Palliative Medicine http://pmj.sagepub.com/
Physician-reported practices on continuous deep sedation until death: A descriptive and comparative study Evangelia (Evie) Papavasiliou, Kenneth Chambaere, Luc Deliens, Sarah Brearley, Sheila Payne, Judith Rietjens, Robert Vander Stichele, Lieve Van den Block and on behalf of EURO IMPACT Palliat Med published online 9 April 2014 DOI: 10.1177/0269216314530768 The online version of this article can be found at: http://pmj.sagepub.com/content/early/2014/04/09/0269216314530768
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PMJ0010.1177/0269216314530768Palliative MedicinePapavasiliou et al.
research-article2014
Original Article
Physician-reported practices on continuous deep sedation until death: A descriptive and comparative study
Palliative Medicine 1–10 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314530768 pmj.sagepub.com
Evangelia (Evie) Papavasiliou1, Kenneth Chambaere2, Luc Deliens2,3, Sarah Brearley1, Sheila Payne1, Judith Rietjens2, Robert Vander Stichele4 and Lieve Van den Block2; on behalf of EURO IMPACT
Abstract Background: Research on continuous deep sedation until death has focused on estimating prevalence and describing clinical practice across care settings. However, evidence on sedation practices by physician specialty is scarce. Aims: To compare and contrast physician-reported practices on continuous deep sedation until death between general practitioners and medical specialists. Design/participants: A secondary analysis drawing upon data from a large-scale, population-based, retrospective survey among physicians in Flanders, Belgium in 2007. Symptom prevalence and characteristics of sedation (drugs used, artificial nutrition and hydration administered, intentions, and decision-making) were measured. Results: Response rate was 58.4%. The frequency of continuous deep sedation until death among all deaths was 11.3% for general practitioners and 18.4% for medical specialists. General practitioners reported significantly higher rates of severity and mean intensity of pain, delirium, dyspnea, and nausea in the last 24 h of life for sedated patients and a higher number of severe symptoms than medical specialists. No differences were found between groups in the drugs used, except in propofol, reported only by medical specialists (in 15.8% of all cases). Artificial nutrition and hydration was withheld or withdrawn in 97.2% of general practitioner and 36.2% of medical specialist cases. Explicit life-shortening intentions were reported by both groups (for 3%–4% of all cases). Continuous deep sedation until death was initiated without consent or request of either the patient or the family in 27.9% (medical specialists) and 4.7% (general practitioners) of the cases reported. Conclusion: Considerable variation, often largely deviating from professional guidelines, was observed in physician-reported performance and decision-making, highlighting the importance of providing clearer guidance on the specific needs of the context in which continuous deep sedation until death is to be performed. Keywords Continuous deep sedation until death, end-of-life care, clinical practice, decision-making, general practitioners, medical specialists
What is already known?
• Continuous deep sedation until death (CDSUD) is an increasingly prevalent medical practice. • Clinical characteristics of CDSUD vary between care settings.
What this study adds?
• Considerable variation in self-reported clinical performance and decision-making on CDSUD is also evident between physician specialties.
1International
Observatory on End of Life Care, Lancaster University, Lancaster, UK 2End-of-life Care Research Group, Vrije Universiteit Brussel & Ghent University, Brussels, Belgium 3Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
4Heymans
Institute of Pharmacology, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium
Corresponding author: Evangelia (Evie) Papavasiliou, International Observatory on End of Life Care, Lancaster University, Lancaster LA1 4YT, UK. Email:
[email protected]
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Palliative Medicine • Wide deviations from professional guideline recommendations could indicate either poor, inadequately performed practice or conceptual confusion and misinterpretation of CDSUD. Implications for practice, theory, or policy
• Providing clearer guidance on the specific needs of the context (be it in home or hospital care) in which continuous deep sedation is to be performed is imperative. • Further monitoring of sedation practices as well as compliance to domestic guidelines introduced in Belgium in 2010 is deemed necessary.
Introduction Continuous deep sedation until death (CDSUD) in the context of palliative medicine has been introduced, as an intervention of last resort,1,2 to adequately relieve otherwise intractable suffering3–5 by inducing a total loss of awareness (unconsciousness6/coma7) in terminally ill patients expected to die within hours or days,8 but not intentionally causing or hastening death.9–11 This can be achieved via the use of sedative medications, being frequently accompanied by the withdrawal or withholding of artificial nutrition and hydration (ANH),2 and can be physician-instigated with the consent of a competent patient or in the patient’s best interest if incapacitated.12 Despite becoming increasingly prevalent,13–15 the extent to which this form of sedation is medically indicated and ethically acceptable remains under question.16 In 2001–2002, a large-scale death certificate study across six European countries reported a prevalence rate of CDSUD ranging from 2% to 9% of all deaths, the estimated incidence for Belgium being 8.2%.17 A follow-up study in 2007 found that this incidence increased to 14.5% and also reported that the clinical characteristics of the practice differed between care settings and seemed to deviate from internationally proposed guidelines and recommendations.15 The results suggested that CDSUD might sometimes be inadequately performed and highlighted the need for the implementation of official clinical guidelines. Although care setting has been examined as an important factor for the practice of CDSUD in a number of Belgian studies,15,18,19 little is known about the differences in clinical practice between general practitioners (GPs) and medical specialists (MSs). This study is the first to address and explore such differences, the following research questions being addressed: Are there differences between GPs and MSs in (1) the clinical practice of CDSUD, that is, frequency, duration of sedation, drug administration, use of ANH, and intensity, severity and number of symptoms in the last 24 h of life, and (2) decision-making processes, that is, physicians’ intentions, alternatives to sedation, and decision-making with patient and family.
