Abstract:Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extracti… Show more
“…The high burden imposed by palliative emergencies and poor short-term prognosis may render the patient incapable of expressing their preference. 35 Accordingly, complex collegial procedures, such as those including a third-party physician, are rare. Previous studies have emphasised that the need for timely access to palliative care teams is often unmet.…”
ObjectivesTerminally ill patients may require sedation to relieve refractory suffering. The prevalence and modalities of this practice in palliative care services remain unclear. This study estimated the prevalence of all sedation leading to a deep unconsciousness, whether transitory, with an undetermined duration, or maintained until death, for terminally ill patients referred to a home-based or hospital-based palliative care service.MethodsWe conducted a national, multicentre, observational, prospective, cross-sectional study. In total, 331 centres participated, including academic/non-academic and public/private institutions. The participating institutions provided hospital-based or home-based palliative care for 5714 terminally ill patients during the study.ResultsIn total, 156 patients received sedation (prevalence of 2.7%; 95% CI, 2.3 to 3.2); these patients were equally distributed between ‘transitory’, ‘undetermined duration’ and ‘maintained until death’ sedation types. The prevalence was 0.7% at home and 8.0% in palliative care units. The median age of the patients was 70 years (Q1–Q3: 61–83 years); 51% were women and 78.8% had cancers. Almost all sedation events occurred at a hospital (90.4%), mostly in specialised beds (74.4%). In total, 39.1% of patients were unable to provide consent; only two had written advance directives. A collegial procedure was implemented in 80.4% of sedations intended to be maintained until death. Midazolam was widely used (85.9%), regardless of the sedation type.ConclusionsThis nationwide study provides insight into sedation practices in palliative care institutions. We found a low prevalence for all practices, with the highest prevalence among most reinforced palliative care providers, and an equal frequency of all practices.
“…The high burden imposed by palliative emergencies and poor short-term prognosis may render the patient incapable of expressing their preference. 35 Accordingly, complex collegial procedures, such as those including a third-party physician, are rare. Previous studies have emphasised that the need for timely access to palliative care teams is often unmet.…”
ObjectivesTerminally ill patients may require sedation to relieve refractory suffering. The prevalence and modalities of this practice in palliative care services remain unclear. This study estimated the prevalence of all sedation leading to a deep unconsciousness, whether transitory, with an undetermined duration, or maintained until death, for terminally ill patients referred to a home-based or hospital-based palliative care service.MethodsWe conducted a national, multicentre, observational, prospective, cross-sectional study. In total, 331 centres participated, including academic/non-academic and public/private institutions. The participating institutions provided hospital-based or home-based palliative care for 5714 terminally ill patients during the study.ResultsIn total, 156 patients received sedation (prevalence of 2.7%; 95% CI, 2.3 to 3.2); these patients were equally distributed between ‘transitory’, ‘undetermined duration’ and ‘maintained until death’ sedation types. The prevalence was 0.7% at home and 8.0% in palliative care units. The median age of the patients was 70 years (Q1–Q3: 61–83 years); 51% were women and 78.8% had cancers. Almost all sedation events occurred at a hospital (90.4%), mostly in specialised beds (74.4%). In total, 39.1% of patients were unable to provide consent; only two had written advance directives. A collegial procedure was implemented in 80.4% of sedations intended to be maintained until death. Midazolam was widely used (85.9%), regardless of the sedation type.ConclusionsThis nationwide study provides insight into sedation practices in palliative care institutions. We found a low prevalence for all practices, with the highest prevalence among most reinforced palliative care providers, and an equal frequency of all practices.
“…In addition, experts were invited at each stage of the consensus procedure to propose additional references. As additional outcomes of the PalSed project two systematic reviews of prospective studies, 2 , 17 a review on monitoring 18 and a review of European guidelines on palliative sedation 12 were published. However, due to the workflow of the PalSed project the literature identified in these reviews was only available during step 2 and 3 of the Delphi process and were then implemented in the document.…”
Section: Methodsmentioning
confidence: 99%
“…More recently, a new terminology has been suggested, introducing the term ‘intentional sedation’, focussing on the causal role (intention to sedate) of the clinical action (sedation). 17 Even though new research on palliative sedation has been published, 2 , 17 , 18 issues such as the complexity of assessing refractory symptoms 14 , 19 or the differentiation between somatic, psychological and existential suffering 14 remain under discussion. In addition, a recent systematic review showed an underlying need to emphasise the principle of proportionality in palliative sedation practice with regard to the patient’s individual situation, considering the continuum from light to deep and from intermittent to continuous sedation.…”
Background: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. Setting: European. Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.
“…High-quality clinical research on palliative sedation is limited [7,8,28]. Moreover, research on the decision-making process and guidelines before administering palliative sedation differ substantially across institutions, partly due to ambiguous and variable terminology [7,16,29,30]. If palliative sedation is considered and judged to be adequate and feasible by the treating physician and the multi-professional team, consultation with a palliative care specialist is strongly recommended whenever feasible.…”
Palliative sedation is defined as the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) to relieve the burden of otherwise intractable suffering in a manner ethically acceptable to the patient, their family, and healthcare providers. In Switzerland, the prevalence of continuous deep sedation until death increased from 4.7% in 2001 to 17.5% of all deceased in 2013, depending on the research method used and on regional variations. Yet, these numbers may be overestimated due to a lack of understanding of the term “continuous deep sedation” by for example respondents of the questionnaire-based study.
Inadequately trained and inexperienced healthcare professionals may incorrectly or inappropriately perform palliative sedation due to uncertainties regarding its definitions and practice. Therefore, the expert members of the Bigorio group and the authors of this manuscript believe that national recommendations should be published and made available to healthcare professionals to provide practical, terminological, and ethical guidance. The Bigorio group is the working group of the Swiss Palliative Care Society whose task is to publish clinical recommendations at a national level in Switzerland. These recommendations aim to provide guidance on the most critical questions and issues related to palliative sedation.
The Swiss Society of Palliative Care (palliative.ch) mandated a writing board comprising four clinical experts (three physicians and one ethicist) and two national academic experts to revise the 2005 Bigorio guidelines. A first draft was created based on a narrative literature review, which was internally reviewed by five academic institutions (Lausanne, Geneva, Bern, Zürich, and Basel) and the heads of all working groups of the Swiss Society of Palliative Care before finalising the guidelines.
The following themes are discussed regarding palliative sedation: (a) definitions and clinical aspects, (b) the decision-making process, (c) communication with patients and families, (d) patient monitoring, (e) pharmacological approaches, and (f) ethical and controversial issues. Palliative sedation must be practised with clinical and ethical accuracy and competence to avoid harm and ethically questionable use. Specialist palliative care teams should be consulted before initiating palliative sedation to avoid overlooking other potential treatment options for the patient’s symptoms and suffering.
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