the fact that we de facto used a rather narrow definition of palliative sedation and ‘‘a priori exclude cases that are not in compliance with standard directives.’’ In this response, we will show that this clearly is not the case and that the reasons for the indeed very different results should be sought elsewhere. Large and broad retrospective studies like the one by Chambaere et al.3 on continuous deep sedation in Flanders teach us very little about palliative sedation as it has been developed and practiced in international palliative care, very little indeed about the necessity for or avoidability of palliative sedation, the appropriate medication, the necessary or appropriate depth and length of palliative sedation, etc. The reason for this is simple: Chambaere et al. study how, in Flanders, physicians in general deal with sedation. But the problem is that the palliative care knowledge and expertise, let alone the palliative sedation knowledge and expertise, of the average physician is very limited. Most physicians have had no or very little training in palliative care or in palliative sedation. The average general practitioner treats only a few dying patients each year and is only occasionally confronted with complex refractory symptoms. In the study of Chambaere et al., opioids were used for sedation in 83% of the cases (often as the sole drug), only 30% of the cases had a request or consent of the patient, and 17% noted an explicit intention or cointention of hastening death. These data suggest indeed that what is called sedation here has little or nothing to do with palliative sedation as it is understood and has been practiced for many years by palliative care specialists. How many patients received interdisciplinary expert advice? In how many patients were refractory symptoms present? There is no published guideline that advocates the use of an opioid as the drug of choice for palliative sedation, although an opioid was used in the study of Chambaere et al. for the vast majority of the ‘‘sedated’’ patients. Many physicians probably misinterpret the somnolence of dying patients when being treated with opioids as palliative sedation. In a multicenter prospective study in 585 patients dying in six different palliative care units in Flanders, it was shown that more than 70% of dying
Journal of Pain and Symptom Management
e1
Letters
Palliative Sedation in Flemish Palliative Care Units To the Editor: In their recent publication, Claessens et al.1 found an incidence of 7.5% palliative sedation in Flemish palliative care units (PCUs). As noted by the authors themselves, this figure is fairly aberrant from findings in other studies and likely not generalizable to a broader range of deaths. Indeed, the care provided to terminally ill patients in PCUs is most likely not a mirror of care outside PCUs. One could even argue that the findings of Claessens et al. cannot be generalized to all Flemish PCUs, as the total estimated response rate is only about 14% of all PCU patients in the studied time frame. What seems particularly odd is that the incidence of 7.5% is low despite the use, according to the authors, of ‘‘a broad definition of palliative sedation’’; they included both mild-deep and continuous-intermittent sedation with or without artificial food or fluid. In our opinion, however, the authors have likely included cases of palliative sedation that fulfill only a rather narrow definition of palliative sedation. First, during case selection, no definition of palliative sedation was given to the PCUs ‘‘to prevent possible conceptual confusion between the PCUs and ensure that all possible cases of palliative sedation were included in the study.’’ This means that cases that were not perceived as palliative sedation by the nurses who selected the cases were not included in the study. It is possible that cases of palliative sedation that are more atypical, such as sedation provided with opioids or sedation provided for patients with a longer life expectancy, were not perceived as sedation and hence not reported as such. Second, after inclusion of the cases, the researchers classified the cases according Ó 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
