Measuring attitudes towards the dying process: A systematic review of tools

Background: At the end of life, anxious attitudes concerning the dying process are common in patients in Palliative Care. Measurement tools can identify vulnerabilities, resources and the need for subsequent treatment to relieve suffering and support well-being. Aim: To systematically review available tools measuring attitudes towards dying, their operationalization, the method of measurement and the methodological quality including generalizability to different contexts. Design: Systematic review according to the PRISMA Statement. Methodological quality of tools assessed by standardized review criteria. Data sources: MEDLINE, PsycINFO, PsyndexTests and the Health and Psychosocial Instruments were searched from their inception to April 2017. Results: A total of 94 identified studies reported the development and/or validation of 44 tools. Of these, 37 were questionnaires and 7 alternative measurement methods (e.g. projective measures). In 34 of 37 questionnaires, the emotional evaluation (e.g. anxiety) towards dying is measured. Dying is operationalized in general items (n=20), in several specific aspects of dying (n=34) and as dying of others (n=14). Methodological quality of tools was reported inconsistently. Nine tools reported good internal consistency. Of 37 tools, 4 were validated in a clinical sample (e.g. terminal cancer; Huntington disease), indicating questionable generalizability to clinical contexts for most tools. Conclusion: Many tools exist to measure attitudes towards the dying process using different endpoints. This overview can serve as decision framework on which tool to apply in which contexts. For clinical application, only few tools were available. Further validation of existing tools and potential alternative methods in various populations is needed.