Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties

Nuriye Kupeli, Bridget Candy, Gabrielle Tamura-Rose, Guy Schofield, Natalie Webber, Stephanie E. Hicks, Theodore Floyd, Bella Vivat, Elizabeth L. Sampson, Patrick Stone, Trefor Aspden

Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited. This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death. We conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this systematic review has been registered on PROSPERO (CRD42016047296). The search identified 4751 studies. Of these, 33 met the inclusion criteria, reporting on the psychometric properties of 67 tools. These tools measured quality of care at the end of life (n = 35), quality of dying and death (n = 22), or both quality of care at the end of life and dying and death (n = 10). Most tools were completed by family carers (n = 57), with some also completed by healthcare professionals (HCPs) (n = 2) or just HCPs (n = 8). No single tool was found to be adequate across all the psychometric properties assessed. Two quality of care at the end of life tools-Care of the Dying Evaluation and Satisfaction with Care at the End of Life in Dementia-had strong psychometric properties in most respects. Two tools assessing quality of dying and death-the Quality of Dying and Death and the newly developed Staff Perception of End of Life Experience-had limited to moderate evidence of good psychometric properties. Two tools assessing both quality of care and quality of dying and death-the Quality Of Dying in Long-Term Care for cognitively intact populations and Good Death Inventory (Korean version)-had the best psychometric properties. Four tools demonstrated some promise, but no single tool was consistent across all psychometric properties assessed. All tools identified would benefit from further psychometric testing.