What do you mean by "palliative sedation"? : Pre-explicative analyses as preliminary steps towards better definitions

Abstract

Background: 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'. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome.

Method: Pre-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.

Results: 29 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.

Conclusion: Current 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.

Keywords: Conceptual analysis; Empirical research; End-of-life care; Palliative care; Palliative sedation.