to their definition of palliative sedation: ‘‘Palliative sedation is the intentional administration of sedative drugs in dosages and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms.’’ This is a rather narrow definition of palliative sedation because it includes criteria of careful practice (e.g., the sedation should be proportional and can only be used for refractory symptoms). Following this last point, in our opinion, it is thus not surprising that the study observed palliative sedation in only 7.5% and good practice in almost all sedation cases. In a 2007 study of palliative sedation across Flanders carried out by our research group, a rather different picture emerged.2 Not only was the detected incidence of 14.5% considerably higher, but it also was found that the practice is not always performed as carefully as the Claessens et al. publication would have us believe (as concerns, e.g., informed consent or proportional drug use). Our study was representative of all deaths in Flanders, Belgium, in 2007 using a large sample of death certificates to survey the attending physicians in all possible care settings (n ¼ 6927). We used a more descriptive definition of palliative sedation in our survey, namely ‘‘the use of one or more drugs to keep the patient deeply sedated or in a coma until death.’’ We feel it is important that research into this practice should not a priori exclude cases that are not in compliance with standard directives, as identifying ‘‘gray area practice’’ can be helpful in establishing where things may be going wrong and what can be done to improve practice. Nonetheless, we wish to congratulate the authors on their research in Flemish PCUs. Such prospective and longitudinal research is refreshing and innovative and complements large-scale retrospective studies in that it is 0885-3924/$ - see front matter
e2
able to reveal more detailed insights into the practice of palliative sedation. Kenneth Chambaere, PhD Joachim Cohen, PhD Sigrid Sterckx, PhD Freddy Mortier, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Judith A.C. Rietjens, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Department of Public Health Erasmus MC Rotterdam, The Netherlands Luc Deliens, PhD End-of-Life Care Research Group Ghent University & Vrije Universiteit Brussel Brussels, Belgium Department of Public and Occupational Health EMGO Institute for Health and Care Research VU University Medical Centre Amsterdam, The Netherlands doi:10.1016/j.jpainsymman.2011.03.005
References 1. Claessens P, Menten J, Schotsmans P, Broeckaert B, Palsed Consortium. A prospective, longitudinal study of sedation in Flemish palliative care units. J Pain Symptom Manage 2011;41:14e24. 2. Chambaere K, Bilsen J, Cohen J, et al. Continuous deep sedation until death in Belgium: a nationwide survey. Arch Intern Med 2010;170: 490e493.
What’s in a Name? Palliative Sedation in Belgium. Reply to Chambaere et al. To the Editor: We want to thank Chambaere and colleagues1 for their interest in our study on palliative sedation in Flemish palliative care units2 and the opportunity they have given us to clarify a number of methodological choices we made.
Letters
Vol. 41 No. 6 June 2011
Chambaere et al. suggest that the low incidence of palliative sedation (when compared to their results) could be attributed to the fact that we de facto used a rather narrow definition of palliative sedation and ‘‘a priori exclude cases that are not in compliance with standard directives.’’ In this response, we will show that this clearly is not the case and that the reasons for the indeed very different results should be sought elsewhere. Large and broad retrospective studies like the one by Chambaere et al.3 on continuous deep sedation in Flanders teach us very little about palliative sedation as it has been developed and practiced in international palliative care, very little indeed about the necessity for or avoidability of palliative sedation, the appropriate medication, the necessary or appropriate depth and length of palliative sedation, etc. The reason for this is simple: Chambaere et al. study how, in Flanders, physicians in general deal with sedation. But the problem is that the palliative care knowledge and expertise, let alone the palliative sedation knowledge and expertise, of the average physician is very limited. Most physicians have had no or very little training in palliative care or in palliative sedation. The average general practitioner treats only a few dying patients each year and is only occasionally confronted with complex refractory symptoms. In the study of Chambaere et al., opioids were used for sedation in 83% of the cases (often as the sole drug), only 30% of the cases had a request or consent of the patient, and 17% noted an explicit intention or cointention of hastening death. These data suggest indeed that what is called sedation here has little or nothing to do with palliative sedation as it is understood and has been practiced for many years by palliative care specialists. How many patients received interdisciplinary expert advice? In how many patients were refractory symptoms present? There is no published guideline that advocates the use of an opioid as the drug of choice for palliative sedation, although an opioid was used in the study of Chambaere et al. for the vast majority of the ‘‘sedated’’ patients. Many physicians probably misinterpret the somnolence of dying patients when being treated with opioids as palliative sedation. In a multicenter prospective study in 585 patients dying in six different palliative care units in Flanders, it was shown that more than 70% of dying