Methods Study design This is an exploratory secondary analysis using data from a large-scale, population-based survey conducted in
Flanders, the Flemish-speaking part of Belgium with approximately 6 million inhabitants and 55,000 deaths per year. A stratified random sample of deaths (n = 6927) was drawn by the central administration authority of death certificates, the Flemish Agency for Care and Health. Deaths of Belgian residents between June and November 2007 were assigned to four strata based on the underlying cause of death and the corresponding estimated likelihood of an end-of-life practice. The sampling fractions of the strata increased with increasing likelihood of an end-of-life practice. A five-page questionnaire was sent to the attending physician of each sampled death, along with an accompanying letter which explained the study. Response was regarded as implicit consent to participate. Total anonymity of participating physicians and deceased patients was guaranteed through a rigorous mailing procedure involving a lawyer as intermediary between physicians and researchers. Details of the study methodology have been described extensively elsewhere.20
Questionnaire The short questionnaire used, thoroughly analyzed and tested by a panel of physicians to correct for any imperfections or ambiguities, initially asked for the physician’s specialty (GP or MS), followed by structured key questions (identical to those addressed in earlier studies21,22) on the performance of various end-of-life practices. With respect to CDSUD, reporting physicians were asked “Was the patient continuously and deeply sedated until death by the use of one or more drugs?” The classification term (CDSUD) was employed instead of other terms encountered in the literature of sedation (i.e. palliative or terminal sedation) to avoid misunderstanding and interpretation differences among respondents.23 Reporting physicians were also asked to rate the intensity of symptoms occurring in the last 24 h of life on a scale from 0 (symptom not present) to 10 (worst possible symptom). In this study, physical symptoms only (i.e. pain, dyspnea, drowsiness, delirium, and nausea) were included, whereas psychological symptoms (i.e. tiredness, depression, anxiety, and well-being) were ruled out, their reporting being considered too prone to subjectivity once rated by proxies and not the patients themselves. This conforms to
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Papavasiliou et al.
Ques onnaires Sent Out N=6927
Exclusion Criteria: Inability to access pa ent medical record Inability to access pa ent id N=725 Eligible cases: N=6202
Responses Received N=3623 Response rate: 3623/6202 = 58.4%
Exclusion Criteria: Deaths not preceded by con nuous deep seda on un l death N=3062 Cases of con nuous deep seda on un l death iden fied N=561
Con nuous deep seda on ini ated in the last 24h of life N=133
Con nuous deep seda on ini ated more than 24h before death N=428 (Cases used for symptom assessment)
Figure 1. Flowchart of questionnaire response rate and case selection process.
what guidelines for the use of symptom management tools recommend (see Edmonton Symptom Assessment System (ESAS)).24 Symptoms were treated as outcome measures to assess effectiveness of sedation, and thus, in the analyses involving symptoms, cases in which CDS was initiated less than 24 h before death were excluded. Level of unconsciousness (comatose), though not a symptom, was added to outcome measures to assess the degree of the patient’s awareness during the practice. Additional questions about CDSUD explored issues such as duration, drug administration, administration of ANH, physicians’ intentions, alternatives to sedation, and decision-making with patient and family.
Ethical approval
Statistical analyses
Of the 6927 questionnaires sent out, 3623 were completed and returned (Figure 1). A total of 725 cases were excluded due to the inability to identify the patient or to access their medical record, forming a final response rate of 58.4% (3623/6202). A total of 561 unweighted cases of CDSUD were recorded, 428 of which had been initiated more than 24 h before death. The frequency of CDSUD among all deaths was 11.3% for GPs and 18.4% for MSs, with GPs initiating sedation more than 24 h before death in 75% and MSs in 66.4% of all cases (respective frequency: 8.5% and 12.2%). GPs cared for 292 patients, the majority being female (63.9%), and almost half aged over 80 years (48.1%) (Table 1). MSs cared for 269 patients, of an approximately equal sex ratio, most of them aged 65–79 years (40.9%). Malignancies were reported as the primary cause of death by both groups (49.7% and 30.7%, respectively).
Data were weighted to correct for the disproportionate stratification based on underlying causes of death. The influence of non-response was subsequently checked, and data were weighted to be representative for all deaths in 2007 for cause of death, age, sex, month of death, and place of death. Descriptive statistics (valid percentages and 95% confidence intervals) as well as multivariate association statistics using SPSS version 20.0 were employed for data analysis. The level of statistical significance was set at p80 Sex Male Female Cause of death Malignancies Cardiovascular disease Respiratory disease Disease of the nervous system Other diseases
p value Medical specialists (n = 269)
N
%
N
%
N
%
152 220 189
23.0 38.7 38.3
68 115 109
17.5 34.4 48.1
84 105 80
26.0 40.9 33.0
278 283
46.5 53.5
134 158
36.1 63.9
144 125
52.0 48.0
361 56 41 22 81
37.3 25.2 11.7 4.2 21.6
220 18 10 14 30
49.7 18.8 5.5 6.1 19.9
141 38 31 8 51
30.7 28.7 14.9 3.2 22.5
Chi2 0.002
