Abstract

BackgroundSedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the ‘data problem’, and 2) relevant for an ethically legitimate characterisation of the practice, the ‘problem of ethical pre-emption’. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome.MethodPre-explicative analyses: (A) systematic literature search for guidelines on sedation in palliative care and systematic decomposition of the definitions of the practice in these guidelines; (B) logical distinction of different ways through which the two problems reported might be caused by definitions; and (C) analysis of how content of the definitions contributes to the problems reported in these different ways.Results29 guidelines from 14 countries were identified. Definitions differ significantly in both structure and content. We identified three ways in which definitions can cause the ‘data problem’ – 1) different definitions, 2) deviating implicit concepts, 3) disagreement about facts. We identified two ways to cause the problem of ethical pre-emption: 1) explicit or 2) implicit normativity. Decomposition of definitions linked to the distinguished ways of causing the conceptual problems shows how exactly single parts of definitions can cause the problems identified.ConclusionCurrent challenges concerning empirical research on sedation in palliative care can be remediated partly by improved definitions in the future, if content and structure of the used definitions is chosen systematically. In addition, future research should bear in mind that there are distinct purposes of definitions. Regarding the ‘data problem’, improving definitions is possible in terms of supplementary information, checking for implicit understanding, systematic choice of definitional elements. ‘Ethical pre-emption’, in contrast, is a pseudo problem if definitions and the relationship of definitions and norms of good practice are understood correctly.

Highlights

  • Sedation in palliative care is frequently but controversially discussed

  • We found a newer guideline from Japanese Society for Palliative Care (Japan) [54] that is available in Japanese only and used the older translation by [50] because of that

  • “reduced consciousness” is the only content shared by all definitions analysed. This finding contrasts with the statement in the latest systematic review on guidelines, according to which “Palliative sedation was defined in analogous ways in all guidelines, that is, as an intervention instituted solely for the purpose of refractory symptom control” [60, p. 225]

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Summary

Introduction

Sedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the ‘data problem’, and 2) relevant for an ethically legitimate characterisation of the practice, the ‘problem of ethical pre-emption’. Sedation in palliative care is frequently and, simultaneously, controversially discussed, for example, regarding the indication, safety or justification compared to other end-of-life measures [1,2,3,4]. The problem with defining sedation practices and the existence of heterogeneous definitions has been criticised repeatedly in the light of associated problems relevant for good practice and research [5,6,7,8]. The vagueness of definitions and their variety are considered as contributing causes for this [9, 12], [13], [p. 2, 6]

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