Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol

Abstract

BackgroundSedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials.According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation.Methods and designA multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication.DiscussionWe have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences.

International variations in clinical practice guidelines for palliative sedation: a systematic review

“…We removed duplicates, review papers, case studies, commentaries, position statements and frameworks 1 28. Next, we excluded guidelines from France, Sweden and Switzerland29–31 because none of the authors could adequately assess them based on the author's first language 25. A summary of this selection process is presented in online supplementary table S1.…”

“…To circumvent this, the European Association of Palliative Care (EAPC) has developed a broad Framework to guide policy and facilitate the development of high-quality local procedural guidelines. It incorporates themes that are grounded in the available literature and guidelines and internally supported by experts from the palliative care community across Europe 1 25. The aim of this systematic review is to identify and compare national and regional clinical practice guidelines on palliative sedation against the EAPC's recommended Framework.…”

Palliative sedation: Clinical practice challenges in Mexico and development of a national protocol for Mexico

“…11 The protocol included in the supplement further contextualizes the practice within the clinical framework in Mexico, where not all medications that have been traditionally suggested for PS are readily available. We propose use of this algorithm and associated documentation for monitoring and consent form based on best available evidence [4][5][6]11,13 …”

“…Recent efforts have focused on developing more current and updated algorithms for symptom management 5 and standardized approaches to PS based on existing studies and guidelines. 6 Palliative sedation is a therapeutic option to relieve refractory symptoms in imminently dying patients with terminal disease. While there is no uniform definition of 'terminal' in the application of PS, most guidelines and many institutional protocols state that patients who receive PS must be 'imminently' terminal, with some implying that death should be expected in hours to days.…”

In-service documentation tools and statements on palliative sedation in Germany—do they meet the EAPC framework recommendations? A qualitative document analysis

“…In the meantime, these (inter-)national guidelines, position statements, and the related literature on PS recommendations have been investigated, in order to evaluate its content and methodological quality (26,27). Gurschick et al compared several published guidelines on PS from different medical societies and found variances considering definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis throughout these guidelines (28).…”